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.
Thank you so much for taking the time to address my question. I do believe this is in Gods hands and he will walk with us during this very difficult time 🙏
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.
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 finished 7 weeks of proton therapy and Cisplatin chemo last September. I had my 3rd three month checkup last month and it was clear. I would definitely recommend you find a proton radiation therapy treatment. It’s finely targeted to the tumor to minimize collateral damage.
Nevertheless, I have some side effects but definitely not debilitating. I followed all the recommendations from the care team. I had an excellent Speech-Language Therapist who taught me a series of exercises to preserve the swallowing muscles function. There’s also a program called Eat All Through Radiation. You should ask your care team about these. They really worked for me.
You also may be told to gargle at least three time a day with baking soda and salt water. I read early on a comment that a patient had posted saying he made a batch every morning and put the container in the bathroom so he could use it more frequently. I followed that advice gargling 5-10 times a day.
Finally I didn’t use the Aquafor as it’s a petroleum based lotion and putting that on my neck and then undergoing radiation seemed crazy. So I used shea butter, coconut oil or aloe vera gel at least 5 times a day on my neck. Before this I had never really used lotions so it was new to me. Also a radiation tech told me early on to completely wash the lotion off with soap and water before treatment. Then wait two hours after treatment to allow residual heat to subside before reapplying lotion. I had very little external effects on my skin, so it seemed to have worked.
Hope this helps.
I’m usually very courageous about anything life kicks my way, but for once I’m stumped. Honestly terrified. I’m putting my best face forward for my family.
I’m 63/f. with early stage 1/hpv pos16 scc. which spread to my left neck lymph nodes.
I haven’t been intimate for well over 15 years, and I am blown away that no lab tests, etc ever picked this up…
I have thickening at the left tongue base, and it is in at least 3 lymph nodes in the left side only of my neck.
Dr said to remove the area at base of tongue with robotic surgery, and do neck dissection/ remove all lymph nodes at the same time.
I’m beside myself here. There is no cure for the virus, and the cancer can and does reoccur…
Then why have my neck dissected, damaging vital nerves that control areas of my face, shoulders, arms etc? Everyone tells me it’s better than radiation- but
I don’t want to be disfigured. I don’t want any chance of losing my ability to swallow, speak, eat, move my mouth, become unable to raise my arms which means no longer able to pick up my grandbabies
I don’t know where to start, who to really trust. I am considering both MD Anderson, and John’s Hopkins. Both are great -
I had the same diagnosis at 70 but tonsil and not tongue. Did two surgeries. First was tonsillectomy and biopsies then TORS and dissection followed by deescalated radiation and chemo. Radiation 2xday for ten days and chemo once a week.
I hadn’t had any physical contact for years. PA told me that the virus lives in the back of your throat for years and can spread at any time. I will always believe that it was triggered by Covid. I decided to do the treatment. Had two lymph nodes that were positive out of the 18!that were removed. but contained and cancer was not outside the lymph nodes. I went to a great teaching hospital. Feel great now but it’s tough to get through. Good luck
I’m usually very courageous about anything life kicks my way, but for once I’m stumped. Honestly terrified. I’m putting my best face forward for my family.
I’m 63/f. with early stage 1/hpv pos16 scc. which spread to my left neck lymph nodes.
I haven’t been intimate for well over 15 years, and I am blown away that no lab tests, etc ever picked this up…
I have thickening at the left tongue base, and it is in at least 3 lymph nodes in the left side only of my neck.
Dr said to remove the area at base of tongue with robotic surgery, and do neck dissection/ remove all lymph nodes at the same time.
I’m beside myself here. There is no cure for the virus, and the cancer can and does reoccur…
Then why have my neck dissected, damaging vital nerves that control areas of my face, shoulders, arms etc? Everyone tells me it’s better than radiation- but
I don’t want to be disfigured. I don’t want any chance of losing my ability to swallow, speak, eat, move my mouth, become unable to raise my arms which means no longer able to pick up my grandbabies
I don’t know where to start, who to really trust. I am considering both MD Anderson, and John’s Hopkins. Both are great -
@justwow Hello . First off this a very winnable battle. In particular, if this is HPV +16 as you stated. Google can certainly take you down the rabbit hole with negative outcomes. Your odds are extremely good ! HPV 16 Cancer recurrence is less than 20% in most studies.
If this is any help here is my story which is very close to your current situation....I am 58. I was diagnosed with Stage 4 HPV 16+cancer of Base of tongue and Neck March 2023. I had TORS(robotic) surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I opted out of any Chemo treatment. I chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much further. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth, Neck, tongue and swallowing exercises prior to proton Radiation. You may need to seek a Speech therapist as they can help with this. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything will have no taste. Now the good news... As far as today two years out. I can eat and drink about anything I want. My taste buds are about 95% , My throat mucositis has almost gone away, Saliva production 95% and My stamina is back to about 95% . I have no issues with speaking, eating, moving my mouth or raising my arms as you mentioned you were worried about. I will continue to have a throat scope and CT scan every 6 months for two more years or so. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. It will become more important once you have completed your treatment to monitor any HPV 16 cancer activity in your system. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will not be a fun 6 months or so. However, You will make it and things in a year will be looking up. Some things may not taste the same, some slight neck or throat discomfort but you will be alive. There will be a new "normal" but It beats the alternative. Lean on your Faith
I’m switching insurance from Kaiser to a Blue Cross PPO gold plan (employer covered) I’m hoping if I need radiation, this will be good enough.
The Kaiser Dr recommended TORS and the removal of all lymph nodes on left side of neck in case there’s any microscopic cancer they didn’t pick up on. Couldn’t I just have the nodes that have SCC with diffuse p16 markers removed and finish off with proton treatment (I looked this up last week and told myself if I must have radiation- this will be it)
She said if I have them all removed then I won’t need radiation or chemo. She also said if I had radiation I would have scarring anyway so basically she was saying what’s the difference 🙁
And for the neck dissection (I watched one performed on YouTube), couldn’t I have a laparoscopy by robot instead which eliminates the need for open dissection? Probably not…
One of my daughters battled Hodgkin lymphoma- she had chemo and is 7 years post treatment - she told me if she had the choice, she would choose the surgery.
@justwow Hello . First off this a very winnable battle. In particular, if this is HPV +16 as you stated. Google can certainly take you down the rabbit hole with negative outcomes. Your odds are extremely good ! HPV 16 Cancer recurrence is less than 20% in most studies.
If this is any help here is my story which is very close to your current situation....I am 58. I was diagnosed with Stage 4 HPV 16+cancer of Base of tongue and Neck March 2023. I had TORS(robotic) surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I opted out of any Chemo treatment. I chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much further. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth, Neck, tongue and swallowing exercises prior to proton Radiation. You may need to seek a Speech therapist as they can help with this. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything will have no taste. Now the good news... As far as today two years out. I can eat and drink about anything I want. My taste buds are about 95% , My throat mucositis has almost gone away, Saliva production 95% and My stamina is back to about 95% . I have no issues with speaking, eating, moving my mouth or raising my arms as you mentioned you were worried about. I will continue to have a throat scope and CT scan every 6 months for two more years or so. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. It will become more important once you have completed your treatment to monitor any HPV 16 cancer activity in your system. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will not be a fun 6 months or so. However, You will make it and things in a year will be looking up. Some things may not taste the same, some slight neck or throat discomfort but you will be alive. There will be a new "normal" but It beats the alternative. Lean on your Faith
I just read that yes, Proton tgerapy is commonly used for HPV-positive base-of-tongue cancers. It can cover the primary tumor and involved cervical nodes while reducing dose to salivary glands, oral cavity, spinal cord, and swallowing structures—often leading to fewer side effects (dry mouth, taste changes, swallowing problems) compared with some photon plans.
I’m going to have to ask the doctors at jhopkins if I would be a good candidate.
Would you mind telling me about the side effects you had from the proton therapy? Was there scarring involved? Anything really adverse?
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Thank you so much for taking the time to address my question. I do believe this is in Gods hands and he will walk with us during this very difficult time 🙏
God bless you 🙏
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1 ReactionThank you so much for the kind words. I do believe in the power of prayer so very much 🙏
Thank you so much for the feedback. I’m willing to try anything to keep him comfortable during this time. 🙏
Hello, radiation starts Wednesday for five full weeks Monday thru Friday.
I finished 7 weeks of proton therapy and Cisplatin chemo last September. I had my 3rd three month checkup last month and it was clear. I would definitely recommend you find a proton radiation therapy treatment. It’s finely targeted to the tumor to minimize collateral damage.
Nevertheless, I have some side effects but definitely not debilitating. I followed all the recommendations from the care team. I had an excellent Speech-Language Therapist who taught me a series of exercises to preserve the swallowing muscles function. There’s also a program called Eat All Through Radiation. You should ask your care team about these. They really worked for me.
You also may be told to gargle at least three time a day with baking soda and salt water. I read early on a comment that a patient had posted saying he made a batch every morning and put the container in the bathroom so he could use it more frequently. I followed that advice gargling 5-10 times a day.
Finally I didn’t use the Aquafor as it’s a petroleum based lotion and putting that on my neck and then undergoing radiation seemed crazy. So I used shea butter, coconut oil or aloe vera gel at least 5 times a day on my neck. Before this I had never really used lotions so it was new to me. Also a radiation tech told me early on to completely wash the lotion off with soap and water before treatment. Then wait two hours after treatment to allow residual heat to subside before reapplying lotion. I had very little external effects on my skin, so it seemed to have worked.
Hope this helps.
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Helpful -
Hug
6 ReactionsI’m usually very courageous about anything life kicks my way, but for once I’m stumped. Honestly terrified. I’m putting my best face forward for my family.
I’m 63/f. with early stage 1/hpv pos16 scc. which spread to my left neck lymph nodes.
I haven’t been intimate for well over 15 years, and I am blown away that no lab tests, etc ever picked this up…
I have thickening at the left tongue base, and it is in at least 3 lymph nodes in the left side only of my neck.
Dr said to remove the area at base of tongue with robotic surgery, and do neck dissection/ remove all lymph nodes at the same time.
I’m beside myself here. There is no cure for the virus, and the cancer can and does reoccur…
Then why have my neck dissected, damaging vital nerves that control areas of my face, shoulders, arms etc? Everyone tells me it’s better than radiation- but
I don’t want to be disfigured. I don’t want any chance of losing my ability to swallow, speak, eat, move my mouth, become unable to raise my arms which means no longer able to pick up my grandbabies
I don’t know where to start, who to really trust. I am considering both MD Anderson, and John’s Hopkins. Both are great -
my mind is a runaway train….
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Like -
Helpful -
Hug
2 ReactionsI had the same diagnosis at 70 but tonsil and not tongue. Did two surgeries. First was tonsillectomy and biopsies then TORS and dissection followed by deescalated radiation and chemo. Radiation 2xday for ten days and chemo once a week.
I hadn’t had any physical contact for years. PA told me that the virus lives in the back of your throat for years and can spread at any time. I will always believe that it was triggered by Covid. I decided to do the treatment. Had two lymph nodes that were positive out of the 18!that were removed. but contained and cancer was not outside the lymph nodes. I went to a great teaching hospital. Feel great now but it’s tough to get through. Good luck
-
Like -
Helpful -
Hug
3 Reactions@justwow Hello . First off this a very winnable battle. In particular, if this is HPV +16 as you stated. Google can certainly take you down the rabbit hole with negative outcomes. Your odds are extremely good ! HPV 16 Cancer recurrence is less than 20% in most studies.
If this is any help here is my story which is very close to your current situation....I am 58. I was diagnosed with Stage 4 HPV 16+cancer of Base of tongue and Neck March 2023. I had TORS(robotic) surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I opted out of any Chemo treatment. I chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much further. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth, Neck, tongue and swallowing exercises prior to proton Radiation. You may need to seek a Speech therapist as they can help with this. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything will have no taste. Now the good news... As far as today two years out. I can eat and drink about anything I want. My taste buds are about 95% , My throat mucositis has almost gone away, Saliva production 95% and My stamina is back to about 95% . I have no issues with speaking, eating, moving my mouth or raising my arms as you mentioned you were worried about. I will continue to have a throat scope and CT scan every 6 months for two more years or so. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. It will become more important once you have completed your treatment to monitor any HPV 16 cancer activity in your system. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will not be a fun 6 months or so. However, You will make it and things in a year will be looking up. Some things may not taste the same, some slight neck or throat discomfort but you will be alive. There will be a new "normal" but It beats the alternative. Lean on your Faith
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Like -
Helpful -
Hug
7 ReactionsThank you for sharing your story ❤️
I’m switching insurance from Kaiser to a Blue Cross PPO gold plan (employer covered) I’m hoping if I need radiation, this will be good enough.
The Kaiser Dr recommended TORS and the removal of all lymph nodes on left side of neck in case there’s any microscopic cancer they didn’t pick up on. Couldn’t I just have the nodes that have SCC with diffuse p16 markers removed and finish off with proton treatment (I looked this up last week and told myself if I must have radiation- this will be it)
She said if I have them all removed then I won’t need radiation or chemo. She also said if I had radiation I would have scarring anyway so basically she was saying what’s the difference 🙁
And for the neck dissection (I watched one performed on YouTube), couldn’t I have a laparoscopy by robot instead which eliminates the need for open dissection? Probably not…
One of my daughters battled Hodgkin lymphoma- she had chemo and is 7 years post treatment - she told me if she had the choice, she would choose the surgery.
I’m just terrified.
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@slmoore0626
Hello again
I just read that yes, Proton tgerapy is commonly used for HPV-positive base-of-tongue cancers. It can cover the primary tumor and involved cervical nodes while reducing dose to salivary glands, oral cavity, spinal cord, and swallowing structures—often leading to fewer side effects (dry mouth, taste changes, swallowing problems) compared with some photon plans.
I’m going to have to ask the doctors at jhopkins if I would be a good candidate.
Would you mind telling me about the side effects you had from the proton therapy? Was there scarring involved? Anything really adverse?
Thanks!
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