hodgkin's disease childhood cancer survivors

NAIVEin2000 said:

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 Mike: ca.rundude@gte.net
Email me: NAIVEin2000@hotmail.com

NAIVEin2000 said:

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 Mike: ca.rundude@gte.net
Email me: NAIVEin2000@hotmail.com

dubois said:

Ditto on all
Karla with a K,

Hodgkins class of '74. I was 12 years old. Ditto on the wasted chest and back, skinny neck. Jaw also did not fill out but fixed that with a dermal fat graft at age 20. Your description of fused muscles sounds like what my docs refer to as scar tissue, the reason for my aortic stenosis and hardening arteries. Also the reason I didn't qualify for open heart surgery to replace the valve. The good news is that the University of Washington Medical Center is at the forefront in performing Transcatheter Aortic Valve Implantations. Had my surgery August 21. Was out of the hospital on the 24th. Maybe it's just due to my history, but I had no pain meds during recovery. 4 1/2 weeks later I did back-to-back 4 1/2 mile hikes in the mountains.
As far as your questions:
1. At some point the complications of the side effects begin accelerating. Nothing to be done but fix 'em as they come.
2. Live healthy, or as Lance says, Live Strong. You cannot reverse the effects, but you can minimize the impacts by eating well and keeping on the move. Broke my neck in '04 (Doc surmised the bones may have been weakened by the radiation. Oh, and the anterior fusion took two hours longer than usual because of the scar tissue they had to go through.) but I'm still making my living as a gardener. I like to say "I'm strong as a mule, or maybe just as stubborn as one."
3. I haven't uncovered anyone studying this condition, but my docs are well aware of what it's all about.

Walk softly, breathe, smile. Hope we kan karry on this konversation.

Hi!  I have just recently startedon this site and it was nice to read of someone else going through the exact same thing that I am right now! I had radiation thereapy for HD in 1983 and I am suppose to be having surgery to replace my aortic valve with a mechanical one and replacement of 2 arteries.  Did you have this done?  They aren't giving me great odd of "getting off the table".  Any insights you can tell me would be greatly appreciated.  Thank you!

dubois said:

Insights

I had my aortic valve replaced last August by catheter, like an angioplasty. Earlier they did an angiogram to determine that my arteries were sufficiently clear to allow for that procedure. Transcatheter was my only option, as they didn't think my sternum- because of the radiation treatment- would knit together again after open heart surgery. I had a team of doctors at the University of Washington Medical Center in Seattle. The first two I met with gave me all the bad news of complications and risks, perhaps leaving me feeling like I wouldn't get off the table. But the third doctor was older and more experienced and he declared there was better than a three in four chance that I'd come through just fine. "I'm going with that!" I said. And my procedure was a miracle. It's been hard to get my old strength back since then, but my pumper's working like a champ. I have energy!

So, Nella, maybe you just haven't yet found the person who will give you the good news, that odds are best everything will go just fine. 

I was diagnosed at 18, considered an adult, but to me I was just a child. I finished treat when I was 19. It's so nice to see sooooo many people out there. I work on an oncology unit and unfortunately see the bad side of hodgkins so it's so wonderful to see all the people out there that have made it and are thriving. I am wondering if anyelse has had long term effects of anxiety, depression and worry over whether it will come back or if something new will pop up. Are these normal. I feel like it's been 7 years and I should be over this by now but I can't. Anyone else feel the same? I have two close friends that are survivors as well, one had ALL and one had B cell NHL but hodgkins is associated with some of the highest rates of secondary cancers so  I seem to worry a little more than them. Maybe it's just me?

dubois said:

Ditto on all
Karla with a K,

Hodgkins class of '74. I was 12 years old. Ditto on the wasted chest and back, skinny neck. Jaw also did not fill out but fixed that with a dermal fat graft at age 20. Your description of fused muscles sounds like what my docs refer to as scar tissue, the reason for my aortic stenosis and hardening arteries. Also the reason I didn't qualify for open heart surgery to replace the valve. The good news is that the University of Washington Medical Center is at the forefront in performing Transcatheter Aortic Valve Implantations. Had my surgery August 21. Was out of the hospital on the 24th. Maybe it's just due to my history, but I had no pain meds during recovery. 4 1/2 weeks later I did back-to-back 4 1/2 mile hikes in the mountains.
As far as your questions:
1. At some point the complications of the side effects begin accelerating. Nothing to be done but fix 'em as they come.
2. Live healthy, or as Lance says, Live Strong. You cannot reverse the effects, but you can minimize the impacts by eating well and keeping on the move. Broke my neck in '04 (Doc surmised the bones may have been weakened by the radiation. Oh, and the anterior fusion took two hours longer than usual because of the scar tissue they had to go through.) but I'm still making my living as a gardener. I like to say "I'm strong as a mule, or maybe just as stubborn as one."
3. I haven't uncovered anyone studying this condition, but my docs are well aware of what it's all about.

Walk softly, breathe, smile. Hope we kan karry on this konversation.

Like so many, diagnosed in 1974 at the age of 14, splenectomy, stage one.  Heavily dosed with mantle radiation.  Breast cancer and double mastectomy a few years ago.  Some basal cell cancers in radiated areas.  Thyroid supplements.  I'm now 56.  

Later, my head and neck, pain, fatigue and neurological issues were complicated by chronic Lyme Disease, which has continued for almost 25 years.  Since then, I have only been able to work part time.  

The atrophy is debilitating, and I struggle to maintain my posture to reduce the pain.  I have all kinds of nerve-related issues in the head, neck and upper body, and what feels like reduced lung capcity (confirmed to some extent by testing).  Thoracic outlet syndrome (affecting nerves in my arms and wrist).  Both shoulders curve forward, with my right one seriously curved to the point where its difficult to straighten it out.  

I have been trying without success to work on building back a bit of muscle in my shoulders and neck.  My question to others is; can this help?  I have been trying to be careful, both with weights, such as shrugs, and yoga-type exercises, such as the plank pose.  So far, not much in the way of results but I admit to maintaining less than a perfect regime.  

On the positive side, I took up the piano about 5 years ago, have made a lot of progress, and am able to pound out a lot more music than I ever expected.  

Reading through these posts, I dont have the sense that others have been successful in trying to rebuild muscles atrophied from radiation, or general physical strength.  If any others have tried to improve strength, either cardiovascularly or with muscle training, can you report on your progress?

And for those who have had aortic valve replacement, what were your symptoms? 

bgdbgd said:

me too

Like so many, diagnosed in 1974 at the age of 14, splenectomy, stage one.  Heavily dosed with mantle radiation.  Breast cancer and double mastectomy a few years ago.  Some basal cell cancers in radiated areas.  Thyroid supplements.  I'm now 56.  

Later, my head and neck, pain, fatigue and neurological issues were complicated by chronic Lyme Disease, which has continued for almost 25 years.  Since then, I have only been able to work part time.  

The atrophy is debilitating, and I struggle to maintain my posture to reduce the pain.  I have all kinds of nerve-related issues in the head, neck and upper body, and what feels like reduced lung capcity (confirmed to some extent by testing).  Thoracic outlet syndrome (affecting nerves in my arms and wrist).  Both shoulders curve forward, with my right one seriously curved to the point where its difficult to straighten it out.  

I have been trying without success to work on building back a bit of muscle in my shoulders and neck.  My question to others is; can this help?  I have been trying to be careful, both with weights, such as shrugs, and yoga-type exercises, such as the plank pose.  So far, not much in the way of results but I admit to maintaining less than a perfect regime.  

On the positive side, I took up the piano about 5 years ago, have made a lot of progress, and am able to pound out a lot more music than I ever expected.  

Reading through these posts, I dont have the sense that others have been successful in trying to rebuild muscles atrophied from radiation, or general physical strength.  If any others have tried to improve strength, either cardiovascularly or with muscle training, can you report on your progress?

And for those who have had aortic valve replacement, what were your symptoms? 

Hodgkins '74. See other posts for my history.

I think to move is to live and that we need to strengthen what we have to compensate for what's missing. And keep on stretching. I'd fold up like a pretzel if I didn't do regular stretching exercises. I'm fascinated that you can sit at a piano and hold up your arms to play. You must maintain good posture there, like the friend in Wyoming whose back is wrecked from his years as a trucker but who can still sit a horse all day.

The main symptom of my aortic stenosis, prior to my valve replacement, was a general lack of energy.The heart isn't able to pump out enough freshly oxygenated blood. As it worsens, overexert and you can pass out. They say all these side effects start accelerating in middle age, but I may have always been experiencing some stenosis. I read one account that with aortic stenosis, while everyone else is running at 100%, you're going about 90-95%. I worked several seasons for the Forest Service in the western mountains, and that's how it was, just couldn't quite keep up when we hit a grade. 

Ditto also on lungs and basal cells. When I went down with pneumonia and heart failure in 2012, there was some talk about the radiation's "scatter." Even though my lungs were covered with lead ingots during my radiation treatments, scatter probably burned the edges of them. And annual basal cell excisions, begun in 1987, are as routine as a haircut. 10-15 at a time now, which my dermatologist sees as improvement. 

And a final word about strength. After that summer I went down and subsequently had the valve replacement, I quickly regained the 25 pounds I lost, but I still haven't regained my muscle tone. I've always made my living at some form of physical labor, the last 14 years as a gardener, but I'm giving it up this summer. Perhaps a lighter workload will allow me to work on my strength in a gym. I hate to think this marshmallow body is my new normal, but then I remind myself that I'm 51 only in calendar years. Physically we're at an advanced age. 

No complaints, though. A healthy attitude is the ultimate way to compensate.

I was diagnosed in 1983 with stage three hodgekins disease at age nine. I was treated with MOPP chemo and radiation. I had a fundiplication surgery to close esophagus valve due to radiation damage in 2000. Was diagnosed with thyroid cancer in 2011 And had a thyroidectomy. Recently, I have started to suffer from nerve pain in my hip.