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#82496 10-21-2008 11:16 PM
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Well...Here's some facts.

I am in GREAT shape all things considering. However, I am also 60 + pounds overweight again. Looks like that ultimate diet plan I was on, the one with chemo & radiation, it (like all other fad diets), doesn't result in permanent weight loss wink

Next, I still have EXTREMELY BAD TINNITIS. 75% of the time I don't think about it nor actively "notice" it. Truth is, it is there 100% of the time and sometimes I can ignore it for 1 second, but ignoring it is like telling someone not to think about a blue elephant.

I have been getting (increasingly over the years), muscle spasms in the surgery/radiation areas. Some light twitches. Occasional cramp. But I am dealing with it.

I had ONE physical therapy appt and am told I am stupid for not continuing it. Stupid? Me.

What else, oh yeah, my thyroid was 100% toast!!! Don't forget boys and girls -- HAVE YOU DR CHECK YOUR THYROID.

Mine was virtually non-existent and we didn't find out for 8 months! I could have saved a fortune in triple-espressos.

Several of you on here told me to have it checked, but I think I kept forgetting, or was just too stubborn. Or stupid?

Update on saliva, food, tastes. Wow! I feel lucky. I have I would guesstimate, about 95% full salivary function. 90%+ food taste and all in all feel good.

What else? I can't open my mouth as much as I used to be able to. (Have somehow managed to cram LOTS of food in though)

I seem to have some short term memory issues, but that could even be diet, lifestyle related (did I mention I am turning 40 this March!!?? UUgh!)

I have pretty heavy duty heartburn but take meds for it. This, could also be related to obesity.

Here's a strange one. For over 7 months now. SEVEN MONTHS, I have had a persistent, Dry cough.

Of course I was out of my head crazy after week one. How do you think I felt after week 9???

Here's the deal. It ONLY ever (and always!) happens just as I am drifting off into twilight sleep, at that precipice where one drifts from consciousness into light sleep...

B-A-M !!!!!!

Cough. Cough!

Jerks me into full awaked-ness-ness in a religiously reliable spasm that Seth has grown particularly displeased about.

In general, it is EVERY single night. I have asked my local Onc about and the ENT specialists at UCSF. Their only answer was to get an X-ray to rule out lung cancer, I guess.

Had that about 3 months ago. Radiologist said ALL NORMAL.

Still worried though (do we ever get over the worry??). One of my employees went to the same radiologist for a sprained knee x-ray 6 weeks ago. Turns out he misread her knee film. It was fractured in 3 places! She missed the window of opportunity to get it treated and now will have a limp the rest of her life. Plus, the likely prospect of having metal pins installed in her knee. Yuk. (is it just me, or does anyone else smell the lawsuit?)

Well..I placed a whitty update on the survivor forum in case anyone is wondering how I could possibly have the nerve to post here and not even acknowledge the fact that I have been neglectful here on the boards.

I think that is about it for my list of complaints.

Overall, I feel good. Would I go through all the treatment again to save my life? YES. Would hate every minute of it. But it is worth it.



Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
Michaelii #82502 10-22-2008 03:44 AM
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Congrats and thanks for sharing! Can't wait to share this with my mom, she has some of those same twitches/spasms.

I'll keep your mom in my thoughts. I wouldn't want to wait till December, that's for sure!

Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
Donnarose #82510 10-22-2008 06:32 AM
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Michael,

Your only one year ahead of me and my diet is still working.

My thyroid crapped out 4 months post Tx and I have regular bloodwork done to track it. I still require a large Cafe con Leche in the morning to rev up my engine.

I also have memory lapses but I'm 20 years older than you so whose to say? I don't have any persistent cough.

I don't have any mouth related problems.

I also have pretty much back to normal taste although it's still not perfect like it was pre Tx.

I didn't require any surgery.

Hey but it's still better than the alternative and I have talked to and met some pretty amassing people on this site in the last 2 years.


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.
davidcpa #82525 10-22-2008 10:46 AM
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You figured one PT treatment was enough? No wonder you have twitches and spasms. I have never had that problem. I even go back for a tuneup every couple of years if my neck starts feeling tight.

Hopefully you are doing religious dental care and see dentist every two months. You don't want your next diet to work because you are toothless.

Time to drop the weight again. Are they checking your TSH level? Your thyroid being out of whack can add pounds.

Glad to hear you are doing well.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Eileen #82530 10-22-2008 11:21 AM
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Thanks for the support Eileen.

No, I figured I need need to be on PT for a while, but have been too stubborn (=lazy) to keep going.

I do go for dental cleanings every 2 or 3 months, and have been told I need a couple new filings (any major issue I should warm my cancer ignorant DDS about?)

Being a little nervous (=big chicken) I haven't scheduled the procedures yet.

I do get my TSH levels checked every 2 or 3 months, and have had to make adjustments to the meds as a result.

Has anyone ever heard of "natural" thyroid as a reliable alternative to the synthyroid? A Dr. guest suggested it and not sure if it's some homeopathic thing or what.

As far as the diet, I am very near electing for a surgical solution.



Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
Michaelii #82563 10-22-2008 04:21 PM
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If you are taking meds for hyper-tension, one of them is notorious for producing persistent, dry cough.

My tastes are sparse, esp sweets, and esp since the removal of most of my toasted tongue, so the Cancer Diet is working for me.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #82567 10-22-2008 04:47 PM
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Michael,

A word from the local dentist. You can't afford to postpone those fillings. Don't wait till you need a root canal.

No suggestions for any warnings for your dentist.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
wilckdds #82598 10-22-2008 07:34 PM
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except maybe nothing that disturbs the bone...


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #82606 10-22-2008 08:26 PM
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Thanks Jerry, that's a good point since I've been warned to avoid oral surgery, and a root canal sounds like something sorta surgical.

He has told me I'm his only patient with cancer, so I am little worried about him not knowing about the circulation, radiation issues.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
Michaelii #82607 10-22-2008 08:27 PM
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PS: Pete, not taking ANYTHING except some antacids & synthyroid.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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