I was 10 month out from treatment for the back of my tongue and lymph nodes. 5 chemo treatments and 35 radiation. Then 10 months later I had a tumor on my right lung. Removed with surgery in
November’22. Now 4 months later I have another hot spot on my lung.
Dr said the lungs are the only place
HPV-16 travels too.
Has anyone else experienced this
matastisized part of the Cancer ?
Hello @singlelady61 -- I'm sorry to hear that your cancer spread twice. Yes, we can relate. My husband was diagnosed with HPV+16 squamous cell carcinoma at the base of the tongue in November 2021. The only symptom was swollen lymph nodes on the right side of his neck. He was told "if you're going to get cancer, this is the best kind to get because it's very treatable with 90% success rate." (Seems my husband was in the 10%.) He had an 8-hour surgery in late December 2021 where they removed tissue at the base of his tongue (they removed the primary tumor), and also removed 7 lymph nodes from the right side of his neck. Once he healed from the surgery, he underwent 6 weeks of radiation therapy Feb thru March 2022. Doctors were confident they got it all and told him "this kind of cancer doesn't always respond well to chemotherapy" -- so to avoid the nasty side effects of chemo, and based on the doctor's statements, he opted not to have it. Radiation side effects were and still are nasty, mostly excessive dry mouth and difficulty swallowing, but he has adjusted as best he can. Surgical side effects included numbness on the neck and an inability to raise his right arm straight out and upward. They had to cut a vital nerve to remove the lymph nodes and that nerve controls the upward motion of the shoulder/arm. His shoulder profile is sunken and lower than his left shoulder, but at least he can still swing a golf club (treatment did not improve his slice off the tee--my attempt at humor). First and second CT scans were clear. Third CT scan in Feb. 2023 showed the cancer had spread to his lymph nodes in his chest on top of the lungs. We were devastated. Now his cancer is Stage IV because it has spread. We were told surgery and radiation is not an option at this point. His oncologist told us about a clinical trial for people with exactly his kind of cancer that had recurred/spread. It involves 2 immunotherapy drugs (Keytruda, a well-known cancer immunotherapy drug) and an experimental immunotherapy drug called Pepinemab -- not yet approved by the FDA. The clinical trial is a Phase 1b/2 study sponsored by Vaccinex, Inc. He had his first infusion treatment on April 26, 2023. He had very few side effects, but this was the first and lowest dose -- the dosage increases each time from here on out. We hope these 2 immunotherapy drugs will send his cancer into remission. The oncologist says they've seen good results in about 30% of the clinical trial patients so far. We are hoping and praying for the best, but preparing for the worst (knowing one can never really be prepared for the worst). I'll give updates here to keep everyone up-to-date. Wishing you all well.
Hello @singlelady61 -- I'm sorry to hear that your cancer spread twice. Yes, we can relate. My husband was diagnosed with HPV+16 squamous cell carcinoma at the base of the tongue in November 2021. The only symptom was swollen lymph nodes on the right side of his neck. He was told "if you're going to get cancer, this is the best kind to get because it's very treatable with 90% success rate." (Seems my husband was in the 10%.) He had an 8-hour surgery in late December 2021 where they removed tissue at the base of his tongue (they removed the primary tumor), and also removed 7 lymph nodes from the right side of his neck. Once he healed from the surgery, he underwent 6 weeks of radiation therapy Feb thru March 2022. Doctors were confident they got it all and told him "this kind of cancer doesn't always respond well to chemotherapy" -- so to avoid the nasty side effects of chemo, and based on the doctor's statements, he opted not to have it. Radiation side effects were and still are nasty, mostly excessive dry mouth and difficulty swallowing, but he has adjusted as best he can. Surgical side effects included numbness on the neck and an inability to raise his right arm straight out and upward. They had to cut a vital nerve to remove the lymph nodes and that nerve controls the upward motion of the shoulder/arm. His shoulder profile is sunken and lower than his left shoulder, but at least he can still swing a golf club (treatment did not improve his slice off the tee--my attempt at humor). First and second CT scans were clear. Third CT scan in Feb. 2023 showed the cancer had spread to his lymph nodes in his chest on top of the lungs. We were devastated. Now his cancer is Stage IV because it has spread. We were told surgery and radiation is not an option at this point. His oncologist told us about a clinical trial for people with exactly his kind of cancer that had recurred/spread. It involves 2 immunotherapy drugs (Keytruda, a well-known cancer immunotherapy drug) and an experimental immunotherapy drug called Pepinemab -- not yet approved by the FDA. The clinical trial is a Phase 1b/2 study sponsored by Vaccinex, Inc. He had his first infusion treatment on April 26, 2023. He had very few side effects, but this was the first and lowest dose -- the dosage increases each time from here on out. We hope these 2 immunotherapy drugs will send his cancer into remission. The oncologist says they've seen good results in about 30% of the clinical trial patients so far. We are hoping and praying for the best, but preparing for the worst (knowing one can never really be prepared for the worst). I'll give updates here to keep everyone up-to-date. Wishing you all well.
Hi @simonel, you and your husband have been on a rollercoaster of a journey - and emotions too I suspect. It is hard to reframe hope at every fork in the road.
Having said that this clinical trial does seem to give another chance at hope. How often does he get his infusions? How is it going? How are YOU doing?
Has anyone had throat cancer and gone through radiation? Doctors are recommending 5 weeks of a lower dose radiaion. What short term or long term side effects did you experience.
Has anyone had throat cancer and gone through radiation? Doctors are recommending 5 weeks of a lower dose radiaion. What short term or long term side effects did you experience.
I did last year. It wasn’t throat, but it was tonsil cancer and I did have 6 weeks of radiation treatments (five days a week.) Not trying to scare you, but not gonna lie. It sucked. I couldn’t eat anything, and my neck burned terribly. However if you keep your head in the game and don’t go into a depressed state you can and will fight back. Think of it like a boxing match. One man wins and it’s going to be you! Do what your Drs. tell you too. One thing I regret is not fighting for proton therapy. It supposed to be less damaging than reg radiation. Check that out. Final words-use Aquafor on your neck from DAY 1, look for Healios (grape flavor) on Amazon, and use the magic mouthwash for pain. Dr needs to give you recipe and script. Also flat ginger ale helps tremendously with the mucus. Hope I helped you a little. I’ll pray for you. It takes a lot of time and hard work on your end, but it does eventually get better ❤️🩹
Has anyone had throat cancer and gone through radiation? Doctors are recommending 5 weeks of a lower dose radiaion. What short term or long term side effects did you experience.
Has anyone had throat cancer and gone through radiation? Doctors are recommending 5 weeks of a lower dose radiaion. What short term or long term side effects did you experience.
In addition to @jersey3422 helpful comments, I had 35 rounds of radiation for a total of 70Gy (7 weeks) and 3 rounds of cisplatin chemo for left tonsil cancer back in 2008 and I did research then and found in an England Journal of Medicine that honey could help soothe the throat. I did shots of real honey not the ones you find in your local grocery store which most all are synthetic and don’t have the same benefits. It definitely took some of the edge off for me.
I would use Manuka honey which you can find on Amazon that scores at least UMF 10+ and MGO rating of 100+ are considered potent enough for medicinal use- UMF ranges from 10 to 25, the higher the rating, the more potent the benefits are, and of course, the more expensive, the honey.
Hope this helps and you will get better. Good luck on the journey.
I did last year. It wasn’t throat, but it was tonsil cancer and I did have 6 weeks of radiation treatments (five days a week.) Not trying to scare you, but not gonna lie. It sucked. I couldn’t eat anything, and my neck burned terribly. However if you keep your head in the game and don’t go into a depressed state you can and will fight back. Think of it like a boxing match. One man wins and it’s going to be you! Do what your Drs. tell you too. One thing I regret is not fighting for proton therapy. It supposed to be less damaging than reg radiation. Check that out. Final words-use Aquafor on your neck from DAY 1, look for Healios (grape flavor) on Amazon, and use the magic mouthwash for pain. Dr needs to give you recipe and script. Also flat ginger ale helps tremendously with the mucus. Hope I helped you a little. I’ll pray for you. It takes a lot of time and hard work on your end, but it does eventually get better ❤️🩹
I am just over a year out of the 35 doses of radiation and weekly chemo regimen to cure the cancer on the back of my tongue and right side of my neck’s lymph node.
And totally agree with this post. It is a fight and you will win. The Helios helped immensely. I would add that these days of pain provide a time to learn that God cares for you and is active in your life. Use this time to seek Him and grow in grace and knowledge. He has plans for all of us.
I am just over a year out of the 35 doses of radiation and weekly chemo regimen to cure the cancer on the back of my tongue and right side of my neck’s lymph node.
And totally agree with this post. It is a fight and you will win. The Helios helped immensely. I would add that these days of pain provide a time to learn that God cares for you and is active in your life. Use this time to seek Him and grow in grace and knowledge. He has plans for all of us.
I was going to say that, but I guess I didn’t want to sound too preachy. God certainly helped me get through this and I thank Him every night and day. Try praying it really helps.
I did last year. It wasn’t throat, but it was tonsil cancer and I did have 6 weeks of radiation treatments (five days a week.) Not trying to scare you, but not gonna lie. It sucked. I couldn’t eat anything, and my neck burned terribly. However if you keep your head in the game and don’t go into a depressed state you can and will fight back. Think of it like a boxing match. One man wins and it’s going to be you! Do what your Drs. tell you too. One thing I regret is not fighting for proton therapy. It supposed to be less damaging than reg radiation. Check that out. Final words-use Aquafor on your neck from DAY 1, look for Healios (grape flavor) on Amazon, and use the magic mouthwash for pain. Dr needs to give you recipe and script. Also flat ginger ale helps tremendously with the mucus. Hope I helped you a little. I’ll pray for you. It takes a lot of time and hard work on your end, but it does eventually get better ❤️🩹
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Hello @singlelady61 -- I'm sorry to hear that your cancer spread twice. Yes, we can relate. My husband was diagnosed with HPV+16 squamous cell carcinoma at the base of the tongue in November 2021. The only symptom was swollen lymph nodes on the right side of his neck. He was told "if you're going to get cancer, this is the best kind to get because it's very treatable with 90% success rate." (Seems my husband was in the 10%.) He had an 8-hour surgery in late December 2021 where they removed tissue at the base of his tongue (they removed the primary tumor), and also removed 7 lymph nodes from the right side of his neck. Once he healed from the surgery, he underwent 6 weeks of radiation therapy Feb thru March 2022. Doctors were confident they got it all and told him "this kind of cancer doesn't always respond well to chemotherapy" -- so to avoid the nasty side effects of chemo, and based on the doctor's statements, he opted not to have it. Radiation side effects were and still are nasty, mostly excessive dry mouth and difficulty swallowing, but he has adjusted as best he can. Surgical side effects included numbness on the neck and an inability to raise his right arm straight out and upward. They had to cut a vital nerve to remove the lymph nodes and that nerve controls the upward motion of the shoulder/arm. His shoulder profile is sunken and lower than his left shoulder, but at least he can still swing a golf club (treatment did not improve his slice off the tee--my attempt at humor). First and second CT scans were clear. Third CT scan in Feb. 2023 showed the cancer had spread to his lymph nodes in his chest on top of the lungs. We were devastated. Now his cancer is Stage IV because it has spread. We were told surgery and radiation is not an option at this point. His oncologist told us about a clinical trial for people with exactly his kind of cancer that had recurred/spread. It involves 2 immunotherapy drugs (Keytruda, a well-known cancer immunotherapy drug) and an experimental immunotherapy drug called Pepinemab -- not yet approved by the FDA. The clinical trial is a Phase 1b/2 study sponsored by Vaccinex, Inc. He had his first infusion treatment on April 26, 2023. He had very few side effects, but this was the first and lowest dose -- the dosage increases each time from here on out. We hope these 2 immunotherapy drugs will send his cancer into remission. The oncologist says they've seen good results in about 30% of the clinical trial patients so far. We are hoping and praying for the best, but preparing for the worst (knowing one can never really be prepared for the worst). I'll give updates here to keep everyone up-to-date. Wishing you all well.
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2 ReactionsHi @simonel, you and your husband have been on a rollercoaster of a journey - and emotions too I suspect. It is hard to reframe hope at every fork in the road.
Having said that this clinical trial does seem to give another chance at hope. How often does he get his infusions? How is it going? How are YOU doing?
Has anyone had throat cancer and gone through radiation? Doctors are recommending 5 weeks of a lower dose radiaion. What short term or long term side effects did you experience.
The radiation will be of left tonsil.
Thank you in advance!
@kahoun1, I moved your question about throat cancer and radiation to this exisiting discussion in the Head & Neck Cancer support group so you can connect with others
- HPV Throat Cancer
https://connect.mayoclinic.org/discussion/hpv-throat-cancer/
You can also use the group search function to find discussions related to radiation https://connect.mayoclinic.org/group/head-neck-cancer/?search=radiation&index=discussions
When do you start radiation treatment? Will you have daily treatment M-F for the 5 weeks?
I did last year. It wasn’t throat, but it was tonsil cancer and I did have 6 weeks of radiation treatments (five days a week.) Not trying to scare you, but not gonna lie. It sucked. I couldn’t eat anything, and my neck burned terribly. However if you keep your head in the game and don’t go into a depressed state you can and will fight back. Think of it like a boxing match. One man wins and it’s going to be you! Do what your Drs. tell you too. One thing I regret is not fighting for proton therapy. It supposed to be less damaging than reg radiation. Check that out. Final words-use Aquafor on your neck from DAY 1, look for Healios (grape flavor) on Amazon, and use the magic mouthwash for pain. Dr needs to give you recipe and script. Also flat ginger ale helps tremendously with the mucus. Hope I helped you a little. I’ll pray for you. It takes a lot of time and hard work on your end, but it does eventually get better ❤️🩹
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5 ReactionsHi @kahoun1 , this is the place. Just do a little browsing. Many of us here can help you along this path. Courage.
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1 ReactionHi kahoun1,
In addition to @jersey3422 helpful comments, I had 35 rounds of radiation for a total of 70Gy (7 weeks) and 3 rounds of cisplatin chemo for left tonsil cancer back in 2008 and I did research then and found in an England Journal of Medicine that honey could help soothe the throat. I did shots of real honey not the ones you find in your local grocery store which most all are synthetic and don’t have the same benefits. It definitely took some of the edge off for me.
I would use Manuka honey which you can find on Amazon that scores at least UMF 10+ and MGO rating of 100+ are considered potent enough for medicinal use- UMF ranges from 10 to 25, the higher the rating, the more potent the benefits are, and of course, the more expensive, the honey.
Hope this helps and you will get better. Good luck on the journey.
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Helpful -
Hug
1 ReactionI am just over a year out of the 35 doses of radiation and weekly chemo regimen to cure the cancer on the back of my tongue and right side of my neck’s lymph node.
And totally agree with this post. It is a fight and you will win. The Helios helped immensely. I would add that these days of pain provide a time to learn that God cares for you and is active in your life. Use this time to seek Him and grow in grace and knowledge. He has plans for all of us.
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Like -
Helpful -
Hug
1 ReactionI was going to say that, but I guess I didn’t want to sound too preachy. God certainly helped me get through this and I thank Him every night and day. Try praying it really helps.
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1 ReactionThank you so much for all of this information. I will research proton therapy.
Jane