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 group.
Welcome to Connect, @fxdwing. You'll notice that I moved your message to the Head & Neck Cancer group (https://connect.mayoclinic.org/group/head-neck-cancer/) so that you can more easily connect with others living with HPV throat cancer. I encourage you to +Follow the group, read through this discussion:
* Meet others living with Head & Neck Cancer – Come introduce yourself https://connect.mayoclinic.org/discussion/meet-others-living-with-head-neck-cancer-come-introduce-yourself/
I'm also bringing @alpaca, @jeffk, @loli and @rebecca1972 into this discussion.
Fxdwing, while we wait for others to join in, can you tell me a bit more about your cancer journey to date? You mention that your cancer has returned. What treatments have you had in the past and what treatment options are being suggested now?
I had 35 treatments of radiation ending April 3. Along with those I had 7 treatments of chem. In July I had a PET scan that showed no cancer. By mid August the pain in my throat and left ear started again. In September I started spitting blood and had a scope done of my throat that showed a lump and a white puss area. Biopsy done on Sept. 26 that I am waiting for the results.
Hello @fxdwing. So sorry that your throat cancer seems to have returned. This is unusual and unfortunate with HPV cancer after such rigorous treatment. I am a repeat head and neck cancer patient too although mine started as tongue cancer and reappeared inside my cheek four years later. I had so far successful treatment to rid me of the second cancer.
I know at least one other person who had salvage surgery after recurrent HPV base of tongue cancer. I have heard of others.
All I can say is that it can be done and that I have an inkling of how you must feel. The time between first suspicion and results is horrible. I'm sure that you medical team will come up with a treatment plan though.
Wishing you well. Sorry I can't give you more information right now. I will do a bit of digging.
Hi @fxdwing, I’m so sorry to hear about your current health concerns. I was treated for stage IV HPV oropharyngeal cancer in 2015. The tumor was on the right side base of tongue and had spread to the lymph nodes on both sides. I too underwent 35 radiation treatments and 3 rounds of chemo (cisplatin). My last treatment was in June 2015. I am living with the long term effects of the radiation- jaw bone necrosis, dry mouth, some difficulty swallowing, and my voice has not quite returned to normal. I’m keeping you in my thoughts and prayers and hoping for the best possible outcome for you.
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It's a very difficult cancer @fxdwing and @catlyn. I'm sending you both good wishes all the way from New Zealand.
Thank you, @alpaca, your kindness is appreciated (and hello from Michigan!). It seems there is so much still to learn about HPV positive head and neck cancer and its potential for recurrence.
My husband also went through strenuous treatment for base of tongue cancer from HPV
Petscan in March he was clear, petscan in October he was not. On Friday he underwent a neck dissection at Mayo and we are waiting to see if we can re radiate
@lynalexa, how distressing that the cancer has returned, I am so sorry that this difficult part of the journey continues.
Sending positive thoughts of strength and support.
Welcome to Connect, @lynalexa. I’m truly sorry to hear about the recurrence; I’m confident that @alpaca, @jeffk, @loli and @rebecca1972 will join in soon to support you with their insights. In the meantime could you share a few more details about your husband? When was he diagnosed? Moving forward, what are his treatment options?
I sincerely wish you and your husband all success, and hope to hear from you soon.
Unfortunately I am not familiar with this type of cancer. My cancer was removed surgically and did not require chemo or radiation. Mine was a very rare form and less than 200 case had ever been reported of laryngeal chondrosarcoma. What I do know is that of all the doctors I went to get opinions only one believed that he could get all the cancer and maintain my functionality; breathing, speaking and eating. Mayo is the only place I found hope and I believed they could help me and I had faith in my doctor. If you are being treated at Mayo you most likely have the best care anyone can provide. My thoughts and prayers are with you in your journey.
My SCC was in the external ear canal and non-hpv but in 2012 I had 35 radiation tx while doing 7 cetuximab (Erbitux) treatments….a targeted therapy. I believe that is approved for use in recurrent H & N cancer now. Dr. Price at Mayo really liked that type of chemo to sensitize the tumor during the radiation. I also have met several other H&N patients at the immune therapy clinic in Freeport, Grand Bahama Island, where I have continued immune therapy treatment since the end of radiation. You can look into this via the website immunetherapy.net. The clinic has just reopened in a new location with a new medical director after being closed for 2 years. It does seem to help in the battle against SCC, and I credit it with prolonging my life, as it has done for many others. First and foremost, though, is to follow thru with traditional medicine. Also look into research about Beta glucan as an immune system modulator. You can purchase it yourself but there are good and poor products out there.
Hi lynalexa. I am also truly sorry for the recurrence; but I concurre with jeffk, you are in the right place and you will get the best treatment available in the country. That being said, we all are here to support you and talk about it as much as you need or want. We all know what you are going through. Each single day is a blessing though most very though when you are going through treatment. But you can do it and you will.
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