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?

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Profile picture for William Olsen, Volunteer Mentor @hrhwilliam

@lizzyj58 pinpoint aka proton radiation wasn’t widely available when I was treated. It is now within reach of most of the population in the US and when it comes to head and neck cancers, highly recommended to limit damage.
After the radiation therapy you can expect him to continue to go downhill for several days to perhaps a few weeks before the recovery starts. Add Chemo to that schedule if that is the recommendation and you can see this going into the next year a bit.
Ensure his oncologist has specific experience with head and neck radiation. It is vitally important. If the answer is less than yes, go elsewhere.
Proton or photon for your husband?

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@hrhwilliam I suppose we will find out which type of radiation my husband will have after biopsy results and meeting with radiology oncologist and/ or medical oncologist. Hopefully treatment won't be too brutal on him!

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Profile picture for lizzyj58 @lizzyj58

@hrhwilliam I suppose we will find out which type of radiation my husband will have after biopsy results and meeting with radiology oncologist and/ or medical oncologist. Hopefully treatment won't be too brutal on him!

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@lizzyj58 Several advances in treatment in the last ten years include panel grading to determine cell structure, which often allows new and improved ways to treat these cancers. Common is the HPV virus and panel 16 or 18 positive which has proven very successful in treatment. Some cases use drugs only such as Keytruda or similar base medicines.
We wait and see what the plan is and we go from there. A year from now this should be all behind you. For now, one day at a time.

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Profile picture for William Olsen, Volunteer Mentor @hrhwilliam

@lizzyj58 Several advances in treatment in the last ten years include panel grading to determine cell structure, which often allows new and improved ways to treat these cancers. Common is the HPV virus and panel 16 or 18 positive which has proven very successful in treatment. Some cases use drugs only such as Keytruda or similar base medicines.
We wait and see what the plan is and we go from there. A year from now this should be all behind you. For now, one day at a time.

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@hrhwilliam Thank you for explaining all this to me!

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Good afternoon colleagues. I’m in my fifth week of chemotherapy and radiation treatment but I’m finding it difficult to eat. Food has no taste at all. Swallowing is a bit of a challenge and soreness of the mouth and throat. After how many weeks after treatment will this last? It’s not easy

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I have a question, since my radiation treatments, much of my facial hair is missing on the side of the treatment. Any of the men out experience that? If so, how long did it take for the facial hair to start growing again? Thanks.

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Profile picture for linda90 @linda90

Good afternoon colleagues. I’m in my fifth week of chemotherapy and radiation treatment but I’m finding it difficult to eat. Food has no taste at all. Swallowing is a bit of a challenge and soreness of the mouth and throat. After how many weeks after treatment will this last? It’s not easy

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@linda90 Can doctor suggest anything? There are mouthwashes and creams for outside of skin, maybe ask doctor's nurse for something to ease things fir for you? My husband is facing 6 weeks radiation and probably 3 chemo sessions, so I sympathize with you. Hopefully you're near the end of your treatment and then your healing will start!

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Profile picture for linda90 @linda90

Good afternoon colleagues. I’m in my fifth week of chemotherapy and radiation treatment but I’m finding it difficult to eat. Food has no taste at all. Swallowing is a bit of a challenge and soreness of the mouth and throat. After how many weeks after treatment will this last? It’s not easy

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@linda90 Hello Linda, I'm 3 ½ weeks out from my 25 rounds of radiation therapy. I did not need Chemo, but I did have surgery to remove my tonsil, mass, and lymph nodes. Post radiation for me was far harder than the treatments themselves. It seemed to me the accumulation of all the treatments catches up to you. It did me. At first food had a metallic taste, and some food items I just couldn't tolerate in my mouth. It was very bad, every food you know and love doesn't taste the same, or it's horrible. After the first week (post radiation) that started to improve and started eating moisture food types (mostly Italian). I was already eating Cream A Wheat, Oatmeal, and Chicken Soup. If you have a Chinese restaurant near you order Egg Noodle Soup. I bought a Ninja smoothie maker and I have a very nutritious protein smoothie every morning. I'm at the point now that I can barely taste food on the first bite and on the second one, the taste is all gone. I gargled with 3 mouth washes frequently. They were salt/water; salt/soda powder/water; and L-Glutamine powder (Now Foods Sports Nutrition bought on Amazon) with warm water. The L-Glutamine really helped. The mucous build up is awful, one contributor said it was like drowning and he's right. Then there is the dry mouth and that's another paragraph I bought XyliMelts and Act mouth wash. I keep a thermal water bottle (with a straw) on my nightstand and it's needed. I bought the 18oz Thermos made by Tsuruya on Amazon and it's perfect.
As far as how long this last, I'm not sure? Some people are several years out, some said their tastes were back in 8 months or so? It's different for everyone I'm told. I'm only beginning this terrible ordeal. But, I can tell you I'm improving everyday. My oncologist said that my rapid recovery is not normal and said I'm in the 2% category. I haven't missed a gym day on account of my treatments. I went on as normal and it helped my mind. I hope this helps you. I feel your pain, because I'm there too. You can't explain this to someone who hasn't experienced it. Take care and hang in there. Tim

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Profile picture for harleytiger @harleytiger

I have a question, since my radiation treatments, much of my facial hair is missing on the side of the treatment. Any of the men out experience that? If so, how long did it take for the facial hair to start growing again? Thanks.

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@harleytiger I didn’t shave the left side of my face more than maybe once a month for several years. I still won’t grow a beard as it is overly scruffy on the left side and no color match either. First world problem I can live with.

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Profile picture for linda90 @linda90

Good afternoon colleagues. I’m in my fifth week of chemotherapy and radiation treatment but I’m finding it difficult to eat. Food has no taste at all. Swallowing is a bit of a challenge and soreness of the mouth and throat. After how many weeks after treatment will this last? It’s not easy

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@linda90 Everyone is different but likely your eating habits will be slow to recover and likely won’t start recovery until two or three weeks after you are done with radiation. It’s the main reason a feeding tube is recommended.
Just keep trying to eat anything you can. You need calories, not necessarily healthy foods.

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Profile picture for harleytiger @harleytiger

I have a question, since my radiation treatments, much of my facial hair is missing on the side of the treatment. Any of the men out experience that? If so, how long did it take for the facial hair to start growing again? Thanks.

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@harleytiger,

My facial hair under my jaw never did go back but I also had Cisplatin chemo (which intensifies the effects of radiation) and Photon radiation back in 2008 for left tonsil cancer. Nice I don't have to shave there but looks weird as it grows on my right side if I grow it out which I don't anyways so no big deal as my beard is neatly trimmed up to my jawline.

Blessings,
Rob

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