hodgkin's disease childhood cancer survivors
Comments
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Long Term effectsfeather80 said:What kind of side effects do
What kind of side effects do you have?
Feather
I have had numerous health problem, recently they found something on my breast, haven't had a biopsy, I have constant muscle, joint, bone pain, I was dianoised with terminal IC, which is a very painful bladder diease. I having problems with my thyroid, I had to have a hysterectomy, the doc said my female organs were the worst he had ever seen. I have fatiuge, insomnia, rapid heatbeat, headaches and memory loss. I also have a valve in my heart that don't pump right. I have an appointment May 8 at Vanderbuilt Hospital survivorship clinic, I hope they can help my quality of life.0 -
35 Year Hodgkin's Disease SurvivorBrittaA said:Hodgkin's Disease Survivor!
Hi Jaye – I am a 17-year Hodgkin’s disease survivor and would love to connect. I recently started a blog, Cinco Vidas (http://blog.cincovidas.com), for cancer patients that deals with the side effects of chemotherapy and radiation as well as with improving your lifestyle and comfort while going through cancer. I was really compelled to start my site as I am a cancer survivor myself and could find little information on coping with cancer treatments. I would love to hear from you and any other patients, survivors and caregivers! Love, strength and survival, Britta.
I was diagnosed with Hodgkin's disease - Stage II - in 1974 (at the age of 10). I had my spleen removed pursuant to staging (clear). I was treated with high-dose radiation to my upper body with lead blocks placed over my lungs and brain. In 1991, I had my thyroid removed due to a pre-cancerous cyst. Three years ago, I was diagnosed with a heart murmur. Two weeks ago, I had a stress test and cardiac cath. and I am scheduled to have my aortic valve replaced with a mechanical valve and I be given a triple bypass. I lost several inches in height and have chronic muscle/nerve pain and connective tissue discomfort.
I have been married for twenty-three years, have three healthy children, and have worked full-time as a city manager and attorney in Illinois. During most of my career, I have taken few sick days, enjoy wilderness camping, consider myself in good health, take only ibuprofen for pain, and am happy to be alive.
Over the years, I have had to "educate" doctors about my health conditions, and risks. Only recently (last 10 years) have I been able to find relevant information about survivor issues, and I had no idea that my radiation would cause heart valve problems. I look forward to hearing from you concerning your survivorship. Sincerely, Bruce0 -
36 YEAR SURVIVOR HODGKINS DISEASE SEEING EFFECTSBonebrake said:35 Year Hodgkin's Disease Survivor
I was diagnosed with Hodgkin's disease - Stage II - in 1974 (at the age of 10). I had my spleen removed pursuant to staging (clear). I was treated with high-dose radiation to my upper body with lead blocks placed over my lungs and brain. In 1991, I had my thyroid removed due to a pre-cancerous cyst. Three years ago, I was diagnosed with a heart murmur. Two weeks ago, I had a stress test and cardiac cath. and I am scheduled to have my aortic valve replaced with a mechanical valve and I be given a triple bypass. I lost several inches in height and have chronic muscle/nerve pain and connective tissue discomfort.
I have been married for twenty-three years, have three healthy children, and have worked full-time as a city manager and attorney in Illinois. During most of my career, I have taken few sick days, enjoy wilderness camping, consider myself in good health, take only ibuprofen for pain, and am happy to be alive.
Over the years, I have had to "educate" doctors about my health conditions, and risks. Only recently (last 10 years) have I been able to find relevant information about survivor issues, and I had no idea that my radiation would cause heart valve problems. I look forward to hearing from you concerning your survivorship. Sincerely, Bruce
36 YEAR SURVIVOR HODGKINS DISEASE SEEING EFFECTS
In some ways it is wonderful to be able to see that there are others experiencing what I have been experiencing for some time now. I was treated for Stage 1 Hodgkins with cobalt radiation 36 years ago. With the exception of emotional effects from the disease I hadn't any secondary problems until 13 years ago when it was thought that I had thyroid cancer, which I did not but had a thyroidectomy due to the increased risk from radiation. Then 5 years ago I developed Stage 2 Breast Cancer. Treated with chemotherapy and am now cancer free. Each day, as I'm sure most of you know, is a blessing but we have to always live with the fear(which I TRY not do do) of a reoccurrence or new type of cancer. Every test we take turns out to be a rollercoaster ride of emotions because I think the doctors tend to be overly sensitive to the fact that we are cancer survivors. I have just recently learned that I too have not only mitral valve prolapse but aortic stenosis and leakage which is assumed to be from the radiation therapy. I have been told that I do not need valve replacement at this present time but we are watching things very carefully. I too have done my research for the possible future at the Cleveland Clinic. I read the other person's blog about Late Term Effects Clinics and I will have to look into my area (south Florida) to see if there is any such thing. Presently most of my doctors work independent of one another and that can be quite frustrating. I pray that all of us will continue to live a long and at best productive life. I have a 13 year old son that I intend to see grow into a fine "middle aged" man.0 -
Watchful Waitingctcreed said:Survivor, odd case
I was diagnosed at 2,in 1989, with nodular lymphocyte predominant hodgkins. I didn't receive radiation or chemo. The node was excised and that was it. I'm wondering if anyone else has similar circumstances?
ctcreed, My son is just a couple of years older than you are. He was born in 85 and you were born in 87. When he was a toddler, I noticed that he had perpetually enlarged lymph nodes and I always questioned the pediatricians, but they always dismissed it. 6 months ago, he was diagnosed with 2A NLP and the doctor says that he has only had it for about 5 years. The neck node was enlarged, but the PET scan did not reflect any activity there. The activity was in the area under his right armpit where a node was removed and an area under his left armpit that has an enlarged node. The doctors did not recommend removal of the second node because they said it could travel to another area since he had activity in opposite sides of his body. The doctor has advised us to just watch it without treating it with Chemotherapy, Radiation, Rituxin, Bexxar or whatever else is being used currently. I am anxiously waiting his second CT scan to see what it shows. The doctor said that the disease could go away and I am really hoping and praying for that miracle. I am so pleased for you (and I am hopeful for my son) that you have been cancer-free for 19 years. Thank you so much for posting your story. I wish you a long, healthy, prosperous and happy life.0 -
33 years out from HodgkinsBonebrake said:35 Year Hodgkin's Disease Survivor
I was diagnosed with Hodgkin's disease - Stage II - in 1974 (at the age of 10). I had my spleen removed pursuant to staging (clear). I was treated with high-dose radiation to my upper body with lead blocks placed over my lungs and brain. In 1991, I had my thyroid removed due to a pre-cancerous cyst. Three years ago, I was diagnosed with a heart murmur. Two weeks ago, I had a stress test and cardiac cath. and I am scheduled to have my aortic valve replaced with a mechanical valve and I be given a triple bypass. I lost several inches in height and have chronic muscle/nerve pain and connective tissue discomfort.
I have been married for twenty-three years, have three healthy children, and have worked full-time as a city manager and attorney in Illinois. During most of my career, I have taken few sick days, enjoy wilderness camping, consider myself in good health, take only ibuprofen for pain, and am happy to be alive.
Over the years, I have had to "educate" doctors about my health conditions, and risks. Only recently (last 10 years) have I been able to find relevant information about survivor issues, and I had no idea that my radiation would cause heart valve problems. I look forward to hearing from you concerning your survivorship. Sincerely, Bruce
I was diagnosed as having Hodgkins in 1977 stage III. (age 11) They removed my spleen and found that it was fully involved. I had radiation to my neck lower back and stomach area. I also had chemo. All treatments were done in 77-78. Was in perfect health from 78-2006.
Had my thyroid removed 2 years ago (I had nodules and was tired of all the fna's) no cancer was found. I also decided to get a PSA and a prostate check. Glad I did becasue they said there was evidence of early Prostate cancer. So given my age I decided to have it removed and have no problems since. Cancer was isolated to the protate and totally removed. Outside of the usual complaints i.e. neck muscle atrophy, maybe a slightly diminished lung capacity, and have to drink a ton of water when excercising, I have been healthy. I am not overweight and I play a lot tennis so I stay in reasonably good shape. I dont smoke and just drink socialbly.
They have me in the long term heart follow-up so I continue to go back to get that checked. Over the years I have not been really involved with the whole "cancer survivor thing". I go to my folow-ups they tell me everything is great and I fly home. I discovered this site and frankly it is scaring the the hell out of me..lol...my wife has directed me to turn off the computer. Probably good advice.0 -
Hogkins at age 13NAIVEin2000 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
I had Hodgkins at age 13. I went to UCLA for extensive radiation from my neck to my pelvis. I have also had my thyroid removed at age 30 from a lump that would have turned into cancer. I had a residule effect of breast cancer 2 years ago, a complete mastecomy because they could not radiate me a second time. I also struggle from muscle loss where I was radiated, especially my upper back, neck & shoulders. My heart & lungs also have effects. I take muscle relaxers and they don't do a whole lot. I also suffer from neuropothy, numbness in my right hand & feet. I went off work in 20006, due to residule effects of the radiation. It does do damage to our bodies, but it saves our lives. It is when we get older that we feel the late effects. I am now 51. Each day I wake up I make it a good one! We are not promised tomarrrow
Write back if u have more questions. 0 -
Hodgkins Side Effectsjoroja said:36 YEAR SURVIVOR HODGKINS DISEASE SEEING EFFECTS
36 YEAR SURVIVOR HODGKINS DISEASE SEEING EFFECTS
In some ways it is wonderful to be able to see that there are others experiencing what I have been experiencing for some time now. I was treated for Stage 1 Hodgkins with cobalt radiation 36 years ago. With the exception of emotional effects from the disease I hadn't any secondary problems until 13 years ago when it was thought that I had thyroid cancer, which I did not but had a thyroidectomy due to the increased risk from radiation. Then 5 years ago I developed Stage 2 Breast Cancer. Treated with chemotherapy and am now cancer free. Each day, as I'm sure most of you know, is a blessing but we have to always live with the fear(which I TRY not do do) of a reoccurrence or new type of cancer. Every test we take turns out to be a rollercoaster ride of emotions because I think the doctors tend to be overly sensitive to the fact that we are cancer survivors. I have just recently learned that I too have not only mitral valve prolapse but aortic stenosis and leakage which is assumed to be from the radiation therapy. I have been told that I do not need valve replacement at this present time but we are watching things very carefully. I too have done my research for the possible future at the Cleveland Clinic. I read the other person's blog about Late Term Effects Clinics and I will have to look into my area (south Florida) to see if there is any such thing. Presently most of my doctors work independent of one another and that can be quite frustrating. I pray that all of us will continue to live a long and at best productive life. I have a 13 year old son that I intend to see grow into a fine "middle aged" man.
Hello! I was diagnosed with Stage IV Hodgkin's disease when I was 14. I am now 38 years old. I have kept my chin high even though I have had several setbacks from past radiation and chemo. At age 36 (my son's 10th birthday) I was diagnosed with Stage II Breast Cancer. I had a double masectomy and when through chemo and radiation. A year later I was diagnosed with Stage I thyroid cancer. My doctor thinks it was all caused from my past radiation. So far I am doing fine and learn to cherish every day of my life. I do have joint trouble and was diagnosed with fibromyalgia when I was in my 20s. I believe a positive attitude is the key!0 -
Long Term effects of radiation from Hodgkins Disease at age 13.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.
I would love to discuss with you any related late effects you have from the treatments you had. Especially since we were diagnosed at the same age. I do have a lot of residule effects from the radiation. Give me an email back. I am new to this site, so I will try to get back to you soon! Take care!0 -
Long Term Survivor of HodgkinsNAIVEin2000 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
I was age 13 when I was diagnosed. Had radiation treatments at UCLA. Yes, I do have many residule effects from the radiation given to me as a child. I have some heart & lung problems, also fatige that I battle with daily. I also had a tumor in my thyroid at age 30. Removed the thyroid & thought it was cancer, but thank God it was not. I am 51 now. Had breast cancer as a late effect from the radiation 3 years ago. Had a double mastecomy. I do have muscle problems, as well as neuropothy in my hands & feet. I am also on muscle relaxers for spasms in my back & shoulders. My neck constantly aches, and I have had cordisone shot in it 3 times. Helped for a while, then came back. My neck and upper torso looks different do to loss of muscle also. I hope you find help to know their are others out here with simular late effects. Take care!0 -
heart problems here too!Dove1 said:Long Term Survivor of Hodgkins
I was age 13 when I was diagnosed. Had radiation treatments at UCLA. Yes, I do have many residule effects from the radiation given to me as a child. I have some heart & lung problems, also fatige that I battle with daily. I also had a tumor in my thyroid at age 30. Removed the thyroid & thought it was cancer, but thank God it was not. I am 51 now. Had breast cancer as a late effect from the radiation 3 years ago. Had a double mastecomy. I do have muscle problems, as well as neuropothy in my hands & feet. I am also on muscle relaxers for spasms in my back & shoulders. My neck constantly aches, and I have had cordisone shot in it 3 times. Helped for a while, then came back. My neck and upper torso looks different do to loss of muscle also. I hope you find help to know their are others out here with simular late effects. Take care!
I too have had heart and lung problems probably due to the mantle irradiation. I am out here as well and I think that we really need to educate physicians and the public as to the ongoing effects post hodgkins.0 -
Another LTS of HD hereNAIVEin2000 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
I don't know whether anyone who replied is still here...or even still alive; I know some of the dear folk who replied have since passed on.
So...yeah, cancer oldbie here, diagnosed pathologic stage II-A HD w/bulky mediastinal involvement August 1988, just after my fifteeth birthday. Those on the LTS list long-term may remember me from years ago. I was an early member but can no longer handle the mail volume, sadly.
Lots of late effects, including lung scarring, possible cardiac damage (no one seems quite able to ascertain this), immune system dysfunction (oh, thank you, splenectomy), peripheral neuropathy, hypothyroidism, etc.
One thing I might add...if any young, recently diagnosed pts are reading this, I would like to be clear on something. Yes, late effects are a total bear to deal with...that said, am I sorry I did treatment? NO. NO, NO, NEVER. I have done extensive historical research on Hodgkin's, and I know PRECISELY what it does without conventional therapies. Trust me, it "ain't" pretty. Toxic treatments? Oh, absolutely, but they bought me 22-23 good years and counting. Enough time for first kiss, high school/college/grad school and graduations, my dream trip to Broadway and NYC, first kiss, dream job, wedding and now-nearly-twelve years of marriage, my very own little doggie, the completion of my first full novel, etc. - so - yeah, TOTALLY worth it all. The whole mess has completely been worth it. So if you're reading this and thinking ACK I CANNOT DO THIS...think again and go do it. There's kind of this really high death rate otherwise, which kind of crimps a person's style....
I appreciate all the "senior" survivors who took time along the way to teach me. Thanks, wherever you all are. I wouldn't be as tough or smart without all of you.
Feel free to write, anybody. I may not guarantee a quick answer, kinda depends what's up at the time. For example, I'm about to go back to my current med center for some stuff, but I will definitely check in and reply as soon as I can, okay? Whether you're totally new to the journey or more of an old-schooler than I am, I'd enjoy hearing from you. Message me if you like, and I'll get back w/you soon's I can.
Long live the young Hodgkin's survivor crew!
-"Lucy"0 -
To Bonebrake...Bonebrake said:35 Year Hodgkin's Disease Survivor
I was diagnosed with Hodgkin's disease - Stage II - in 1974 (at the age of 10). I had my spleen removed pursuant to staging (clear). I was treated with high-dose radiation to my upper body with lead blocks placed over my lungs and brain. In 1991, I had my thyroid removed due to a pre-cancerous cyst. Three years ago, I was diagnosed with a heart murmur. Two weeks ago, I had a stress test and cardiac cath. and I am scheduled to have my aortic valve replaced with a mechanical valve and I be given a triple bypass. I lost several inches in height and have chronic muscle/nerve pain and connective tissue discomfort.
I have been married for twenty-three years, have three healthy children, and have worked full-time as a city manager and attorney in Illinois. During most of my career, I have taken few sick days, enjoy wilderness camping, consider myself in good health, take only ibuprofen for pain, and am happy to be alive.
Over the years, I have had to "educate" doctors about my health conditions, and risks. Only recently (last 10 years) have I been able to find relevant information about survivor issues, and I had no idea that my radiation would cause heart valve problems. I look forward to hearing from you concerning your survivorship. Sincerely, Bruce
Hodgkin's class of '74. I was 12 years old. Aortic stenosis is just starting to affect me. It's pretty inconvenient for both my gardening work and my recreation hiking the mountains. At this point my only prescription is to keep my heart rate down. Check again in six months. Before they start talking about surgery I'd like to be clear the chances for successful surgery. It seems to me that the radiation damage would make surgery difficult. So, Bruce, how did it go? I hope to hear you're back to the wilderness. Best wishes.0 -
17 yr /old survivor too!BrittaA said:Hodgkin's Disease Survivor!
Hi Jaye – I am a 17-year Hodgkin’s disease survivor and would love to connect. I recently started a blog, Cinco Vidas (http://blog.cincovidas.com), for cancer patients that deals with the side effects of chemotherapy and radiation as well as with improving your lifestyle and comfort while going through cancer. I was really compelled to start my site as I am a cancer survivor myself and could find little information on coping with cancer treatments. I would love to hear from you and any other patients, survivors and caregivers! Love, strength and survival, Britta.
Hey jaye, i am also a hodgkins survivor. i was diangnosed about 13 months ago and am now 8 months in remmision!!. I havent really talked to anyone about my experiecnes ive been keeping them inside me. But yea, i went through 4 months of intensive chemo followed by 14 days staright of radiation, that sucked. I havent really noticed much effects from the chemo, obviously they're there. My lungs are still good my heart is good. radiation on the otherhand.. my skin still feels like rubber and my neck feels realy weird still. there was a chance of thyroid problem developing but so far ive been lucky. Id love to hear back from you or anyone in a similar situation. im looking for friends online i can relate with and get stuff off my chest ive been wanting to tell people. Best of luck to you and everyone else on this site.
Best wishes
Ian0 -
hodgkins survivorEmilyAnn said:18 with hodgkin
hey,
im 18 and i was diagnosed with hodgkin 3 months ago when i was 17. if u have any advice or anything i would like some.
emilyann
definetly stay postive, hodgkins lymphoma has over a 90% cure rate, thats including older people with health problems already. your young and healthy and WILL overcome this. I had hodgkins when i was 16 and am now 8 months in remmision. Id definetly say try not to think about getting sick, and if you do, think of this. People drink till they throw up, if you have to get a little sick and throw up so be it, its saving your life. people drink and get horribly sick just for the fun of it. keep fighting this and you will overcome.
Best wishes,
Ian0 -
20 years this July 4thmarshje3 said:25 years Hodgkins Free
Hi Jaye and all,
I am celebrating my 25th year Hodgkins free, treated in 1986 at the age of 11. I would love to chat with anyone else about life after hodgkins.
email me at jenniolson@yahoo.com
I started getting symptoms in 1989, diagnosed in 1990 at 16. After chemo and rad. and a relapse more chemo and finally a bone marrow transplant, I've been 20 years free. Still looking for an identity outside of being a survivor of a bmt. I'll sell my story for 10 million dollars lol.0 -
Muscle wasting after childhood hodgkins treatmentsNAIVEin2000 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
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).0
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