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Survived more than 30 years

butterflyangel201
Posts: 4
Joined: May 2019

My sister has been a  hystiocytic large cell non hodgekins lymphona survivor for 35 years. I am searching for a research group that has some answers to the effects of the radiaton. She has had over 6000 rads of radiation and it is taking it's toll on her. Need to find a doctor to help her out of the constant pain she is in WITHOUT STEROIDS!!!

Thank you in advance for any response and help.

ShadyGuy's picture
ShadyGuy
Posts: 397
Joined: Jan 2017

Unfortunately radiation damage is usually not repairable. Steroids may ease the pain. Hyperbaric oxygen therapy for radiation damage is used in some cases. Treating the symptoms appears to be all one can do. I am not a doctor but have some in my family and they agree. Of course you should take your sis to a doctor who specializes in radiation damage. This would not generally be an oncologist.

yesyes2
Posts: 584
Joined: Jul 2009

Hi Butterflyangel201,

There are some specialized doctors (group of), who specialize in late effects from cancer treatment.  Most are located in major medical centers, usually university settings.

I received radiation for breast cancer in 1992/1993 to both the breast and axillary area.  I'm thankful that I'm still here but the radiation results were not knid to me.  I was left to live with a small, hard, deformed breast which causes constant pain and intermittent uncontrolable itching.  The breast tissue can not be touched, slept on, at times it's enough to drive me crazy.  The tissue has been permanently altered.  And other than amputation there is not a remedy. 

I really get what your sister is going through.  And I hope there is a solution to her pain other then steroids or pain meds.

Shady, do you have any additional information on Hyperberic Oxygen therapy.

ShadyGuy's picture
ShadyGuy
Posts: 397
Joined: Jan 2017

As far as facts I know nothing more about hyperbaric therapy than what you could find out using a search engine. I became aware of it when an associate at work received it at Mayo clinic after extensive radiation for cancer. Perhaps the Mayo site?

yesyes2
Posts: 584
Joined: Jul 2009

Thanks Shady, I'll check out the Mayo Clinic site.   I know it is also used for occular occlusions but without good results.

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