| | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Patty,
I'm fairly new here and I have just read this thread and am truly just amazed at your wonderful spirit. My mom is dealing w/her fourth time w/this stuff and I thought she was strong. I think you are doing a fantastic job of standing up for yourself and of trying to enjoy life around you. I totally agree that I would want to know exactly what was going on - good or bad and think honesty is the least the docs can give you. I'm also glad to hear that the hospice folks were so positive - good to know they are on your side! Hang in there and keep a stubborn streak in there with all the good you have as it comes in handy sometimes. I will be watching for more posts from you and keeping you in my prayers. Lots of love and hugs to you - feel better - 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: 10,507 Likes: 7 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: 7 | I have received some information from Patty. She would like me to share the following message with you: Patricia sent you a message. -------------------- Re: today The CT scan showed some good news, but mostly not so good news. My airway and artery are not threatened now, but the tumor is not responding tot he Erbitux and is getting larger. It has broken through my right jaw now. Originally we removed my left mandible, but once this darn cancer found healthy tissue in the right side of my neck it went there and has now taken over. I have months according to the doc.
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 |
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: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Got you in my prayers Patty.
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 | There just are no words. We share your sadness Patty.
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 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Patty, there really are no words other than I am truly sorry and you are in my prayers.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Patty, that is such sad news. Hopefully they can get your pain under control so you can enjoy those months to the fullest. Will be thinking of 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: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Patty, I'm so sorry. You are in my thoughts and I will definitely be keeping you in my prayers. I, too, hope you will be able to take in everything you can to live these months to the fullest and remember that God is with you every second of the way.
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Nancy your mother does indeed sound like a very strong lady. That must be where you get the strength to take such good care of her. Thank you each and every one of you for your supportive comments. David it is good to hear from you. Hospice intake just left and we had a nice talk. I plan to set the record for the oldest patient in hospice if i can. Today has been a good day. First I have felt pretty good all day and second things are looking up at the lemonade stand. Last night I put out a request for painters and organizers to help me to get the house ready to go on the market. Well starting tomorrow I will have folks to help. Carolyn and I will be having a garage sale at her place after the house looks like something from HGTV. I have been able to locate new homes for all but one of my dogs so far (this has taken several weeks) and my friend that is helping me with this effort has promised to keep Buck until the proper home is found for him. The neighbor farmer wanted to buy my house prior to when I bought it and is still interested. Once the painting etc. is finished and I have an appraisal, he told me to give him a call and he will make me a fair offer. Then I will relocate with one of my furkids to my sister's house and we can look at our options again if need be. I am very grateful to my Heavenly Father who is guiding my through this journey. I am also so grateful for all of you very, very special friends that I love so much. I am going to finish this feeding and my sister and I are going to get some supplies for the party (tape, drop clothes etc.) while the puppers take a much needed nap. The farmers are out in the fields and the dogs are just having such a hard time with it. I will talk with all of you this evening or in the morning depending on how tired I am later. I have promised not to over due it. Luv Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 |
Patty, Im glad you were able to post and that you are feeling better today. If I was closer, Id be helping you with the painting and doggies. I sure wish I was in the situation to take one for you.
Having goals is a very positive thing to do. Ive done that since I got sick, always making short term goals. It makes me feel good knowing I am accomplishing things. Hope you feel the same.
Just please dont overdo it, take some time everyday to just sit and look at the sky, smell the flowers, pet the doggies. Those little things might sound silly but it can make you feel more serene.
Have a good day and best of luck with the painting.
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 | | |
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