HPV P16 positive cancer

Welcome @autie5878. I’d like to bring @chamst @frankbc and @ptlhrms back into this discussion to support you.

Autie, is this a new diagnosis for you with HPV positive head and neck cancer? What treatments have you had or will you be having?

I have hpv positive head and neck,stage four it’s in both my lymph nodes on both sides of my neck

@frankbc
Hi Frank my bf has head and neck squamous cell carcinoma hpv16.
He had gotten genital warts when he was 26 yrs old. The virus ftom the genital warts stayed dormant for 42 yrs. He was diagnosis Feb 24, 2020. At age of 68. It’s metastasized from throat to left side of his neck to his lung. He had completed 6 weeks of cisplatin and radiation. 3 months later pets scan showed it moved to lymph node near left lung on wind pipe. He started Keytruda sept of 2020. Had completed one year.
He has one more yr on Keytruda.
After that he will be taken off. And I guess we can only see what happens. At this point we can only hope. He has been told if he goes off the Keytruda now, his cancer will return, maybe after 2nd year he will be ok? At this point this is giving him time. He’s not doing that well, but hanging in there. Has tons of side effects.

Hi@chamst I belong to a biggish group in New Zealand and although my cancer was not HPV many of my friends have had an HPV-related head and neck cancer. It's due to a very common virus that most of us shake off but which for an unlucky few lurks for years or decades until it causes a cancerous tumour. Luckily, HPV-related head and neck cancers are easier to treat and have a better survival rate. Best of luck with your treatment.

Chamst, HPV infections are not uncommon. So it is entirely possible for both your mom and you to have HPV-related cancers without it being hereditary.

I’d like to bring fellow members @ptlhrms @alpaca @loli @fxdwing and @catlyn into this discussion as they have experience with oropharyngeal cancer and HPV positive cancers.

Chamst, have you had a chance to discuss your concerns about radiation and dosage with the radiation oncologist?

Thanks Colleen, I am male so cancer was obviously Oropharyngeal for me. And yes mum's was also HPV positive. They tell me its not hereditary however it is very coincidental nonetheless.

Sorry, I can’t be of help. My husbands cancer was stage 4 and they didn’t consider radiation an option.

Hi @chamst and welcome to Mayo Clinic Connect. I can imagine that you are nervous about radiation and treatment after seeing what you mum went through and what she continues to struggle with even now. Was your mum's cancer also HPV-positive? Was your HPV-positive cancer found in the cervix area or oropharynx (oral cavity) area?

I just got diagnosed with this type of cancer. Am yet to start treatment but am told it will be Cisplastin (Chemo) and targeted radiation for 7 weeks. My mum had a very similar cancer treated the same way a couple of years ago. She has had significant damage done by the radiation and now cannot keep her weight up, even two years later. I would like to suggest a lower dose of radiation since this P16+ responds so well to radiation anyway. I'm hoping the radiology oncologist will agree...

Glad to hear your husbands tratment is going well. Initially the MDs did not know the primary source of my cancer, but that all changed when they found the primary source behind my right tonsil. As I mentioned in my last reply, I had been scoped many times but the ENT’s never looked behind my tonsils. They found my primary source when they put me under to have the feeding tube inserted. Luckily, I had a great surgeon that took the time to further explore in my mouth for the primary source. As you may know, by knowing where the primary source was they could now begin a course of targeted radiation for the specific area. As far as losing my taste after treatment, my MDs said it could take up to a year. For me it took close to two years to get my taste back to about 99% but everybody is different. Taste does return, but it has a short memory when it starts to return, the first bite is always the most flavor then it starts to diminish until you take a bite of something else. Any other questions feel free to ask. Always willing to share my experience if it can help others. Keep the faith and stay strong!