LOOKING for Survivors Facing the SAME effects

NAIVEin2000

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

becca12056

Hi...I had hd 27 years ago at which time I had radiation. I haven't experienced anything like your partner but recently had my thyroid removed for exactly the same reason. I may be wrong, but I think I remember reading about hyperbaric treatments that may help some of the symptoms...although I don't really remember which ones. It might be worth it to check into it.
Becky

julielo

Hi- My name is Julie and I was treated for Hodgkin’s 20 years ago when I was 20 years old. I had no chemo, just lots and lots of radiation. Everyday for about 6 months to be exact. I too am experiencing a lot of problems due to the radiation. My oncologist told me way back then that in 15 years or so I would start experiencing weird things with my body that no one would be able to explain. It was then that he told me it would all be caused by the radiation damage. I too have had a hard time finding people that have gone thru the same types of things. I have heard that it’s because those of us who were treated for Hodgkin’s sometime between the late 70’s and early 90’s are, what I call test monkeys, and are either dead or have another cancer and all the focus is on that so they don’t relate any problems to the “old” radiation. Whew that was a mouth full. Anyways, I was treated from my nose to mid chest for 3 months, then chest to belly button the rest of the time. I did not have my spleen taken out nor did I have my tubes tied back. I have a very thin neck, as I’m sure your partner does. I’ve heard it is very common for Hodgkin’s survivors to have “pencil necks.” Sometimes my neck hurts so bad and gets so weak, it is literally hard to hold my head up. I have been on thyroid meds for about 15 years, but have not had that removed. I have a ton of skin cancers in my sight of treatment, been in menopause for about 5 years, (I’m 40 now) and have foot drop. The foot drop was interesting. A few years ago I started literally falling on my face. After MRI’s and what not, they told me that my L5 nerve was completely dead. It’s the nerve that makes your big toe lift up. I can stand on my toes, but not my heal. They said there was no kink or anything wrong with the nerve that they could see. The only thing they could tell me is that my left kidney is atrophied from the radiation and the nerve starts right behind that kidney. So they figured the nerve was also killed off. As I’m sure you guys have learned, it is so frustrating to go to the doctor for the aches and pains and have them not be able to tell you what’s wrong. You begin to feel like a hypochondriac., and get real tired of hearing “oh, it must be radiation damage.” It’s wonderful that we are still hear to help other cancer survivors get thru, but it’s sad that there are not enough doctors who have studied the late effects of radiation. Sorry for rambling on, but I hope this helps. Julie

blueyz53

Hi NAIVE - This is the first time I've come in contact with anyone else wondering about the long term effects of radiation treatments. Sure is good to hear from someone in a similar situation. I had cervical cancer 20 years ago, I had a radical hysterectomy and radiation. I have back pain often, as well as spasms, my doctor said I have degenerative disc disease but so do many people as we age. After the radiation my oncoligist said I may need back surgery in 10 years or so. It's been a gradual decline but getting to the point where I have more uncomfortable days than productive ones. I was also pretty active after the cancer, coaching soccer and building our house. Now I clear some land and I'm on the sofa for a few days before the pain eases up. I get fatigued and really have to push before I manage to make myself get up and out some days. I was on thyroid meds for a while but didn't think they made much of a difference. I figured that I was just lucky to be here as they told me I would probably only live 5 months at the time of my diagnosis. I really would like to know more about the effects of radiation and what can be done to improve quality of life under the circumstances. I don't have any research or info to contribute but it's nice to know somebody else is out there.

dimastbo

blueyz53 said:

Hi NAIVE - This is the first time I've come in contact with anyone else wondering about the long term effects of radiation treatments. Sure is good to hear from someone in a similar situation. I had cervical cancer 20 years ago, I had a radical hysterectomy and radiation. I have back pain often, as well as spasms, my doctor said I have degenerative disc disease but so do many people as we age. After the radiation my oncoligist said I may need back surgery in 10 years or so. It's been a gradual decline but getting to the point where I have more uncomfortable days than productive ones. I was also pretty active after the cancer, coaching soccer and building our house. Now I clear some land and I'm on the sofa for a few days before the pain eases up. I get fatigued and really have to push before I manage to make myself get up and out some days. I was on thyroid meds for a while but didn't think they made much of a difference. I figured that I was just lucky to be here as they told me I would probably only live 5 months at the time of my diagnosis. I really would like to know more about the effects of radiation and what can be done to improve quality of life under the circumstances. I don't have any research or info to contribute but it's nice to know somebody else is out there.

I am also looking for answers for long term side effects after radiation. My son had a brain tumor at 15, and I thought after 15 years we had nothing to more to worry about. We could deal with the eyesight changes and thirst and urine problems. Now, he's lost some hearing and feeling on the side where the radiation was given. He is constantly fatigued, gets sick easily, and doesn't look healthy. I'm also worried about the long term effects of his needing DDAVP daily.