#67020 01-07-2008 04:22 PM | Joined: Oct 2007 Posts: 104 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Oct 2007 Posts: 104 | Dec, 3, 2007 we were told hubby could consider himself cancer free and we were eagerly looking forward to proceeding with treatment for his severe dysphagia in Jan. The second week of Dec. he developed what looked like a cold sore on his lower lip and by Christmas week it was growing and pustules appeared on his chin and right cheek and neck. By Jan. 1st swelling below jaw on right side of face causing pain and on Jan 5th surgeon confirmed our suspicions that cancer was back and now not curable. So in one month's time we have gone from "cancer free" to "palliative treatment". My feeling is that it will go very fast if this past month is any indication. What a year this has been!
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | 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 there On June 4th Robin was told every thing was going according to plan and looking good.A week later he had a pustule appeared under his chin,a week later he had a weeping sore and a week after that a hole the size of a grape.Hospital visit July 7th he was given exactly the same news.Cancer was back and incurable. It baffled me then and it still does.How does this happen?
I dont know what to say to you both,except i do know how you will be feeling,and i dont envy you.I send my love and thoughts.good luck.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | That had to be a back breaker to the both of you, I pray that he doesn't suffer needlessly and can enjoy to some degree the time he has left. this is the time to make him keep his chin up and make him laugh as much as possible.. Our family is always here for such times. I have you in my prayers and will tell the pastor to put u on the prayer list at 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: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | What terrible news and such a sad timeline. My heart goes out to you and Wally. I will be holding both of you in my thoughts. 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: 510 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Jun 2007 Posts: 510 | Devastating news, my dear...so sorry to hear that y'all are having to deal with this. Just know that your family will be in our thoughts. We're here if you need us...
Lois & Buzz
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: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | I am so sorry and know exactly how you must be feeling. The 'lumps' are appearing and growing fast for me now--but try to stay positive--last March/April, as my jaw started to swell rapidly to the size of a watermelon, I thought the end was very near--but I'm still here and a living example of how the right Palliative Care can help enormously. Stay with us and we will help you through all we can, Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
| | | | 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 | So sorry for the both of you. How did the doctors explain such a quick reversal ?
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 like Davids question and am wondering the same.
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: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2007 Posts: 64 | dear guys do you ever get over the fear. there are days i try not to think about ot at all. then there is other days it is just to much.i forgot which one of you had the not smoking phone no.i relly need help they say ever thing looks good. I am so scared go back to ent in jan 14.mine was on vocal cord.does anyone know what site to go to toget more info.Ineed it in eng Had 6 weeks rad and 6 chemo.sorry to babble. now i have some ear aches but also have been fighting bronchitis.Sorry forgot the capsitials . .
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | 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 | Lolita,
Go to the OFC Cancer Blogs forum and read the entire post- Richs plea!- I remember reading a drug that was given to Rich for smoking cessation and Julie said it seemed to make a difference. Now Rich was so addicted that he even smoked while his mouth was filled with blood from his cancer.
Lolita, we all react differently both mentally and physically to this ordeal and we all try to deal with all these issues in our own way. Don't hesitate to discuss your feelings with a trained professional.
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.
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