#60317 02-21-2007 03:52 AM | Joined: Feb 2007 Posts: 14 Member | OP  Member
Joined: Feb 2007 Posts: 14 | A little over a year ago I was dianosed with non-hodgekins lymphoma early stage one. After chemo and rad it was gone and has been gone. 4 months ago I was dianosed with stage 4 SCC with a tumor at the base of my tongue. I'm 2 out months from rad, my mouth is still sore, I'm still using the feeding tube and my taste is out of whack. I feel down, but alot of that has to do with this Michigan winter. I have a millions questions and I am so glad I found someplace to ask them. I'm glad I can ask some real folks, the Docs at U of M Hosp. are great, but they sometimes are hard to pin down on things. Is there some SCC surviviors with more time than me to ive me an idea when the mouths heal? Does taste come back? Any other things I should know?
58 yrs old. Stage 4 SCC base of tongue T4N2M0 no surgery chemo 7x radiation 35x completed treatments 12/20/06
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#60318 02-21-2007 04:00 AM | Joined: Jan 2007 Posts: 108 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2007 Posts: 108 | Hi bobd,
I had something similar to you and it took 14 months for the saliva and taste to return back to what I thought it was post surgery/ pre radiation. It varies greatly with every person. It also varies with how the taste buds/saliva glands react to the radiation. So there are many variables in play and no way anyone can tell you exactly when the mouth will return to its new normal.
On the feeding tube, you most likely have not used your mouth muscles and they have atrophied. A swallowing therapist can help you with that and I would recommend you ask your doctors right away if they have not already mentioned it. You need to get the mouth working again, even if food tastes bad.
Feel free to ask more questions. It helps because I have been where you are now. I however, did not have this board to help 4 years ago.
Take care and fight hard.
Jim
T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
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#60319 02-21-2007 04:08 AM | 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 | bob,
I am now almost 6 months post Tx (see below) and my taste is probably 8 on a scale of 10 and my dry mouth is a 7 where 10 would be normal. I enjoy eating now and I eat anything I want. Changes come quickly and slowly meaning I will go weeks with no change and then all of a sudden it improves and then I will go a while before I notice the next improvement.
My mouth healed very quickly but I didn't have hardly any mouth issues that others had. My main problem was nausea which resolved itself 3 weeks after Tx.
Just hang it there, you will see improvements.
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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