Struggling with post radiation treatment side effects: Comfort care?

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

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Profile picture for ernierogersquamus123 @ernierogersquamus123

I have not tried plain formula . Red to ask my dietitian. No problem with bowel movements .

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@ernierogersquamus123 Awesome! this is what I use it's very gentle on my stomach, after trying 2 different formulas from the same company. I know my dietitian works with 3 different companies. Keep up updated. 😉 Have a happy, safe, bless day and weekend. 🙂

Best
Connie
Oregon

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Profile picture for cskippy @cskippy

@ernierogersquamus123 Awesome! this is what I use it's very gentle on my stomach, after trying 2 different formulas from the same company. I know my dietitian works with 3 different companies. Keep up updated. 😉 Have a happy, safe, bless day and weekend. 🙂

Best
Connie
Oregon

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@cskippy I am living on Glucerna now for at least 4 1/2 years through my peg tube. My soft palate hangs down lower from the surgery and I am producing mucous above my palate 24/7 which has to be hocked or snorted out so I don't choke on it..Not sure if the mucous is lymph fluids from the 33 lymph nodes taken out from the left side of my neck.

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I can not imagine ! What you have to endure . I just hope and pray that you are not in pain !

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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
I always appreciate your comments! Especially because you have been there and speak from lived experience. This is priceless for people going through cancer treatments. When you say "Courage" it is well-founded. Thank you!

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Profile picture for ernierogersquamus123 @ernierogersquamus123

Thanks for your feedback .
I’m beginning to to think that it is a sin to want to feel better .

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@ernierogersquamus123
Never ever feel that way !
The way you feel physically is real and very uncomfortable !
I blame the heath care system for not being proactive in helping patients with quality of life medicine, what ever that may be. They can list all the side effects but have know idea how devastating they are .
Americans spent 5 trillion dollars on health care last year .
I think they can afford to invest in quality of life protocol , training and needed medicine to help patients recover in reasonable comfort so they can heal .

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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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I would give your two points for your description of your journey. I am only 2.5 years into my journey and each day is what I focus on, trying to find as much joy as possible in the moment.
Cheers.

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Profile picture for gareee314 @gareee314

@cskippy I am living on Glucerna now for at least 4 1/2 years through my peg tube. My soft palate hangs down lower from the surgery and I am producing mucous above my palate 24/7 which has to be hocked or snorted out so I don't choke on it..Not sure if the mucous is lymph fluids from the 33 lymph nodes taken out from the left side of my neck.

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@gareee314 I will get this a try, I did try Boost but it was way to hard on my stomach. I didn't have surgery, but I did have the chemo, and radiation was 33 treatments. I have a lot of mucus and dry mouth, I eat so much crush ice and after that, I cough up the mucus. sometime I cough so hard that I can't catch my breath 🙁 Have a great, safe bless, weekend 😉

We're on our own journey, but yet we're on the same journey ✨

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I know exactly what you are going through and how you must feel . Perhaps flavored drinks / formulas are not the way to go .

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