Struggling with post radiation treatment side effects .

Has anyone received some type of comfort medicine from your medical team to help with every day debilitating side effects ?

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My brother has been hospitalized twice since April because he can't eat due to radiation inflammation of his esophagus- stage 4 adenocarcinoma. It's not the cancer that's killing him now, it's the subsequent treatment. He' got a feeding tube but gets full so fast and nauseous that it doesn't provide enough sustenance. It is back to the ER for us probably, so he can be admitted again. Just trying our best, and every and all soft food,liquid, pureed smoothie to keep him from starving to death.

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Oh my , I am so sorry to hear about his struggles ! Can’t imagine how he must feel . I have to stop complaining .

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Profile picture for josk @josk

I had nasopharyngeal carcinoma treatment in 2006 - 35 sessions of radiation plus chemo as well. A few years after treatment, I thought I was back to norm!!
But in mid 2020 - when I started having issues with speech and swallowing (not to mention hearing impairments at the very beginning of treatment) - I was diagnosed with 'late effects of radiation'. And since then, 'late effects of radiation' creeps up bit by bit - numbness in lower jaw and lip, misaligned vision in left eye (radiation was on the left side), drooling, swallowing is getting worse - to the point where the last few drops will stay in my mouth - choice is to have a paper napkin to remove the excess or spit it out.
I believe these late effects apply to head and neck radiation treatment.
This is my personal journey .. and with advance in treatment - hope you fare better!!

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@josk Sounds like me...Had my last throat and neck radiation 4 1/2 years ago and in the past 9 months I am getting a swollen palate and upper gums above the molars. Plus I have always had muscous build-up above my palate. Could be from the 33 lymph nodes they removed on my left side of the neck. Only 2 or 3 were positive but by standard procedures they take the whole left side (33) out. Or is this 24/7 mucous coming from post radiation?

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Profile picture for ernierogersquamus123 @ernierogersquamus123

The question is , when and how will they Get It !
Some people can’t understand what it is like to not be able to eat because of the nausea .
My analogy is this . You stop by your friends house who just threw up from too much drinking . You say , “hey let’s go have a stake dinner at Garlock and he looks at you like he could kill you .
Based on the the fact that doctors don’t have the experience with cancer recovery symptoms wouldn’t it be nice if they would bring this issue up at their conferences. Topic # 15 .QUALITY OF LIFE FOR CANCER PATIENTS .
I know , I’m going over the deep end !

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@ernierogersquamus123 perhaps it's a good thing they are ignorant. HNCs are relatively rare, and I hope they continue to be. Unfortunately, since I went through it in 2006, the cases have more than doubled.

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Profile picture for William Olsen, Volunteer Mentor @hrhwilliam

@ernierogersquamus123 I think we all want to feel better quickly after cancer. Unfortunately, that usually doesn't happen. The treatments affect each patient uniquely and the remedies are also unique in that what works for one doesn't necessarily work for all or even one other.
In my case as in many other patients here on Connect, it takes years to get to a place where one feels "normal". And this isn't usually the old normal. It is often a new normal. It is hard to say that the point of normalcy is where we stop improving or where we just get used to our maladies. For example, here I sit twenty-six years out with a painfully sore gum, the result of having my mandible rebuilt, the result of the tissue continuing to grow around my prosthesis and being irritated until once per year I have the excess tissue ablated, which will happen next month. Very annoying but I learned to ignore this for the past five years, best I can.
I hope you start feeling better soon. The nausea you have might need to be seen by a gut doctor. It could be anything from a bile duct issue to a chemical imbalance to lack of good gut bacteria. Time seems to be the best healer unless there is something medically wrong that needs repair. Just because you had cancer doesn't mean you can't have another issue. Courage.

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@hrhwilliam This is a very good response. While each patient has similarities what makes us unique is the combination of the factors such as type of cancer, treatments, age - then and now, etc. Yet we can all learn from one another which makes this Connect so helpful. We are not alone. Twenty-three years ago I made the statement "Cancer didn't change me." Looking back, I'd say cancer and the treatment for it changed the directions I planned to go (several times); the activities I can and could do; how I get nourishment; my immune system; my sociability; BUT my persona hasn't changed nor will I let it. It's not easy but I'm not out here to beat cancer I'm here to live, laugh and love. As ever...

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Profile picture for omaest @omaest

@hrhwilliam This is a very good response. While each patient has similarities what makes us unique is the combination of the factors such as type of cancer, treatments, age - then and now, etc. Yet we can all learn from one another which makes this Connect so helpful. We are not alone. Twenty-three years ago I made the statement "Cancer didn't change me." Looking back, I'd say cancer and the treatment for it changed the directions I planned to go (several times); the activities I can and could do; how I get nourishment; my immune system; my sociability; BUT my persona hasn't changed nor will I let it. It's not easy but I'm not out here to beat cancer I'm here to live, laugh and love. As ever...

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@omaest Along the way, I have met few people who really personify the idea of living just one day at a time, such as you describe. It works for me, today is a good day, my stepson is here learning from the benefit of my mistakes, my tomatoes are delicious this year and I'm still madly in love with my wife after 32 years. What more
could I ask for?

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My PC doctor is my age, old, but still practicing three days per week. Internal medicine. I am his only head and neck cancer patient he has ever had. He has had patients with other cancers, not a lot, but a few over the years. He is sometimes perplexed by what is left of me, how I cope, how I am in such remarkable health otherwise, considering.
I hope he never has another head and neck cancer patient.
My dentist as well, he was amazed by the surgery I had to replace my necrosisitic mandible. I gave him surgery information and photos to study. He actually knows of one other patient who has had my issue and in the dental community in our area, he is the "go-to" guy for questions regarding osteoradionecrosis in the jaw, primarily because he enquired of me and I obliged.
We are the few. We have each other but we are otherwise alone. I feel it is up to us to insist on our post treatment care. We have to speak up and let our local medical people know that we realize they have no answer yet we need to figure these things out before the autopsy is performed.
Many of you in this group have at the very least given of your time and encouragement. That in itself is important, especially to the new members. As a mentor in this group I would like to say "Thank you."
Sorry I got off topic a bit. Courage.

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Profile picture for William Olsen, Volunteer Mentor @hrhwilliam

My PC doctor is my age, old, but still practicing three days per week. Internal medicine. I am his only head and neck cancer patient he has ever had. He has had patients with other cancers, not a lot, but a few over the years. He is sometimes perplexed by what is left of me, how I cope, how I am in such remarkable health otherwise, considering.
I hope he never has another head and neck cancer patient.
My dentist as well, he was amazed by the surgery I had to replace my necrosisitic mandible. I gave him surgery information and photos to study. He actually knows of one other patient who has had my issue and in the dental community in our area, he is the "go-to" guy for questions regarding osteoradionecrosis in the jaw, primarily because he enquired of me and I obliged.
We are the few. We have each other but we are otherwise alone. I feel it is up to us to insist on our post treatment care. We have to speak up and let our local medical people know that we realize they have no answer yet we need to figure these things out before the autopsy is performed.
Many of you in this group have at the very least given of your time and encouragement. That in itself is important, especially to the new members. As a mentor in this group I would like to say "Thank you."
Sorry I got off topic a bit. Courage.

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@hrhwilliam Don’t be sorry . A perfect post . Informative .

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