1. < Head & Neck Cancer

Head & neck radiation side effects continue, especially swelling

Posted by jessskoldal @jessskoldal, Jan 23, 2022

I was diagnosed with Esthesioneuroblastoma in June of 2021. I underwent two surgeries to remove the tumor and repair my skull base. After healing from those surgeries I underwent 30 rounds of radiation therapy to my head and neck. During radiation therapy I experienced brain swelling but with the use of steroids we were able to continue and ultimately complete the full 30 rounds. Since radiation has ended in November I have experienced a myriad of lasting side effects. I was initially told that it would take 6 to 8 weeks to heal from radiation, but I am finding that even this far out (11 weeks) I am still experiencing some pretty significant and frustrating side effects. The most concerning side effect I am experiencing right now is swelling. My face and neck are very swollen but I have noticed that I am experiencing swelling in my arms, legs, hands, shoulders, etc. Pretty much anywhere that can swell has developed swelling although my face and neck are the most noticeable. My oncologist doesn't think this is lymphedema and other issues such as thyroid dysfunction and Cushing's syndrome have been ruled out as well. My oncologist says this is an "inflammatory response" because I was sensitive to the radiation treatments and this will likely take an additional 1 to 3 months to resolve. To me, it just seems like no one really knows what is going on or what to do about it and they're just making guesses. I'm beyond frustrated at this point and am desperately seeking advice from anyone that may have experienced this or is currently experiencing this. Being swollen all the time is extremely uncomfortable and is one of the main reasons that I have been unable to return to work. Though I would not wish this on anyone, I hope someone out there has gone through this or has some advice to offer. I'll take any little bits of information or advice available.

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juma | @juma | 10 hours ago

I had cypberknife radiation due to metastzied lung cancer almost three years ago and I am just now learning that my skin problem are most likely related to the radiation. None of the side effects were explained to me and I have seen a dermatologist who, after more than two years of my own research, found that there iymphoedema which affects my scalp and skin. There was/is minimal swelling and only recently, when the symptoms evolved into weeping lesions, initially along the chin, expanding - as liquids do - wherever it could find room. The lesions then turn into what feels like "barnacles", that will leave scars. I have lost most of my eyebrows, eyelashes and all elasticity of my skin, a depressing development. I have been on every imaginable topical and oral medication for acne, fungal and bactterial infections and I am now on an injectable med. None of them have worked and I am at my wit's end. Has anyone experienced such long-term effect and what can be done about it?

REPLY
loridalton | @loridalton | Jul 5 5:50pm
In reply to @lilypilly "@loridalton do you think that maybe it is lymphedema? Have you asked or checked for this?" + (show)
@lilypilly

@loridalton do you think that maybe it is lymphedema?
Have you asked or checked for this?

Jump to this post

No, I haven’t considered this. I will research it now.

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lilypilly | @lilypilly | Jul 5 2:42pm

@loridalton do you think that maybe it is lymphedema?
Have you asked or checked for this?

REPLY
1 reply
loridalton | @loridalton | Jul 4 11:53am

Diagnosed with invasive lobular cancer of the left breast in January 2025. I had a lumpectomy and 5 days of radiation. Radiation ended on April 18. Started taking anastrozole, an estrogen blocker, 2 weeks later. I had an allergic reaction 1 month later, red cheeks, nose, and swollen eyes. Then I took exemestane, another estrogen blocker, and had an allergic reaction 9 days later, with the same symptoms. Both times, I took a steroid to alleviate the itching and swelling. My oncologist said to stay off everything until my appointment in August.
Today, July 4th, my left eye is swollen, and I have itching on my left ear, neck, and a rash on the left side of my back and behind my left knee. went to urgent care, and the doctor said I can't take any more steroids. She wondered if this was a reaction to radiation therapy. Any thoughts?

REPLY
baz123 | @baz123 | Sep 17, 2024
In reply to @baz123 "Please I have been there and back radiation damage ,chemo ,feeding tube lost 90 lbs .What..." + (show)
@baz123

Please I have been there and back radiation damage ,chemo ,feeding tube lost 90 lbs .What save me was Hyperbaric treatment 60 sessions 2hrs a day x60 days undid all radiation damage and saved my voice box I had HPV tumour on my larynx.Please look into hyperbaric oxygen treatment I cannot say enough about it Saved Me 🤞good luck

Jump to this post

Thank you

REPLY
Jano | @jano | Sep 15, 2024
In reply to @jano "Hi there, I am five years out. Thank goodness no surgery but had 35 rounds of..." + (show)
@jano

Hi there, I am five years out. Thank goodness no surgery but had 35 rounds of radiation and several rounds of aggressive chemotherapy. I still experience side effects and happy to say no swelling. But I have neuropathy, numb cold toes, lack of taste, and hearing /vision was affected, and teeth problems.
But things could be worse. It never goes away. Thankful for those good days.I wish you all success, patience and well wishes
You will see improvements. Takes time. Remember we went to hell and back. Take good care.

Jump to this post

Thank you for the hug. Hope you’re doing good.😀

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cris2 | @cris2 | Sep 8, 2024
In reply to @jonesja "Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023. Here is..." + (show)
@jonesja

Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023.
Here is my story....I am 57. I had TORS 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 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 . I did not have any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 14 months out of treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . My neck is still somewhat tight and I have an occasional shooting nerve pain but doesnt last long. I will continue to have a throat scope and CT scan every 3 months for two years. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will get better for you in the next 6 months or so. Some things may not taste the same, you may have some slight neck or throat discomfort and a little less energy but you will be alive. I take the time now to thank God every morning when I get up, go outside more, look at the clouds and stars, etc. You got this. Have Faith

Jump to this post

My husband has to have a few lymph nodes removed from neck, how bad is that to go through, we’re pretty nervous. He already had treatment and now a couple more show up six months after. Not happy.

REPLY
jimfitz | @jimfitz | Aug 29, 2024
In reply to @baz123 "Please I have been there and back radiation damage ,chemo ,feeding tube lost 90 lbs .What..." + (show)
@baz123

Please I have been there and back radiation damage ,chemo ,feeding tube lost 90 lbs .What save me was Hyperbaric treatment 60 sessions 2hrs a day x60 days undid all radiation damage and saved my voice box I had HPV tumour on my larynx.Please look into hyperbaric oxygen treatment I cannot say enough about it Saved Me 🤞good luck

Jump to this post

I am open to all options thanks for this information I haven’t seen it before

REPLY
baz123 | @baz123 | Aug 29, 2024

Please I have been there and back radiation damage ,chemo ,feeding tube lost 90 lbs .What save me was Hyperbaric treatment 60 sessions 2hrs a day x60 days undid all radiation damage and saved my voice box I had HPV tumour on my larynx.Please look into hyperbaric oxygen treatment I cannot say enough about it Saved Me 🤞good luck

REPLY
2 replies
jimfitz | @jimfitz | Aug 28, 2024
In reply to @jonesja "Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023. Here is..." + (show)
@jonesja

Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023.
Here is my story....I am 57. I had TORS 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 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 . I did not have any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 14 months out of treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . My neck is still somewhat tight and I have an occasional shooting nerve pain but doesnt last long. I will continue to have a throat scope and CT scan every 3 months for two years. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will get better for you in the next 6 months or so. Some things may not taste the same, you may have some slight neck or throat discomfort and a little less energy but you will be alive. I take the time now to thank God every morning when I get up, go outside more, look at the clouds and stars, etc. You got this. Have Faith

Jump to this post

Thank you for your reply. I never lost faith just when i was told it is a long recovery i never dreamed it was going to take this long !! I found out quickly the Drs dont want to be pinned down to any time frame. I would just like the swelling to go down so i can get some teeth in and start eating food again.

REPLY
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