Hodgkins disease survivor

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crayson

I was diagnosed with Stage
I was diagnosed with Stage III with B symptoms and I have had ear loss in my left ear. Mild, but enough to be annoying. It seems the doctors just kind of turn off listening when I have complaints. I only had this in March 2007.

midwest-mom

crayson said:

I was diagnosed with Stage
I was diagnosed with Stage III with B symptoms and I have had ear loss in my left ear. Mild, but enough to be annoying. It seems the doctors just kind of turn off listening when I have complaints. I only had this in March 2007.

doctors not listening
crayson,

I was diagnosed with stage 4 in June of 2007, I have been in remission for 15 months now! I also find that the doctors don't always take my complaints seriously and find that they just tell me that I should be happy to be alive. I am and I don't want to be sick anymore either. my best advice is to keep talking to the doctors, I told my doctor that he works for me, My payments provide his life style....So when I say I feel a lump or I have some lymphadema in my arm he checks it out because I am taking controll of my medical care. Be pro-active and do your homework before you talk to them.
Good Luck

rcourville

hodgkins survivor
i have been in remission for 9yrs. In 1996, i had radiation therapy to my chest which destroyed my thyroid. I also had chemo (ABVD), i relapsed and had a ABMT in 2000. No problems since

HD_Mickey

rcourville said:

hodgkins survivor
i have been in remission for 9yrs. In 1996, i had radiation therapy to my chest which destroyed my thyroid. I also had chemo (ABVD), i relapsed and had a ABMT in 2000. No problems since

Hodgkins Survivor
I am from Hamburg (Germany) and have been in remission for 25 years. In 1983, aged nineteen I have got diagnosis Hodgkins Disease and radiation therapy (44 Gy) to extended-field (axilla, mediastinum and neck). Five years later the Doc said to my, that I am healed and I would not need any follow-up care anymore.

Now the first late effects appear: hypothyroidism, small changes at heart, fast pulse (90-100). In the last two years I put on weight a lot (20 kilos, maybe a accessory symptom of hypothyroidism) and I am not so fit as before (dyspneic, early exhausting). Now I try to get follow-up care and a treatment at a health resort to reduce my weight - but I do not find a doctor, who supports my in my willing. Furthermore I would like to check up my lungs, breast etc. But I do not find a Doc, who supports my. They do not see the reason why, because here are no specialists of late effects, nobody knows who to deal with long-term survivors. That is the reason why I am looking for more informations in America.

Do you know surveys, studies, books etc., which describe late-effects of long-term survivors who have got radiation and give recommendations?

Thank you and kind regards
Mickey

bordersj

HD_Mickey said:

Hodgkins Survivor
I am from Hamburg (Germany) and have been in remission for 25 years. In 1983, aged nineteen I have got diagnosis Hodgkins Disease and radiation therapy (44 Gy) to extended-field (axilla, mediastinum and neck). Five years later the Doc said to my, that I am healed and I would not need any follow-up care anymore.

Now the first late effects appear: hypothyroidism, small changes at heart, fast pulse (90-100). In the last two years I put on weight a lot (20 kilos, maybe a accessory symptom of hypothyroidism) and I am not so fit as before (dyspneic, early exhausting). Now I try to get follow-up care and a treatment at a health resort to reduce my weight - but I do not find a doctor, who supports my in my willing. Furthermore I would like to check up my lungs, breast etc. But I do not find a Doc, who supports my. They do not see the reason why, because here are no specialists of late effects, nobody knows who to deal with long-term survivors. That is the reason why I am looking for more informations in America.

Do you know surveys, studies, books etc., which describe late-effects of long-term survivors who have got radiation and give recommendations?

Thank you and kind regards
Mickey

25-year survivor with late effects
Hi folks,
I just found this site today; can't believe I haven't looked for long-term survivor info online before as I'm online all the time. Here's my story.

Diagnosed with Hodgkin's (stage 2A I think - I'm not at home to look it up) in 1984 at age 27. Had 2 sessions of mantle radiation then. I moved twice after that so had to change doctors and when I moved to the Atlanta area in 1989, my new doctor immediately checked for thyroid damage after hearing my medical history. I've been on synthroid ever since.

In 1992, the Hodgkin's came back. No one knows why. Had chemo then - MOPPABV? - for 6 months and then a few weeks of follow-up radiation. All disease this time was on my left side with a large tumor under my left arm. I've been followed closely by my oncologist since then. I see him twice a year.

I requested a full medical checkup in the late 1990's and it was discovered I had a heart murmur and I was referred to a cardiologist to follow that which turned out to be lucky because in 2002 I started having some strange chest pains and ended up having a triple bypass. That surgery went well but immediately afterward I developed pleural effusions on both left and right sides but mostly on the left. For anyone who hasn't experienced this, this is a buildup of fluid in the pleural cavity between the rib cage and the lungs; the fluid presses on the lungs and eventually makes you very short of breath. Before we knew what it was, it got so bad I couldn't lay down cause I couldn't breath when I did. They do a procedure called a thorocentesis to take the fluid out by inserting a tube, guided by ultrasound, into your back to draw out the fluid so you can breath. After fighting this for about a year, gaining even more specialists, and being on and off prednisone for 7 months (which would stop it at a high enough dosage but I was starting to get diabetic), I had a thoracotomy with decortication and pleurodesis (surgery to clean out the pleural cavity and enduce scar tissue) on the left side. Enducing scar tissue buildup fills up the cavity and prevents the fluid buildup. After that surgery I developed gastroparesis (paralysis of the stomach) in which the stomach doesn't contract to digest food and was told I would have to live on liquids for the rest of my life. I had started having some digestive problems after the heart surgery so I had a GI doctor already who treated me for the gastroparesis with Reglan (which was horrible - caused depression and I requested a change) and then an IBS drug called Zelnorm. The gastroparesis was mostly gone after about 8 months but I still have days when I feel like I can't put much at a time in my stomach. On the positive side, this is a great weight loss plan ;-) I lost about 40-50 pounds, which I needed to lose, between the heart surgery and then the stomach problems.

After all this drama I was doing pretty well. Cardiac rehab helped build my stamina back up and I continued to exercise regularly, which I still try to do. I was feeling pretty good until the pleural effusion came back on the right side in 2005. I wasn't particular happy with my previous surgeon so I went to another one who said we wouldn't have to do surgery; we could do a chest tube pleurodesis. The pleurodesis process induces scar tissue by using chemicals to enduce scar tissue buildup so they put the chemicals in thru the chest tube. Yes, it hurts for awhile. This procedure went bad. I checked into the hospital on a Monday for the procedure but no doctors showed up. I learned that my surgeon's mother-in-law had died over the weekend, his physician's assistant aunt had died over the weekend, and they asked another doctor, who I had never met and who didn't know me, to do the procedure. I should have checked out and gone home and waited but I didn't. I haven't been able to breath right since. My lung capacity is so limited that I am on disability now. I think we should have done surgery. My first surgeon mentioned that there was substantial scar tissue on my left lung and it was very fragile. He had to do a lot of cleanup. I think if I'd had surgery on the right side, that side could have been cleaned up better. I was still draining fluid when the doctor put in the chemicals and I believe I have small pockets of fluid still in the right side. None of my doctors want to do surgery to clean up the right side as they don't believe it would change anything. I get very short of breath very fast under exertion - carrying in groceries, climbing stairs, walking fast, etc. Since this condition has been induced to prevent the fluid buildup, it will never go away.

I also have pulmonary hypertension, heart valve problems, and an aneurysm on the left side of my heart. My cardiologist thinks it will be my heart that eventually gets me but not for a long time. My condition is staying pretty stable for now.

I'm followed by oncology, cardiology, pulmonology, and GI on a regular basis. I also see my primary care doctor for minor problems, a gynecologist once a year (chemo sent me into early menopause), eye doctor, dermatologist. I think that's all. Thank God for good insurance!

I'm lucky financially in that I worked for a company with great benefits. I have health insurance through them still and I had disability insurance which replaces 75% of my salary after Social Security Disability insurance. My Social Security Disability was approved in two months as my lung capacity is below their guidelines for disability and I provided all my medical records for them when I applied so they didn't have to ask the doctor's for anything. That was almost 4 years ago.

I also have a great husband who has seen me through all of this. We don't have any kids so I haven't had to worry about those issues during all this.

Now I have other minor problems and I don't know if they're because I'm getting older (52 now) or if they're side effects of the radiation. The thing that bothers me most is my neck and back muscles which are always hard as a rock. I've developed some swallowing problems and they've recommended swallowing therapy but I haven't done that yet. They say my neck muscles have been effected by radiation and that effects my swallowing. I get massage therapy regularly which really helps my neck and back. I also see a chiropracter. My oncologist also says my neck and back muscles have been effected by radiation.

I found a really good site today at http://www.survivorshipguidelines.org/ that has guidelines for long-term cancer survivors. It was developed for child cancer survivors but is applicable to everyone who has long term effects. I think it would be helpful for anyone here.

Hope this helps someone. I've been very frustrated lately as I don't know what "normal" for me is and I've just started looking for other long-term survivor stories.

One major regrest is that I didn't get long-term care insurance when I could have. When I tried they asked for 5 years of medical info. I might have been able to get it at some point when I'd been stable for 5 years. So let this be a lesson.

Actually I feel very lucky. My health could be so much worse. I know I'm still at risk for other cancers and possibly other problems so it continues to be a wait and see game forever. But in the mean time I'll continue to live life as fully as I can!

Sorry this got so long but it's been a long story of continuous problems for the last seven years.... Hope this helps someone. Make sure you have regular check ups! I suspect there's no long term survivor out there that hasn't had some problem. I hope there's a doctor somewhere planning to publish on this subject.

JudyB.

hodgkoid2003

bordersj said:

25-year survivor with late effects
Hi folks,
I just found this site today; can't believe I haven't looked for long-term survivor info online before as I'm online all the time. Here's my story.

Diagnosed with Hodgkin's (stage 2A I think - I'm not at home to look it up) in 1984 at age 27. Had 2 sessions of mantle radiation then. I moved twice after that so had to change doctors and when I moved to the Atlanta area in 1989, my new doctor immediately checked for thyroid damage after hearing my medical history. I've been on synthroid ever since.

In 1992, the Hodgkin's came back. No one knows why. Had chemo then - MOPPABV? - for 6 months and then a few weeks of follow-up radiation. All disease this time was on my left side with a large tumor under my left arm. I've been followed closely by my oncologist since then. I see him twice a year.

I requested a full medical checkup in the late 1990's and it was discovered I had a heart murmur and I was referred to a cardiologist to follow that which turned out to be lucky because in 2002 I started having some strange chest pains and ended up having a triple bypass. That surgery went well but immediately afterward I developed pleural effusions on both left and right sides but mostly on the left. For anyone who hasn't experienced this, this is a buildup of fluid in the pleural cavity between the rib cage and the lungs; the fluid presses on the lungs and eventually makes you very short of breath. Before we knew what it was, it got so bad I couldn't lay down cause I couldn't breath when I did. They do a procedure called a thorocentesis to take the fluid out by inserting a tube, guided by ultrasound, into your back to draw out the fluid so you can breath. After fighting this for about a year, gaining even more specialists, and being on and off prednisone for 7 months (which would stop it at a high enough dosage but I was starting to get diabetic), I had a thoracotomy with decortication and pleurodesis (surgery to clean out the pleural cavity and enduce scar tissue) on the left side. Enducing scar tissue buildup fills up the cavity and prevents the fluid buildup. After that surgery I developed gastroparesis (paralysis of the stomach) in which the stomach doesn't contract to digest food and was told I would have to live on liquids for the rest of my life. I had started having some digestive problems after the heart surgery so I had a GI doctor already who treated me for the gastroparesis with Reglan (which was horrible - caused depression and I requested a change) and then an IBS drug called Zelnorm. The gastroparesis was mostly gone after about 8 months but I still have days when I feel like I can't put much at a time in my stomach. On the positive side, this is a great weight loss plan ;-) I lost about 40-50 pounds, which I needed to lose, between the heart surgery and then the stomach problems.

After all this drama I was doing pretty well. Cardiac rehab helped build my stamina back up and I continued to exercise regularly, which I still try to do. I was feeling pretty good until the pleural effusion came back on the right side in 2005. I wasn't particular happy with my previous surgeon so I went to another one who said we wouldn't have to do surgery; we could do a chest tube pleurodesis. The pleurodesis process induces scar tissue by using chemicals to enduce scar tissue buildup so they put the chemicals in thru the chest tube. Yes, it hurts for awhile. This procedure went bad. I checked into the hospital on a Monday for the procedure but no doctors showed up. I learned that my surgeon's mother-in-law had died over the weekend, his physician's assistant aunt had died over the weekend, and they asked another doctor, who I had never met and who didn't know me, to do the procedure. I should have checked out and gone home and waited but I didn't. I haven't been able to breath right since. My lung capacity is so limited that I am on disability now. I think we should have done surgery. My first surgeon mentioned that there was substantial scar tissue on my left lung and it was very fragile. He had to do a lot of cleanup. I think if I'd had surgery on the right side, that side could have been cleaned up better. I was still draining fluid when the doctor put in the chemicals and I believe I have small pockets of fluid still in the right side. None of my doctors want to do surgery to clean up the right side as they don't believe it would change anything. I get very short of breath very fast under exertion - carrying in groceries, climbing stairs, walking fast, etc. Since this condition has been induced to prevent the fluid buildup, it will never go away.

I also have pulmonary hypertension, heart valve problems, and an aneurysm on the left side of my heart. My cardiologist thinks it will be my heart that eventually gets me but not for a long time. My condition is staying pretty stable for now.

I'm followed by oncology, cardiology, pulmonology, and GI on a regular basis. I also see my primary care doctor for minor problems, a gynecologist once a year (chemo sent me into early menopause), eye doctor, dermatologist. I think that's all. Thank God for good insurance!

I'm lucky financially in that I worked for a company with great benefits. I have health insurance through them still and I had disability insurance which replaces 75% of my salary after Social Security Disability insurance. My Social Security Disability was approved in two months as my lung capacity is below their guidelines for disability and I provided all my medical records for them when I applied so they didn't have to ask the doctor's for anything. That was almost 4 years ago.

I also have a great husband who has seen me through all of this. We don't have any kids so I haven't had to worry about those issues during all this.

Now I have other minor problems and I don't know if they're because I'm getting older (52 now) or if they're side effects of the radiation. The thing that bothers me most is my neck and back muscles which are always hard as a rock. I've developed some swallowing problems and they've recommended swallowing therapy but I haven't done that yet. They say my neck muscles have been effected by radiation and that effects my swallowing. I get massage therapy regularly which really helps my neck and back. I also see a chiropracter. My oncologist also says my neck and back muscles have been effected by radiation.

I found a really good site today at http://www.survivorshipguidelines.org/ that has guidelines for long-term cancer survivors. It was developed for child cancer survivors but is applicable to everyone who has long term effects. I think it would be helpful for anyone here.

Hope this helps someone. I've been very frustrated lately as I don't know what "normal" for me is and I've just started looking for other long-term survivor stories.

One major regrest is that I didn't get long-term care insurance when I could have. When I tried they asked for 5 years of medical info. I might have been able to get it at some point when I'd been stable for 5 years. So let this be a lesson.

Actually I feel very lucky. My health could be so much worse. I know I'm still at risk for other cancers and possibly other problems so it continues to be a wait and see game forever. But in the mean time I'll continue to live life as fully as I can!

Sorry this got so long but it's been a long story of continuous problems for the last seven years.... Hope this helps someone. Make sure you have regular check ups! I suspect there's no long term survivor out there that hasn't had some problem. I hope there's a doctor somewhere planning to publish on this subject.

JudyB.

19 Year Survivor
Judy B.,

I can relate to many of what you wrote. My bio states pretty much what I've gone through. I've found that the ACOR site (www.acor.org) is a very informative site for us long term survivors. One of the things that you'd find there, is a lot of info in regards to finding a "late effects" clinic, in other words, doctors who specialize in helping many of us deal with the late effects from our treatments.

The thing you mention with the neck, is something that I'm dealing with. Also felt that it is caused by radiatioin, it was explained to me, that the muscles in my neck have deteriorated, leaving the muscles in the front alone (for whatever reason). This results in my head being "pulled" forward (it looks like I'm always sulking), unless I happen to catch myself in this position. Sometimes it is referred to as "drooping head syndrome". Dr. Stubblefield and Dr. Oeffinger at Sloan Kettering in NYC introduced me to this. There is also some noticeable decrease in muscle in my shoulders.

With my double CABG though last year, I'd say that the focus on my heart overrules all the other stuff that I am dealing with. I actually go for my first annual cardio follow-up in two weeks.

Sorry to see that you have had so many other issues, but am glad to see that you beat the beast 25 years.

Paul E. (Hodgkoid2003)

rcourville

hodgkoid2003 said:

19 Year Survivor
Judy B.,

I can relate to many of what you wrote. My bio states pretty much what I've gone through. I've found that the ACOR site (www.acor.org) is a very informative site for us long term survivors. One of the things that you'd find there, is a lot of info in regards to finding a "late effects" clinic, in other words, doctors who specialize in helping many of us deal with the late effects from our treatments.

The thing you mention with the neck, is something that I'm dealing with. Also felt that it is caused by radiatioin, it was explained to me, that the muscles in my neck have deteriorated, leaving the muscles in the front alone (for whatever reason). This results in my head being "pulled" forward (it looks like I'm always sulking), unless I happen to catch myself in this position. Sometimes it is referred to as "drooping head syndrome". Dr. Stubblefield and Dr. Oeffinger at Sloan Kettering in NYC introduced me to this. There is also some noticeable decrease in muscle in my shoulders.

With my double CABG though last year, I'd say that the focus on my heart overrules all the other stuff that I am dealing with. I actually go for my first annual cardio follow-up in two weeks.

Sorry to see that you have had so many other issues, but am glad to see that you beat the beast 25 years.

Paul E. (Hodgkoid2003)

drooping neck syndrome
yesterday someone asked me if I was stretching my neck. I catch myself doing
that frequently. I thought it was from stress-hahaha.
I am a 9 year survivor of Hodgkins Lymphoma. The first time I was diagnosed, I had radiation treatment to my neck and chest; which resulted in hypothyroidism, but thats another story.
I find the term " drooping neck syndrome" very interesting. I have never heard of it before.

QRX

Problems
Thanks a million everyone for posting this stuff. It is good to find people who have been through the same thing.

I was diagnosed with stage I-IIA Hodgkin's back in 1993, 16 years ago. Two things that I did right: refused all chemo and refused to let the butchers take my spleen. Then I stupidly agreed to take upper mantle radiation (40Gy). The radiation was an indescribably horrible experience. Coughing up blood, sore throat, exhaustion, nose bleeds, severe weight loss. Far worse than the disease, which my body had been keeping in check by itself.

Now, years later, the skin in the irradiated area is sensitive to the point where I have to watch water temperature when taking a shower. To the rest of my body, water feels fine, but to neck and shoulders, it burns. Have to watch that. Had a few really bad cases of pneumonia over the years, caused by lung damage. Maybe some hearing damage. A few years ago started getting wondering about hearing my left ear. Occasionally it would kind of fade out, or turn into a high pitch, then a few minutes later it would come back. Changed my diet, lost 20 lbs., and hearing got a lot better.

Hair on back of head and neck has never fully grown back, and it looks and feels terrible. I avoid touching my neck. No thyroid problems yet, but I keep an eye on it. Occasionally I get slight tingling in feet and hands, and I wonder if it could be caused by neuropathy. Have had many dental problems, too. Lower jaw is just not the same. Lots and lots of cavities and lost a few molars. My sense of taste is not quite the same as it was prior to radiation.

To anyone out there recently diagnosed with Hodgkin's, my advice is REFUSE radiation! Just walk away. Explore every alternative treatment before restorting to radiation or chemo. Read about pleomorphic bacteria and consider antibiotic therapy. Take Essiac. Supplement with D3. Try Macrobiotics. You have plenty of time. Hodgkin's grows slowly and spreads in a very predictiable way, so you are not loosing anything by taking time to educate yourself and explore alternatives. If you decide to take radiation, make sure it is involved-field radiation only, and less than 25Gy. You will be much happier later, believe me.

Sorry, but I am definitely not happy with these results. Radiation is a very harsh, disabling, disfiguring, and crude way to treat this disease. I would give anything to undo this damage, even if it means having the disease back. I guess I am bitter about this. I am angry at the arrogant doctors and nurses who treated me. May God damn them to hell. Or better yet, may God damn them to 5 weeks of radiation treatments.

I would love to find some kind of treatment for these late effects, and I'm looking into hyperbaric oxygen therapy (HBOT). It is used for lower jaw problems, and may be useful for other radiation effects. Does anyone have any information on HBOT? Has anyone here tried it or have experience with it? Any comments would be appreciated.

Thanks!

hodgkoid2003

QRX said:

Problems
Thanks a million everyone for posting this stuff. It is good to find people who have been through the same thing.

I was diagnosed with stage I-IIA Hodgkin's back in 1993, 16 years ago. Two things that I did right: refused all chemo and refused to let the butchers take my spleen. Then I stupidly agreed to take upper mantle radiation (40Gy). The radiation was an indescribably horrible experience. Coughing up blood, sore throat, exhaustion, nose bleeds, severe weight loss. Far worse than the disease, which my body had been keeping in check by itself.

Now, years later, the skin in the irradiated area is sensitive to the point where I have to watch water temperature when taking a shower. To the rest of my body, water feels fine, but to neck and shoulders, it burns. Have to watch that. Had a few really bad cases of pneumonia over the years, caused by lung damage. Maybe some hearing damage. A few years ago started getting wondering about hearing my left ear. Occasionally it would kind of fade out, or turn into a high pitch, then a few minutes later it would come back. Changed my diet, lost 20 lbs., and hearing got a lot better.

Hair on back of head and neck has never fully grown back, and it looks and feels terrible. I avoid touching my neck. No thyroid problems yet, but I keep an eye on it. Occasionally I get slight tingling in feet and hands, and I wonder if it could be caused by neuropathy. Have had many dental problems, too. Lower jaw is just not the same. Lots and lots of cavities and lost a few molars. My sense of taste is not quite the same as it was prior to radiation.

To anyone out there recently diagnosed with Hodgkin's, my advice is REFUSE radiation! Just walk away. Explore every alternative treatment before restorting to radiation or chemo. Read about pleomorphic bacteria and consider antibiotic therapy. Take Essiac. Supplement with D3. Try Macrobiotics. You have plenty of time. Hodgkin's grows slowly and spreads in a very predictiable way, so you are not loosing anything by taking time to educate yourself and explore alternatives. If you decide to take radiation, make sure it is involved-field radiation only, and less than 25Gy. You will be much happier later, believe me.

Sorry, but I am definitely not happy with these results. Radiation is a very harsh, disabling, disfiguring, and crude way to treat this disease. I would give anything to undo this damage, even if it means having the disease back. I guess I am bitter about this. I am angry at the arrogant doctors and nurses who treated me. May God damn them to hell. Or better yet, may God damn them to 5 weeks of radiation treatments.

I would love to find some kind of treatment for these late effects, and I'm looking into hyperbaric oxygen therapy (HBOT). It is used for lower jaw problems, and may be useful for other radiation effects. Does anyone have any information on HBOT? Has anyone here tried it or have experience with it? Any comments would be appreciated.

Thanks!

QRX
If you are looking for a late effects clinic, there are several accross the US. And they are helpful.
I can understand if you are in pain, frustrated, and leary about treatments, but to be honest, and fair, it is not right to tell people to blankly refuse treatment, of any kind without knowing their situation. I deal with late effects myself for my hodgkin's back in the late 80's, but I know having treatments gave me another 20 years and two beautiful daughters.
Treatments today, whether chemo or radiation, are being improved every day, sometimes making obsolete what was just used 5 years ago. And they do take more care when it comes to side effects, whether short term, or long term.
I know of several late effect clinics accross the US, and if you are interested, please just reply back with just your state. But please, no more unsafe medical advice.

Paul E. (Hodgkoid2003)

QRX

hodgkoid2003 said:

QRX
If you are looking for a late effects clinic, there are several accross the US. And they are helpful.
I can understand if you are in pain, frustrated, and leary about treatments, but to be honest, and fair, it is not right to tell people to blankly refuse treatment, of any kind without knowing their situation. I deal with late effects myself for my hodgkin's back in the late 80's, but I know having treatments gave me another 20 years and two beautiful daughters.
Treatments today, whether chemo or radiation, are being improved every day, sometimes making obsolete what was just used 5 years ago. And they do take more care when it comes to side effects, whether short term, or long term.
I know of several late effect clinics accross the US, and if you are interested, please just reply back with just your state. But please, no more unsafe medical advice.

Paul E. (Hodgkoid2003)

late effects clinics
You are absolutely right Hodgkoid. Treatments have changed quite a lot.

One year after my treatment ended, the entire protocol changed. ONE YEAR. They started using a better diagnostic technique and far less radiation, to more localized areas. One thing that frustrates me beyond end is that I saw this coming. I read the literature, told my doctors about it, and was told to forget it, they won't deviate from the then-current protocol. I now have to pay the price for their inflexible ignorance.

Just to be clear, I am not giving any medical advice, just advising people to look into alternatives to medical treatment. It's important to look around and see what else is out there.

Sure, please tell me anything you know about late effects clinics. I am currently in Colorado.

Thanks!

hodgkoid2003

QRX said:

late effects clinics
You are absolutely right Hodgkoid. Treatments have changed quite a lot.

One year after my treatment ended, the entire protocol changed. ONE YEAR. They started using a better diagnostic technique and far less radiation, to more localized areas. One thing that frustrates me beyond end is that I saw this coming. I read the literature, told my doctors about it, and was told to forget it, they won't deviate from the then-current protocol. I now have to pay the price for their inflexible ignorance.

Just to be clear, I am not giving any medical advice, just advising people to look into alternatives to medical treatment. It's important to look around and see what else is out there.

Sure, please tell me anything you know about late effects clinics. I am currently in Colorado.

Thanks!

Late Effects Clinics
QRX,

You seem to be completely interior of the country as far as clinics that I am aware of. I know of one at the Mayo, Seattle, Stanford, Cleveland, Sloan Kettering in NYC, Children's Hospital of Phila, Duke in NC, Dana Farber in Boston. I have not heard of any near Colorado, but as a friend told me last year, don't ever let economics determine your treatments.

Back in the 80's, I was young and dumb. I didn't care about having kids, and certainly didn't think about the future, though I wanted to live and survive the beast. The exact words from my oncologist, were, "an increased chance of a secondary cancer such as leukemia or inflamation of the heart". That simple, that vague.

Last April, I was diagnosed with a "widowmaker". What was supposed to be a simple stint operation for a blockage, turned into an emergency double bypass as the cardiologist realized that it was not just plaque blocking the main artery to my heart.

So, after years of "living with my head in the clouds" (as the same friend put it), and not having follow-ups, I came across Sloan and met an awesome doctor there who has specialized in Hodkgin's, and its late effects. I had to obtain my treatment records and was mortified to find out that all my chemo records had been destroyed. My radiation records were still available. (Note to all, you want to make sure you have a copy of all your records). Anyway, he was able to figure out what amounts of chemo I had been given, but he had accurate record of my rads.

Today, I am on a regular schedule with him. I am still learning what has been done to me, and have a pretty good idea of what lies ahead. I know that I have more cardiac issues, pulmonary issues, spinal and shoulder. But given the "when not if" situation last year, I'll manange. Would I do anything different? No chance.

I do agree that there may be alternatives out there, but first, a person should really consider what works, and what is proven. Case in point, Hodgkin's while considered rare, still has one of the highest cure rates. And when a teenage boy makes national news, because a parent elects not to subject him to treatment, my heart sank. And it was proven what would happen to him, had they not changed their minds. I often refer to alternative choices okay as long as they are complimentary, which means you need to talk with your doc about the stuff, and more often than not, they are not open to those thoughts. Even now, though a statin drug is almost required for me, and other bypass patients, I have made the choice to refuse it, but that was only after a lot of proven research. I have 3 docs that I deal with, and all 3 are against that choice, but 2 out of the 3 are helping me to find some other method to control my cholesterol. And this is the difference.

Please visit any of those hospital web sites, and I'm sure that you can find answers to questions, that I think you might have.

Paul E. (Hodgkoid2003)

missde3

hodgkoid2003 said:

Late Effects Clinics
QRX,

You seem to be completely interior of the country as far as clinics that I am aware of. I know of one at the Mayo, Seattle, Stanford, Cleveland, Sloan Kettering in NYC, Children's Hospital of Phila, Duke in NC, Dana Farber in Boston. I have not heard of any near Colorado, but as a friend told me last year, don't ever let economics determine your treatments.

Back in the 80's, I was young and dumb. I didn't care about having kids, and certainly didn't think about the future, though I wanted to live and survive the beast. The exact words from my oncologist, were, "an increased chance of a secondary cancer such as leukemia or inflamation of the heart". That simple, that vague.

Last April, I was diagnosed with a "widowmaker". What was supposed to be a simple stint operation for a blockage, turned into an emergency double bypass as the cardiologist realized that it was not just plaque blocking the main artery to my heart.

So, after years of "living with my head in the clouds" (as the same friend put it), and not having follow-ups, I came across Sloan and met an awesome doctor there who has specialized in Hodkgin's, and its late effects. I had to obtain my treatment records and was mortified to find out that all my chemo records had been destroyed. My radiation records were still available. (Note to all, you want to make sure you have a copy of all your records). Anyway, he was able to figure out what amounts of chemo I had been given, but he had accurate record of my rads.

Today, I am on a regular schedule with him. I am still learning what has been done to me, and have a pretty good idea of what lies ahead. I know that I have more cardiac issues, pulmonary issues, spinal and shoulder. But given the "when not if" situation last year, I'll manange. Would I do anything different? No chance.

I do agree that there may be alternatives out there, but first, a person should really consider what works, and what is proven. Case in point, Hodgkin's while considered rare, still has one of the highest cure rates. And when a teenage boy makes national news, because a parent elects not to subject him to treatment, my heart sank. And it was proven what would happen to him, had they not changed their minds. I often refer to alternative choices okay as long as they are complimentary, which means you need to talk with your doc about the stuff, and more often than not, they are not open to those thoughts. Even now, though a statin drug is almost required for me, and other bypass patients, I have made the choice to refuse it, but that was only after a lot of proven research. I have 3 docs that I deal with, and all 3 are against that choice, but 2 out of the 3 are helping me to find some other method to control my cholesterol. And this is the difference.

Please visit any of those hospital web sites, and I'm sure that you can find answers to questions, that I think you might have.

Paul E. (Hodgkoid2003)

I was Dx w Hodgkins in 1988
I was Dx w Hodgkins in 1988 at the age of 28. Opted for radiation and refused the chemo because i had 3 little kids and felt I could always go to it if the rad didn't work. I was just Dx with breast cancer in April. Could not get a lumpectomy w/rad due to previous rad. Only option was mastectomy. I opted for bi-lateral since the docs are convinced it was caused by the HD rad and if it appeared in the other breast, the only option would be a mastectomy. I also have neck and back problems. Thyroid, esophagus, stomach, skin and heart issues. I developed fibromyalgia the year after the Hodgkins. I am thinking about looking up the 'late effects' doc now. I didn't even know there was such a doctor. My son, 6 years after me was Dx with Hodgkins, too at the age of 18. He had chemo only. We're both in extended remission. I'm reeling from the breast cancer Dx. I'm only 49 and to have two different types of cancer in one lifetime is two too many. Especially when the cure for one is the cause for the other...All you females out there - if you were under 30 when you had radiation for the Hodgkins, insist on an MRI for your breasts! The mammo didn't show it...

molly12

missde3 said:

I was Dx w Hodgkins in 1988
I was Dx w Hodgkins in 1988 at the age of 28. Opted for radiation and refused the chemo because i had 3 little kids and felt I could always go to it if the rad didn't work. I was just Dx with breast cancer in April. Could not get a lumpectomy w/rad due to previous rad. Only option was mastectomy. I opted for bi-lateral since the docs are convinced it was caused by the HD rad and if it appeared in the other breast, the only option would be a mastectomy. I also have neck and back problems. Thyroid, esophagus, stomach, skin and heart issues. I developed fibromyalgia the year after the Hodgkins. I am thinking about looking up the 'late effects' doc now. I didn't even know there was such a doctor. My son, 6 years after me was Dx with Hodgkins, too at the age of 18. He had chemo only. We're both in extended remission. I'm reeling from the breast cancer Dx. I'm only 49 and to have two different types of cancer in one lifetime is two too many. Especially when the cure for one is the cause for the other...All you females out there - if you were under 30 when you had radiation for the Hodgkins, insist on an MRI for your breasts! The mammo didn't show it...

long term survivor radiated 1986
HI
I am from the UK. In 2003 there was a dept health recall exercise for anyone treated with mantle radiotherapy before they were 35 years. This was for the breast cancer risk. I was missed out. I developed breast cancer in 2004 and had a mastectomy. The tumour was where it was described in the dept health report. I asked for bi lateral mastectomy but told by the surgeon the risk was not bi lateral so he only removed one breast.I discovered after this that the risk is bi lateral and decided recently to have another preventive mastecomy. The week before this I was told I had precancerous cells in that breast. We do not have clinics here for the long term effects. I have read of the other risks but have to tell my Doctors. Nobody has ever warned me or informed me of the research findings, this includes my oncologist.What are late effects clinics and is the info on the damage caused by the mantle radiotherapy more available where you all live.

hodgkoid2003

molly12 said:

long term survivor radiated 1986
HI
I am from the UK. In 2003 there was a dept health recall exercise for anyone treated with mantle radiotherapy before they were 35 years. This was for the breast cancer risk. I was missed out. I developed breast cancer in 2004 and had a mastectomy. The tumour was where it was described in the dept health report. I asked for bi lateral mastectomy but told by the surgeon the risk was not bi lateral so he only removed one breast.I discovered after this that the risk is bi lateral and decided recently to have another preventive mastecomy. The week before this I was told I had precancerous cells in that breast. We do not have clinics here for the long term effects. I have read of the other risks but have to tell my Doctors. Nobody has ever warned me or informed me of the research findings, this includes my oncologist.What are late effects clinics and is the info on the damage caused by the mantle radiotherapy more available where you all live.

Late Effect Clinics
Molly,

There are two websites, actually 3, where you can find help with late effects, and clinics. The first is www.acor.org, look for the mailing lists for LT Survivors (like us). You subscribe, and one of the first emails you will get will tell you about Childrens Oncology Group, and also, Cancer Survivor Guidelines. I forget which one has it (though I want to list Childrens Oncology Group), but they actually list where they are (and there aren't many.

The key for you, being across the Pond, if unable to come to the US, you can at least get the information to share with your primary care doctor, who should undoubtedly be your biggest ally.

Let me know if you don't have success to any of these sites.

Paul E. (Hodgkoid2003)

molly12

mantle radiotherapy
To Paul

Thanks for the info I will look at this info. Its good to know that their are others that understand. Its a pity we can't go back in time and know about the effects and maybe we could have made different choices. I recently read that the long term effects of mantle radiotherapy were known as far back as 1970, certainly no one discussed it with me. Do you know if anyone has ever looked at compensation ?

missde3

molly12 said:

mantle radiotherapy
To Paul

Thanks for the info I will look at this info. Its good to know that their are others that understand. Its a pity we can't go back in time and know about the effects and maybe we could have made different choices. I recently read that the long term effects of mantle radiotherapy were known as far back as 1970, certainly no one discussed it with me. Do you know if anyone has ever looked at compensation ?

Well - it's good to see this
Well - it's good to see this sight. Hodgkins, age 28. Stage IIIa. My son was diagnosed 6 years later - Stage IIb. I had rads. He had chemo. I have had so many odd things go wrong with me. My thyroid died within 3 months of rads. My neck muscles are always so sore and hard. (I probably droop, too) I have Fibromyalgia and Chronic Fatigue Syndrome. I have esophagus and stomach problems. I have heart irregularities. I have hearing loss and tinnitus. I have skin problems. I have developed breast cancer. I never feel right. I keep going to all these different doctors but no one seems to put it all together. I just had a bilateral mastectomy due to the high risk of breast cancer in the other breast. There's a gland swollen on my thyroid. We all have to be so diligent with making sure we really watch what's going on with our bodies. The anesthesiologists are afraid of surgery on me because of the atrophied throat muscles. There's a lot of stuff that we don't even know about but we all have to hang in there!

MichelleHenry

laurlea said:

Hodgkins Survivor
I was diagnosed in 1989 with Hodgkins Stage 2B. I had chemo, mantle radiation, bone marrow harvesting. The only side effect I have is neuropathy in my feet. So far so good! Any with a recurrence of leukemia or breast cancer?

Neuropathy
I also have been effected with neuropathy. Do you have feeling back? How long did it take you? I can't even walk right and still really can't feel my lower legs (from my knees to my toes).

MichelleHenry

QRX said:

Problems
Thanks a million everyone for posting this stuff. It is good to find people who have been through the same thing.

I was diagnosed with stage I-IIA Hodgkin's back in 1993, 16 years ago. Two things that I did right: refused all chemo and refused to let the butchers take my spleen. Then I stupidly agreed to take upper mantle radiation (40Gy). The radiation was an indescribably horrible experience. Coughing up blood, sore throat, exhaustion, nose bleeds, severe weight loss. Far worse than the disease, which my body had been keeping in check by itself.

Now, years later, the skin in the irradiated area is sensitive to the point where I have to watch water temperature when taking a shower. To the rest of my body, water feels fine, but to neck and shoulders, it burns. Have to watch that. Had a few really bad cases of pneumonia over the years, caused by lung damage. Maybe some hearing damage. A few years ago started getting wondering about hearing my left ear. Occasionally it would kind of fade out, or turn into a high pitch, then a few minutes later it would come back. Changed my diet, lost 20 lbs., and hearing got a lot better.

Hair on back of head and neck has never fully grown back, and it looks and feels terrible. I avoid touching my neck. No thyroid problems yet, but I keep an eye on it. Occasionally I get slight tingling in feet and hands, and I wonder if it could be caused by neuropathy. Have had many dental problems, too. Lower jaw is just not the same. Lots and lots of cavities and lost a few molars. My sense of taste is not quite the same as it was prior to radiation.

To anyone out there recently diagnosed with Hodgkin's, my advice is REFUSE radiation! Just walk away. Explore every alternative treatment before restorting to radiation or chemo. Read about pleomorphic bacteria and consider antibiotic therapy. Take Essiac. Supplement with D3. Try Macrobiotics. You have plenty of time. Hodgkin's grows slowly and spreads in a very predictiable way, so you are not loosing anything by taking time to educate yourself and explore alternatives. If you decide to take radiation, make sure it is involved-field radiation only, and less than 25Gy. You will be much happier later, believe me.

Sorry, but I am definitely not happy with these results. Radiation is a very harsh, disabling, disfiguring, and crude way to treat this disease. I would give anything to undo this damage, even if it means having the disease back. I guess I am bitter about this. I am angry at the arrogant doctors and nurses who treated me. May God damn them to hell. Or better yet, may God damn them to 5 weeks of radiation treatments.

I would love to find some kind of treatment for these late effects, and I'm looking into hyperbaric oxygen therapy (HBOT). It is used for lower jaw problems, and may be useful for other radiation effects. Does anyone have any information on HBOT? Has anyone here tried it or have experience with it? Any comments would be appreciated.

Thanks!

YIKES!!!
I can't believe that you would tell everyone that it is slow growing and predictable. My doctor told me that it was not slow growing and that if I didn't get the chemo when I did then I would have been dead in a few months. And that was after the fact. Please, if you do have cancer check everything out, but not everyone has the luxury of choosing. I was one of the ones that didn't have a choice but to die.