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Head & neck radiation side effects continue, especially swelling
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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The recovery takes longer than you may think. Some issues never recover so we just learn to live with it. I had nerve issues for years, bugs crawling on my face and neck that were not there. Very annoying. Swallow, teeth, taste, issues. Constant runny nose issues. Neck, tongue, and jaw cramps. Lack of saliva. All fun stuff. But over time (months and years) these issues subsided. I think the last to go were the arm tingles about twelve years out.
But that's me. You are unique in your cancer and treatments so your recovery will be unique as well. Everything you said that is happening to you is actually rather normal. It will get better. I will say that again, it will get better. You will adjust. It is rare that you can expect to be just as you were before the cancer so when you accept that, life gets easier. Two years out you will say to yourself, "I will never go through that again!" But five years out you will have a different point of view most likely.
Ewe! The blisters on the tongue! Yuck. I hated that too. They eventually stop cropping up. And the taste takes perhaps a year or more to get back on track. You might discover foods you never liked before whilst other favorites are no longer that appealing. That might be an age thing as well, not sure.
Good luck and we are here for you.
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6 ReactionsHi, I had HPV P16 Positive Head and Neck cancer diagnosed on 10 Jan 2017 based on the radiologist
results after I had 31 lymph nodes removed. Two where positive and fortunately for me the cancer
remained in those nodes and didn't spread. That being said, I began my 30 day regiment of radiation
treatment on 27 Jan 2017 with the last 2 doses were given on the same day, 6hrs apart, 26 March, 2017.
Bottom line, everyday was an experience that I had been told COULD HAPPEN but my doctors would NEVER say this is WHAT WILL HAPPEN. I apologize for the bold bluntness of my wording BUT the medical experts
can only comment on what potentially could happen to organs/blood etc. I believe when it comes to how high the dosage of radiation that was applied and how it will affect each individual, they have no idea. I believe,
as a trained psychologist, the doctors always give positive feedback so that you don't give up.
From my research, it seems like EVERY TYPE of cancer has its own individual issues based on each person.
I never feel like I am "Cancer Free" nor a 100% "Cancer Survivor" after 5 plus yrs because the medical folks
are using scientific data and not my genetic data etc. All research is based on subjective input from patients
and KNOWN survivability rates. If we could talk to each individual used in collecting the data, we would be better informed of each specific experience they had but that is impossible. I truly hope and pray you find, with time, life will get better. I still deal with throat, voice issues, numbness/no feeling in my right cheek, loss 7 teeth on my lower right jaw and my taste buds have changed for everything I eat. On feeding tube for 5 months, it needed to be replaced twice because of infection. I wanted it out so they did it. Resulting in a loss of weight from 206 to 145 libs but have regained 12 libs since surgery. I hope I have helped you with your issues. For me , I turn to GOD both on the good and bad days. I know it will be a life long challenge but I am alive and that is all that matters. God Bless!
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4 ReactionsHi 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.
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2 ReactionsThank you for reminding me to let me myself trust more in God.
Right now I am going through a real depression period. I can't hear out of my left ear so sounds are distorted which affects how I communicate and even though I have 3 different meds for depression from before I stopped taking them all during treatment. I don't see how starting them up again could help me now. One was to help me sleep, well I sleep ok. One was for anxiety Wellbutrin, I don't feel as anxious now as I used to it's almost like "oh come-on what else can you throw at me now". The other was prescribed for pain control "osteoarthritis , fibromyalgia". Well I am taking a small amount of pain meds so don't want to add to that either.
Thing is I don't have anyone to talk to about these kinds of things except for you good folks. My spouse is just waiting for me to "get well" and doesn't want to hear about anything cancer related at all.
One bright spot coming up for me is the docs will be removing the trache tube from my neck next week. I am so thankful for that. I understood the need but really dislike the thing. Next up once I can get myself to eat again, no appetite at all and still have lockjaw, will be the feeding tube. Small things granted but good things to look forward to.
But back to God, he's never far from my thoughts I try and stay thankful for the smallest of things sometimes it's more difficult but I see him in all Creation.
Thanks for listening
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1 ReactionHave you experienced any issues with the stoma closure? My husband’s stoma has never closed 12 months after trach was removed. He is always spitting out mucous from the stoma. We hesitate to have the procedure done to close it due to fear of aspiration.
Mine took several months to finally close up, I recall being very concerned but my ENT doc did say some take longer than others. 12 months does sound really excessive to me though. I understand your concern about another procedure for sure. What does his doctor say, can you get a second opinion? Please let us know what you choose and how your husband is doing. Praying all goes smoothly.
Lynn
I am so happy to discover this site. My daughter-in-law, age 40 was diagnosed a month ago with angiosarcoma of the scalp. She lives in Japan with my son and 2 small children. They tried to get her qualified for the experimental radiation program in Japan but the lesion was removed on her scalp and they can't find any margins of cancer. Today, 4-4-23, she started the traditional radiation treatment. She will undergo treatment 5 days a week until 5-26-23 which is their 18th wedding anniversary. Her scalp continuously bleeds and that has been so frustrating for her. Hopefully, I can gain some helpful information on this site to pass on to my children.
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1 ReactionTell her to hang in there as radiation is well worth it. I had angiosarcoma on my cheek removed in 2012 with clear margins. Then 30 treatments of radiation to insure no stray cells were left. I have been cancer free until this year when it came back adjacent to that site. This is beating the odds for AS and I attribute it to the radiation and early discovery ( both times). Best wishes to her.
Jess, It’s been a little over a year now for you. We would imagine you are doing better. It is normally a long time to recovery and even two years or longer is more common than not. What you have been through has not been a picnic. If you have questions or concerns we are still here. Don’t hesitate to ask.