Looking to connect with people being treated for HPV Throat Cancer

Posted by fxdwing @fxdwing, Sep 27, 2018

Looking for others to discuss this type of cancer. Treatments, success rate, etc. I have been treated but it has returned.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Profile picture for bobfalfa @bobfalfa

I had a lymph node and tumor surgically removed on 2/24/26, so far. PET scan on 6/10/2026 was hopeful, at this point no chemotherapy or radiation, just monitoring. Very grateful I am being treated at the Mayo Clinic. Prayers and well wishes for everyone.

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@bobfalfa: Glad you had a PET scan… FDG? or was it a Dotatate Gallium68 PET? or Copper PET? You have many NET patients waiting to hear how you are feeling about treatment and how to decide on the best road forward. When you feel comfortable sharing many of us are willing to help you.

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Profile picture for ahimsa @ahimsa

My throat cancer was biopsied as a "basiloid squamous cell carcinoma"... like a skin cancer in the throat.
After reading about the study below, I started taking niacinamide 500mg twice/day and I've had no recurrence
of the cancer (note: nicotinamide and niacinamide are the same thing.) I buy my niacinamide on Amazon where it is readily available and very cheap. I see that the protocol for throat cancer survivors is frequent larygoscopies
which tells me that these cancers have a high rate of recurrence. I see that dermatologists use it routinely.

"The prevention of common skin cancers and precancers is possible by taking an inexpensive, widely
available, oral pill twice daily. The pill—the vitamin B3 supplement called nicotinamide—cut the rate of new
squamous-cell and basal-cell skin cancers by 23% compared with placebo after 1 year among patients at high
risk for skin cancer. Nicotinamide also reduced the risk for developing actinic keratosis, a common precancer
of the skin.
The results of the phase 3 ONTRAC skin cancer prevention study were presented at ASCO 2015.
These findings have the potential to lower healthcare costs. In the United States, skin cancer accounts for
approximately $4.8 million annually.
The investigators emphasized that these results were achieved in individuals who previously had skin cancer
and were thus at high risk for new skin cancers. The results do not apply to other patient populations.
In addition, the investigators emphasized that nicotinamide is the form of vitamin B3 that should be taken for
prevention—not other forms of vitamin B, such as niacin—and that continuous treatment is advised.
“This
form of prevention is safe and inexpensive, costing around $10 per month, and it is widely available. It is
ready to go straight to the clinic for high-risk patients with a track record of skin cancer. This is a new
opportunity for skin cancer prevention,
” said lead investigator Diona Damian, MBBS, PhD, Professor of
Dermatology, Dermatology University of Sydney, New South Wales, Australia.
“The pill does not take the
place of sunscreen use and regular skin checkups by dermatologists for people at high risk,
” Dr Damian
noted.
As the aging population continues to grow, basal- and squamous-cell carcinomas will become even more
common than they currently are. The investigators are from Australia, which has extremely high rates of sun-
induced skin cancers. A previous phase 2 study by this group showed that nicotinamide reduced the number
of new actinic keratoses in Australian patients with sun-damaged skin.The present study included 386 patients
aged 30 to 91 years who had ≥2 nonmelanoma skin cancers over the past 5 years, and were therefore deemed high-risk.
The patients were randomized to oral nicotinamide 500 mg twice daily or to placebo for 12 months. Dr Damian said that
the patient mix reflected those seen in a typical skin cancer clinic. The average age was 66 years, and 66% of the patients
were men, many with ongoing chronic comorbidities.
“These patients were typical of the ‘warts-and-all’ type of patients we see in the clinic,” Dr Damian said.
The patients were checked by a dermatologist every 3 months and suspicious lesions were biopsied. Nicotinamide
reduced the rates of new basal-cell cancer and squamous-cell cancer diagnoses by 23% compared with placebo (P =
.02). Nicotinamide reduced the rates of actinic keratoses (precancers) by 11% at 3 months and by approximately 15%
after 12 months of treatment compared with placebo.
“This preventive treatment has no side effects. Unlike niacin, another form of vitamin B3, nicotinamide does not cause
headache or increased blood pressure,” Dr Damian said.
This “is welcome news. With this study, we have a remarkably simple and inexpensive way to help people avoid repeat
diagnoses of some of the most common skin cancers. With just a [twice-]daily vitamin pill, along with sun protection and
regular skin cancer screenings, people at high risk for these types of skin cancers have a good preventive plan to follow,”
said ASCO President Peter Paul Yu, MD, Director of Cancer Research, Palo Alto Medical Foundation, C

Editor's Note:
- Oral Nicotinamide Prevents Common Skin Cancers in High-Risk Patients, Reduces Costs https://pmc.ncbi.nlm.nih.gov/articles/PMC4570055/

This study refers to the treatment of common skin cancers. Basal cell carcinoma (skin cancer) is not the same as basaloid squamous cell carcinoma (BSCC), a type of oral squamous cell carcinoma (head and neck cancer).

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@ahimsa Very interesting study and I thank you for posting. The first time I've heard about nicotinamide. I'll buy some today. It certainly couldn't hurt.

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I was treated with 35 rounds of radiation and Ten rounds of chemo. As well as several surgeries. Two on my lungs and five on my jaw including a flap where they removed flesh from my leg to cover necrotic bone areas of my jaw. I had tongue cancer hpv positive. It was inoperable. Had spread to my lymph nodes and lungs. After everything is said and done I will be No Evidence of Disease for two years this July. I also rang the bell for radiation in April of 2023. My tongue has been clear since then. My oncologists are extremely happy about my outcome as I’ve had quite a journey. My osteoradionecrosis is under control as all the exposed bone has healed and is no longer exposed. Several of my surgeries were to remove dead bone that was grinding into my tongue making it impossible to eat solid food. I’ve consumed a lot of high cal Boost and creamed soups along the way and was able to minimize my weight loss. Since treatment I had gained back all the weight and then some for good measure. I have dry mouth and thank God my necrosis is at bay for now. Mayo saved me even though things did not look good in the beginning. Faith in God was key. I prayed for His will and believe he ha a hand in bringing me to the right team to heal me. I’m doing well although my body is weak and I still don’t feel like working out. I am being more active and doing more as time goes by. I am just grateful at this point knowing it could come back and things can go south easily. I’m so sorry so many of you are out of remission. It’s a tough journey.

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Profile picture for justwow @justwow

@jfh1970
Thank you for this information 🥰
My daughter had chemo for Hodgkins and she strongly cautions me to not go that route.

Let’s say I’m lost right now…

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@justwow I breezed through chemo. Radiation was harder for me. And I still have my tongue and can talk normally

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Profile picture for bobfalfa @bobfalfa

I had a lymph node and tumor surgically removed on 2/24/26, so far. PET scan on 6/10/2026 was hopeful, at this point no chemotherapy or radiation, just monitoring. Very grateful I am being treated at the Mayo Clinic. Prayers and well wishes for everyone.

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@bobfalfa, that's good news. What is your follow-up/monitoring schedule?

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Profile picture for justwow @justwow

@jfh1970
Thank you for this information 🥰
My daughter had chemo for Hodgkins and she strongly cautions me to not go that route.

Let’s say I’m lost right now…

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@justwow do what you have to survive. At least chemo and radiation work!

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