Hello members,

I joined this site not long ago b/c my long-time boyfriend was dx w/SCC. I've browsed this forum several times since and it seems like an informative, supportive group of people.

John will be starting radiation to the right neck next week; just had his mask made which he said was pretty freaky (he thought he was just going in for a CT scan). Kind of nerve-wracking. He doesn't have the usual risk factors for this illness so that made the diagnosis a surprise too. Anyway, I'll be checking this site frequently and hopefully can offer tips down the road, as others have here.

Best of luck. I will be praying for you.

MG,

Has anyone mentioned HPV to him?

HPV causes appx 70% of the tonsil SCC cancer and there's tons of info on this site regarding the virus. If he fits the profile he can have his cancer slides tested for HPV.

Did they mention any chemo as part of the TX?

Did they mention a Port or a PEG?

Re the radiation, tell him to eat as much as he can now and be sure to eat all his favorite things. Most likely he will loose his taste and develop severe dry mouth which will last many many months post Tx.

BTW I don't think there are any "usual risk factors" anymore for OC. It used to be primarily caused by excessive tobacco and alcohol; then they linked HPV to the Tonsils and Base of Tongue region and now we're seeing people, and very young ones at that, without a history of tobacco and they are testing negative for HPV.

Anyway best of luck and ask as many questions as you want and don't forget about your needs as his Caregiver as it can get pretty rough on you as well. This Tx can be pretty brutal for most of us but keep in mind the worst part usually only lasts 7 weeks; from the 4th week in to the 3 week post. I always have maintained that this cancer and it's Tx is 50% mental so just be prepared for anything and lets hope he's one of the lucky ones that breezes thru.

Welcome, Gretchen, and tell John he has a group of friends here who understand what's happening with him and he can come to for support any time. Beat of luck.

David--to answer your questions:

PEG was mentioned/recommended; it was actually scheduled but he asked to put it off until he really needs it so that he can keep exercising as long as possible (w/o having another procedure to recover from right before starting rad).

We read about HPV via on-line research and that seems like a possibility. In addition, the RO's nurse mentioned it (in the one real visit he had!).

ENT/RO planning on just the surgery/rad combo at this point.

Thanks for the comments and support; very much appreciated!

To me it seems better to get the PEG when your mouth is not inflamed and one is not (yet) miserable, because if you were doing fine you would not need a PEG. Getting a PEG is actually not that big a deal once you can wrap your mind around it.

Re exercise ... I definitely would not overdo it. This was the last thing on my mind at that stage.... it is not like he is getting his teeth cleaned.

M

Gretchen,

Often times radiation must be delayed if the last minute decision is to get the PEG and delaying radiation during Tx is just about the last thing you want to do. Kinda like giving the enemy time to recover when you have them on the run.

And I agree with Markus, forget the exercise. He needs to be pumping some food in his body as if he was getting ready for a fasting contest. His exercising is very counter productive to that goal right now.

Re the chemo....I would inquire as to why no chemo especially since he had positive nodes. Have him mention weekly Cisplatin.

Gretchen

I posted another response to John's exercising in a different thread but here is something about the PEG. If he gets the Peg now before his mouth and throat are trashed by the radiation, it is an easy outpatient procedure done by a gastro doc with a light down the throat, a hole in the stomach and a tube - easy peasy, If he waits , then you need surgery with a fluroscope and an interventional radiologists, Much more complicated,and painful like I ended up suffering
finally, you can easily exercise with a PEG, In the two months between recovering from surgery and starting this second round of chemo and rad, I worked out at the gym everyday with a peg, I lifted weights, I did pilates, I did the bicycles, Just tape the PEG to your stomach,
It sounds like John needs better advice from his medical team or else he needs to start asking them better questions.

Gretchen,
I have been down both roads, I had my PEG put in prior to my RT in 07 and it was not that big of a deal, sleep and wake up and its there. Whereas in 08 I had it put in after my microlaser surgery via the ole fluoroscope method, painful and wide awake the whole time, not fun. So get it now I would say.

Again, thanks for the input; that all makes sense. Regarding "better advice" or "better questions," it has been rather frustrating in that the RO's office seems pretty flaky/unorganized, and he really hasn't had any appt where he got to meet with the doc and discuss tx plan, options, etc. There was no talk of dental care, tx issues, length of tx, etc at all; almost all info we've gotten is from sites like these. He had his first rad last night and will go in again today but wasn't even on the schedule so had to call them first thing this a.m. to get on the schedule. No talk of pain meds or anything; kind of frustrating! The nurse did meet with us once early on and did state the tx would be hard, etc, but it seems like a 'flying by the seat of one's pants' kind of thing. When J asked about being able to postpone the PEG tube a bit, I wish they'd pointed out what a cpl of you just mentioned about the greater challenge of doing the procedure after rad's already started (or mucositis has developed); it was just "fine." That info makes a difference!