Hodgkins disease survivor
Comments
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hypothyroidismhodgkoid2003 said: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)
I am a 17 year survivor of 2a Hodgkin's and received MOPP and mantle radiation. I have experienced some of the late effects such as difficulty swallowing, pain in neck and shoulders and lung damage. I also had a prophylactic double mastectomy in 2005 because of the increased risk of breast cancer--since I was diagnosed when I was 17. I've taken synthroid for years, but now I am so exhausted all the time. I have read alot about t3 and t4 levels when testing thyroid function. Does anyone get comprehensive thyroid testing including t3 tests. Also, is there anything I can do for the decreased lung function? My late effects doctor just blows me off when I ask.0 -
Get checked for Thyroid Cancerawgarner said:hypothyroidism
I am a 17 year survivor of 2a Hodgkin's and received MOPP and mantle radiation. I have experienced some of the late effects such as difficulty swallowing, pain in neck and shoulders and lung damage. I also had a prophylactic double mastectomy in 2005 because of the increased risk of breast cancer--since I was diagnosed when I was 17. I've taken synthroid for years, but now I am so exhausted all the time. I have read alot about t3 and t4 levels when testing thyroid function. Does anyone get comprehensive thyroid testing including t3 tests. Also, is there anything I can do for the decreased lung function? My late effects doctor just blows me off when I ask.
Hi I am a 26 year survivor of 2B Non Hodgkin's & Received 6 monthes of MOPP & 6 weeks of Mantle radiation 5 days a week. I was over radiated and got radiation anuminitis they burnt 3/4's of one lung & 1/4 of the other lung. I Have Cronic Lung Disease & In 2003 I blew up to 188 pounds and Lucky for Me My PCP Who has been my doc since i was 19 noticed that my Thyroid was inlarged he tested my t3's & t4's and the tests came back FINE! He then decided to have me get an ultrasound on my Thyroid and from there a Biopsy witch came back as Thyroid cancer. I had my Thyroid removed that year and I have been on Synthroid ever since My weight dropped to 120 and I Don't Feel like the same Person I was before they removed my thyroid. I cant stop taking the Synthroid cause Your thyroid Controls Almost every Thing in your body in some way or another and the syntrhoid is to keep every thing thinking you still have your thyroid so Ive been told! So I can't help ya there But I suggest you have them Check Your Thyroid Or Get another Doctor!! As for the Lungs I have My own Breathing treatment machine ( A Nebulizer ) and do treatments ( Albuterol )as needed I also have an inhailer ( ProAir HFA )witch i keep with me at all times IT Does HELP! Ask Your Docter to get you a Nebulizer for Home and Talk to him about an inhailer! Hope this helps!!! Best Of Luck Pat0 -
30 years and still goingmissde3 said: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!
I was diagnosed when I was 13 years old back in 1979. I had a lump in my throat that was cutting off air to my lungs. Although it almost killed me because of fast growth it also had the desirable effect of forcing my diagnosis of Stage 2+. They almost took the spleen out but decided to radiate it instead. Treatment: 6 months MOPP, 30 days radiation, 6 month MOPP.
About 16 years later I had basal skin cancer. No problem it is harmless and it hasn't come back. Chemo left me with no fertility.
I see a cancer specialist in a long term clinic which is what I call "oncology break for doctors". At first the visits were to make sure I was in remission. Doctors were always apprehensive giving out info on what to expect. In the last few years they have been quite helpful.
In August they asked that I get tests for my heart. First step is to get a chorestoral blood test. If it is poor I'm to get a treadmill ECG. This works for me! I was told I had half the usual dose of radiation for the 1970s so I should be lucky.
I do have some shoulder tenseness and I crack my back often. Thanks to your writings I won't ignore and get checked out!!!
All in all I'm lucky all things considered and have a wonderful life so far. I wish everyone health and happiness!!!
Richard
BTW - I live in Canada and been watching the US health care debate. Enough said....0 -
Yes, to all the above and moredpomroy said:Yes, to all of the
Yes, to all of the above:
thyroid problems due to radiation of the neck
lung damage due to high dose chemo and radiation
early menopause because of treatments
neuropathy, yes
panic attacks, yes
dry skin
hearing loss
protein spilling disease of the kidneys
who knows what else
But
I
am still
ALIVE!
and kicking!
Hi Im a 22yr survivor from 3A NS Hodgkins, I had my spleen removed and had total lymph node radiation including liver (18 wks total). I have all the above thyroid, lung, heart, neuropathy, dry skin, I drink water like a fish im sure my inside are just as dry, ringing in the ears, they tell me my spine is deteriorating, pain in back and legs,yes you name it. But what I dont see is balance on anyones list of things. I have been past from doctor to doctor and Im tired of the end result. "ITS BECAUSE OF THE RADIATION" . I am having trouble with balance, I would never pass a sobriety test, and I don't drink. LOL
Yes I am thankful for each day given, if anyone has balance problems let me know0 -
Thyroid Cancer after Hodgkin's Lymphoma ---Pat1968 said:Get checked for Thyroid Cancer
Hi I am a 26 year survivor of 2B Non Hodgkin's & Received 6 monthes of MOPP & 6 weeks of Mantle radiation 5 days a week. I was over radiated and got radiation anuminitis they burnt 3/4's of one lung & 1/4 of the other lung. I Have Cronic Lung Disease & In 2003 I blew up to 188 pounds and Lucky for Me My PCP Who has been my doc since i was 19 noticed that my Thyroid was inlarged he tested my t3's & t4's and the tests came back FINE! He then decided to have me get an ultrasound on my Thyroid and from there a Biopsy witch came back as Thyroid cancer. I had my Thyroid removed that year and I have been on Synthroid ever since My weight dropped to 120 and I Don't Feel like the same Person I was before they removed my thyroid. I cant stop taking the Synthroid cause Your thyroid Controls Almost every Thing in your body in some way or another and the syntrhoid is to keep every thing thinking you still have your thyroid so Ive been told! So I can't help ya there But I suggest you have them Check Your Thyroid Or Get another Doctor!! As for the Lungs I have My own Breathing treatment machine ( A Nebulizer ) and do treatments ( Albuterol )as needed I also have an inhailer ( ProAir HFA )witch i keep with me at all times IT Does HELP! Ask Your Docter to get you a Nebulizer for Home and Talk to him about an inhailer! Hope this helps!!! Best Of Luck Pat
Yes after 13 years Post Hodgkins Lymphoma (chemo and radiation) I had to have my Thyroid and para thyroid radically removed... (look at my neck in my current picture ) I'm 50 years old. I had it removed in 1976 -- Had a Spinal Cord Minigioma removed with a triple laminectomy in 1996, and Breast Cancer 2000. all are a result of Radiation treatment to cure me of Hodgkins Lymphoma. I am yet Healthier though than most.0 -
Hodgkin's Lymphoma - Thyroid Cancer - Breast Cancer --awgarner said:hypothyroidism
I am a 17 year survivor of 2a Hodgkin's and received MOPP and mantle radiation. I have experienced some of the late effects such as difficulty swallowing, pain in neck and shoulders and lung damage. I also had a prophylactic double mastectomy in 2005 because of the increased risk of breast cancer--since I was diagnosed when I was 17. I've taken synthroid for years, but now I am so exhausted all the time. I have read alot about t3 and t4 levels when testing thyroid function. Does anyone get comprehensive thyroid testing including t3 tests. Also, is there anything I can do for the decreased lung function? My late effects doctor just blows me off when I ask.
Throw a Spinal Cord Miningioma into it ! Results of the effort to Cure Hodgkin's Lymphoma I had neck and full mantle radiation. Mine was done in 1963 and I've been told by professionals it was much cruder in those days... so my stats might not apply. I am just now noticing difficulty swallowing.. pain in the neck, and shoulders but hey its been 45 years, and I have a seperated clavicle, and half my neck is gone. Muscle and all. I blame it on not working out like I use to, but it probably was all the surgery and radiation.0 -
yes I have balance issuesbirdgray said:Yes, to all the above and more
Hi Im a 22yr survivor from 3A NS Hodgkins, I had my spleen removed and had total lymph node radiation including liver (18 wks total). I have all the above thyroid, lung, heart, neuropathy, dry skin, I drink water like a fish im sure my inside are just as dry, ringing in the ears, they tell me my spine is deteriorating, pain in back and legs,yes you name it. But what I dont see is balance on anyones list of things. I have been past from doctor to doctor and Im tired of the end result. "ITS BECAUSE OF THE RADIATION" . I am having trouble with balance, I would never pass a sobriety test, and I don't drink. LOL
Yes I am thankful for each day given, if anyone has balance problems let me know
Hi-
I never thought about it before, but I do have balance issues. I never thought that it was do to having Hodgkin's disease when I was 16, I'm 42 now. I can be very clumsy and run into things. A few times, I just fell for no apparent reason. I started thinking i had some other disease, like M.S. or something. The other issues that I've had are thyroid,heart,bladder, stomach and teeth. I wish I knew then, what I know now of the disease Hodgkin's. I never got the medical records of the time I had it, so I'm not sure of the extent of it, except that it was stage 2 and my neck and chest were radiated. God bless you in your own journey and thanks for mentioning the balance issues.0 -
Balanceblessed09 said:yes I have balance issues
Hi-
I never thought about it before, but I do have balance issues. I never thought that it was do to having Hodgkin's disease when I was 16, I'm 42 now. I can be very clumsy and run into things. A few times, I just fell for no apparent reason. I started thinking i had some other disease, like M.S. or something. The other issues that I've had are thyroid,heart,bladder, stomach and teeth. I wish I knew then, what I know now of the disease Hodgkin's. I never got the medical records of the time I had it, so I'm not sure of the extent of it, except that it was stage 2 and my neck and chest were radiated. God bless you in your own journey and thanks for mentioning the balance issues.
Sorry you were never able to receive your records; you were so young I couldn’t imagine how scared you were when they told you had cancer. I was in my early twenties and had two young boys; I remember it like it was yesterday. I never placed the balance to Hodgkin’s before I thought I was crazy or something. At least that’s how the doctors made me feel. I fell a few times, I drop things and when I told the doctor how I was feeling like something was wrong and I don’t know what. He said, “Are you sure you just aren’t depressed” I have learned to live with it, until now. I can’t walk a straight line; I feel like I’m falling more often and it scares the heck out of me. I just sent my test to the Oncologist who treated me 22yrs ago he has offered to look them over. It I find out something I will post it, together we can make a difference together we all know we have something in common together we can make the doctors listen.
thanks for the post
Bird0 -
I am 15 years post treatmentbirdgray said:Yes, to all the above and more
Hi Im a 22yr survivor from 3A NS Hodgkins, I had my spleen removed and had total lymph node radiation including liver (18 wks total). I have all the above thyroid, lung, heart, neuropathy, dry skin, I drink water like a fish im sure my inside are just as dry, ringing in the ears, they tell me my spine is deteriorating, pain in back and legs,yes you name it. But what I dont see is balance on anyones list of things. I have been past from doctor to doctor and Im tired of the end result. "ITS BECAUSE OF THE RADIATION" . I am having trouble with balance, I would never pass a sobriety test, and I don't drink. LOL
Yes I am thankful for each day given, if anyone has balance problems let me know
I am 15 years post treatment and have had balance problems for years always blamed chemo but didn't really know for sure . I have several issues that I have read about on this sight and have been to several Dr's (speciaists ) about them and when I ask if it could have been from chemo they say no it is stress you need a shrink. I have been thinking I'm crazy( so has my family). When I started reading about these things I cried because I realized I'm not crazy afterall and finally i know there are people out there that understand what I feel like. The chemo brain I knew nothing about it I just thought I was stupid or something.0 -
Hi Mike,
I had full body
Hi Mike,
I had full body radiation in February.
I lost 80% of my hearing but, don't really know that it was the radiation that caused it, I suppose it could have.
Whatever, I now have hearing aids and have never heard this well before in my entire life. Small price to pay if it was caused by the radiation, but I suspect it was the Artillery from the service that was the culprit, perhaps aggravated by the rads.
DennisR0 -
Hi there!!awgarner said:hypothyroidism
I am a 17 year survivor of 2a Hodgkin's and received MOPP and mantle radiation. I have experienced some of the late effects such as difficulty swallowing, pain in neck and shoulders and lung damage. I also had a prophylactic double mastectomy in 2005 because of the increased risk of breast cancer--since I was diagnosed when I was 17. I've taken synthroid for years, but now I am so exhausted all the time. I have read alot about t3 and t4 levels when testing thyroid function. Does anyone get comprehensive thyroid testing including t3 tests. Also, is there anything I can do for the decreased lung function? My late effects doctor just blows me off when I ask.
I too was
Hi there!!
I too was diagnosed with Hodgkin's disease when I was 17 and I am 35 now!! Have hypothyroidism and I am going to the doctor's wednesday to see if I can get my breast tissue taken out as a preventive. This will be the second year that they see images on the mammogram and I am sick of the biopsies....Sounds like we are at high rish for breast cancer..might as well act now....I get comprehensive thyroid tests every six weeks.....my doctor has no clue about our disease and it is very frustrating....knowing I have to talk to her wednesday should prove to be interesting!! Hope you are feeling better!
Sherry0 -
I am a survivor of 17QRX 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!
I am a survivor of 17 years....35 years old...and yes, I am finding out that the treatment that saved my life is now proving to make my life difficult BUT, I am happy to be here!! I am married and have two beautiful boys and look to the future....going in Wednesday to talk about preventive breast removal..... a pain in the @!@ but what can you do!! I am educating myself the best I can. Thanks to all of you for your posts about your lives....it really gives me strength that I am not alone on this journey!!!0 -
dawgarner said:hypothyroidism
I am a 17 year survivor of 2a Hodgkin's and received MOPP and mantle radiation. I have experienced some of the late effects such as difficulty swallowing, pain in neck and shoulders and lung damage. I also had a prophylactic double mastectomy in 2005 because of the increased risk of breast cancer--since I was diagnosed when I was 17. I've taken synthroid for years, but now I am so exhausted all the time. I have read alot about t3 and t4 levels when testing thyroid function. Does anyone get comprehensive thyroid testing including t3 tests. Also, is there anything I can do for the decreased lung function? My late effects doctor just blows me off when I ask.
d0 -
Hi there!! Does anyone knowDennisR said:Hi Mike,
I had full body
Hi Mike,
I had full body radiation in February.
I lost 80% of my hearing but, don't really know that it was the radiation that caused it, I suppose it could have.
Whatever, I now have hearing aids and have never heard this well before in my entire life. Small price to pay if it was caused by the radiation, but I suspect it was the Artillery from the service that was the culprit, perhaps aggravated by the rads.
DennisR
a0 -
Hi,bethmad said:I had Hodgkins in 1982 and
I had Hodgkins in 1982 and was treated with radiation for 8 weeks, 5 days a week (I was stage IIA), but at the time they did full mantle radiation. It was the old days and the radiation was pretty generalized. Anyway only recently I've been thinking of getting my hearing checked. Prior to this I haven't had hearing problems, and even now I hear pretty well.
I had Radiation in 1982
Hi,
I had Radiation in 1982 for HD also 8 weeks. There also took my spleen out for staging.
Just this past month they found a mass in my groin and other areas. Said it has probably been there for some years.
After 27 years I though I was in the clear.0 -
27 years ago I had HD andcher26bear said:Hi there!!
I too was
Hi there!!
I too was diagnosed with Hodgkin's disease when I was 17 and I am 35 now!! Have hypothyroidism and I am going to the doctor's wednesday to see if I can get my breast tissue taken out as a preventive. This will be the second year that they see images on the mammogram and I am sick of the biopsies....Sounds like we are at high rish for breast cancer..might as well act now....I get comprehensive thyroid tests every six weeks.....my doctor has no clue about our disease and it is very frustrating....knowing I have to talk to her wednesday should prove to be interesting!! Hope you are feeling better!
Sherry
27 years ago I had HD and receive Rad for 6 weeks, chest, neck. My spleen was removed also.
I wish I was told of late term effects. I have had them all. Cancer of the skin, throat, lung issues. Final 6 years ago my doctor said I was cured and did not need any more CT's.
My skin started to itch about 4 years ago and I was told it was nerves.
2 weeks ago I pushed to have another CT and they found a couple of masses.
Turns out it is a rare form of HD NLPHL. Turns out I might have been able to catch this years ago if I had not though I was cured, and had looked for late term effects.0 -
Dear tarheis,tarheis said:1991 treatment
I was treated in 1991 with MOPPABVD for stage 4A. I do have hearing loss didn't know if it was from the chemo or the radiation. The biggest problem I have is a chronic pain in my chest wall. It is there day and night and sometimes worse than others they tell me it is from the amt of radiation received? Anyone experience the same thing? I have tried various pain Dr's and can't get relief?
My mother also have lymphoma and doctor has given her ABVD 5 cycle rest of cycles are pending which need to be done,
About chest pain and all its all the chemotherapy treatment effect if u r getting ABVD here a medicne which is Adriamycin which basically caused of chest pain the same medicine combinatino found in the CHOP treatmant also.
about hair loo that becoz of chemotherapy.
my mother also is loosing her hair.
ALL the Best .
GOD BLESS YOU,
Thanks
Neha Arora0 -
Dear tarheis,tarheis said:1991 treatment
I was treated in 1991 with MOPPABVD for stage 4A. I do have hearing loss didn't know if it was from the chemo or the radiation. The biggest problem I have is a chronic pain in my chest wall. It is there day and night and sometimes worse than others they tell me it is from the amt of radiation received? Anyone experience the same thing? I have tried various pain Dr's and can't get relief?
My mother also have lymphoma and doctor has given her ABVD 5 cycle rest of cycles are pending which need to be done,
About chest pain and all its all the chemotherapy treatment effect if u r getting ABVD here a medicne which is Adriamycin which basically caused of chest pain the same medicine combinatino found in the CHOP treatmant also.
about hair loo that becoz of chemotherapy.
my mother also is loosing her hair.
Please feel free to contact at my mail id neha.iftm@gmail.com
ALL the Best .
GOD BLESS YOU,
Thanks
Neha Arora0 -
Mantle radiotheraphy - COBRAmolly12 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 ?
To Molly12
I understand. I am grateful to have gotten through the Hodgkins; however, if I had known about these side effects (mainly aortic stenosis) I am sure I would have prepared better. I had to leave work last year. I was approved for SSDI; however, it is not quite enough to live comfortably on - plus I am having to pay for COBRA out of that because Medicaid informed me that my income was $20 over the limit. So I am now paying COBRA payments - because I am afraid to NOT have health isurance. I got excited when I heard about the recent COBRA subsidy; however, the benefits included persons who were terminated from their job on September 1, 2008 and I was terminated August 31, 2008!!!!
I found out that I am not eligible to get Medicare until next September 2010 (2 years on SSDI).
Did you find out anything about 'has anyone ever looked at compensation?' Please reply to me at bbbdirector@yahoo.com. Thanks0
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