LOOKING for Survivors Facing the SAME effects

NAIVEin2000
NAIVEin2000 Member Posts: 5
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #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

  • pittsburghpete
    pittsburghpete Member Posts: 10
    #2
    I was 22 when I had radiation to the upper mantle, probably the same type as your partner. I declined the spleenectomy, but dont think it's relevant to his situation anyway. I started weight lifting late in life, off and on in my 40s and now more regularly in my 50s. I have done a fair amount of biking. I have not experienced any such wasting of muscle tissue. I have read a lot about long term effects of the type of radiation we had. There is some incidence of lung damage, called radiation pneumonitis, and, the biggee now appears to be build up of blockages in coronary arteries with active individuals who have no risk factors other than radiation. The coronary arteries were not shielded.

    However, I wonder if your partner's problem is due to some cause other than radiation. I have just not heard of any damage like that to the muscle tissue. However, if it is, I suspect the age difference at the point of radiation may be a link...at 17 your body is not as developed in some ways as it is at 22, one reason marathon runners tend to hit their peak in 20s and 30s, rather than as teens. Just a couple of stray thoughts. Good luck.
  • Gibber
    Gibber Member Posts: 2
    #3
    I suffered Hodgkin's Disease when I was 7 and then again when I was 10. At 41, I also am loosing muscle in my left lower leg. Currently in the last 2 years I have lost 2 inches from my calve muscle. They say this is due to radiation treatment to my spine. Hence, damage to the nerves prevents the muscles from being fed. I fortunately do not have any pain and find acupunture very helpful for the circulation and prevention of muscle twitching. I hope Michael is doing well, just wanted to send a quick note so you know you are not alone. You are the first person I have found with similar conditons to mine. If anyone else is loosing muscle due to thier treatment I am desperate to hear from them. I just want the wasting of muscle to stop.

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