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.
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!
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
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.
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.
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
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.
Sorry my comments were given as if he was about to start Tx. I now see he has already completed it. My bad.
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 and all,
Great advice. He goes to dentist next week, so I told him about the fluoride trays. He is now using fluoride toothpaste.
He has worked for 2 days in a row now. And he is eating more. 2000 calories today. I am so thrilled.
This message board has done so much to relieve my anxiety (in addition to husband feeling better). I feel like it's ok to ask dumb questions and get straight answers. This is absolutely wonderful.
Becky
CG for husband Bill w/SCC BOT w/mets to nodes in neck. Will get more info later when I have a minute to look up dates. Radiation completed. No chemo. Scheduled for CT/PET next week, 6 wks post radiation