#74977 05-29-2008 04:47 AM | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Hi All. I cannot tell you all what a wonderful resource this site, and these forums, has been. I was diagnosed on April 23 with a Stage 3 SCC on my left, lateral tongue (I'm a previous Non-Hodgkin's lymphoma survivor, as well).
I had a partial glossectomy and upper neck (left side) dissection with a free flap on May 19 and I'm being sprung today. Cannot wait to get home - just started eating again yesterday, and all that work to swallow crappy hospital food just seems a waste! I'm scheduled to start radiation with weekly Cisplatin - but for now, I'm healing and planning on resting for the next couple of weeks.
Last edited by margaret_in_ma; 05-29-2008 04:49 AM.
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: 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 | Congrats for being a trooper this far. Soon after the rad starts you will loose your taste and it may not recover for well over a year. You will also loose your saliva and you will most likely loose a lot of weight so take this time to eat everything you dream of without regard to FAT or HEALTH. In fact it's a good idea to try to gain as much weight as you can right now. Quite the opposite of what we are told each day but, believe me, it will come in handy as you progress through your Tx.
All of us here will help you throughout this process so don't hesitate to ask any/all questions or just vent. WE, for the most part, are not doctors but we are VETS so use us.
Where are you being treated?
Were you a tobacco user?
Good healing and good luck.
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: 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 Margaret,
Enjoy your days of rest at home over the next weeks.
As David says eat all your favourite foods over that time.
Take care and all the very best.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Thanks for the responses : )
David, I'm being treated at Dana-Farber in Boston and never used tobacco. The eating thing is still a little difficult with my new tongue, but the good news is I'm already about 50 pounds overweight, so I'm ahead of the curve on that.
I talked to nutritionists and swallow therapists before I left the hospital, so I'm eating as best as can for now. Each day its gets a little bit better.
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: 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 | Margaret, I have only heard positive things about Dana and it's best, in my opinion, to be treated at a Comprehensive Cancer Center where there is a multidisciplinary approach to your treatment plan. As far as your weight, don't get too comfortable with being 50 pounds overweight. Some people loose far more than that during Tx. I was at my ideal weight going in and lost 30 pounds and it took me over a year before I started to add some weight back. Since you were not a tobacco user have you been tested for HPV?
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 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | David, from what I've read, I expect weight loss and retention to be a huge problem (during treatment for lymphoma I lost quite a lot of weight) but its so rare for me to be able to make light of my weight problems. I haven't been tested for HPV, although suspect I am negative. My thinking is my earlier chemo is more a risk factor for this illness than anything else. As I go along, I may ask more questions about this, but for now, I'm not seeing the cause as so important.
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 | Any food you can eat, go for. I would just love the cheapest and least desireable type of real food,. I have had no solid food since early January and it will be quite awhile before I am allowed to get dentures. LOL Eat anything in sight even if you can't taste it. Take a few bites for me while you are at it.
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 | Margaret, Not sure I understand what you mean when you said.... My thinking is my earlier chemo is more a risk factor for this illness than anything else. Also how can you suspect that you are HPV-? The 2 main causes of SCC are Tobacco and HPV so if you weren't a smoker then you stand a good chance that HPV is the cause.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Margret, Welcome to this board. I got a second opinion at Dana Fraber three years ago when I had my tongue cancer and I now wish I gone for treatment there as well (long story). I have been treated since at Brigham and Women's for esophageal structures so it's possible we've seen some of the same docs and speech pathologists. I'm seconding what everyone else here has said about eating everything you love right now before the radiation starts. I also was about 50 pounds overweight when I was diagnosed and by the end of treatment I was very glad of that as I lost about 60 pounds the year I was treated (I also was treated kind of simultaneously for breast cancer so it was a hard year for all sorts of reasons). David, if Margarets cancer was on the oral tongue, which it sounds like it was, then the location of Margaret's tumor isn't typical of HPV cancers from what I've read. But I think if she isn't interested in the cause right now, the best thing to do is not argue about whether it is caused by HPV with her. It doesn't make a difference to her treatment. 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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I agree, thinking about cause right now is a mute point, and there are more important things to focus on. HPV status is not right now going to alter treatments decided on, and anterior mouth cancers, given what we know right now, are seldom HPV positive.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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