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#140693 09-28-2011 12:17 AM
Joined: Jun 2005
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So, I am going to simply share some of the lingering "effects" of my particular experience with the cancer and my course of treatment, in case it helps anyone else or inspires sharing of remedies, mutual commiseration or just a touch of sympathy smile (jk)

In no particular order:

1) Tinnitus: Even 6 years out, fairly severe, have about 22% total hearing loss, R side slightly more. Have tried dozens of OTC supplements, etc. For me, no solution. Had a 2 hour consult with Dr. Robert W. Sweetow 4 years ago. Am considering Pawel J. Jastreboff's retraining therapy. Some days are very bad, I can't even use the phone, but most of the time I am able to mostly not think about it.

2) Acid Reflux / Heart Burn : Got this REAL BAD early on in treatment and it's never gone away. Have tried maybe 10 different drugs. The only meds that work for mine are Aciphex, or Dexilant. Both of which make my insurance company squirm.

3) Stiffness, tenderness, bizarre "eruptions" (6 years later!?) , strange tightness, weird looking neck area from MRND and Radiation, with some transfer to my R upper arm/shoulder? soreness, trouble sleeping on R side due to pain/discomfort which "seems" related to the neck. Nothing (so far) that I can't live with. Some discipline and/or physical therapy and/or better nutrition and/or actually doing a little exercise would likely go a LONG way in this arena.

4) Decreased saliva. I hesitate to even mention this, since so many fellow survivors have a horrific challenge in this arena. Mine is very minor and less than 10% overall loss I'd estimate at this point.

5) Some minor "chemo brain" (or just getting old?) and not likely directly related to cancer, (but maybe linked with the tinnitus somehow) MAJOR ADHD, what was I saying? Oh yeah, super major ADHD.

6) An extra belly button. Well, not exactly, a small dime sized circle scar in the middle of my stomach from the feeding tube. No big deal, especially since that tube saved my life!

7) My thyroid was toasted. Not sure what happens inside me with a dead thyroid slopping around inside my neck, but the end result of the missing organ (gland?) is a precisely calibrated dose of the fake stuff once a day. My morning reminder that radiation is powerful stuff and a good sounding excuse when someone calls me on my weight issues.


Did I mention I am alive? Bring it on.

I'll take these any day for the high-value exchange of survival.




Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 16+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
Joined: Dec 2010
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"OCF Canuck"
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Awesome 6 years out!!! smile

Re # 3 physio would go a long way towards helping!!!! I started right out of rads (actually midway through) -stopped for a few weeks then started again. It helps with long term fibrosis lymphedema etc... now my mobility is about 95% pain 5% (due to stiffness in the morning) goes away after a few minutes. And strength is at about 95% in my affected shoulder.

6) I too have a 2nd belly button. But it's faded to a slightly darker spot right below my left breast.

Your ADHD may be related to your thyroid meds... smile

Congrats again!!

Last edited by Cheryld; 09-28-2011 04:33 AM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Same boat, same exact issues...+5yrs. I recently cured the #2, and am much happier all around as a result. It was SIBO causing my issues. Low thyroid and chemotherapy both disrupt the bacterial balance in small intestines which caused massive bloating and reflux all the time in me. Some meds and probiotics cleaned it up and now I eat normal again. Red wine is still a bit tough sometimes, but otherwise normal.

Also taking testosterone with synthroid, which helped me get out of the mental fog I was in most of the time.

My hearing loss is only a problem in crowded noisy restaurants and such. I cant hear any conversations so it's hard to be social in those environments. Otherwise ok..

Life is great dispite small issues....

davew #140953 10-02-2011 02:45 PM
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Happy 6th anniversary AND HOPE YOU HAVE MANY MANY MORE!!! Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
Joined: Jan 2011
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Thank you for this post, Michael. I appreciate its honesty and candor. You are such an inspiration to me. I am only six months post-treatment and feeling all right considering what I went through, but wondering what the future will bring. If cancer "taught" me once thing it's that the rose-colored glasses I once wore have outlived their usefulness. You seem to have a great attitude and the ability to look at things as they are, something new to me. Thanks again. -Michelle


SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.

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