1. < Head & Neck Cancer

HPV P16 positive cancer

Posted by frankbc @frankbc, Oct 27, 2020

Hello, I am reaching out to see if anyone in this group is diagnosed with HPV P16 positive cancer We have unknown origin and are being treated for head and neck cancer. Anyone else with similiar presenation?.

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thomason | @thomason | Feb 25, 2023

@anybody10, the radiation treatments usually begin showing their harsh effects a few weeks ahead of where you are presently at on the timeline. Please read my past entries for experiences and tips. Look up red-light therapy, and buy an inexpensive wand. Begin shining it inside mouth, back of throat, and the outside of neck.
Every day before radiation treatment, I waved the wand around slowly for about ten minutes. Research has shown very positive results on radiated tissue when subjected to this type light. Hang in there!

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compound0828 | @compound0828 | Feb 25, 2023
In reply to @chanderson "I was diagnosed exactly the same in May 2022. Doctors completed exploratory robotic surgery to identify..." + (show)
@chanderson

I was diagnosed exactly the same in May 2022. Doctors completed exploratory robotic surgery to identify the small group of cells on the base of my tongue and a needle biopsy of the mass in the right side of my neck throat area also came back positive. I completed 7 weeks of radiation and chemo treatments this past summer. I was cancer free in November 2022 based on blood work / NAVDX testing.

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Did you receive the standard 70 grey of radiation & where did you receive treatment? We are looking for low dose to minimize long term side affects.

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1 reply
kozl741 | @kozl741 | Feb 26, 2023
In reply to @anybody10 "My tongue cancer was caused by HPV16. My recommended treatment is chemo therapy and 35 radiation..." + (show)
@anybody10

My tongue cancer was caused by HPV16. My recommended treatment is chemo therapy and 35 radiation treatments. I had my first chemo treatment yesterday. I had my radiation mask made covering my head down to shoulders. This was the worst thing that's happened to me since being diagnosed with tongue cancer. I have claustrophobia and I started freaking out. Near the end of the mask run through I started trying to get the mask and mouthpiece out and calling for help. Finally that was over only to be told I had to do this one more time. I explained about my fear to the nurse who basically said nothing can be done just do it. Since my treatments will probably start in two weeks I have made requests for a sedating drug such as valium. I was flatly turned down and said it's only 5 minutes deal with it. I can tell you after that 1st day (yesterday) I was physically shaking and could barely walk. Unfortunately this was the one day I did not come with my husband. I am dreading my next radiation treatment. Did anyone out there have similar experiences and if so what did you do?

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My boyfriend freaked out from the mask as well!! His Drs gave him a prescription for Ativan to help him & it worked like a charm! I’m very surprised the Drs won’t help you with this!

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1 reply
jimthomasintl | @jimthomasintl | Feb 26, 2023
In reply to @anybody10 "I was diagnosed with HPV16 tongue cancer in November 2021. I've just started treatments and feel..." + (show)
@anybody10

I was diagnosed with HPV16 tongue cancer in November 2021. I've just started treatments and feel better already. I'm told that it does get worse before it's better but that will remain to be seen. I've had 2 chemo treatments and 5 radiation treatments. I dislike the radiation treatments enormously because of my claustrophobia. The mask was made and it bolts my head and shoulders down on the rad. table. Then of course you get prompts about swallowing or not swallowing. Of course my body reacts in the opposite so swallow when I'm not supposed to. I've sort of tamed the fear of being bolted down but not completely. I usually have 2 days out of the week that I feel bad from the chemo treatment. It's a little frightening reading here about others experiences with radiation and the lingering effects. Are there ever any good outcomes?

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You get to see your grandchildren longer.
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boca1 | @boca1 | Feb 26, 2023

I finished radiation & chemo treatment (35 rad & 7 wks chemo) Nov. 5, 2021, for HPV-stage 2; surgery not an option. Toughest treatment due to area, stay positive and stick with it.
Was doing very well after treatment from Nov through July, 2022. August began choking on simple sips of water & it progressively got worse, Neck described as "woody"; hard & stiff & reflected inside of throat. Swallow test showed narrowing in a section of esophagus, so had it stretched (Sept 2022) which helped a little. In this brief period of time, my body defense has developed an extreme case of Radiation Fibrosis (scare tissue), making eating a worse challenge than going through treatment. Had throat stretched for 2nd time (Feb, 2023), but not very successful. Doctor suggests doing again but in the hospital vs. his surgery center, where he will have more options; will schedule. Learning I am not alone because some have developed latent scare tissue even many years later. If anyone has Radiation Fibrosis and any other "family" related illnesses, please reply. I also have classic symptoms of scaladerma (Hands, feet & digestive issues) though tested negative for it many times, but my sister has it so it runs on the family.

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chanderson | @chanderson | Feb 26, 2023
In reply to @compound0828 "Did you receive the standard 70 grey of radiation & where did you receive treatment? We..." + (show)
@compound0828

Did you receive the standard 70 grey of radiation & where did you receive treatment? We are looking for low dose to minimize long term side affects.

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I received 35 standard radiation treatments in Portland Oregon @ Knight Cancer Center - part of Oregon Health & Science university I also only received two rounds of chemo. I’m now 6 months post treatment and I am feeling better, gaining weight, & cancer free. Some dry mouth from time to time and my taste is off a bit.

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singlelady61 | @singlelady61 | Mar 6, 2023

Yes I have the exact same thing. I went through 35 radiation treatments. And 5 chemo treatments, both at the same time.
I’ve been done. With treatment for
15 months. But the side effects are still very active.

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1 reply
singlelady61 | @singlelady61 | Mar 6, 2023
In reply to @singlelady61 "Yes I have the exact same thing. I went through 35 radiation treatments. And 5 chemo..." + (show)
@singlelady61

Yes I have the exact same thing. I went through 35 radiation treatments. And 5 chemo treatments, both at the same time.
I’ve been done. With treatment for
15 months. But the side effects are still very active.

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I had 35 radiation treatments and 5 chemo all at the same time. RDiation was 5 days a week. I’m 15 months out from treatment. But drinking water is the worst ! My saliva is a constant sour taste. I can only drink water that has a powdered flavor in it.
Food is still such a struggle. Sometimes it won’t go down when I swallow. My mouth and esophagus are too dry. I’m wondering by now is this permanent ?

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2 replies
singlelady61 | @singlelady61 | Mar 6, 2023
In reply to @kozl741 "My boyfriend freaked out from the mask as well!! His Drs gave him a prescription for..." + (show)
@kozl741

My boyfriend freaked out from the mask as well!! His Drs gave him a prescription for Ativan to help him & it worked like a charm! I’m very surprised the Drs won’t help you with this!

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What is the Ativan for ?

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kozl741 | @kozl741 | Mar 7, 2023

It calmed him down to be able to wear the radiation mask & be bolted to the table without panicking. It’s a lifesaver!

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