Tonsil/throat cancer, HPV positive with trach and gtube going in

Pclark- you sound so informed, a wonderful rock of support for your man. And you are right, lots don't make it, but today, sooooo many more do. Cancer has almost become a chronic disease if it isn't outright cured. HPV+ gives you a leg up. I am assuming that at Stage 2/3, it is the placement of the tumour that has caused all of the problems, hence trach and gtube to start. He can still do this. Take/seek every support you can- someone to clean house, drop off food (even if just for yourself, a very tired caregiver- if people ask how to help, tell them), speak c the social worker or nurse for support...don't say no to any reasonable help. As for me, they biopsied and waited a year to do anything because bx inconclusive and I was so healthy looking, felt great, regular gym goer. My surgery removed so much of my neck structure, just to keep me alive. But you can barely tell now and I can do just about everything, and now back at gym! Then chemoradiation- I told my husband that I was ready to die. Of course, my family and team wouldn't listen to that talk and I am so glad for that strong unwavering, support. It pulled me through. No matter what the future brings, I am eternally grateful to my caregivers, who dragged me through and made sure that there would be brighter days ahead. You are in position to try to do the same but you might need help. You can do this. Hugs!

Has anyone heard about the new guidlines for HPV tosil cancer? Apparently it is no longer recommended that it be "graded". Moderately or poorly differentiated are henceforth considered irrelevent, and number of nodules no longer to be taken into consideration. It seems that the hpv designation says it all. I also hear that that de-escalation of treatment is being considered for  hpv positive tumors.some clinical tests are wraping up. So, yes hpv is indeed a "step up". I can track down the source of this information, but wonder if others had heard about this evolution in the way the hpv issue is being reviewed. All too late for me as my treatmnt ended 4 yeas ago and all ok. It was a rough ride, however, and this may be good news for future patients.

Pclark21st said:

Curlyn, thanks for note. 

Curlyn, thanks for note.  Glad you had a goid suppirt group.  I have a group if friends that are taking turns driving him to treatments so i can work.  He is beginning to have discomfort in his jaw although he has been diligent in doing jaw exercises.   The secretions are getting thicker making it more difficult to sleep.  Theyve given him a patch to help but nothing yet.  My biggest fear is the skin side effects and i want to try to stay ahead of that for him...as well as not let him lose the ability to swallow so he can be rid of feeding tube eventually and pray to god he doesnt lose his voice forever.  

Just to add that I did jaw exercises until my jaw was too sore to do them properly. But they told me that was okay, to make sure I do them diligently when rx stopped and I was healing. Did them as best that I could without causing pain, and then meticulously once radiation over. I never had thick secretions, mucositis, (a gift but your husband's prob exacerbated by trach) but my neck got sore and started to break down in the last week. I found it easy to manage c saline soaks and silversulfadiazine. I cleaned my teeth and mouth meticulously and 11 wks out I am still using the baking soda/salt rinse recommended by oncology dentist to maintain alkaline environment that prevents cavities and heals tissue/told the only thing that cuts through thick mucous. His voice should come back after trach out but thats a future concern and something a speech pathologist can help you with. I couldn't speak at all c the NG tube, too sore. Also, I resisted pain meds until it was put into perspective for me ie. only a short time, will help you through it. Glad I took them. Everyone was more than willing to find the right combination for me...just keep them informed of how they are working or not. Sorry for this long post but you both need lots of support. Like others, just trying to help you through this c anecdotal experiences, as others helped me.