LOOKING for Survivors Facing the SAME effects

NAIVEin2000 Member Posts: 5
edited March 2014 in Childhood Cancers #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: [email protected]


  • SwimCoop
    SwimCoop Member Posts: 17
    hi NAIVE

    I went though something similar to what Michal is going though. I was dx with Luekemia when I was 8 yrs old I am now 16. When I was 13 I started having major pains in my right knee. Two weeks after the pain started my entire leg was parlazed.It took almost 3 years before I could move it again and I still have problems with pain in that knee. like Michael the doctors still haven't figured out what caused it. I was put on pain killers and anti-inflammatory meds. So I kinda know how he feels.
  • taylorkid
    taylorkid Member Posts: 1
    My prayers are with you. This is my first time on the site and wanted to test replying to a letter. I will comment once I see how this works.
    Take care
  • swn1123
    swn1123 Member Posts: 3
    I am a 46 year old who was treated for Ewing's Sarcoma at the age of 15 in 1973. I was left with neuropathy and atrophy of my right foot and calf due to the effects of chemo and radiation. 15 years after my radiation my femur shattered at the radiation site and I have had several orthopaedic surgeries to repair the bone and contend with other falls and fractures. I have "lost" 2 inches of height in my right leg since that time, 30 years ago. I am sure I will continue to deal with problems arising from my treatment. I also was diagnosed with breast cancer in 2000. I am a member of a Long-Term Cancer Survivor's study conducted by the University of Minnesota. An internet search for Long-Term Cancer Survivor's Study will get you to their website. They publish newsletters with information for survivor's and might be able to help.