Zoom meeting for HPV Negative head/ neck cancer patients

LitlCJdoll Member Posts: 245 Member

Hello forum,


Today August 1st I spent over an hour on the Phone for n a Zoom meeting.  Tony is an attorney going through HPV Negative HNSCC,,  and he contacted SPOHNC ( Support for People with Oral and Head & Neck cancer) because he wanted more information.

Specifically, he became very aware that the Research he found currently for HNSCC was focused exclusively on HPV Positive cancer.  He told SPOHNC that he wanted to form a group to exchange information etc.

So, Chris from SPOHNC contacted me. She knows that I have Stage III Recurrent cancer and that mine is HPV Negative.  I have had 5 recurrent tumors and a New Primary that grew every aggressively less than a year after my radiation treatments.  She asked me if I would help Tony. I Sarah d sure.

Unfortunately, there were only 3 of us--- Tony, his caregiver, and another lady whom had Stage I tongue cancer 10 years ago and no recurrences.  So, it was me they focused on because my story is very dramatic. 

Plus, I talked about the recent death of my boyfriend Randal, from their s cancer Stage IV, and his cancer was HPV Positive. Yes, his was positive and yet his was extremely aggressive and it metastasized very early on to his Liver and bones....

Tony gets fitted this coming Tuesday for his Mask, and he has refused the feeding tube thus far.

** SIGH**

Anyway, in 1 month, he said he is planning another meeting, and we hope to have other HPV Negative patients/ survivors on board.


P.S.  New CT Neck just revealed why I am having Pain nd Popping and stiffness --- my cervical vertebrae C2 through C 5, show Bone Erosion plus narrowed And Obliterated joint space between them.  Uh, Radiation damage.

I start physical therapy this month but nothing can be done for this bad problem.

In light of this revelation, my Pulmonary team now wants my G I doctor to closely look for a possible hidden Tracheal- Esophageal FISTULA. They said its very possible, and very serious. It would explain more of my Aspiration problem.  .... Coughing while drinking my intake, etc.

I think its unlikely, though. My MBS swallow studies plainly show the extent of my aspiration, and its become worse over time. I doubt they will find a fistula, but the testing is already set up, a barium swallow Esophagram,  and my next EGD/ Dilation. This month.  And my lungs are still not clear....

And on it goes, eh?


  • wbcgaruss
    wbcgaruss Member Posts: 2,094 Member
    edited August 2021 #2
    Well Crystal I Certainly

    Am glad you had the meeting.
    I hope it helped all parties involved.
    Thanks for the update on your situation.
    Prayers continue.
    Wishing You The Best-Take Care-God Bless-Russ