Now that my husband has completed 4 of 6 induction chemo treatments, we're looking ahead to the next phase, chemoradiation. He'll check into the hospital, first week of July, for the first cycle of daily inpatient radiation and chemo.

He's very concerned about retaining function. Met with the speech pathologist at the beginning of chemo, has been diligantly doing his exercises twice a day. Most of these exercises involve mouth and jaw, along with the shaker exercise, where he lays on the floor, involves his neck. It seems his exercises are designed to keep swallowing strong, and his jaw moving, maintaining opening ability, avoid trismus. So it seems the mouth/jaw function is being protected. We're concerned also about him losing mobility in his neck, ability to turn his head. When we asked about neck mobility, the speech therapist said that falls under the physical therapy department, who he has not met with yet. We're going to ask the rad onc about setting that appointment up, but I'm curious what others in here have done during radiation to maintain neck mobility. Particularly, did you have special exercises? Did you work with both a speech pathologist and a physical therapist?

Hi Ana

My sense is that the neck mobility issues are mostly associated with surgery esp neck dissection (although wouldn't hurt to get some exercises to do in case). This may be corrected by those who know better though.

Great that your husband is doing his swallowing exercises - persistence is nine tenths of the battle.

I am not familiar with this style of chemoRADs but would assume they would not be doing anything that would be expected to give you MORE side effects than the standard once daily regimen?

good luck

Karen

I know I've said this before but I really think your husbands Tx is an overkill for an HPV+ Dx.

David - from what I have read, if the tumor is larger, or the patient is a current / former smoker, or if there is extracapsular spread they need to zap it harder. My entirely non-professional guess is that it is the T4 status of the tumor that are addressing. I like that they are using Taxol - there were very good results with Doxetaxol in the TAX 324 clinical trial.

Ana - the neck mobility wasn't a huge issue for my husband. It was harder to stretch when the radiation burns were miserable. His big daily stretching exercise was turning around to back down the driveway - we are in the country - it's a long driveway. His jaw mobility was more of an isssue and he did do daily stretching for that. He still doesn't have his pre-treatment range of jaw motion, but is not especially bothered by it.

Thanks for the feedback Maria & Karen, that's encouraging. David, in the whirlwhind that has diagnosis and treatment, I somehow missed what you said Vince's level of treatment. I'm interested to hear more about your concerns.

Vince's original tumor is 4 cm, covers 2/3rds of the base of his tongue and is deeply invasive into his tongue. He has a large number of nodes involved on both sides, down into his neck, but nothing crossing the collarbone, thank goodness. MD Anderson and University of Chicago proposed almost identical plans, with the main exception being that U of C does their chemoradiation inpatient, which considering the hospital is a 4 hour round trip, is a godsend. What have you seen other HPV+ patients with this level of locally advanced cancer successfully be treated with? A

p.s. he has always been a non-smoker

Hi there I'm sure davevwill respond bu it sounds to me like here being aggressive with what appears to be a very greasing and xtensiv cancer... Hugs and good luck!

AnaD,

After reading your last post I withdraw my concerns it's just that whenever I see HPV+ and the proven fact that HPV responds better to the existing Tx than HPV- cancers I look to see the level of Tx and if I see a Tx plan that is more aggressive I initially get concerned. One day I hope that more research can be devoted to determine if a lower dose of radiation and/or chemo (and what that Tx plan would be) for treating HPV+ OC. Certainly the number 1, 2, 3 & 4th goal is to cure the patient but life altering side effects should come into play at some point. What we possibly have now with HPV+ OC cancers is a chance to achieve goals 1-4 and reduce the long term side effects but at the rate we are scientifically progressing thousands, perhaps hundreds of thousands of people might be subjected to unnecessary radiation/chemo and unnecessary long term side effects.

It's patients like myself that make doctors reluctant to use less aggressive TX for HPV oral cancer. My base of tongue cancer was Stage IV with a T3 size tumor that tested positive for HPV 16. The MO knew that HPV responds better so he just used Erbitux for my chemo instead of combining it with one of the platinum based chemos. It did not turn out very well for me. He went with carboplatin the second time and so far so good My RO treated me the same as non HPV both times since he felt any deviation was not worth the risk of recurrence. I'd stick with the aggressive TX because you do not want the cancer to come back
charm

Thanks David. One of the things that drew us to this treatment team over MD Anderson was a clinical trial they are doing to reduce radation if the patient has a good response (greater than 50% reduction in total amount of tumor mass) to induction chemo, including the trial drug Everolimus. If my husband meets that standard, and we suspect he will as he can feel his nodes have gone down dramatically, he will recieve the same dose of IMRT radiation, but in a reduced field, hopefully preserving better function.

On a side note, I touched base with the rad onc team yesterday, they said that when Vince is inpatient, a physical therapist will work with him on exercises to retain neck mobility, so it seems that component is covered, thank goodness. Vince has been a great patient, doing everything asked of him, actively involved in his own healing, I'm sure he'll go at those exercises with the same gusto. A

Ana wrote:

[quote]as he can feel his nodes have gone down dramatically[/quote]

EXCELLENT! I'm really glad to hear that.

AnaD,

Sounds like a PLAN!

Charm,

Correctamundo, must meet Goals #1 - 4 first.

That's so great.... ;o)

Kris too was HPV +ve and received the standard treatment of cisplatin and 35 IMRT with
70gy.
Despite this he has had a reoccurrence.. I would always say hit it with the maximum and would definitely hate to be in the trial of lesser treatment for being HPV+ve.
Tammy