did anyone out there come down with long term effects????

Helen Caruso
Helen Caruso Member Posts: 11
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
i am 13 years stage 4 hodgkins free and so far the only longterm effect i came down with was an under active thoyroid which the radiation killed...i am at high risk for alot of long term complications like heart disease, breast cancer, thyroid cancer etc..i was just wondering how many people actually did come down with complications?

Comments

  • cathyp
    cathyp Member Posts: 376 Member
    #2
    LT effects
    Hi Helen,

    Congrats on your 13 years!

    Have you found the "Long-Term Effects of Treatment" discussion board on CSN?
    http://csn.cancer.org/forum/169

    Also at ACOR.org, you can join a mailing list for LT Survivors at
    http://www.acor.org/mailing.html?l=l
    This is where I found the information on Long Term Effect Specialists and Clinics. I currently see a LT Effect SPecialist at MSKCC.

    I have hypothyroidism, heart disease and was dx'd w/breast cancer. Pulmonary problems, lung cancer, skin cancer, colon cancer, thyroid cancer and radiation fibrosis syndrome etc are some of the LT problems that may crop up.

    I too would like to know how many survivors have had problems and more imporantly, how many have not. When you read these discussion boards, it is very informative and powerful. You need to manage the reality of the LT effects and monitoring for them and trying to live as normal a life as possible.
    Continued good health to you,
    Cathy
    HD 1989 - Rads
    HD 1994 - ABVD
    IDC, BC 2008 - DMX
  • Helen Caruso
    Helen Caruso Member Posts: 11
    #3
    cathyp said:

    LT effects
    Hi Helen,

    Congrats on your 13 years!

    Have you found the "Long-Term Effects of Treatment" discussion board on CSN?
    http://csn.cancer.org/forum/169

    Also at ACOR.org, you can join a mailing list for LT Survivors at
    http://www.acor.org/mailing.html?l=l
    This is where I found the information on Long Term Effect Specialists and Clinics. I currently see a LT Effect SPecialist at MSKCC.

    I have hypothyroidism, heart disease and was dx'd w/breast cancer. Pulmonary problems, lung cancer, skin cancer, colon cancer, thyroid cancer and radiation fibrosis syndrome etc are some of the LT problems that may crop up.

    I too would like to know how many survivors have had problems and more imporantly, how many have not. When you read these discussion boards, it is very informative and powerful. You need to manage the reality of the LT effects and monitoring for them and trying to live as normal a life as possible.
    Continued good health to you,
    Cathy
    HD 1989 - Rads
    HD 1994 - ABVD
    IDC, BC 2008 - DMX

    wow how long after
    wow how long after treatments did you come down with these effects?? the only thing i came down with so far is hypthroidism also.. but i am at high risk for heart disease, breast cancer, skin cancer and of course thryoid cancer loll.. i have all these tests coming up this week i have to go get my heart checked out and my bones and thyroids. but thank you for that information i will check those sites out for sure. but right now im having a heard time dealing with the long term effects from the treatments...i dont want to go through anymore then what i already had! im tired of worrying of what if and worry baout my thyroid. its hard and not to many people understand so it makes me feel even worse!
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #4
    Hi Helen
    I seen you over at the Health Boards and read some of your postings. You seem very informed and have a lot of helpful advise. I just wanted to come by and say Hi. I'm new to this board. I was diagnosed and treated for stage4 Hodgkins and have been in remission 9 years. I have had some recent health scares and am seeing docs and waiting for tests to see if it has reared its ugly head again. But I wanted to say that yes I've had some affects from chemo (never had radiation)... I'm Hypo Thyroid, but my doc believes that the chemo did not not cause this. I was thrown into early meno at age 35 so I've been battling those symptoms for years (not fun)! I've just this past year have been having cramping and some bubbling feelings in my calfs. They also feel that I may be developing Fibro. The Neuro believes it could be late affects of chemo. She said chemo has a way of doing things to us even after years out from our last chemo treatment. I think that all of us will deal with things for the rest of our lives. Its just one of those unfortunate things we must deal with, but looking at the fact that we are still here is a much greater blessing and what we endured was well worth it. I hope that made sense. Take Care ~ Andrea
  • AnnetteM
    AnnetteM Member Posts: 2
    #5
    Hodgkin's in 1984. I was 6
    Hodgkin's in 1984. I was 6 months pregnant. My daughter is now 26. Last week I was told I have breast cancer. I was treated with radiation only for stage 2b hodgkin's. It never came back. Doctors are telling me they believe this breast cancer is most likely the cause of the radiation I recieved 26 years ago. Studies have shown 1 in every 4 have gotten breast cancer when treated with high dose of radiation. They don't do that now. But I can't complain. I was there to raise my daughter and I loved ever min. of it. Tomorrow I will know more. I guess the best advice I can give you is see a doctor reg. Have mamograms done. I thought I served my time, but here we go again. God was there last time. I know he will be there every step this time. Bummer though. I still can't believe it.
    Keep your chin up. Can't change things. So happy that you beat it.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #6
    AnnetteM said:

    Hodgkin's in 1984. I was 6
    Hodgkin's in 1984. I was 6 months pregnant. My daughter is now 26. Last week I was told I have breast cancer. I was treated with radiation only for stage 2b hodgkin's. It never came back. Doctors are telling me they believe this breast cancer is most likely the cause of the radiation I recieved 26 years ago. Studies have shown 1 in every 4 have gotten breast cancer when treated with high dose of radiation. They don't do that now. But I can't complain. I was there to raise my daughter and I loved ever min. of it. Tomorrow I will know more. I guess the best advice I can give you is see a doctor reg. Have mamograms done. I thought I served my time, but here we go again. God was there last time. I know he will be there every step this time. Bummer though. I still can't believe it.
    Keep your chin up. Can't change things. So happy that you beat it.

    So sorry..
    Hi,
    I'm so sorry about your dx of breast cancer. I hope all will turn out good. Keep thinking positive..prayers for you.
    Best wishes...Sue (FNHL-2-3A-6/10)
  • bluerose
    bluerose Member Posts: 1,104
    #7
    23 year survivor here, lots of late effects
    Hello. You have to realize that when looking at long term effects of treatments many procedures could well have changed over the years. For instance I had a bone marrow transplant for non hodgkins lymphoma 21 years ago and at that time they were just starting to do that type of transplant for NHL patients, previously they only did them for leukemia patients. Also stem cell transplants were just starting to be used as well. Too they did total body radiation with them then and I have heard that they don't do total body radiation as much anymore. Reason for that, for one thing, is too much damage. I can attest to that in side effects.

    Also you have to keep in mind that everyone is different in how their bodies handle disease or treatments too, some don't seem to have as many side effects as some do given even the same treatments for the same diseases. Depends on stages of disease and so many other things. So if one person has a ton of late effects that doesn't mean that you will have them too, I'm sure you know that. Also they have come a long way in 20 odd years of reducing collateral damage from chemo, that drug some of you take called Rituxin seems to target more effectively so that will cut down on damage and hopefully side effects.

    As for me I have: heart damage from a certain chemo drug resulting in a pacemaker implant a few years ago, heart arythmia (atrial fibrulation), lung damage from chemo drugs and rads, edema from lymph node removal, respiratory issues from the lung damage - that seems to be getting better but took 18 years to do that, early arthritis from the rads, hypothyroidism from treatments, nerve damage - legs especially from treatments, fibromyalgia - suspected from treatments, extreme tearing of the eyes, thinning hair in cycles thought to be from trauma of treatments, extreme back pain from the arthritis - puts me in a wheelchair sometimes and I am on daily morphine for that pain, chronic fatigue - never rested, chronic pain all over, bursitis. Anxiety issues/panic attacks now and then plus aspects of post traumatic stress syndrome. My marriage failed as well brought on by the added stressors of my illness and subsequent disability, long term. It wasn't of course the only reason the marriage failed but it didn't help. Lots of statistics out there on a big percentage of failed relationships due to the stressors of cancer. Now being followed for gynacological cysts to make sure that doesn't develope into anything scarey - so far so good there but always stressful to go for results of the follow ups of course.

    Other than that, no problem. lol.

    But that is just me and I had my treatments long ago. Today there is so much more help for emotional issues dealing with cancer and that is a big advancement all by itself. 20 years ago there was little support and at that time they werent aware of the long term effects of treatments like they are today so they are advancing.

    Hope you do well and don't have to worry about long term effects. Remember, just because someone has a long term effect even though they might be similar in case to yours doesn't mean you will necessarily have them too.

    Blessings,
    Bluerose

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