#73315 04-18-2008 07:01 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hello friends,
My CT scan wasn't what we were hoping for so the treatment is going to be more than I expected. I have such crappy luck. There are three areas of cancer, one lymph node under my jaw on the right side, two areas in the retropharyngeal area with one being quite far back. My doc isn't sure he can get to that one area so is doing an ultrasound next week and also a needle biopsy of areas on my thyroid. He said he can't tell from the scan if they are cancer or not. Of course he'll biopsy all the areas, but he told me he's very sure the three areas I mentioned are cancer.
He is suggesting surgery first, then do some gamma knife radiation along with some chemo. He's always been honest with me and told me that he's FAR from ready to throw in the towel, he told me he can get this and for me to beef up for the battle. Of course I'll do just that.
Really odd for me this time, I'm almost numb to all of it. I've resigned myself to accept whatever this cancer sends me and it's a really good place to be to be honest. It allows me to live a normal life amidst all of it. I went to two softball games and cheered my heart out, this a half hour after talking to the doc about the results. I've made peace with the fact that this cancer just might kill me, not that I'm giving up or anything, but accepting all of it has brought me to such a good place being in the position I'm in.
I'll keep everyone posted on what's happening.
Love to all,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | | | | 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 | Minnie,
I sure wish I could do something. I hope you and your docs beat this cancer down to the ground.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Damn, Minnie, I didn't want to hear that. This makes me mad. You really can't seem to get a break. I assume you are at Hopkins for this. Where is the retropharyngeal area in relation to the larynx? Above, below, behind thyroid, where? I'll have to look that up. I am so sorry this is happening to you again. Your doctor hasn't given up so don't you either. If it were me, I would want those biopsy results and surgery ASAP. Keep your chin and spirits up. You're gonna beat this.
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: Mar 2007 Posts: 163 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2007 Posts: 163 | Minnie... you have the most amazing attitude. We are praying for you and the family. I still on occasion listen to the recording of your little grandaughter singing...does she still do that.
Marica
Caregiver to husband (Pete) Stage IV Base of Tongue. Dx 04 2003 Chemo/Radiation no surgery.. doing great!
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Minnie,
I am so sad and frustrated that you and your family have to go thru yet another crisis with this @%&*$!* cancer. It is just too much!
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: Feb 2008 Posts: 341 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | Oh Minnie - I just don't know what to say. I am really sorry you have to deal with this again. I am glad you have found some semblance of peace and I know you draw strength from your wonderful family. Good luck.
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Minnie-Best of luck to you. You truly are an amazing person.
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: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Minnie: Just wanted to say that we're thinking of you! You're one of our 'heroes' here on OCF. We're all here for you, friend!
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 8 |
Minnie:
Im sorry that it wasnt better news. You are a very strong person and will succeed yet again. I understand what you mean by you have accepted what cancer gives you. Thats how I get my strength 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: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Minnie -- you have been a great support to me, and I know you will get through this latest unpleasantness with flying colors. We simply will not allow anything else!! ;-)
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: 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 |
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 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Yep Liz, sometimes all we can do is post an emoticon..words fail us! 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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | I sure feel like words are failing me. I am so sorry to learn of these latest results, Minnie, though you sound like you're handling the news amazingly well. I know you and your doctors will fight this with every trick in the book and with your attitude, skilled doctors, and so many people keeping you in their prayers, there's plenty of reason for hope.
But I just hate that you have to go through another battle.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | 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 | Minnie: I read about your most recent results yesterday but it has taken me until today to try to think of the right thing(s) to say. Firstly, I sooooooooooo know where you are coming from re acceptance. The first time you are diagnosed it is total fear, shock and horror. The second time is almost like the "other shoe has dropped". I too have entered the acceptance phase where my fears are far less. I tend to like to have things in my control - I think busy women have to be a bit controlling just to get things done, and I think through the first two cancer experiences I tried to control the process and the results. I have now come to accept that "all of this" is totally beyond my control. I now realize that (speaking personally) - it is in God's hands, and I can let the fear go.
Having said that, I sometimes wonder whether my "acceptance" denotes any lack of fight. I know that for you the acceptance has not lessened your fighting spirit and you are now fighting in a quieter but just as determined manner.
My thoughts are with you and your family. I feel sure that you will get through this 3rd round of treatment very well. Keep us posted.
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: Apr 2007 Posts: 93 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2007 Posts: 93 | Minnie,
I'm so sorry you are having to go through this $#@&*%% again. Your strength and attitude is amazing, and will get you and your family through this next round of treatment. It is such an evil cancer..but as they say "you have cancer, it doesn't have you". My best to you and your wonderful family....you all will be in my thoughts.
Nancy
Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Minnie, I have been following your story. I am keeping you in my prayers. You have my heartfelt concern. Linda
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Minnie,
I am truly saddened to hear of yet another battle looming on the near horizon for you. I know I speak for many in wishing there was something I could do to help you. I think that feeling of helplessness is even worse than any type of fear. I will be praying fervently for you and your family that His love will provide comfort and His grace will always be sufficient for all your needs. I also pray for His wisdom and His guidance to your entire medical team that they may develop the best possible treatment plan and carry out that plan to precision so that you may enjoy life to its fullest. I am sending my love to you and to your wonderful family. Though the burdens be great, rest assured that He will always be with you.
God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.
YBIC,
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Wow, Minnie, I am in constant awe of your strength and spirit. You are an inspiration to all.
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: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | I will be thinking of you Minnie. Please keep us posted as to results of the biopsies. Your strength is coming from deep within
through a deep resolve to make it through another hurdle.
Keep up the fight. WE are all wishing you through this thing.
May you find peace.
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Minnie,
I am so sorry that you have to fight this demon again! I will be thinking of you.
I do know what you mean about accepting what you have to do. It is a strange feeling but it works. You just keep doing what must be done. One step after the other so to speak.
I pray this will be your last time and be cancer free...!!! FOR GOOD! OK?
Bye for now.. 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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Minnie,
This is not the news we wanted to hear. May your great trust in the goodness and mercy of the Creator be a comfort to you. I will be praying that you have a good recovery from this current ordeal.
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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