#99132 07-09-2009 06:25 PM | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 |
Over the past few weeks I have had a few sore places in my mouth from having my teeth removed. These spots had to be snipped a couple times by my oral surgeon. They never healed which made me concerned enough to have my ENT check this out. I was put on antibiotics and offered a biopsy. Immediately I knew that they must have seen something that was unusual. Of course I had the biopsy done and the results are SCC. I was shocked, just like last time. I do not feel one bit sick other than the sore mouth and a little tired.
The PET results show cancer on my top jaw but not on the bottom jawline where the biopsy was done. That isnt even large enough to light up. The good news is that this is Stage 1. This is the third time I have been diagnosed with having cancer in 3 years. Luckily, everytime it has been Stage 1.
At this point my ENT said he wants to get a plastic surgeon on board before he can even begin to set up a plan. He wants me to be ready by mid August. It will be about 2 weeks in the hospital and minimum 6 months of recovery. This can change as there are so many variables as to the extend of the cancer when he begins the operation.
I refuse to sit around and feel sorry for myself for one minute! Cancer has taken 3 summers away from me. From here on out, I am making the most of the next few weeks before this new chapter in my life begins.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Oh sh*t, Christine... I saw the note in your signature line the other day, but wasn't sure what it meant. You have no idea how sorry I am to hear this. I wish there was something meaningful that I could do to help you through this.
Crap.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I am so glad you posted this Christine, It was getting to me big time. I still don't really know what to say. But you know my mouth will move after the shock is over You are my best buddy. You actually have been since we talked the 1st time. Or pmed.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Christine - You always have the most encouraging words for everyone else in here, now we are going to give nice words back to you as you fight yet another round. My husband has had 4 rounds and we are hoping he is done, so our prayers and hopes go to you for this to be the final time you will have to deal with this monster and you can finally enjoy many summers to come! Hugs nice lady.
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Thanks for the support I appreciate it very very much!!!!! Margaret, it was so nice to meet you last year. Wish we could have had more time to chat. You amazed me by your ability to eat so soon after finishing treatments. Jim, my pal. Dont you worry...I still owe you a steak dinner! Next year after you are finished with your surgery and Im healed from this setback the steak is on me Lostpassword... Thank you so much for writing. It is so encouraging for me to see that soemone has gone thru this 4 times. Im so sorry your husband has had to do this that many times. He is proof it can be done!!!! Hope he is doing well and no more recurrances for him EVER. I wont lie, Im scared. Getting a PEG tube and a trach is going to be difficult. I hated that darn tube more than anything else in my whole life. Facing life as someone who will have disfiguring facial scars is going to be rough. The big picture is that I can and will overcome this and move on as a better person because of all this.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Christine
I am truly sorry to hear the outcome of your tests. You have had to deal with so much because of this horrid disease.
We are here for you. Fortunately your vigilance and awareness of this disease has probably put you in a very strong position of getting it under control swiftly.
The way that you have continually supported so many people on this forum since I started visiting here has been incredible. I can't see how you could become a better person than what you already are, you're a tower of strength to so many people. We are here to return the strength and support to you as you face the next challenge.
You will get through this.
Karen xx
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Well Christine - this sucks. I am very thankful it is at such an early point and that they are moving ahead fairly quickly with treatment plan. You've been there before and you will get through this - I just know you will. I feel nothing but good karma around you. You are a positive person and that (plus us of course) will help you to do what you have to do to get rid of it - AGAIN.
I remember one doctor telling me that for some people, cancer can be a "chronic" illness. You get it - take care of it - and repeat.
How grateful I am that you were on top of this. We NEED you.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hey Christine
I remember you joining this forum as if it was yesterday.The best news is that you are still here,the hardest thing must be the continual WHY ME?.This go round sounds as if it could be a tough one sweetie,and i send love,strength and guardian angels across the pond.
much love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2009 Posts: 88 | Hello Christine,
I am so sorry to read about your news but it seems you are really diligent and knowing yourself and catching it early but it really sucks to get those kind of results. I so worry about that for my daughter. My prayers are with you and please take care of yourself, I hope you have a good caregiver to help you through this round. God bless, love and luck.
Bonnie
CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Christine,
Sorry about your PET results. Good they caught so early and that you wre diligent enough to tak them to do a biopsy on the sores. You have always been so encouraging to me, when I was having my "pity party." I am actually doing a lot better now. We are going to deal with whatever life throws at us and hit it head on. You have and will continue to be an inspiration to me. I will praying for you.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Christine,
Sorry for the bad news but it's good that it was caught this early. You are a great supporter to everyone on this site and you know we are all there with you.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Oh Christine, I'm so, so sorry to hear about your recurrance. You help so many others and have been so quick to answer my questions and just offer encouragement and support when we needed it most. I'm glad you went and it was caught as soon as possible. I will keep you in my prayers and so admire your positive attitude. Sending you a HUGE HUG.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Christine,
I can't say anything that hasn't already been said. I just want you to know that your in my thoughts and prayers.
Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | Crap. It's good, of course, that it was caught early. I will be thinking of you.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Damn Christine, I don't believe this is happening to you again. I am so sorry you have to go through this again. Will they also do radaiton this time?
I know the feeling about having given up the summer for an illness. Do try to enjoy the time before your surgery. We're all pulling for you.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Christine my dear....you know how I feel about this...it stinks. But you are right stage 1 is good and you can do this. Like I told you via PM...whatever you need you let me know. I'm close enough to you and I will go to appointments...take you to and home from the hospital. Whatever you need...you are not going through this alone.
you are always in my thoughts and prayers
love
Suzanne
xoxo
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Christine....I can't believe this news!What crap! Hang in there kiddo....you can do this. You were one of the first to welcome me to this forum and I always watch for your posts. You will be in my thoughts and prayers.
Cheryl
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Christine,
Do you remember our phrases over the years. "2008 everything will be great!" Then, "2009 all will be fine!" I guess the one we really have to focus on is "2010, never AGAIN!".
I know you have what it takes to fight this, I'm just sorry you are put to the test yet one more time. Stupid, stupid cancer!!
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Christine ..I am so sorry to read the news that you are now going through this for the 3rd time.
There are many friends here for you and we will be sharing this journey with you as you do with so many of us.
Take care of yourself
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Christine,
You have the support to get through this!! And you will!!
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Christine,
I am struggling with how to respond to this latest news in your life...ugh...I can't believe you have to fight this monster again.
The thing that I do know is that you have the spirit to get thru this. You, of course, know that your buddies here on OCF will stay the course and be here to listen and send help your way when you need it.
Sending hugs...
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Fellow Margaret, I love it... 2010, never AGAIN! Brilliant 
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Christine,
Since our PMs the other day, I have been watching for your post. You know that I am here for you along with everyone else on this forum.
Have as much fun as you can, for as long as you can!
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Christine
Third time is just too hard. It's unfair. I don't know why some of us have to get treated like Job in the bible although I pray it all turns out well in the end (like Job). sorry but I can't think of anything cheerful nor inspirational. I don't think anyone who has not had a recurrence can truly appreciate what you are going through nor how hard it is. You amaze me with your strength and courage. As I have been posting recently on cancer survivor articles, I am sick and tired of the tyranny of positive thinking that permeates most of the public's comments and attitude towards cancer. Yes, we need to do what we need to do, but let's not minimize the real pain and horror we are enduring. This is terrible news.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | I'm so sorry to read about this, Christine. We'll all be keeping you in our thoughts.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | To all my OCF pals.... THANKS!!!!!!!!!!!!!!!!!!!!!I greatly appreciate every single one of you and your posts. It really will be ok. I know this. If its not ok, thats ok too. Guess that sounds kind of odd. After going thru this already twice and facing a huge surgery I understand the outcome is not in my control. I will put my complete trust in my doctors. Of course, I will lean on everybody here to keep me focused and upbeat. I spent the past couple days trying to get my head straight about all this. I have a game plan in place and also a backup plan too. Then of course, I set up the final plan for if the worst happens. I have about a month to prepare and tons of things to do. Along with my plans, I still will continue with my normal routine as much as I possibly can. I will get the surgery, recover and move on with my life. My new motto is 2010...NEVER AGAIN!!!!!!!!! Thanks Margaret
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Lean away whenever you feel like it .. 
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Sorry to read that you've got it again, but glad to read that you found it early. I can see that you are approaching it all with the right attitude.
Be sure to get a good PEG!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | You are one GREAT COOKIE in the big bag of life Christine!!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Christine...you ROCK!!! I just know you can do it. As Gabe says...lean away. Don't forget..we still have a road trip and we have to stop and see Jim...:)
xoxo
(((((((((((HUGS)))))))))))))))
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | OOOOOOHHHHH....Cookies!!!! Wow I wish I could eat those David, if you can eat cookies, have a few for me. Suzanne, I sure hope we can do that road trip. I had wanted to see Patty. I miss her very much. Charm, it really really stinks, but we must do the best we can. Im a huge believer of positive thinking. I do not focus on WHY ME or wallow in self pity. Sure I have some moments where it bothers me knowing what is to come and how my life will change yet again. I cant stop and worry about this, all that does is cloud my mind so I cant make any progress or enjoy life. I prefer to make the most out of the hand I was dealt and enjoy the time I have right now. Worrying about this only steals my time and energy. I recently bought a mountain bike and rode a 26 mile trail with my son. We had a great time and I will do this again before my surgery. Pete, its nice to see you posting. How are you doing with your recovery?
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | That's awesome about your bike ride....man I need to get in shape!!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Christine,
That's great. I did not know you were into bike riding. Since I haven't seen you post before I assume your butt was/is a tad sore?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Christine
More power to you. One reason I keep returning to OCF is a very selfish one: the incredible bravery and strength that people like you demonstrate helps me fight my anger and depression over the total unfairness of it all. Don't we all wish we could have been like the celebrity chef mentioned in another forum who just sailed through treatment and has full remission?
You are right of course about the positive attitude and for the most part I am quite cheerful and count all my blessings. Plus there are positive sides of the cancer For example, I will never have to worry about my weight again and I don't have to apologize for hastily spoken words anymore
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I was gong thru thr papers on my desk. I found pattys phone number and address plus in my computer I have a lot of pms from her, I'm just gong to keep them in rembrance. I wish I could have printed out the pic of her in the Illinois Funeral home she was at. Such a beautiful personm amd what a waste of life.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | EZJim :thanks for indirectly saying what has been putting me in such a shitty mood.
Christine,
we just lost Patty and we don't want to lose you. Just knowing that someone like you, who has such an indomitable spirit and ultra positive attitude can have yet another recurrence makes me question the preventive or curative powers of mental attitude. Of course, a positive attitude does let us enjoy the time we have, whatever that may be. Our local papers have written up a story about a mother driving a van of kids whom a tree fell on and killed on a short trip from the swimming pool. Sounds trite but I know I should be grateful for the time and life I do have. People like you are truly inspirational,
Charm
Last edited by Charm2017; 07-14-2009 02:37 PM. Reason: format
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | David, I hadnt ridden a bike since I was a kid. My son got me started a few weeks ago. We went on a 9 mile ride (mostly downhill grade) so I thought it was cake and went right out and bought a bike. We next attempted the 26 mile trip which was mainly an uphill grade. I did ok til about the last 3 miles, by then I was wiped out. When I bought the bike, I invested in a padded seat and it was worth it, no sore butt Charm, I understand you very very well. This STINKS!!!! Ive been thru an awful lot already with my 2 rounds behind me. I know just last year you had gone to Italy and now here you are sick again, anyone would wonder the big question of WHY???? But we cant dwell on it or it will make us crazy. When we see things like that chef speak about it, that just makes us angry. How arrogant he was when he said 'dont you know who I am, Im a chef'. He got lucky, so far. I must just continue my life as best as I can. Im trying to cram alot of life into a short time right now. Wasting time worrying isnt helping me at all, it makes me sad and upset. Some days its real work being optimistic, then I just remind myself it sould be so much worse. Dont you even consider losing me, Im not going anywhere!!!! I will be absent for a couple weeks while Im in the hospital, but I will be back I miss Patty very much. She was so kind, level headed, witty and practical. She is watching out for all of us right along with everyone we have lost along the way. Neil, Brenda, Minnie, Lori's husband Ron, Sof, Petey and everyone else who has battled this terrible disease and suffered thru are my heros. They are the ones who inspire me. Its a beautiful evening here in PA. Im going out for a short bike ride and to play with my dogs outside. Thats how I deal with this, by finding things I enjoy doing, it helps me cope. Hope everyone has a great evening
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Christine, my recovery is moving right along at glacial speeds. Still have no swallow path and fluid builds up above and below, so I can't speak but lately I have been trying. Turns out the lack of speaking is bothering me the worst as I am normally very talkative <g>.
My daughter has just moved in with me, so I need to keep the clipboard handy at all times, not just when I have company.
It's strange how we sort of get accustomed to this 'chronic cancer'. My third round upset me the least, although the recovery time is affecting me.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Christine, Jim and Charm�Think you are all amazing and now we learn the you have taken up bike riding Christine I also miss Patty as she posted and sent PM�s and emails to encourage me. Some were not long before she passed away. Jim I downloaded the notice with the photo of Patty and will send it to you in an email. I pasted it into a word document so if you cannot read it let me know and I will send in another format. It really is a lovely photo of her and if anyone else would like it just let me know and I will email it to you. Keep up the positive thoughts Christine Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Should have including you Pete in the amazing catagory. Also glad to see you posting again 
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Pete, its good that your daughter is there with you. Hows the critters? Glad to hear you are coming along even if your progress is slow, its still progress. It sure has been a long road for you. I used a dry erase board too, and will be using it agin this time around. Gabe, how are you feeling? Hopefully better and better day by day. I saved Patty's announcement too. Its here somewhere. I still keep in touch with her friend Lisa. She was her source of support thru this til the end and even after to carry out Patty's wishes. Thanks for your support, I hope you know that I have you in my prayers too
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Christine,
Come on down to Gulfport. I'll let you draft behind me (cuts exertion down 25%) and it's mostly near flat except for those nasty speed bumps!!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I just have to say this and maybe get banned from the forums, LOL But David, the speed bumps have a name, they are called boobs LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Boobs?? Where did you come up with that?
Have you increased your meds??
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | It does sound like Jim may have increased his meds...lol Good one David:)
I think we can agree cancer stinks...being positive is hard sometimes, but needed and we have each other to lean on when the going gets tough.
We all miss sweet Patty but this is just another bump (boob if you are Jim) in the road for Christine. We will be here every step of the way. Christine, I'm serious about whatever you need. You tell me. no matter what it is. Grocery shopping, insurance companies, driving you wherever you need to go. If you prefer to do this stuff your own way I understand. But please, don't be in need of something and not ask.
You know we all love you very much!!
xoxo
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Christine, the critters are doing fine. I take them out in evening when I am getting ready for bed and put them on the bed, so they get some exercise. So far they haven't used my bed as a bathroom, but they are males so it's probably just a matter of time (Females are much better about that!). As I pour my food into the 'Roo bag, I let them lick the edge of the empty can -- They certainly seem to like it. David and Jim, here's a German Speed Bump: http://www.youtube.com/watch?v=eBDQPYcyjqs
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I'm still laughing Pete Now that is what you call a speed bump fo sure.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, after they have my plan of action or whatever and it's complete. I am going to drive to Allentown and visit you. We are good friends and a friend needs a friend.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Christine, Good to see all your friends supporting you here. If I wasn't so far away....... Thanks for your good wishes and I am getting better every day. Just over 3 weeks since surgery and I hope to finally be allowed to drive next week. I have also been lucky to have family and work collegues help out with shopping and the hospital organised someone to come in once a week to do some housework. Am kept entertained by my single female Cockatiel who laid her 4th egg this morning. Sitting on them but hope she will lose interest soon as it will not come to anything  Love Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Christine- I'm so sorry I didn't read your post sooner. I only come back here from time to time and was shocked by your news. I will call you tomorrow and try to catch you at home. I will definately come for a visit soon. Will get your address and firm up a date when I speak to you. I will be saying a special prayer for you my special friend.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Christine,
I'm so sorry to hear that this is back again. Keep up your great spirits and please do enjoy these next few weeks. My mom is now recuperating from her fourth bout of this "stuff" and I'm praying that this will be the last time either of you has to go through this. May you both get healthy and strong after this!!! Hang in there, girl!
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Christine,
You've been through so much and now to have to deal with this a 3rd time is beyond words. Thanks for all the info and support you offer this forum. Your upbeat attitude, caring answers and courage are awe-inspiring and so needed. There isn't much I can add to everyone's comments except to say thanks and tell you how very much you are appreciated. Geri
Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 |
So far my doc is planning on the big surgery towards the end of August. I still must have a consultation with the plastic surgeon. My doc also wants me to have a blood test to type match my blood in case I need it for surgery. The pre admission testing guys always love me too, with trismus they never want me to do the operations. Even without teeth I still cant open very wide. At least not right now, doc thinks that will improve after this surgery.
I still dont feel sick. I get tired more easily and my mouth hurts in the open spots sometimes. Other than that I feel fine physically. Mentally Im starting to struggle with the idea of a long road to recovery. Im not the kind to sit around and do nothing, being told 6 mo -1yr recovery makes me nervous. Im not much of a tv person, I would rather work outside around the house. Even when reading books, I have a hard time relaxing and keep thinking about what I need to do.
I wish I had a fast forward button to go to bed one night and wake up and its 2010.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | You're gonna be fine. Don't think too far ahead and you'll be ok. Take one day at a time because that's all any of us really have anyway. You are a tough lady and that will serve you well-that and all the prayers people will be sending your way. Many love you and care about you!!!!
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Christine, What you are dealing with is normal and you are handling it beautifully. That is a long time for healing so I understand your struggling. I wish you could sleep through it too!! Wouldn't that be nice? As always, you have my support and I think of you all the time. Maybe when your starting to feel a little stronger after the surgery I will come and take you for a drive or to a movie....we'll get you out of the house:) The longest I've had to recover is about a month and I couldn't stand that and I'm a T.V person. I will put my thinking cap on for some good ideas. What about knitting, do you do that? As you know.....please don't hesitate to let me know if you need ANYTHING. Love, Suzanne
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | With all the crap you've had to put up with and they are just getting around to find out your blood type???
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Tomorrow is my CT scan. Im a bit nervous about it which isnt like me. This will tell my doc how much of my jaw he needs to remove. The top is where the PET scan indicated cancer, but the biopsy also showed it in the bottom. Today was a sad day, but also good at the same time. I feel very fortunate to have gotten to meet several OCF members in person. Last year I met Suemarie and her husband Neil at Susan Lauria's walk in honor of her brother David. Today Sue came to visit. Her mother is taking my beloved dogs either for good or until I am recoverd enough to care for them again. To me, that is a true friend, helping someone when they are down. It was very nice talking with Sue today, I cant say thank you enough to her. Now if only somebody would buy my house
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Christine
I just want to let you know that I will be thinking of you tomorrow and hoping for the best possible outcome from your scan.
I'm very sorry that you are unable to keep your dogs during your treatment but once you have recovered from this beast you will be able to be reunited with them again. Sue and her family must be very caring people, so your dogs are in good hands.
Also, during my jaw operation I lost alot of blood and was given 1 unit of blood and then the next couple of days following the surgery I was given another 2 units of blood.
Stay strong
Karen ((Hugs))
Last edited by Karen Rose; 07-26-2009 07:22 PM.
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Good luck with your scan! Scans are about the easiest things in cancer treatment to endure.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Christine,
Good luck tomorrow. I'll be thinking of you.
We all knew that Sue and Neil were special people when we met them last year. Just goes to show that we were right.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Best of luck with your scans tomorrow. My mom called before and said all her cats came in to welcome the new additions and everyone got along well. I'm not a small dog person but I think I'm falling for Peanut. She's a momma's girl!!
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Christine
You have every right to be concerned about the scan. Let's hope for the very best. I am amazed at the love and caring on OCF as demonstrated by suemarie and her mother taking care of your dogs. At least that is one less thing to worry about.
I am finishing up reading "Why Bad Things Happen to Good People". While I liked the beginning and its exegesis of the Book of Job, not sure about its conclusions. All I do know is that very bad things do happen to very good people who do not deserve such suffering. I can only hope I can muster a fraction of your fortitude and spirit if I face round 3. You consistently demonstrate personal courage, faith, and a continued zest for life despite facing more than most people could bear. You are in my thoughts and prayers
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Waiting to hear your scan results....my prayers are with you.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Thinking of you today, Christine!
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Christine,
I'm thinking about you today. I understand why you are nervous. I will be looking for your post to see what they say.
xoxo
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Christine,
Hugs and prayers for you as you start this new journey...
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Thinking of you and sending LOTS of good luck your way for your scan results. Hang in there - Nancy T.
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You know where my hopes and prayers are Christine. You will always have all of my best and I even sent some angels to stay close to you.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Best of thoughts coming your way, Christine. Each day is a universe to itself, so take full advantage of it. Before you know it, this will be over and you will be back at full strength!!
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
| | | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | Came in to check on you, Christine. I'm thinking good thought for you...
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Just wanted to add my best wishes to the others.
Thinking of you often and waiting to hear that all went well....
Gabriele
xoxox
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Hoping to hear from you soon Christine and praying that all went well. We are here for you.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Just came to check in on you and see how you are doing. I have been told to stay away from cancer reminder sites for awhile since it consumed me for a few months. I can't stay away from this place. Too much encouragement and caring going on. Wanted to let you know my thoughts are with you. Hope all goes well with the CT scan. Let us know.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Thanks for all the encouraging words. Im presently trying to move into my apartment so havent had internet access. I will get my test results on the 11th.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Dear Christine,
You know my thoughts and prayers are always with you.You are one strong and caring person, and you are well loved by all here. Wishing you nothing but the best.
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Do you ever get the feeling that Christine must be the energizer bunny. She is always in the non stop mode. Just you and beep beep the roadrunner buddy. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | ChristineB, Hi there girl.. Just wanted you to know I am thinking of you.. Yes, these rounds we go through are a pain.  I too just had one, but caught early. The Good news is WE KEEP FIGHTING !!  You take care... Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Christine,
The 11th is a long way away. You certainly have more patience than I do. I�m hoping and praying you get great news.
It sounds like you will be keeping busy moving. If you need any help or moral support, just let me know. After your move, we will be practically next door neighbors!
Suemarie,
That was so kind of your mother to take in Christine�s pets. She certainly has one less thing to worry about now.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | Thinking good thoughts for you, Christine. You're always so encouraging and supportive on this site.
Thanks!
(Gretchen, on Facebook)
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Im scheduled for the test results with my ENT on Aug 11. Next is the plastic surgeon on Aug 13. Then pre-admission testing and the PEG docs on Aug 18. Another consult with my ENT on Aug 20th. Thats the one where I will decide if I will go thru with this operation. My biggest concern is the quality of life after all of this is over. I know the recovery will be a long one. After all the consults with all my docs and the test results are in thats when I can make an informed decision as to my treatment. This will sound awful....Im sorry....I cant keep doing this every single year. Three years in a row Ive been sick. Its been a never ending cycle for me. Everytime I think Im better and start feeling good, I get this terrible disease again. I wont go thru another round of this, or more surgeries. I want to enjoy my life, not constantly be in a recovery mode. My countdown begins, 25 days of my current life left. After my surgery, my life will be permantly altered. Really hoping and praying that it will be the end of cancer for me. Dont anybody get the wrong idea, I am not depressed. I am a realist, I see the situation exactly how it is. Hope everyone has a great day!!!! Im going to make it the best day possible I appreciate everyones support, it is a great comfort to me. THANKS!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | You are such a strong lady and I know you will make the best decision based on the facts. I'm sure you have every confidence in your doctors. Keep us posted.
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Christine,
I know that other people's problems are easy to fix but please don't give in to this cancer. You have fought it strong and I hope you continue to fight it just as hard.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Christine,
I am away on vacaion and haven't been here for a few days. Why so long for the results?
No one will question your decisions. You are one of the strongest willed people I know.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Christine,
You don't sound depressed, and I like your attitude. It's important to not have your head in the sand. I know you will still fight this with everything you have. I don't think anyone blames you for not wanting to always be in treatment/recovery mode. I'm always thinking of you.
xoxo
(((((HUGS))))))
Last edited by suzanne98; 07-30-2009 04:45 PM.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, LOL why is it we have so many appts the same day? I have one the 11th with my Oncologist
. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Christine, you have an army all around you ... and OCF army ... and we're hoping your docs have the big guns! Wishing a lovely lady a huge turn-around in your battle. Hugs, JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Recovery Mode is a lot better than Hospice Mode!! Hang in there!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Christine,
You are one of the strongest and most caring people on this forum. I am keeping you in my thoughts and prayers that this WILL BE the LAST time you have to deal with this. I also don't blame you for looking at this realistically - I've never been in your shoes but believe I would be the same. Hang in there and BE POSITIVE.
Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Christine I am always in awe that you ask how I am doing (as no doubt you do with so many others). You have so much going on and today is the 1st of August here which I know is going to be big month for you.
You are always so thoughtful and supportive on this site and Facebook.
My thoughts are with you and I send a big {{{hug}}}} from the other side of the world.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Christine,
I just read your posting from Thursday. Wow, you are so amazing. As always pragmatic and with a plan. I have learned much about what an indomitable spirit is through you, my friend.
I hope all is going well in the transition to your new home and I look forward to talking to you soon
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 |
Today the moving went very well. Im almost completely moved out of my old house in the woods now. I dont like going there at all without my dogs. The house just doesnt seem right without them there to greet me. Its especially different now that its empty, all but the garage and 2 closets.
Tomorrow I will finish cleaning it out, lock the doors and not go back. That chapter is over. I have my bike and live right next to a large park where I had taken my children many times when they were little. In a few minutes, Im going out for a bike ride to ease my mind.
My jaw is sore and swollen now. It hurts just to touch my cheek. This makes me worried, which I need to take my own advice ...worrying wont change anything. I will see my doc in a few days, not much can be done right now anyway. I have pain meds and magic mouthwash. I still refuse to waste my day, I will have plenty of time later to sit around not feeling well.
Thanks to everyone for their well wishes. Its something that encourages me to keep going. Im a very strong person, but sometimes even the strongest people can be weak.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Christine, I was out of town for a few days and am just catching up. You are a strong woman and in my opinion one of the bravest on here. You have been through quite an ordeal. Just want you to know that I have been and will continue to pray for you.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Geez you sure got moved fast Christine. But you never seem to lag any on whatever you do. I wish you well on everything that you have to do , including the bike rides. Just listen to your Drs and then to yourself. LOL I would bet on yourself. You are in my prayers and I will say a special on for you tomorrow morning in church.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Lets hope that bike ride makes you feel better.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Hang in there! This dreary weather doesn't help one's spirit's either. Your dogs are settling in very well. Peanut is so funny-she's one tough cookie. She did chase my son out of the house the other day-AFTER we walked her. We all can't wait to see you on the 23rd. I think my daughter wants to meet your son!
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | Christine,
i keep checking this thread to see how you're doing. Your spirit is amazing. Your friends here and their support for you is amazing. I hope things go well, and even though the recovery road will be long and tough, you'll get there.
And I'm with David. Hopefully, that bike ride will make you feel better. You are physically strong, and that counts for a lot.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Sue, its nice to hear good news about the dogs. Roxie is the scary looking one who is a sweetie, loves everybody. Peanut is the tiny terror, she has alot of spunk for her age. Your daughter is a very nice girl, you have done a good job I cant wait til the 23rd to see you guys and the doggies. But its also my last day with life as I know it. In that respect, Im not in a hurry.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Christine,
Your strength continues to amaze me. Might I say though, that although your body may change, your spirit will still be yours. I suspect that no matter what the doctors or that nasty cancer throws at you, your heart will still shine through. And that is more important than any physical limitation you might have.
You remain, as always, in my prayers.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Christine
My old stained glass workgroup still sends me a 'get well" card every week to remind me they miss me. the last one sums up what I want to tell you
[quote]
Things I Don't Know
Why Bad Things Happen to Good People
All you're feeling right now
Exactly the right words to say
Things I Do Know
You're cared about more than you realize
You will get through this
OCF is here for you... no matter what[/quote]
Keep the Faith
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, you have the energy of a 5 yr old and the strength of a Bull Dozer. You are going to beat whatever gets thrown at you. Keep up that happy spirit.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Christine,
From another 3 timer - It is indeed frustrating when we seem to be doing fine and then get hit again. Facing the unknown is scary no matter how much faith one has. I have found strength in the love, prayers and support of family and friends, belief and trust that there is a reason for everything that happens and that all is for the good no matter how awful it seems.
Facing a long recovery is very frustrating and especially upsetting after you think all the bad is over. You have done well in preparing and I wish you a complete and speedy recovery.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Charm, that was actually a very charming post THANKS!!!!! Malka, thank you for reminding me you are a three time winner. Its very reassuring knowing others who have gotten thru this 3 times. I greatly appreciate all the kindness and support I have been given by so many OCF members. It helps me so much knowing I have so many people in my corner. I have learned a great deal from each and every one of my fellow OC survivors. Tomorrow is the consult with my ENT about the CT scan results. I have a list of about 20 questions to ask him. Poor guy, just wait til I see him after the plastic surgeon's consult. Then he will really get bombarded with questions. Hes a great doctor and I have all the faith in the world that he will do the best he can for me. OCF really does deserve the great non-profit award. Its the best place for help. I know I probably would have given up a long time ago if I hadnt had OCF. My son has just joined OCF so that he can keep everyone informed. He is TravisB
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, I was informed today that the hyprbaric is one thing that will fight Cancer and the bone showing thru. He pointed mine out to meor rather touched the bone today and made me sit tall. Damn that is a sore place . LOL but he dsays the hyper will help it a lot.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Hi Christine,
How nice that Travis joined OCF!! Good luck with your appointment tomorrow...I hope you get answers to all 20+ questions. And, glad that you are working with a doctor that you have so much confidence in.
Thinking of you every day, my friend.
Hope you had a good weekend!
Margaret
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | We will be waiting (with baited breath...or is it bated breath...what does that mean anyway???)...We will be anxiously waiting to hear the results of your scan and the answers to all 20 questions! My gawd woman, you are organized. I'm sure you have 2 pens packed in case one runs out while you are writing down responses!
Be calm (or as much as possible), post soon.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Bated breath....holding your breath.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2008 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2008 Posts: 26 | Christine,
Thinking of you and wishing you a speedy and full recovery. Adding some extra prayers for you today as well for your CT results appointment.
From the Midwest,
KimK
08/24/07 Dx at age 44 never smoker, occasional drink
T1N0M0 G2
09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear
12/05/07 35 RTx w/boost, 63 GY, finished
12/28/09 PET/CT all clear!!
12/19/11 check-up, all clear - 4 years cancer-free now !!
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Baited Breath -- Just after taking some breath mints...
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Todays appointment was both good news and bad too. Im not Stage 1 this time around. Its Stage 4 since its invaded my lower jaw bone. The doc said he probably will not need to use my leg bone for my jaw. He is making a steel bar to use. He also said that it will be the bottom jaw only that needs to be taken. Im upset by the details today. My jaw and ear hurt like heck. I was given ear drops to help my ear and Im seeing my ENT again before the big day. It will be a long 6+ hour surgery and will take skin from my stomach area for my new cheek. Thanks for the positive comments
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Thank you for posting - been worrying about you all day. Not to worry about Stage IV - ask Brian how long ago they told him he was Stage IV!
It sounds like the surgery will be a bit easier on you than you had anticipated. I am glad that you are / were mentally prepared for whatever would need to be done, but I'm sure it will still be a long recovery. Make sure you get all the pain meds you need until the surgery. My last surgery I was in SUCH pain right up until the surgery that I was very happy when they put me out to do the operation.
Any talk of additional chemo/radiation, or will they wait for the pathology before deciding?
I know you can do this Christine. You are not walking this path alone - we are all hear with you. LEAN ON US.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | I'm glad they will only have to do the lower jawbone. Hopefully that will make it a little easier for you. Any node involvement? Will they be doing a ND? You should have no trouble getting around if they don't use your legbone. Hang tough, Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Dear Christine, so sorry you have to go through this, it stinks!
How are your nodes? Is removing the lower jaw bone the only recourse? I'm fairly new at this so not very knowledgable
about treatment. My thoughts and prayers are with you. We will send lots of positive energy your way
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Christine
Sorry to hear the outcome of your appointment.
Thinking of you
Karen ((hugs))
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Thanks for posting an update, sorry it was such an icky day! Am hoping that it is good news that they will leave your leg bone in-tact.
Six plus hours is quite some surgery...how long will you be in the hospital to recover?
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Christine,
We can all take heart that even stage IV OC isn't the end of the world anymore. I am amazed at how much can be done and how so many survive in spite of all the brutal treatments and life altering challenges from this "affliction."
It is rotten that you have had to give up so much in this latest recurrence. You are most fortunate to have the support of Sue. It be wonderful if we all could be able to give such practical help to each other.
Please check into the pluses and minuses of the metal bar vs fibula with your ENT and dental professionals. Although the surgery for the replacement with the bone is very complicated and the recovery time is long the results are very good. I was told by several specialists that the metal bar can present problems later. From my research I found that the long term effects were minimal. I recommend that you search our forums and the main site for more information.
With best wishes and prayers for an easy, quick and complete recovery,
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Christine,
It has been awhile since I had time to read posts. I am taking the time this morning before I head off for my first day of school. I am so aorry about the news you received yesterday. I will praying for a quick recovery. Thanks for keeping us all updated. I will be checking back on you periodically.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Oct 2008 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2008 Posts: 49 | Christine,
My cousin had mucousal melanoma four years ago and had a titanium plate inplanted in her cheek bone and looked GREAT...two months later, went to her nieces wedding after a 5 hour flight. They can do wonders...:)
Donna
Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, I am sure you know all of the words that can be said about your treatment and diagnosis, so I won't even try. As usual, you are in my prayers and thoughts daily and I wish nothing but the best for you. Just keep being the Christine I have come to know and respect and you will whip this stuff again. I really wish I could be there for you. Circumstancces prevent that right now tho. Your forever friend.. Jim
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jan 2008 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2008 Posts: 26 | Christine,
I wish there was something profound I could say that would help, but since I can't, please know that you are in my thoughts and prayers. You are such a strong and compassionate woman and those traits will help you persevere through surgery and recovery. Thinking of you and wishing you peace and comfort.
Kim
08/24/07 Dx at age 44 never smoker, occasional drink
T1N0M0 G2
09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear
12/05/07 35 RTx w/boost, 63 GY, finished
12/28/09 PET/CT all clear!!
12/19/11 check-up, all clear - 4 years cancer-free now !!
| | | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | Thinking about you, Christine.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi Christine
i was just browsing through your first posts and wondering why and how i didn't seem to have posted on many of your threads.Then i saw the date and realised that i was at hospice with Rob and very much tied up with myself!!!Despite all you have been through and are going through you have always taken the time to leave words of support for everyone else and thats an admirable quality.I smiled a little reading some of the replies to your questions by Petey B and Brenfran and am amzed at how little (like me) you knew two years ago compared to the wealth of knowledge we have now after living with Oral Cancer and its gifts.
I send you every good wish i can muster from across the pond sweetiie.
love and hugs liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Liz, we have corresponded many times indirectly. I have read so many of your wonderful posts. The best is seeing your beautiful pictures on facebook, thats the happy stuff I love to see. Yes, Petey, Amy, Brenda, and Margaret were my first friends here. OC is one topic I dont like knowing things about. Overall this site has allowed me to absorb an abundance of info and be able to pass it on to others behind me. Today is the date with my plastic surgeon. He will probably think I am crazy but Im going to ask him a million questions. Even about a little tummy tuck while he is taking skin from my belly. He will be my miracle man that I need to make me beautiful
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, you will always be beautiful with or without the Drs.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Christine, good luck with your appt today with the plastic surgeon
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2009 Posts: 88 | Good luck and I am thinking of you today and hope your appointment goes well. You are so positive for everyone else we need to all band together our positive energies for you and what you are heading into. God bless.
Bonnie
CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | An update about the plastic surgeon consult, and more.... He was very detail oriented which I like. Told me my operation was a big one, which I knew. It would be 6-8 hours for his part of it, my ENT is also another 6-8 hrs. Some of their time will overlap as will the PEG and trach placement. He will take skin not from my stomach area, but from my inner arm. Its going to be like the picture Charm posted on the review site. There is a high probability that this will not take and he will need to redo it within 24 hrs. He will be working with thread the size of a hair connecting blood vessels under a microscope. Swelling will last for 3-4 months. He said it should heal in about 8 weeks. I will come home from the hospital about 10 days after the operation with my accessories. The trach and PEG will be around for a while. How I hate that PEG tube, only people who have used one know the discomfort and the amount of energy it takes to use one. Everything in your day revolves around the darn tube. Its a very unwelcome accessory. Tomorrow is my consult with the gastro doc and the pre admission testing. It will be a long day, a million questions, bloodwork, chest xray, anistesia guy. He will run around and get his supervisor to look at me since I have trsimus and say that they cant do my operation. Same story everytime by those guys. There still are a million questions I need to ask. I keep forgetting to ask if I will need HBO again to heal. Cant wait to find out how in the world Im going to take a shower with a huge hunk out of my jaw area. I dont even want to hear the word bedpan while Im in the hospital. I have more willpower than any nurse out there, I will use the bathroom and be clean. Even if I cant talk, they will get the message How I want to fast forward this event and be on the recovery side. Im not good at bouncing back and Im scared when I think too much about this. Ive become very clinical, I can discuss medical terms and all that goes along with this objectively. When I think about this being done to me thats when I get scared. Just knowing I will have no control over anything in my life for at least a week scares me to death. That I must rely on others for everything and cant speak up just kills me. I am not brave at all, Im terrifyed. I remove myself from the picture to be able to deal with this. I cant even say Ive been thru worse, thats what always got me thru everything else. This is my last Monday as I know it, time to make the most of it. Im going to do some positive things today. Make some financial arrangments and try to eat everything I can possible eat. Ive lost 6 pounds and need to be on a weight gain regime. Back to my chocolate peanutbutter shakes with carnation instant breakfast powder, had one last night. Hope everone out there makes the most of the hand they are dealt and has a great day!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Geez Christine, I wish I had words to comfort you and this situation, but as usual, I am not that wise. I have you on the top of my prayer list as always and I will be there by your side in spirit. I can understand the being scared part and worried about different things. I remember when I came out of the induced coma, they had a giant sizewd diaper on me That was a big upset to my system just thinking about it and as soon as I could move. I had to shower with or without consent. I have been thinking about you for the last few days and wishing I could be there to talk to you and maybe get a smile from some of my BS.Enjoy the shakes and whatever you can get down. JIM
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Christine, I'm so sorry that you have to go through all of this. I wish there was something I could say to help with your fears and anxiety. I can't imagine all you have to go through and anyone would be scared to death. John and I will be leaving Friday for our cruise but I will be thinking of you and praying for you and your surgeons. You have such a HUGE support system here and so many people in your corner. Sending you a HUGE hug. Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Christine,
I wish I had some words of wisdome for you but I know I don't. I just wish you didn't have to go through this and I'm scared for you. Did I read that correctly, that your surgery will be about 16 hours?!? I'm pretty sure that anyone here would feel the way you do and just wish they could sleep their way thourgh this and get to the recovery side of the journey. Sometimes life just isn't fair and I feel like now is one of those times.
I guess all I can do is be there for you and I fully intend to be. You will be in my prayers everyday. I know I have told you this before but I will tell you again in case you are the type that doesn't ask for help:) If I can do anything for you please let me know. Maybe, you can send me your address in a PM and I can get some things together for you and mail them.
You say you are not strong, but you are. It's ok and good to be scared...that means you are feeling the feelings that are normal. You will get through this and we will be here for you every step of the way.
xoxo
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | We are all praying for you and if there's one person who can do this, it's you.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I have met many people who have had the flap rom the inner forearm and most of them went very well, so we'll pray that you are on that side of the ledger - you deserve some good luck at some point!
My first surgery was 15 hours. I remember the groups of doctors talking about taking a "lunch break" - which immediately gave me visions of lying there alone in the operating room while they leave to eat their tuna sandwiches! Of course they take breaks - but they overlap between teams. I still get a chuckle out of the first visual tho!
Whether the surgery is 5 hours or 15 - you won't know the difference, and if you are like me you will be very happy when they finally start that anesthesia countdown. I think you are at the place where you are ready to say "Let's git 'er dun".
You aren't walking this path alone Christine. Your Angels walk every step with you.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | christine
good luck. The flap from my forearm took perfectly, and they also had to use microscopes and "tag team" me. So I hope you flap takes also. The aftermath of surgery is such a shocker and I feel lucky to have survived the hospital. If you can bring a wireless laptop with you or have someone drop one off, it is a godsend during those long long days and nights. Almost all hospitals have wireless connections for their patients now and you can pick up one suitable for your purposes for under $300
Or consider one of the new "net books" which are very compact and can be gotten for about $200. Just bring your AC adaptor and you won't have to worry about battery life which is what drives the cost up on any laptop. Mine only has about an hour and half but came with everything including a web cam. I had fun taking pictures of the "good nurses" plus the picture you referenced of my flap was taken with this laptop webcam. That way you can keep in touch with OCF.
Drink a chocolate milkshake for me too today.
Finally, I hear you so clearly about the PEG. It is so tiresome and time intensive. Still as you know better than anyone, we do what we got to do,
Best wishes
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | I had a forearm free flap too, and it took well. It was an 11-hr surgery altogether between the ENT and the plastic surgeon. One of the blood vessels was too tight, and the plastic surgeon had to take me back in the following day to loosen up the vessel and put a few new ones in, just in case, but the rest was fine. I was reading surgical notes, and was blown away by what the doctors can do.
The aftermath of the surgery is physically draining. The flap is usually several times the size it needs to be, and eventually it will shrink down to the normal size, but in the meantime, you will be unable to speak and probably even close your mouth. So be ready with notepads and pencils or some sort of a PDA or laptop where you can type up whatever you need to say. The good news that it heals well and you'll be amazed at how much progress you'll make in just a few weeks.
It's hard. But we've all been through so much, it feels like there's very little we cannot handle. I just wish that you didn't have to go through it.
We're all pulling for you.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: Jan 2008 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2008 Posts: 26 | Christine,
I also had the forearm free flap, microscope, tag team stuff in a 12 hour surgery and the free flap has done great. They have a little device with a pencil type attachment that they use to frequently check the pulse/bloodflow in the transplanted vein that's part of the free flap to insure it's working and healing as expected. The free flap felt huge to me for a while, like marshmallows stuffing my mouth full, but it did shrink down in time.
Sending you prayers and good wishes,
Kim
08/24/07 Dx at age 44 never smoker, occasional drink
T1N0M0 G2
09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear
12/05/07 35 RTx w/boost, 63 GY, finished
12/28/09 PET/CT all clear!!
12/19/11 check-up, all clear - 4 years cancer-free now !!
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Christine,
I too wished that I could say something.. anything that could help.
Thinking of you and wishing you well!
Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | This is the big one girl......its a toughie but so are you.Scared witless is ok Christine its normal and human and i wish my arms were big enough to reach across the miles and hold you close,but my heart is big enough and you are held in it.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Christine,
I wish I could take some of this ordeal away for you. May you haave speedy and complete recovery with a maximum of dignity and a minimum of pain and be forever well after this.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Christine
The device that Kim mentioned is called a Doppler <sp?> they regularly use to check the blood flow.
Unfortunately, you will be requiring assistance from the nursing staff for washing/bathroom for a short time, BUT it is only temporary. With drains, drips, trache suctioning and PEG - it can be really full on.
I had a sheet of paper that read "PAN PLEASE" next to my bed so I could just hold that up when I needed it. I know how much it SUCKS- words do not describe.
Once you are able to get up to the shower you will probably be given a plastic neck collar - it is intended to cover the trache so as no water, soap, shampoo etc gets in. It justs sits around your neck over the trache and is held together by velcro.
Like so many others, I am thinking of you and will be wishing you a super speedy recovery.
Karen xx
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Christine my dear....what hospital will you be in? Guess who is coming to see you? I'll bring magazines and we'll have fun. We can relax and watch tv..whatever you want. Remember when I was in the hopital and they gave me Cream of Wheat and the nurse came back and tried to take it away? I said "Over my dead body sweetie" She wanted to give me cold cereal. She obviously has all of her tongue or she would not have suggested that..lol I bet something silly will happen when you are there and we can laugh. If something crappy happens we will tell Charm and he will call or write a letter for us!!
We are going to be Christines Crew:) Oh..I like that!!
hugs and kisses
Last edited by suzanne98; 08-17-2009 05:39 PM.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Dear Christine,
Wishing you all the very best from another forearm free flapper.
Mine also took very well even though they have been nibbling away at the edges for a few years now to get it right.
The wrist healed very quickly as well as the skin graft from my thigh to cover it.
Still looks like a shark bite though!!
Using a bed pan was something I could not master. Even with my OC unrelated operation last month they kept the bag connected until I could make it to the bathroom...I think about you daily and look forward to hearing from you soon.
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Ok a little help with info here.... I thought the free flap was the piece of skin used to piece together the missing section of someone's tongue. Is that what its called or is the free flap the piece of skin they take from your wrist, thigh or another place? My new cheek will be made of part of my wrist. The plastic surgeon told me its about 2" that he needs to cover but will take a bigger section than that. I dont know why I always thoguht the free flap was the tongue. Maybe my silliness at ... yap yap yap and that rhymes with flap. LOL The doc said he would try to only take a piece from my wrist and if that needs to be redone then it comes from my thigh. Oh boy, bedpans are right up there with PEG tubes. HATE THEM!!!! So how in the world do you wash your hair? Wouldnt the whole cheek and of course trach need to be covered? Suzanne, I would love to have company. My surgery is on Monday the 24th. I probably will not be in any type of shape to even know if anyone is there for the first couple days after surgery. Im hoping by Thursday or Friday I will be thinking clearly enough able to at least communicate even if writing. I will be in Lehigh Valley Hospital Center on Cedar Crest Blvd, Allentown. I will count on Charm for his letter writing talents Ok to all those who have gone thru similar procedures, please help me with some info. I already know the everybody's different speech, just looking for some general timeline to go by. How long til you could talk? How long til you ate food? When you left the hospital did you still have the trach? How long for the trach? Did you need speech therapy? How long were you in the hospital? As always THANK YOU!!!!!!! Every single member who has posted a response or private message to me is unaware of how much they are helping me. Every good wish, every prayer helps me understand that I am not alone and OCF is what is going to get me thrus third round. Suemarie helped me with my dogs. Donna (Pandora) sent me a beautiful card. Margaret is coming from Wisconsin to visit. Susan2992 is coming to visit me tomorrow. Ray said if Im up to it he will come see me in the hospital. Suzanne is coming to the hospital. All these gestures of caring and kindness make going thru this so much easier for me. I cant say thank you enough!!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Christine, There are not enough words from all of us to let you know we are thinking of you.. Just know in your HEART we are all with you!! Love ya..
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Christine,
Free flap is a reconstructive technique, not a destination. The procedure is used to rebuild tongues but also to rebuild breasts after mastectomy and apparently, to rebuild cheeks.
I don't know the answers to the rest of your questions, but I will say that after my surgery, the most painful surgical site was the thigh where they took the skin to cover the hole on my wrist. That stung like a m*@#$r.
- Margaret
PS - you are in my thoughts and prayers
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I haven't had the same surgery - but I can answer two questions:
1) You wash your hair by leaning forward and using a hand held shower - I could wash my hair easily this way without getting the trach wet.
Other Misc: I was in the hosp for 2 weeks for the first surgery - trach was taken out before I left hospital but it took awhile to close the hole - homecare nurse changed dressings daily. I had a speech pathologist - both times - who taught me how to swallow and eat and then worked on speech for many months, including lists of words, etc, etc.
I have no idea why they call it a "free flap". I thought the name came from the fact that they didn't have to pay anyone for the skin - I gave it - hence "free". I had a graft from my thigh and it healed very well - piece of cake. The graft which went to my tongue was about 3 inches across and 5 inches long.
Hope that helps
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | My nephew recently had a flap on the heel of his foot from the donor site, which was his thigh. (His heel was shattered in an accident) His heel had an area in it which had to be filled in so therefore they took the tissue from his thigh to fill it in. Following the surgery, the next 48 hours or so are crucial, as the skin has to knit together and blood has to flow/circulate to make sure that it is alive, if it isn't knitting and circulating properly then it is dead and it has failed.
I had never even heard of a flap until I needed to have one a couple of years ago.
My first tongue flap was taken from my thigh and unlike Margaret I had no pain or discomfort from my thigh whatsoever.
My second flap was taken from my hip (also bone was taken from my hip for my jaw) that area was uncomfortable for quite a while. My first and second flap is basically an attachment to the little piece at the back left of my own real tongue. With a flap like my it cannot be lifted at the front of the mouth, it is permanently stuck down around the front (behind the line where the bottom teeth sit)
I had a trache in for about 10 - 12 days both operations. My trache was removed both times before I left the hospital.
The nurses washed my hair once - they layed my bed back flat, and had buckets and all sorts of things and somehow or another they shampoo and conditioned my hair, and then dryed it !!
They also have dry shampoo cap packs in some hospitals (especially designed for hospital use - they are heated in a microwave before use)- I have one that I would be more than happy to send to you.
I was able to talk as soon as they took the trache out. They close it up once the swelling starts to go down and they gradually close it for longer periods of time until it can be taken out. Once they are happy and confident that your airways are free from swelling and able to breathe properly without assistance it is removed.
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Free flap means the donor tissue is completely removed from the donor site http://en.wikipedia.org/wiki/Free_flap. My first free flap was a success, although I have some residual nerve damage on my wrist. They tend to build the faux tongue oversized because they can remove some later but can't add any. Lots of drains involved, so you can gauge your progress by how many are left! I used a clipboard with a pen tied to it to communicate. I also had my plastic flies for amusement. After stuf healed, I was able to talk in person and on my cell phone and be understood the majority of the time, plus I was able to swallow food (They only replaced 2/3 of my mobile tongue, so the muscles on the BOT were all OK. I wish I still had that free flap and was able to talk that well! On my second free flap (entire tongue), they implanted the Doppler sensor to detect flow in the major vein and artery, but eventually the front part of the flap died from lack of proper circulation. They did let me remove the sensors myself.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Next month it will be 3 years since my free flap operation and even though there have been some minor issues I would have to say like Pete's first it was successful.
I was 1 week in intensive care and after they removed all the tubes another week in a room.
My Aussie friends here (Merrie and Helen) are amused at my pictorial history. I take all the photo's of myself before and after procedures. Will send some photo's via email.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Christine
Short and sweet answers to your questions:
I could "talk" even with the trach tube in, which amazed the doctors.
I still have not been able to eat food since the operation in February just PEG tube feedings
Trach pulled after a week while still in hosptial, just 'stoma' (medicalese for hole) left - put bandage on it
Definitely needed speech therapy, plus physical therapy and now swallowing therapy,
Twelve days in hospital (3 in ICU)
And I concur with the advice to Bring a pad of paper and pens
I wrote out in advance on index cards in block letters a series of messages: Pain pills please; suction please; when can I be washed; etc as while I could "talk", there was no guarantee of being understood
finally, zero pain on either of my flap sites, not the wrist where they took the flap, not the groin where they took the skin to replace on the wrist, they both healed perfectly.
Good luck
charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Oh Charm, What a great idea!!! I love the index card idea...I bet that really came in handy:)
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Thanks for the info Pete. I like your directness. I hope you are doing ok now. I know you have gone thru a heck of a time with OC. I will remember you sense of humor about the flies. Those posts were pretty funny. Hows the critters?
Gabe, I still havent taken a peek. I must psych myself up for this. Maybe tomorrow. Thank you.
Charm, Im going to make myself a rolodex on a stick. Great idea. I will put my most common requests on there and use some of those small circular clasps and attach it to a ruler. This way if necessary I can bang the ruler on my table to get some attention to my index card.
Tonight I had a wonderful visit with my friend Susan2992. Im very fortunate to live near other OC survivors who are OCF members.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | I love the rolodex on a stick idea! A noise maker is a great idea!!
Does Travis know that we are going to be eagerly awaiting information on your progress? Or should one of the cards say...post an update on OCF? :-)
Glad you had a fun night! Still can't figure out why there are so many people on the forum from PA and not many from WI. Although, I'm glad they are there for you!!
The rest of us are sending you tons of good vibes and prayers!!
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Travis knows he is expected to post updates on OCF for me. I tell him every single day at least once. When Im feeling up to it, I will have him bring his laptop to the hospital so I can do my own updates.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | Christine, you're in my thoughts daily. I think everyone else here has pretty much said it all...
Gretchen (on Facebook)
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Just want you to know I am praying for you. Wanted to ask you permission to put you on our prayer list at church. Is that okay?
You are a very strong woman and I look up to you. I just hope I can be as strong as you are.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | I would be happy to have any and all prayer that are out there. I can use every single one to get thru this.
Thank you.
A special thanks to Suzanne who has her whole family lined up with prayers for me.
I may be strong but I do depend on my OCF family to help me thru this. This support is so needed and appreciated.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Christine......may god bless you and keep you and the angels from OCF watch over you.(i've told rob to pass the word)
love as always
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Christine, just wanted to let you know I will be thinking of you too. You are an amazing woman who has been a great help to me. Add another prayer from me
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Hi Chistine, we only 'met' yesterday & you [among others] made me feel so very welcome. You are a very loving compassionate woman, and very brave. My thoughts are & will be with you in the future, to help you overcome this round as you did the previous 2.
Jeanna
xx
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | Joined: Jan 2008 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2008 Posts: 26 | I've added you to our prayer list at church. Thinking of you and praying for you and a speedy recovery.
Kim
08/24/07 Dx at age 44 never smoker, occasional drink
T1N0M0 G2
09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear
12/05/07 35 RTx w/boost, 63 GY, finished
12/28/09 PET/CT all clear!!
12/19/11 check-up, all clear - 4 years cancer-free now !!
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Christine,
You know that you are still in my thoughts and prayers everyday, and will be especially on Monday. Ron always had a white board with him in the hospital. It can be easily erased, etc. They will probably "cap" the trach at some point so you can try to talk. To tell you the truth, it was more frustrating for Ron because he still wasn't very easily understood, so he mainly used the white board. After his last surgery in Feb, he came home with the trach. That entailed quite a bit of work, between keeping that clear, feeding the PEG, keeping a schedule of all meds, etc. It was a lot. I ended up making a weekly spreadsheet on the computer and printed out quite a few weeks worth and we would cross things off as they were done, or wrote times of meds, etc. It really helped us remember everything. Please accept all the help that you can. I know you are strong and independant, but you need people who care about you right now. I wish I was closer, I would be honored to help you out. You are amazing and you will continue to be, I have no doubt.
Love,
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Hi Christine,
There's not really anything that I can say that's not already been said. Richard and I will be praying for you on Monday. Even though you have to go through the medical part of this ordeal alone, you will never be alone in spirit and faith. So many people will be thinking about you and praying for you. Please know what a comfort you have been to others with your encouraging posts and comments. God bless you and keep you safe...Geri
Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Don't forget to ask for a Passy-Muir Valve for the end of your trach -- Helps make your speech more intelligible and you don't need to cover the trach to talk. http://www.passy-muir.com/
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Will be praying for you for Monday. I have been praying for you a lot these past few days.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, I wanted to put my post here and not one of the other sites. I will have me and my Pastor praying for you as we go to Pittsburgh in the morning. My mind will be there with you and encouraging you thru everything. If you see something funny looking, go ahead and laugh. It's just my image. I have sent a few of my angels to watch and help you. Your buddy JIM
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | So glad I got to see you and your family today. It was a great visit. Keep the faith-you are a strong, wonderful lady with alot to look forward to. I will be saying many prayers for you and your children. I will come to see you some time in the next week or so. Please give Travis my number in case he needs anything or just someone to talk to-I've been there so I can be helpful to him. I love you and will keep you in my thoughts.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Best wishes from me too!! Read your mini blog around 4 hours ago now so know that you have a lot more information on your procedure.
Also good that they will keep you sedated for a few days.
Looked like a great time spent with the family for the Travis's 20th birthday.
Great pics�.look forward to hearing how you are doing.
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Christine,
As you know, I have a lot of family members praying for you. They will say extra strong "noisy" prayers (we do noisy prayers in our family. They seem to work)for you. Can't wait to see you on Saturday!! Stay strong and remember we are here for you. You have my number so have Travis call me if you need anything or send me a text.
Love,
Suzanne
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Thank you for all the well wishes, angels and prayers, especially the loud ones I need all the help I can get tomorrow. My doc is keeping me asleep for a few days while Im in ICU. Visitors are allowed after Thursday. Basically I will go into the OR and cry like I always do since Im scared. Next thing I know it will be Wed or Thurs. and I will wake up a new person. Boy, to think I used to complain about getting a cold. Wow, this sure has taught me not to complain about little things. I still consider myself lucky to be here and able to help others. Gsbe, Im going to take a picture too. I love your idea of the before and after shots. Ive taken a ton of pictures the past couple days. It was a great day seeing Suemarie, her daughter, and meeting her boys. What a nice family. We had lunch together after seeing the doggies. Sue....THANK YOU!!!!! I felt much more at ease after talking with you about Neil's recovery. This round is different for me. Its a huge surgery 10-15 hours. Many parts of my body will be affected. But...this time is different, I am strong now. For my second round I was still trying to recover from the chemo and rad treatments which had ended only 7 months earlier. This time I do not feel that bad, jsut sore jaw and ear pain. I am strong and although Im very very afraid, I feel confident going into it this time that I will be ok. My new motto will be .... I'LL BE BACK
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Christine,
Your body will be different, but your heart will be just as good as ever. You're gonna be missed while you're in the hospital but know that you've got a huge fan base backing you up!
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Christine,
Ditto what MA Margaret said!! Great minds and Margarets think alike. :-) You've got a ton of people praying and rooting for you and we are looking forward to when "you will be back" on the boards daily again soon!!
Love,
Margaret
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Thanks to the 2 Margarets Boy am I gonna be lonely while in the hospital. I will miss all my OCF pals. Im very lucky, I live near a few who will be visiting me
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Christine,
I'll be praying for you tomorrow, and I'll see you later in the week when you are allowed visitors.
See you soon!!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | there are many of us rooting for you.... and that donation, you just have to make it yourself! BEST Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | The time has come to finally get rid of cancer once and for all.
Im determined to be back.
See you all very soon!!!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | Hope all goes well today. Can't wait to see you back.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, I am praying that everything goes as planned only just a little better. Remember the funny looking thing hovering over you is my spirit and the beautiful things are the angels guarding and helping you. Take this hug with you into the OR ... (((((((((((((((((((((HUGGING YA))))))))))))))))))))))
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2007 Posts: 3 Member | | Member
Joined: Jul 2007 Posts: 3 | Malka
I have had 4 resections of my jaw for an unusual oral melanoma, over a 4 year period. It now looks like they need to replace the jaw bone. The fibula replacement seems much more intrusive than the metal plate-and I am normally on my feet a lot. How are you doing several months later?
Mike
Michael Ballon
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Michael'
I will start a new thread about the fibula flap
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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