HPV Tonsil cancer: I'm very nervous about chemo and radiation

Posted by johnschaar @johnschaar, Jan 4 3:06pm

In June of 2024 I was diagnosed with HPV+ tonsil cancer. I have been doing an alternative approach but believe it is not working and can not find a doctor in my area that will work with me and order a second pet scan as I am not following THEIR protocal. It is all Chemo / radiation or nothing! Basically my wife is no support if I go with the traditional routine, and insists that what I am doing will work.
I am very nervous about chemo and radiation. What else my be available?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Profile picture for William Olsen, Volunteer Mentor @hrhwilliam

@lizzyj58 I think at the end of week three I began to get sick to my stomach. Food had lost it's taste. I lost my appetite. A feeding tube was never mentioned nor did I know that was an option. Medicines however were offered up to deal with nausea, which is not common in all cases. Yet if there is a side effect I certainly will be the one to have it.
Very scary is appropriate. This journey is unlike anything your husband has ever experienced. It is not impossible but it is difficult. It is day to day and always in the knowledge that it will be finished and eventually life gets back to normal. For you and he this holiday season upcoming is more or less off the books. Make no plans or promises. The recovery from radiation is far slower than most people expect. It will be two steps forward and one step back, but it is progress. Tough times never last but tough people do. In many cases this is a life changing experience for the better, in reflection.
Please don't hesitate to ask away any concerns you or he might have in the coming weeks. You have a fantastic resource here of patients with specific experience in these treatments. I leave you with the immortal word of Churchill, "Courage".

Jump to this post

@hrhwilliam My husband had the tonsil with tumor removed on Wed. Now we focus on treatment for tumor in lymph node. Meeting medical oncologist and radiology oncologist to I suppose plan treatment. A little less stress as 1 tumor is gone but he's apprehensive about the treatments and duration. I'm guessing we will know more after meeting with the 2 doctors.

REPLY
Profile picture for William Olsen, Volunteer Mentor @hrhwilliam

@harleytiger I am happy to hear you are done being zapped. Many of us had 35 rounds or seven weeks of radiation. Those last two weeks did the most damage to me and I'm sure others would agree. It's like making toast and then watching it burn instead of popping it out.
The thick saliva will likely hang around for a few months as you heal. Lovely I know, right?
Your nose runs, common thing for many of us. Some say it is a salivary gland re-route. I have a friend who leaks saliva from a small fold in the neck when she eats since radiation. I have the runny nose while eating all these years out of radiation.
Your neck will be stiff. You likely will have brief nerve pains in the neck, shoulders and arms. Be careful eating dry foods, breads, rice, white meats. Lack of saliva. Most issues go away in a few months while others might hang around for years or forever. The good thing is you are on the mend. You got through what very much the thought would scare most people.
Good healing and welcome to life post-cancer.

Jump to this post

@hrhwilliam Thank you for the great explanation. It helps very much to hear from people like yourself that have been there and now are much better. I'm still in shock of all that going on with my neck, nose, and tastes. I hope I don't start losing teeth. I'm using Fluoride trays everyday and I hope this helps. Thank you for everything again. Tim

REPLY
Please sign in or register to post a reply.