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Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: 2 hours ago | Replies (717)Comment receiving replies
hi all:
Just getting started. Haven't had treatment yet but should start In a week or two. Met with Surgeon, Radiation and oncologist along with a dental Oncologist for HPV positive tonsil -Stage I or II depending on who I talked to.
Proposal is 7 weeks of radiation plus 40mg cisplatin weekly for 6 weeks. Biggest concern/decision now is that I'm already hard of hearing and use hearing aids. The Cisplatin is pretty famous for hearing loss, so I don't know if I'm heading for deafness or not. If anyone has thoughts, I would be grateful.
I know the next 3 months are going to be tough, but I have a good support group am otherwise in very good health and I (so far) have a good attitude, meditate daily, regularly exercise and I'm trying to "fatten up". But I'm concerned about further hearing loss and interested in ideas, experiences etc. Idea for mitigating I of course will talk to my doctors.
Replies to "hi all: Just getting started. Haven't had treatment yet but should start In a week or..."
Hi @simplygrand
I was 39yrs. old in 2008 when I was officially diagnosed with cancer Stage IVB T2N3M0 on left tonsil caused by HPV and one of my 3 infected lymph nodes was over 7cm and that is not a typo. I had 35 rounds (7 weeks) of Photon radiation which amounted to 70 Gy and 3 rounds (211mg each) for a total of 633 mgs of the platinum-based chemo Cisplatin and had no surgery whatsoever.
One thing I am finding out is this big de-escalation Head & Neck cancer treatments coming about especially for people who got it as a result of HPV. I attached 4 articles (pdfs) on it here. Also, I talked to my oncologist recently and he said I would have four different options if I had tonsil cancer today.
Hope this helps.
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@simplygrand
Hi, My diagnosis was similar back in Oct 2025, Stage 1-2 tonsil cancer HPV+.
Thanks to this support group I discovered that a blood test is now available for this cancer and was able to stop treatments early because of it testing negative for cancer after 3 days of cesplatin and 24 radiation sessions or 48gy.
So after 5 weeks took a week off from treatments then tested which took about a week to get results back. NavDx is the name of the test it will come up in a Google search'. You may have to ask for it like I did but good chance it could save you from unnecessary toxic treatments. I highly recommend it.
You will have to advocate for yourself though , seems some cancer centers are hell bent on maximum treatments still despite overwhelming evidence that this particular cancer often only needs about 1/2 what is recommended to kill it..