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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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Mar 13, 2023
In reply to @anybody10 "I have HPV16 tongue cancer. I was diagnosed in September 2022. I finally had a biopsy..." + (show)
@anybody10

I have HPV16 tongue cancer. I was diagnosed in September 2022. I finally had a biopsy operation to confirm it was cancer. The plan of action is 7 chemo treatments and 35 radiation daily treatments. At this point not quite half way through. The radiation is the worst. Saliva glands are drying, nothing tastes good and normal smells are really unpleasant. I have lost 23 pounds but doctors do not want to put in a feeding tube. The reasoning is because you will give up trying to swallow. I guess if you don't swallow eventually the ability to will stop. I wanted to give up completely and let God's will take over. My husband and family would not allow me to make that decision. I hate to say it out loud but I pray for a miracle or and end to it all. Just starting on an anti-depressant so hopefully in 3 weeks when it kicks in my mindset will be better.

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"You will give up trying to swallow" This advice is coming from an actual licensed medical doctor in the First World? I don't see starving to death as a better alternative than the chance to forget a primary life function. Even the least in medical school are still addressed as Doctor I suppose. My advice, change doctors and find a nutritionist.

REPLY
singlelady61 | @singlelady61 | Mar 19, 2023
In reply to @singlelady61 "I had 35 radiation treatments and 5 chemo all at the same time. RDiation was 5..." + (show)
@singlelady61

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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Me too, water is the worst. I need powdered drinks as well. I have noticed that milk seems to neutralize the sour taste.
I drink a lot of milk.
Still having swallow issues at
16 months out.
Also have a new tumor on the bottom of my right lung.
Biopsy in 2 weeks.

REPLY
Jody aka mojo244 | @mojo244 | Mar 20, 2023
In reply to @anybody10 "I have HPV16 tongue cancer. I was diagnosed in September 2022. I finally had a biopsy..." + (show)
@anybody10

I have HPV16 tongue cancer. I was diagnosed in September 2022. I finally had a biopsy operation to confirm it was cancer. The plan of action is 7 chemo treatments and 35 radiation daily treatments. At this point not quite half way through. The radiation is the worst. Saliva glands are drying, nothing tastes good and normal smells are really unpleasant. I have lost 23 pounds but doctors do not want to put in a feeding tube. The reasoning is because you will give up trying to swallow. I guess if you don't swallow eventually the ability to will stop. I wanted to give up completely and let God's will take over. My husband and family would not allow me to make that decision. I hate to say it out loud but I pray for a miracle or and end to it all. Just starting on an anti-depressant so hopefully in 3 weeks when it kicks in my mindset will be better.

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Do not give up! I had the same treatment regimen but I had a feeding peg. I also had a very persistent nutritionist that hounded me daily!
Yes, the throat can forget how to swallow but water throughout the day will give the throat movement!
I tried to eat by mouth and wasn’t able due to; the smell of all food made me vomit, throat was closing up, no hunger etc.
I was able to get oatmeal down after approximately 7 months and lived on that for about two years!
Now after 6.5 years and 3 Esophageal Dilations I still have a very hard time eating food. I found that country gravy along with lots of water helps get the food down.
Fight the good fight and win!

MOJO

REPLY
singlelady61 | @singlelady61 | Mar 22, 2023
In reply to @calenbd "Hello, I had HPV SCC in my tongue and one lymph node. I’m in remission now..." + (show)
@calenbd

Hello,
I had HPV SCC in my tongue and one lymph node. I’m in remission now since my treatment ended in September, 2022. To answer your question, to my knowledge, a biopsy is the only sure way to determine if the lymph node is cancerous. My biopsy showed it was positive for cancer. The treatment for my cancer was radiation, both the tongue and the lymph node, not removal by surgery. I hope this helps. I pray you have complete recovery at the end of your treatment journey. God bless.

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My treatments were the same as you Calenbd. That was 19
months ago. I was cancer free for 6 months. Then it went to the top of my right lung. That piece was removed with surgery. No other treatment.
Now 4 months later I have another hot spot at the bottom of the same lung. Going for a biopsy in 10 days.
Cancer 3 times in 19 months.
Very upsetting. How can I keep it from coming back ???

REPLY
1 reply
calenbd | @calenbd | Mar 23, 2023
In reply to @singlelady61 "My treatments were the same as you Calenbd. That was 19 months ago. I was cancer..." + (show)
@singlelady61

My treatments were the same as you Calenbd. That was 19
months ago. I was cancer free for 6 months. Then it went to the top of my right lung. That piece was removed with surgery. No other treatment.
Now 4 months later I have another hot spot at the bottom of the same lung. Going for a biopsy in 10 days.
Cancer 3 times in 19 months.
Very upsetting. How can I keep it from coming back ???

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I’m so sorry. I wish I know how to stop cancer. I’ve had it twice now myself. Prostate cancer 5 years ago and then the tongue SCC. All is I can say is keep fighting and doing what your doctors say. I believe in God and His power to heal. I’m not sure what you believe, but I am going to pray for you. Keep positive and lean on the ones you love.

REPLY
dc56 | @dc56 | Mar 25, 2023
In reply to @ptlhrms "Hello, I was diagnosed with Stage 4 oral cancer in 2009. I did the standard treatment..." + (show)
@ptlhrms

Hello,
I was diagnosed with Stage 4 oral cancer in 2009. I did the standard treatment of 7 weeks of chemo cocktails and radiation. They told me I was HPV positive, the MD said the good thing about being HPV positive was the success rate was better than being non-positive. I’m not sure if I was HPV 16, I believe so, but would need to check my paperwork. I had seen multiple ENTs for more than 2 years without a diagnosis. I had a chronic scratchy throat that I could not seem to clear. I had been scoped so many times I lost count. Then one day I woke up with a golf ball size lump on the side of my neck. The MD’s all agreed that was not good.

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Hello,

I mirrored your experience. I had been complaining about my throat 2 years prior to being diagnosed with oropharyngeal cancer. I had been scoped many times as well with no definitive answers. What caused me to not continue to see the ENT, was that he reassured my during one of my scopes that it wasn't cancer. I would like to share with everyone, to continue to request scopes and be vigilant, even when you are comforted by good news. I too had a sore throat and was coughing up blood for months. Yet, I was given a clean bill of health. It's a mystery to me how both of us, and many others are missed. Hopefully, there can be further learning so we don't go un-diagnosed.

REPLY
1 reply
ptlhrms | @ptlhrms | Mar 26, 2023
In reply to @dc56 "Hello, I mirrored your experience. I had been complaining about my throat 2 years prior to..." + (show)
@dc56

Hello,

I mirrored your experience. I had been complaining about my throat 2 years prior to being diagnosed with oropharyngeal cancer. I had been scoped many times as well with no definitive answers. What caused me to not continue to see the ENT, was that he reassured my during one of my scopes that it wasn't cancer. I would like to share with everyone, to continue to request scopes and be vigilant, even when you are comforted by good news. I too had a sore throat and was coughing up blood for months. Yet, I was given a clean bill of health. It's a mystery to me how both of us, and many others are missed. Hopefully, there can be further learning so we don't go un-diagnosed.

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Hello @ dc56
I agree, it’s unfortunate that we had to learn the hard way about oral cancer. Did they ever find the primary source of your cancer? Mine was not discovered until I was in surgery for the peg tube. When the surgeon came back she told my wife she found the primary source of my cancer, it was in back of my right tonsil. It’s hard to believe that two different ENTS did not think to look in back of my tonsils during the two year period. They numb you up to put the scope up your nose and down your throat, I’m thinking they must have some mirror with a light that would have allowed them to look in back of my tonsils. Unfortunately, it’s old news now, but if someone else has an unknown source of oral cancer, I would suggest you ask your ENT to look in the back of your tonsils. I understand there’s lots of places cancer can hide but it wouldn’t hurt to have them look there. Now that they knew where my primary source of cancer was I able to have targeted radiation to that area of my neck. It’s now 13 years post radiation & chemo, I still have my dry mouth and my taste came back slowly. After about two years I now have full taste. I had to crown what’s left of my bottom teeth and use a partial. I noticed thru the years my teeth were getting thinner & thinner between the teeth. I use lots of mash or sweet potatoes to help with the swallowing, fresh avocado works well to.

The most recent thing I deal with is this right neck gland that continues to swell up intermittently. Based on what I read it is know as Radiation Fibrosis. Apparently the neck muscles are now more rigid post treatment and don’t have the elasticity to snap back so well. It’s just something I learn to live with. Let me know if anyone else has the swollen gland issue as well, I hope this helps someone.

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