| | 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 | Each of us can be different but for me I didn't notice a real big improvement until 15 months post Tx. IMO the 2 year mark is more realistic to measure your recovery in taste, dry mouth and just about everything else rather than 1 year.
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 2011 Posts: 6 Member | | OP Member
Joined: Feb 2011 Posts: 6 | I thank all of you for your encouraging words. The event of oral cancer is so overwhelming and to hear from others who have made the journey provides a glimmer of light to an unknown reality.
My best to you,
Chris
35 radiation txs. 7 cistplatin. SCC on tonsil and 2 possible nodes. 14 months out and holding the line. Just graduated to ENT visits every other month.
Life just seems to keep on happening with or without you.
| | | | | 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 am on my 4th year soon and I only have a taste for the 1st food that enters my mouth. Then after it could be cardboard or mud. No taste and that damn burning of the mouth.
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: Mar 2010 Posts: 4 "OCF Canuck" Member | | "OCF Canuck" Member
Joined: Mar 2010 Posts: 4 | Hey Chris,
This probably won't answer your question but it's my story and you may glean something from it. I'm 65 and suspect that you are somewhat younger. Best wishes!
Squamous cell carcinoma, primary site, tonsil.
I began looking for sympathy and solutions but it appears that each of us is uniquely different in respect to results of our treatments. Many of you have problems much greater than mine.
I had a radical neck dissection and 35 RT�s, the maximum in this jurisdiction
My wife insists that the issues are all in my mind. Regardless, I have virtually no saliva, taste buds are wacked, teeth are gone, gums won�t properly support dentures, sinuses are chronically infected, lower jaw is dead and won�t support implants.
(My �buds� went south after about 12 exposures.)
I weighed 212 lbs going in. My current weight is 142. I have lived for nearly 12 years on liquid meal supplements and fresh juice, every day. I also take an herbal tea, daily but am unable to identify it due to forum rules. Blood tests indicate no disturbing inequities.
The biggest problems relate to lack of stomach capacity and after 11 plus years of boost, I don�t look forward to the necessary, daily nourishment. Additionally, the buds come and go. Meat is consistently bad while veggies and spices are OK one day and horrid the next. Fortunately, fruits are almost always acceptable. Lack of cleansing saliva doesn�t clear tastes so they tend to �pile on� and confuse the palate. The use of water, wine or other liquids has not been successful in aiding this problem.
Does anyone have experience with psychiatric treatments for similar issues?
Any suggestions would be greatly appreciated!
Life is what occurs while we are making other plans!
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