hodgkin's disease childhood cancer survivors

mmmaryl

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

Muscle wasting after childhood hodgkins treatments
Hi, I too have muscle wasting after Hodgkin's treatments in my neck and shoulders. I cannot work (I used to have a very good career as a scientist) but have been doing excercises including riding my bicycle to try to improve the muscle tone, although the doctor says that I have hardly any muscle where I got radiated with upper mantle radiation at the age of 16 in 1981. Anyone else with muscle wasting issues, and if so, have they had any success building tone back up? I have seen a slight improvement with the exercise. However, I have had this problem for the past 20 years (the muscle wasting problem), although it has really accelerated in the past 5 years. I have always done physical activity to try to counteract it, including lots of sports including running in my 20's. (The reason I am now doing biking is that it seems to work my back and shoulders as well).

barnsleybomber

Neja said:

I was diagnosed at age 13 with Hodgkin's. I am now 43. I would love to chat with you more about long-term effects of treatment. I am having numerous health issues that I suspect may be related.

health issues
Hi, i had hodgkins at 11 im now 36, are you able to discuss your issues as i would like to discuss mine with someone who had similar experiences. my email address is dr_scott08@hotmail.com

Regards
Darren Scott

KStar19

Survivor
Hi Jaye

I am a survivor of HD. I was diagnosed Dec 2002 and I was 18 years old at the time I am now 27. I was stage 2B. I went through chemo and radiation until June 2003 when I was considered in remission. The chemo I had was ABVD. I didn't mind chemo I didn't get very sick except for the first chemo and my last one those ones really kicked my butt. Radiation was by far the worst I hated it. The burns were bad it burn me from the inside out. I couldn't eat cause I had radiation to my throat. The one thing that upset me and I didn't even realize was you can lose your hair with radiation. I kept some of my hair through chemo I think cause I have very thick hair. But then lost it where the radiation was. Did anyone else have radiation? What was your experience?

If you would like to write to me that would be great I would like to talk with someone that has gone through the same thing I have. Or if anyone else would like share stories and just talk about living after cancer, that would be awesome. My email is ogirl84@gmail.com

Kim

KStar19

Survivor86 said:

23 yr. Hodgkin's Survivor-experiencing long term effects
I'm looking for people like me that might be experiencing the long term effects of chemotheraphy and radiation, If there is any follow up programs for the uninsured. I have recently filed fo disability.

Thanks,
Survivor86

Hello
Hey Survivor86

I was diagnosed when I was 18 stage 2B I'm now 27. I had chemo and radiation as well and am experiencing some of the long term effects I was on disability for a while but then got kicked out long story. From a knee surgery that wouldnt heal they think from the cancer stuff. I would like to talk with you it seems like we have similar stories. If you want to email me its ogirl84@gmail.com KStar19

joemetz

Non-Hodgkins
greetings

I was 25 years old, in 1989 and was dx'd with non-hodgkins lymphoma.
they did LOTs of radiation and were able to eliminate the cancer

23 years later, a large tumor in my colon that traveled 4cm to my liver and formed 30 tumors in the liver. And... the large tumor in my colon was caused by Radiation Therepy.

crazy!!!

not sure i can help... but if i can, just shout out.

thanks

CullensMama

Hi Jaye
I was diagnosed when I was 14 and I am a survivor since 1990.


Amanda

KarlawithaK

LT survivor of mantle radiation, 1977
Jaye,

I was diagnosed with Hodgkin's in 1976 at age 16 and was then (over)treated with mantle radiation in huge amounts. I understand that by 1980 these doses were greatly reduced. I have been astoundingly healthy for 35 years. However, there are some odd things about my body. Nothing I can do at the gym could ever build muscle in m chest or back. Also, I have the skinniest neck in history. Five years ago, a heart valve stenosis was detected and this year, a lump in my breast. Last week when I had a bilateral mastectomy with spacers for reconsruction, the surgeons had a very hard time because of distorted tissue planes. In other words, muscles were fused together.

I would like to talk with other long term survivors to know:
1. Are these changes increasing or decreasing over time?
2. What can we do to minimize or reverse the effects of radiation?
3. Is anybody really collecting significant data, as there are so few of us alive today who had this treatment?

My doctors are young and did their homework. They are talented. Still, they wre met with a surprise in the OR.

Love to hear from others.

Karla

Phoenix10

KarlawithaK said:

LT survivor of mantle radiation, 1977
Jaye,

I was diagnosed with Hodgkin's in 1976 at age 16 and was then (over)treated with mantle radiation in huge amounts. I understand that by 1980 these doses were greatly reduced. I have been astoundingly healthy for 35 years. However, there are some odd things about my body. Nothing I can do at the gym could ever build muscle in m chest or back. Also, I have the skinniest neck in history. Five years ago, a heart valve stenosis was detected and this year, a lump in my breast. Last week when I had a bilateral mastectomy with spacers for reconsruction, the surgeons had a very hard time because of distorted tissue planes. In other words, muscles were fused together.

I would like to talk with other long term survivors to know:
1. Are these changes increasing or decreasing over time?
2. What can we do to minimize or reverse the effects of radiation?
3. Is anybody really collecting significant data, as there are so few of us alive today who had this treatment?

My doctors are young and did their homework. They are talented. Still, they wre met with a surprise in the OR.

Love to hear from others.

Karla

Side effects are manageable
Hi Karla,

I had mantle radiation in 1993 for HD. There is a risk for breast cancer but that seems to be the major issue since they reduced the treatment. You're right...I have a friend who fought HD back in the 80s and the treatment was much harsher then.

I know of a study that was done in the early 2000s that asked how cancer survivors were coping. I participated and a majority of the participants stated that they had side effects but that they were manageable in regards to the quality of life.

Wishing you the best!

Bob_Falfa

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

interesting
i was MCHD stage3 {spleen} back in 1977 @20 years young, at Mayo clinic in Rochester minnesota. took my spleen and a piece of bone from each hip, then had me down for both chemo and rad. but that's when we found out i just did not take radiation well at all so they had to cut the dose in half most all the time so i could handle it, which worked but ended up taking 64 radiation treatments, and with that amount the docs thought i was good to go and if i needed chemo then we would do it, well 35 years later were still pretty good to go...but this "muscle wasting" has me thinking, my neck has been sore every morning for 2-3 years {that's where we found my HD]taken pics and found nothing so this is interesting,heart doc says mine looks good for have that much radiation,lungs are showing no signs of radiation issues which are things we must watch for and just lately my upper back has been sore just like my neck. so i hope my luck with all the rads is going to hold up this muscle wasting thing just might be starting so going to do some checking and let ya all know and R.I.P. Dr. Murray N Silverstein he was at Mayo Clinic in the mid 70's the man was a great human being and Dr.John Earl was my Rad. guy both back then were top notch and always thank them and all who helps up at the Mayo

dubois

KarlawithaK said:

LT survivor of mantle radiation, 1977
Jaye,

I was diagnosed with Hodgkin's in 1976 at age 16 and was then (over)treated with mantle radiation in huge amounts. I understand that by 1980 these doses were greatly reduced. I have been astoundingly healthy for 35 years. However, there are some odd things about my body. Nothing I can do at the gym could ever build muscle in m chest or back. Also, I have the skinniest neck in history. Five years ago, a heart valve stenosis was detected and this year, a lump in my breast. Last week when I had a bilateral mastectomy with spacers for reconsruction, the surgeons had a very hard time because of distorted tissue planes. In other words, muscles were fused together.

I would like to talk with other long term survivors to know:
1. Are these changes increasing or decreasing over time?
2. What can we do to minimize or reverse the effects of radiation?
3. Is anybody really collecting significant data, as there are so few of us alive today who had this treatment?

My doctors are young and did their homework. They are talented. Still, they wre met with a surprise in the OR.

Love to hear from others.

Karla

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.

Nella45

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

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

Nella45 said:

Hi!  I have just recently

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!

 

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. 

donna87

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. 

anyone still have anxiety?

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

donna87 said:

anyone still have anxiety?

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?

36 years and counting!

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

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.

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? 

111xsurvivor

32 year Survivor of HD, 28 for Schwannoma, and 19 for Thyroid

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

dubois

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? 

and me

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.

RebekahA

KarlawithaK said:

LT survivor of mantle radiation, 1977
Jaye,

I was diagnosed with Hodgkin's in 1976 at age 16 and was then (over)treated with mantle radiation in huge amounts. I understand that by 1980 these doses were greatly reduced. I have been astoundingly healthy for 35 years. However, there are some odd things about my body. Nothing I can do at the gym could ever build muscle in m chest or back. Also, I have the skinniest neck in history. Five years ago, a heart valve stenosis was detected and this year, a lump in my breast. Last week when I had a bilateral mastectomy with spacers for reconsruction, the surgeons had a very hard time because of distorted tissue planes. In other words, muscles were fused together.

I would like to talk with other long term survivors to know:
1. Are these changes increasing or decreasing over time?
2. What can we do to minimize or reverse the effects of radiation?
3. Is anybody really collecting significant data, as there are so few of us alive today who had this treatment?

My doctors are young and did their homework. They are talented. Still, they wre met with a surprise in the OR.

Love to hear from others.

Karla

LT Survivor of Mantle Radiation with Severe LT Effects

I am new here and wondered if this thread is still active and how you are doing?

I would like to see if what I am going through is similar to you (severe heart/lung issues)

brmiller

31 year survivor

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.  

dubois

RebekahA said:

LT Survivor of Mantle Radiation with Severe LT Effects

I am new here and wondered if this thread is still active and how you are doing?

I would like to see if what I am going through is similar to you (severe heart/lung issues)

Active

Active, but I've been checking in here only once or twice a year. Soon after my post in February of this year I had a treadmill stress test. Passed with flying colors. My only prescription is a once-a-day baby aspirin; I do not have to list congestive heart failure on my medical history; and I don't have to see my cardiologist again until I develop more/new symptoms. Maybe this is just an indication of my cast iron constitution. Or you could take it as an indication of the amazing advancements in treatment and high quality of care available today.