#60176 01-23-2007 11:57 AM | Joined: Nov 2006 Posts: 95 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2006 Posts: 95 | Michael had his first CT scan today since he completed his radiation on 12/5/06 and we saw the oncologist and he said
Barbara S
C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
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#60177 01-23-2007 12:24 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Awesome news, thanks so much for sharing!!!!Take Care, Carol
I have used both meds for dry mouth, I don't think one was better than the other, my mouth still gets dry, I drink LOTS of water and use biotene products and seem to manage it better now.
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#60178 01-23-2007 12:25 PM | 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 | Barb,
I'm almost 5 months out of Tx and tell Mike that things do get better. He won't notice daily changes or even weekly changes but every once in a while he will bite into something and think.. boy I could taste that and eventually he will begin to taste things throughout the meal. That just happened to me a few weeks ago. I would rate my taste at 8 1/2 out of 10.
I haven't taken (or been prescribed) anything for my Dry Mouth and it's still the worst side effect I have. It is better than it was when Tx ended and it also affects our taste. I don't have to carry a bottle of water with me everywhere and I sleep without waking from it as well. I still can't sleep throughout the night but that's because of my CATS not radiation. I would rate my Dry Mouth as 7 out of 10.
The pain and stiffness also went away and that was months ago.
If he wants to ask more specifics about what he is going thru, just post and I'll tell him what happened to me.
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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#60179 01-23-2007 12:48 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Barbara - So glad you got such good news! Things do get better slowly. It does seem to take longer than it really does sometimes. The thing that worked for my son for dry mouth more than anything else is the Stoppers4 Dry Mouth and it's available at Walgreen's for around $5. Everybody reacts differently of course, but my son had tried a couple of other things that just didn't work for him until someone recommended the Stoppers4 Dry Mouth. With that he was able to get much better sleep. He doesn't need it anymore now and is beginning to taste more and more things. Still needs to drink lots of water tho' and Gatorade.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#60180 01-23-2007 01:02 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Outstanding news. The only thing that I found works is lots of water and time. Slowly things do get better. Except for the dry mouth.
Tim Stoj
63 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#60181 01-23-2007 01:02 PM | Joined: Oct 2006 Posts: 160 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2006 Posts: 160 | Great news, thanks so much for sharing. Let me know how the Evoxac works for him. I have been taking Salagen for 5 mos. now. It has helped some, but I still deal with dry mouth. Especially when I talk (which some folks would probably say I do too much).  I went so long with no voice, they can't shut me up now!!
Dx3/20/06 SCC,BOT,1N Tx:5cycles Carbo/Taxol, Rad:35x, brachytherapy:6x, completed 7/24/06
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#60182 01-23-2007 03:22 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Barbara,
Regarding your question about pillows -- I actually didn't have much neck pain until the past couple of years (a LONG time after my treatment, but my oncologist still thinks it may be an after-effect of the radiation). After some trial and error, I found that a memory foam pillow on top of a regular pillow was what I needed to prop up my head enough to give my neck the right kind of support. I also ended up having to have a nerve conduction study (which showed some upper spine problems, for which my doctor prescribed physical therapy).
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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