LOOKING for Survivors Facing the SAME effects

NAIVEin2000
NAIVEin2000 Member Posts: 5
edited March 2014 in Emotional Support #1
My domestic partner (Michael) is a 45 year old man whom suffered from Hodgkin's Decease when he was 17 years old. He underwent removal of his spleen and received radiation treatments and lived a cancer free life and was very active even managed to complete 21 marathons, and was a coach/trainer with The Leukemia & Lymphoma Society's - Team In Training(TNT).

Around 1990 Michael began experiencing pain in his upper back-T6 area. The doctors were able to help with the pain by giving him anti-inflammatory

and muscle relaxers, and was told his muscle was "wasting", he was NEVER told why he was losing muscle. No further action was taken by the doctors or Michael at that time. By 1999 Michael was feeling run down/extremely fatigued had more days he was not able to attend work due to fatigue. Muscle loss was very noticeable especially were he was radiated (upper torso and back of neck/nape of head). By 2000 his doctor stated he had lost over 90% of his muscle and continues to lose. He is no longer able to work or be as active as he once was.

His quality of physical life is not what he once had this is due to extreme pain and fatigue.

Spiritually he has and continues to grow -- he is my and the kids hero. He has gone through many tests at UCLA/USC and nothing can be done. He has been called a medical wonder.

We are trying to find others that suffers this condition, or some research that has been done on the long term effects of radiation as treatment of cancer. There must be more kids that are now adults and have complications due to treatments received for their childhood cancers. Michael never got any secondary cancers BUT his thyroid was removed in 2000

(at UCLA) due to several nodules that could have turned cancerous.

Please let me know if you/anyone has any leads on others that suffer the painful slow death of this horrific condition directly due to treatment or of any studies past/present. Please feel free to pass my information along. Just been able to talk to others that are going through this will relieve a lot of stress and we will not feel so alone.

I have sent many emails, made many calls to support groups/organizations to date NO ONE has any leads on survivors going through the same thing or studies current/past.

Email me: NAIVEin2000@hotmail.com

Comments

  • funnygurl
    funnygurl Member Posts: 16
    #2
    my mom had extensive radiation 25 years ago for breast cancer. It re-curred about 10 years later and because of the tissue damage the "new" biopsy would not heal. Eventually they removed her breast but the surgeon was concerned they would not be able to find enough viable tissue to close the wound after surgery. Radiation used to be very high doses over a much bigger area and the effects are scarey. She since has been given radiation for a secondary tumour in the uterus (1990). It may have re-curred (she is being tested as we speak). Due to radiation damage she cannot be given a physical exam and ultrasound was the only option. Her Dr. says surgery also is out of the question because of the readiation damage from the previous treatment.

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