Looking to connect with people being treated for HPV Throat Cancer
Looking for others to discuss this type of cancer. Treatments, success rate, etc. I have been treated but it has returned.
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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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1 Reaction@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.
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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1 Reaction@justwow I breezed through chemo. Radiation was harder for me. And I still have my tongue and can talk normally
@bobfalfa, that's good news. What is your follow-up/monitoring schedule?
@justwow do what you have to survive. At least chemo and radiation work!