| | Joined: Nov 2011 Posts: 6 Member | OP  Member
Joined: Nov 2011 Posts: 6 | 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.
| | | | | Joined: Nov 2011 Posts: 6 Member | | OP Member
Joined: Nov 2011 Posts: 6 |
CG for husband. Dx 08/11/2011 BOT cancer w/METS to neck lymph node.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | 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
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | 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.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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.
ChristineSCC 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  | | | | | 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 | 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.
| | | | | Joined: Nov 2011 Posts: 6 Member | | OP Member
Joined: Nov 2011 Posts: 6 | 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.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | 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
| | | | | 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 | 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.
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | 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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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