| | Joined: Jan 2011 Posts: 6 Member | OP  Member
Joined: Jan 2011 Posts: 6 | Hi I new to all this stuff that goes on after having tonsil cancer stage 3 its been 13 weeks out since chemo/rad. i was told I'm cancer free yea! but dry mouth and really a bad taste so food doesn't taste good at all will it get better it has to because i can't seem to enjoy nothing.
T2N2bMx poorly-differentianted, HPV (negative)basaloid SCC of right tonsil
Diagnosed 7/16/2010 Began 7 weeks of radiation and chemo on 9/2/2010
Finished 7 weeks of radiation and chemo on 10/20
Final PET scan on 1/21/2010 Prognosis: cancer free!
| | | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 147 | You are very new out of treatment and the problems you are experiencing are common to most posters here. I am 20+ months out of treatment and I still carry a water bottle with me to help with the lack of sufficient saliva. And as far a food tastes - this is a moving target. It will take your taste buds quite awhile - some in this forum say 2+ years - to reach their former tasting self. Sweets still have an acidic taste to me and other foods are a moving target. So - be patient. It takes time, alot of time. Just keep eating. You are right - it is difficult to enjoy eating but just keep eating for the nutrition.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
| | | | | 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 | Be patient as your mouth as well as your body both physically and mentally have been put thru that ringer. Depending upon many many factors including of course your treatment you will recover as you will recover. Yea I know thanks for nothing but really no one can predict how you will recover. We can guess but even to do that we need to know all about your Dx and Tx. See everyone's Signature Line and add yours if you care to.
My own personal recovery took all of 2 years. My taste and dry mouth seemed to recover concurrently. I saw my first improvement at 4 months, then again at 5, 15 (the biggest improvement) and a tad more at 24 months. I would guesstimate that I am around 95% of my pre Tx normal.
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: Jan 2011 Posts: 6 Member | | OP Member
Joined: Jan 2011 Posts: 6 | Thanks for your reply I needed to hear that there is hope down the line. I will get more infor. as soon as i figure out how to put it out there. L  ike i said its all so new to me.
T2N2bMx poorly-differentianted, HPV (negative)basaloid SCC of right tonsil
Diagnosed 7/16/2010 Began 7 weeks of radiation and chemo on 9/2/2010
Finished 7 weeks of radiation and chemo on 10/20
Final PET scan on 1/21/2010 Prognosis: cancer free!
| | | | | Joined: May 2005 Posts: 24 Member | | Member
Joined: May 2005 Posts: 24 | Carmen
Did the MD put you on meds for salivation? There are 2 that I know of Saligen and Evoxac. I tried saligen early after my treatments ended to no success. I have been on Evoxac 30mg tid and have really gotten some relief. The bad taste does go away- Just stay with bland foods nothing spicy or irritating.
Maria
Maria 33 when diagnosed with SCC, partial glossectomy with skin graph from thigh,rt side nodes removed,ten nodes positive, PEG, 30 RAD tx, 1998. Scans clean.30 HBO tx-Massive dental work 07-08, ORN present 2009.
| | | | | 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 | If you look above at MY STUFF and pull down to PROFILE and then scroll down to the SIGNATURE block you can type anything you want, well almost anything!, and then be sure and hit Submit. That's it.
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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