Hey All, I just logged on to this forum as I am new to this whole scene. I was dx in Oct with SCC+HPV of Lingual tonsil with 2 lymph nodes in neck also. Have had CT and PET and plan to start treatment Dec 2 with Chemoradiation in a study for 6weeks. I considered Proton therepy but decided to go ahead with the study since it was ready to start.

You have found a great group to guide you on your journey. It is unfortunate that you had to look for us much like it was for me. Unexpected. Make the most of your pre-treatment time to prepare your body. Hydration, nutrition, exercise (strength, resistance, cardio) as though training for a competition. You will need this and be thankful you took the time. Many will come behind me and take you further than I can. I am still in recovery even though my treatment was over in mid July. You will make it and stay focused on that. Finally ask many questions.

Hi Michael,
Welcome to our family, though sorry you have to join us. Sounds like you have a tx plan and are ready to begin your battle. It is tough, but doable. Where are you being treated?
One suggestion for the next week is eat as much as you want of whatever you want. Your taste will change soon, and honestly nothing may ever taste the same again.
Keep in touch with us and we will help you get through this. We all know exactly how you feel and where you are with things. It stinks, but you will get past it. We are 2 years out now and life is pretty much back to normal. Has been for about a year, except for taste. Kevin says he still doesn't have sweet back. One bite that he can taste, then it gets boring. Everyone is different though.
Will be watching for updates as you move forward.
Best wishes,
Kathy

Hello Michael - you found the best support group anywhere for oral cancer. 9,000+ members. If you can't get your questions answered here, they likely can't be answered.

My diagnosis is similar to yours, except I have no lymph node involvement (yet). Started radiation 3 weeks ago, it hasn't been bad except now taste is gone. When food has no taste it's hard to make yourself eat, but eat we must, so I'm in choke it down to survive mode. I wish I had eaten more earlier like everyone here said to do. Don't make my mistake, eat like a pig, ice cream, cake, as much as you want, as often as you want. You won't get fat, you will lose all of it and more. I'm down 16 pounds, will probably lose that much more before it's over. My nutritionist is angry with me (you're not eating enough). I'm trying, but if I eat more I feel like I'll puke.

Don't let that HPV positive thing bother you, it's actually a blessing in disguise as it makes your treatment easier and your long term survival percentage higher. So, be glad you have it.

Get yourself a spiral notebook to jot down notes from what you read and questions you think of, because there are going to be a lot of questions, impossible to remember them all.

I'm sure others will give you more things to think about, so I'll stop.

Welcome to the family, it's a good one, they will help you a lot, they have helped me immensely.

Tony

You said you passed on te Proton therapy...what were they offering and where would you have been treated?

Welcome Michael,

Sounds like you have a solid plan in place. As mentioned here, eat as much as you can possibly stuff in now as you will lose weight during radiation. Stay close here, research, and post as you need to. Don