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hodgkin's disease childhood cancer survivors

Jaye
Posts: 4
Joined: Apr 2003

Dear all,

I wonder if there are any childhood cancer survivors of hodgkins disease. I would like to write to you, as I am a survivor myself, and am new to this.

Thanks
Jaye

Nella45
Posts: 1
Joined: Feb 2013

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
Posts: 4
Joined: Jun 2011

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. 

donna87
Posts: 9
Joined: Nov 2011

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?

jererp
Posts: 1
Joined: Aug 2013

I must be one of the older ones to post here.  I had Hodgkins at age 24, in 1976.  Stage I-A.  I had an exploratory surgery/spleenectomy to diagose the stage. (no MRI or CT back then. I had just gotten my engineering degree the year before using a slide rule, for some perspective on how far things have progressed.)  Anyway, Things were pretty normal for me the first 25 years following treatment. After that, things started to happen.  Thyroid, heart by-pass surgery in 2004, (nobody seemed concerned about splitting my sternum, as mentioned in serveral other posts), endocrine system is all screwed up.  High prolactin levels,(meds seem to be controlling that), high liver enzyme levels, ( still trying to figure out how to bring this down to normal levels). I also have a very noisy carotid artery....vascular guys can't explain...minimal plac buildup.  I gave them my theory of scar tissue from radiation, but no confirmation on that.

Took an early retirement in 2009. Thankful all that time that I did not have a physically demanding job, but even with that, it got to the point I could not do all that was being asked of me. 

Just want to assure those out there that life is good post treatment.  I don't regret any of it.....even all the long term problems....just now wondering about longevity. 

bgdbgd
Posts: 3
Joined: Nov 2009

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? 

dubois
Posts: 4
Joined: Jun 2011

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.

111xsurvivor
Posts: 1
Joined: Jan 2014

I'm a 3 time cancer survivor since age 14. I was diagnosed with HD, 3-4 th stage. I had my seen taken out and the lump in my neck. I went through chemotherapy, and radiation, lost my hair and was told Id never have children. Well anorber Muracle, I had a baby boy at the age if 26 when I was diagnosed with a third cancer. I had it in my system appareny when I was pregnant, and the Dr. S noticed my lump when I was about to leave the hospital with my newborn. 5 weeks later I went back to the hospital to have surgery, and they found my thyroid was full of cancer. No treatment needed just on synthroid for life.im. 46 years old, my son will be turning 20 in March, and I am do proud to be a Survivor. If you ever need to talk , please contact me.

 

Crystal

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