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#143351 11-27-2011 11:11 AM
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I am the wife of a newly diagnosed husband with squamous cell carcinoma of the tongue base w/METS to the lymph nodes in the neck. Radiation completed 4 weeks ago. PET/CT scheduled for Dec. 5 w/followup w/radiation oncologist on Dec 7. Am looking forward to learning more about this disease.


CG for husband. Dx 08/11/2011 BOT cancer w/METS to neck lymph node.
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Becky Bowles


CG for husband. Dx 08/11/2011 BOT cancer w/METS to neck lymph node.
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Hi Becky welcome!!! Congrats on getting your hubby through it!! You can probably gve advice at this point. Hope things go well with the scans!!! Take care!


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
Cheryld #143359 11-27-2011 02:41 PM
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Welcome aboard Becky!

Glad you found us, sorry you had to! A word of advice on the upcoming PET, that close to the end of treatment they usually throw false positives so don't get too excited about the results. I'm not a fan of PET's so close to the end of tx.

Keep your chin up!

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #143366 11-28-2011 05:54 AM
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Becky, welcome to OCF! I hope you are starting to see some progress in your husbands recovery. You will learn alot from this site! It is packed full of useful info about oral cancer. Dont forget to check out the main pages too.

Best wishes with continued improvements with your husbands recovery.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Make sure his confirmed cancer cells are tested for HPV.

Make sure his next blood work includes TSH.

If he is to get 3 doses of Cisplatin concurrent with Rad do suggest a pre Tx hearing test as Cisplatin can cause perm hearing loss and it's impossible to prove post Tx without a base line.

Make sure he eats and eats and eats all of his favorite foods starting right now with no concern for calories.

Do not accept a nodal surgery recommendation without at least an opinion from a comprehensive cancer center.

We will get you both thru this as best as possible. This site is available 24/7 with tons of been there done that info.


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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Thanks to everyone for words of encouragement. We were putting a lot of stock in the upcoming PET/CT Dec 5. Now we won't get too worried if there are some false positives. Husband is definitely HPV positive. No chemo. Only radiation.
Why TSH test in next blood work?
Eating: I'm doing my best to get him to eat. He argues w/me. I usually win and he eats as much as he can even tho food does not sound good to him now. He's much pickier than he used to be. But I tell him to reframe his thinking to: How much food can I get in my stomach today? Strive for THE MOST!!!
Thanks for advice about nodal surgery. Not a soul has mentioned that.
He has quit the PEG tube feeding for now since he gets so sick each time he consumes a can of Glucerna 1.5 CAL. Upset stomach. Went a whole week after radiation w/no upset stomach. Cannot figure out why it still hurts. If he could use the PEG to augment his oral feeding, he would gain more weight. Looks very thin. Over 20 lbs lost; not gaining but not losing more. Clothes hang on him.
Back to work for most of the day for the first time in months. Know his clients will be happy.

Becky


CG for husband. Dx 08/11/2011 BOT cancer w/METS to neck lymph node.
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Actually TSH test would have been more useful prior to radiation. Often rads cooks your thyroid so some people bottom out a few months after - its best to have one prior to treatment so you know what's normal for your hubby. Good luck, on the pet! And false positives do happen so try not to worry.

Last edited by Cheryld; 11-28-2011 06:46 PM.

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
Cheryld #143397 11-29-2011 07:24 AM
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Sorry my comments were given as if he was about to start Tx. I now see he has already completed it. My bad.


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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Becky, best of luck to you and your husband. Sounds as if he's getting good care and definitely has a good support structure at home!

I too found it odd that they'd be doing a PET so soon after rads. Typically we get these things several months, even 6, after the end of treatment when things have calmed down. That minimizes the false positives. But then, I'm no doctor so yours clearly want to learn something I don't know about!

And yeah, getting a thyroid check now probably isn't too critical as he's already been blasted. But in most cases - let me amend to say in MY case - whatever damage the radiation does to the thyroid is very treatable with daily medication. Which amounts to taking a small pill every day and is no big deal.

Did he see a dentist for fluoride trays? That's another area of concern and you might check with your doc or dentist if you haven't been advised about this.

Continued good health to him. Keep asking questions here at the forum.

Courage!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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