ssc, hpv in tonsils on both sides and eblarged lymph node

Thank you. I’m so glad I decided to join. I’ve already taken in so much useful information.

And thank you for the blessings.

Hello Marie, I was diagnosed with the same cancer back in August. I also had lots of back and forth regarding what surgeries and treatments I'd undergoe. I eventually had the tumor on my tonsil removed and a full neck dissection removing 48 lymph nodes in September. I'm currently entering into week 4 of 7 of radiation treatments. Please reach out if you have any questions and I'll do my best to respond with any knowledge or advice I can give. Virtual Hugs

Hi Marie. I’m getting through the treatments. I’m grateful I’m starting week 4. The side effects do start around week 3. Some of my beard fell out over the weekend so I shaved. Silver lining is I look younger haha I have a very dry mouth and saliva issues. Sugar free seltzer water really helps with the gooey saliva and I use biotene for dry mouth. I’ve heard xylitol gum helps produce saliva. Ive been very good about using the prescription strength fluoride the dental oncologist gave me. The pain is starting to get bad but Tylenol and ibuprofen help along with Gabapentin. Has your husband been fitted for his radiation mask? One of the most difficult issues I’ve had is that my mask got very tight and choked me once my throat swelled up from the radiation. Ask the radiologist to take that into consideration when fitting the mask. I’ll keep you posted with any lessons I learn and advice to offer. I’m very grateful this is a curable cancer so there’s lots of hope. Your husband will get through this. Hugs

Reading your comments is a weight being lifted. I can read articles, listen to the doctors, but hearing actual experiences is easing my mind a bit. I am making notes of all your helpful tips.

I will continue to send good thoughts to all of you. You are a blessing. And I will also share my husbands journey.

Can I ask what you mean by mask treatment?

Thanks

I suggest getting a feeding tube as soon as possible. At a point it will become very hard to eat. The tube will help with maintaining weight

Baby Aquaphor worked very well for my neck. At one point it had turned black

My doctor prescribed 1mg Xanax to take right before mask radiation treatment. It has really helped with the claustrophobia anxiety and pain from the tight mask. I have found that radiation techs are just the best and really listen and try to help. So be sure to communicate with them as well.