Long Term Survivorship Issues

hodgkoid2003
hodgkoid2003 Member Posts: 94
Blue Roses (and everyone else),

I spent all day yesterday at Sloan Kettering with my late effect doc. Now as I recall from the last visit with him, the mention of "chemo brain" brought out a response of not really with survivors, but rather with those during treatments. Now, I can tell you that as far back as 10 years ago, I remember reading literature about chemo brain, so I thought this was odd.

But, since my heart surgery last year, and last visit with MSK, I've learned how other body functions affect how the brain works. And that includes the simplest of tasks, breathing. Certain breathing patterns can affect the oxygen to the brain from too shallow a breath, to too deep, to too rapid and such. Heart rate, blood pressure, and even meds can have an impact.

The thing that I have learned from these two visits with the doc at Sloan, was exactly how the radiation and chemo not only could affect me, but has affected me. And to listen to him, there is truly an advantage to dealing with someone in late effects.

Though I know you are from Canada, the doc threw out a somewhat disheartening statistic, and perhaps the % could apply up north, or across the pond. The US has over 300,000 long term survivors out of over 300 million people. So, you can see how rare we are.

Last year, there was a television program called "Stand Up" which was committed to cancer. They did give a small blurp to survivors, but no where near what is needed.

On a personal note, prior to seeing the late effects doc, I knew I had thyroid issues, hair loss (from rads), infertile and then found out about my heart. Well, after more tests, I have pulmonary restrictive disease, concerns with the lower left compartment of my heart, beginning stages of oeseoperosis in my spine(from the prednisone of my treatment), some muscle loss and something that was referred to as radiation-induce fibrosis (still getting familiar with that one). I've got a bit of drooping head from muscle loss in my neck.

I personally know so many who have been dealing with just as severe or worse symptoms. I am relatively new to this stage, but unlike my first appointment, I was much more at east because of the amount of time that was spent with me actually explaining.

BlueRoses, I am several email lists. Where in Canada are you located? I would be willing to tap into those lists for any fellow Canadians that could offer you some direction to find someone who will believe you. I will tell you that I believe you. I also believe that if you believe, then you should push. Don't like the answer, push further and harder.
What other concerns do you have? There are certain guidelines that have been established to follow up on us. And it should not be unheard of to ask your family physician to order tests like nuclear stress tests and such. Depending on when and how much treatment you received, could show some sort of effects, and then you can go from there.

It was over 19 years ago, I was told I was done being treated for Hodkgin's Disease, but today, to the day, a year ago, I woke up in ICU with a life-saving double bypass. So, along with learning to deal with emotions I felt I never had, I am learning so much about what has happened, what could happen, and how to manage all of it.


Paul E. (Hodgkoid2003)
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Comments

  • Fran-HD
    Fran-HD Member Posts: 12
    Amazing what we now have to deal with-isnt it
    Paul I enjoyed reading your latest post. I have learned so much over the past few months about long term effects. I got the link to long term effect clinics and went on it. I am in Georgia and there was one listed in Atlanta but the number has been disconnected so am trying to track it down another way.
    I bought Keenes survivorship book and have read several sections. It is a great book. There is so much that I did not know but my eyes have been opened now. It talks about knowing how much treatment you received. I do not think that still exists for me. It was 30 years ago and the information does not exist anymore. My parents were not savy enough to get and keep that information for me.
    I am going to try and figure out how to get to a long term effect clinic becuase I think it would be great to have input from someone who knows what to look for. I am surprised that I do not have any heart problems with all the info I have seen on that but I am glad I do not. It is bad enough that my esophagus has stopped working and am having a lot of eating issues and they say it is radiation related.
    I am being schedules for IVIG in the next week or so. Have you or anyone else had it before. Am kind of anxious about possible side effects. They are trying to give my system a boost to see if it will improve muscle activity and get the esophagus to work.
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    Fran-HD said:

    Amazing what we now have to deal with-isnt it
    Paul I enjoyed reading your latest post. I have learned so much over the past few months about long term effects. I got the link to long term effect clinics and went on it. I am in Georgia and there was one listed in Atlanta but the number has been disconnected so am trying to track it down another way.
    I bought Keenes survivorship book and have read several sections. It is a great book. There is so much that I did not know but my eyes have been opened now. It talks about knowing how much treatment you received. I do not think that still exists for me. It was 30 years ago and the information does not exist anymore. My parents were not savy enough to get and keep that information for me.
    I am going to try and figure out how to get to a long term effect clinic becuase I think it would be great to have input from someone who knows what to look for. I am surprised that I do not have any heart problems with all the info I have seen on that but I am glad I do not. It is bad enough that my esophagus has stopped working and am having a lot of eating issues and they say it is radiation related.
    I am being schedules for IVIG in the next week or so. Have you or anyone else had it before. Am kind of anxious about possible side effects. They are trying to give my system a boost to see if it will improve muscle activity and get the esophagus to work.

    Radiation Related
    Fran,
    I have read, and read, and re-read this last post from you. And between my two visits at Sloan Kettering, and the book... and this is hard for me to say, because in all my years of counseling cancer patients, not once did I ever give medical advice. But, if they feel your esophagus issue is radiation-related, wouldn't it only make sense for them to research more before going the treatment round with you. For instance, my doctor at Sloan specializes in Hodgkin's and its late effects. And explains everything to me in very plain terms about the why's, the what to do's, and so on.
    I'm a big believe in the "can't hurt" approach. But if it is possible, try to reach out to Dr. Oeffinger at Sloan Kettering or Dr. Steven Hancock at Stanford U. Though not their patient, there is a possibility that they might be able to shed some light on your situation. Or if you're not able to, push for your doctor to do it.
    The problem is that there are so few survivors of cancers, let alone those who live long enough to develop late side effects, but there are even fewer doctors who are knowledgable to deal with them.
    Knowing the worst that could happen is that you can't get an answer simply because you're not being seen by them, best case scenario is that your doctor could just get the education he needs to deal with you as mine has. And knowing the worst and best, makes it more possible to deal with everything in between.
    Fran, I have been reluctant to reveal everything that has been discussed about all my side effect because I don't want anyone overwhelmed. But you know what, I am actually okay with everything I've been told, because I'm convinced that at the very worst, they will help me at least manage them and that prevents a lot of fear. In fact, it is more of a confidence that I have that as the doctor put it "my goal is to see that your daughters get to see you become a grandfather". Hopefully that means like 25 to 30 years from now.
    Fran, if you'd like more info, please email me your email address and I will give you more of an explaination. But if ultimately you must go through the IVIG, then I truly wish you the best. I have no idea what that treatment is or does. If the radiation weren't a factor, in other words, and average person, maybe not a big deal. But as my GP puts it "our cancer history..." Please keep me posted on how you make out.

    Paul E. (Hodgkoid)
  • Fran-HD
    Fran-HD Member Posts: 12

    Radiation Related
    Fran,
    I have read, and read, and re-read this last post from you. And between my two visits at Sloan Kettering, and the book... and this is hard for me to say, because in all my years of counseling cancer patients, not once did I ever give medical advice. But, if they feel your esophagus issue is radiation-related, wouldn't it only make sense for them to research more before going the treatment round with you. For instance, my doctor at Sloan specializes in Hodgkin's and its late effects. And explains everything to me in very plain terms about the why's, the what to do's, and so on.
    I'm a big believe in the "can't hurt" approach. But if it is possible, try to reach out to Dr. Oeffinger at Sloan Kettering or Dr. Steven Hancock at Stanford U. Though not their patient, there is a possibility that they might be able to shed some light on your situation. Or if you're not able to, push for your doctor to do it.
    The problem is that there are so few survivors of cancers, let alone those who live long enough to develop late side effects, but there are even fewer doctors who are knowledgable to deal with them.
    Knowing the worst that could happen is that you can't get an answer simply because you're not being seen by them, best case scenario is that your doctor could just get the education he needs to deal with you as mine has. And knowing the worst and best, makes it more possible to deal with everything in between.
    Fran, I have been reluctant to reveal everything that has been discussed about all my side effect because I don't want anyone overwhelmed. But you know what, I am actually okay with everything I've been told, because I'm convinced that at the very worst, they will help me at least manage them and that prevents a lot of fear. In fact, it is more of a confidence that I have that as the doctor put it "my goal is to see that your daughters get to see you become a grandfather". Hopefully that means like 25 to 30 years from now.
    Fran, if you'd like more info, please email me your email address and I will give you more of an explaination. But if ultimately you must go through the IVIG, then I truly wish you the best. I have no idea what that treatment is or does. If the radiation weren't a factor, in other words, and average person, maybe not a big deal. But as my GP puts it "our cancer history..." Please keep me posted on how you make out.

    Paul E. (Hodgkoid)

    Help me
    Paul if you have any other information my email is [email protected] I have looked up Dr. Hancock so I think I might shoot him an email and see what he says. I am very concerned about the esophagus issue because it seems to be getting worse and all my docs are just seeming to stab in the dark about what to do. I have seen a speech therapist for swallowing information and am waiting for a referral to nutrition to help put the speech recommendations into ideas about maintaining nutrition and calorie intake.
    Thanks
    Fran
  • blueroses
    blueroses Member Posts: 524
    All I can say Paul is WOW
    So sorry for the delay in this response but this site stopped alerting in email as to new posts and I lost track of the one I made in this site so just stumbled on your reply now. I have a new email address so will send that to you privately if that's okay.

    Sure is refreshing to hear back up from long term survivors. I am lucky to have a GP who has been with me for the last 25 years and backs me up but when push comes to shove it's the specialists who have the final word and as I said before some are less than knowledgeable about our plights. I would love to receive some info from you if would be kind enough to send it to me, or post it here, whichever you like. I have spoken to the Lance Armstrong Adult Onset Cancer Clinic and they have sent me a couple of documents but need my full medical treatment protocols to know just what specifically to advise and since I didn't keep copies of everything it's going to take forever to gather it all I'm sure.

    The part that is so hard for me is when docs, because of poorly informed specialists, start looking at anxiety or depression instead of the root cause of the physical issues I am presenting with, just throw a pie at it and say the symptoms are due to stress. Oh ya I am stressed alright but it isn't the root cause of the symptoms it's BESIDES the symptoms due to this kind of archaic attitude. Yesterday I struggled to make it out to shop for summer shoes, got out but was nearly crippled coming back by my back pain that is worsening daily it seems - and that is on morphine daily. That really scares me because I feel as if a wheelchair is close at hand. I was nauseous waiting for the taxi which seemed days in coming as always happens when one isn't feeling well. I made it but just barely. I have a sitting area in the front lobby of my building and had to rest there before I made it back upstairs to my apartment. When that kind of thing happens I curse the docs who says the pain is 'stress'. Why would docs put me on morphine if they didn't think there was a physical reason? They found arthritis and lower back disc degeneration in my lower back but this one 'rheumatololgist' did no xrays to confirm or not but decided it was stress. Just a sin for this kind of 'consult' to occur.

    You know what I feel like sometimes? I feel like a war vet. I too waged a war with my body through cancer treatments, suffered the trauma physically and emotionally, and now I suffer the results of harsh treatments but am left untreated by those who I thought would be there for me to help me along the way, like some of the war vets are abandoned who suffer from their wounds. Maybe the analogy is too strong but it feels like that to me sometimes.

    I can believe that there are too few of us to validate to the masses of docs but the number is growing as treatments get better and more successful and one day all of this will just be a given - treatments can result in major damage. Hopefully treatments will get so much better that there will be no damage then the clammering for validation will subside.

    I read with interest all the things you were going through and most of it is on my plate as well. Take care Paul and thanks for your post. All the best, Blueroses.
  • blueroses
    blueroses Member Posts: 524
    Chemo Brain
    I forgot to respond to your first paragraph about 'chemo brain'. I have had some worsening memory and cognitive issues of late so have actually had some testing at a memory clinic here in my city. The results won't be in til the end of this month and I still have to have a CT head scan too before that time. Should be interesting.

    One thing I found validating, and a little disturbing at the same time, was that when I first went in for initial testing those running the tests said that they have seen the same kind of issues I am displaying with other long term survivors who have been through treatments. We will see what the results say and I will keep you posted. Blessings, Blueroses.
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    blueroses said:

    Chemo Brain
    I forgot to respond to your first paragraph about 'chemo brain'. I have had some worsening memory and cognitive issues of late so have actually had some testing at a memory clinic here in my city. The results won't be in til the end of this month and I still have to have a CT head scan too before that time. Should be interesting.

    One thing I found validating, and a little disturbing at the same time, was that when I first went in for initial testing those running the tests said that they have seen the same kind of issues I am displaying with other long term survivors who have been through treatments. We will see what the results say and I will keep you posted. Blessings, Blueroses.

    Late Effects vs. Hypochondria vs. Experience/Will To Learn
    On the issue of "chemo brain":

    Back in the late 90's, I learned of this term and actually read articles where supposedly there was credibility to this term. It was a condition that came about, around 10 years or so following chemo. It was a forgetfullness. And being a married male, it became a "get out of jail free card" to a wife who got irritated with me forgetting things, or failing to see obvious things that she felt needed to be done.

    Fast forward 10 years, and after meeting with whom I consider an expert in Hodgkin's, its treatments, and yes, late effects, he has explained to me, that chemo brain is really something that happens during treatments, not after.

    The joke with my family physician, is that the only time that she ever saw me in our 20 years, was if I had a limb falling off. She didn't see me for sniffles, aches and such. She came to my doctor's practice just as I was completing my treatments. Quite a contrast from my mother who also saw her, who had this doctor on speed dial and would call her for an eyelash laying on her pillow.

    I've had what I consider minor lasting side effects from my rads and chemo. But last year, I became aware of so much more, admittedly more than I wanted. And there is, and will be a fine line, between recognizing what is actually wrong, going wrong, and what is just in my head. I learned the hard way last year, making a phone call that I normally would not have about a frequent tightness in my chest. My reputation with my doctor made this a no-brainer for her, order a nuclear stress test. She had no idea what was going to be diagnosed. And even after it was discovered that the artery had been so badly damaged from radiation, and with my knowledge of others with late effects, she still didn't necessarily buy into it.

    My doctor got a phone call, and letters from Sloan Kettering explaining my situation in detail. And it wasn't just about me, but about late effects from treatments especially from Hodgkin's. Today, she has made it clear, and to my knowledge, I am her only Hodgkin's patient/survivor that she is there for me. My file is clearly marked that if I call, or if any medical personnel phone her, she is to be called immediately. It has been explained to her what needs to be done with me, especially not having a spleen (another post). My doctor is young, and knows that there are things about this that can be overwhelming for her. But, and this is huge, though she is not the late effects expert, I know that she is my advocate.

    I must differentiate the difference between a palpitation and a racing and hard heartbeat. I must recognize when I don't stretch that could be why my back aches and not the osteopenia. I need to learn why I am short of breath frequently, which could be my lungs, or my heart. I need to learn, as my late effects doc told me, that it is okay (and expected), that I get fatigued and that I am not being lazy.

    And then that's where message boards and support lists come in. Because that's where we find out we are not alone. There are many of us.

    Paul E. (Hodgkoid2003)
  • blueroses
    blueroses Member Posts: 524
    Fran-HD said:

    Amazing what we now have to deal with-isnt it
    Paul I enjoyed reading your latest post. I have learned so much over the past few months about long term effects. I got the link to long term effect clinics and went on it. I am in Georgia and there was one listed in Atlanta but the number has been disconnected so am trying to track it down another way.
    I bought Keenes survivorship book and have read several sections. It is a great book. There is so much that I did not know but my eyes have been opened now. It talks about knowing how much treatment you received. I do not think that still exists for me. It was 30 years ago and the information does not exist anymore. My parents were not savy enough to get and keep that information for me.
    I am going to try and figure out how to get to a long term effect clinic becuase I think it would be great to have input from someone who knows what to look for. I am surprised that I do not have any heart problems with all the info I have seen on that but I am glad I do not. It is bad enough that my esophagus has stopped working and am having a lot of eating issues and they say it is radiation related.
    I am being schedules for IVIG in the next week or so. Have you or anyone else had it before. Am kind of anxious about possible side effects. They are trying to give my system a boost to see if it will improve muscle activity and get the esophagus to work.

    Hey Fran
    Hope this post finds you having a good day.

    I just wanted to ask you if you are sure that your records from 30 years ago are not around somewhere or are you just assuming it was too long ago? During all my treatments which were 20 years ago I was so caught up in survival mode I didn't even think to ask for my records but I am recalling them now from the hospitals so hopefully will have them soon. The girl in the records department here at one of the hospitals said that since it was so long ago some might be on microfilm and other records on other forms but they have them. I would be very surprised if where you were treated has no records at all. I would ask someone who heads up the hospital where you were treated how to get your back records and I bet you will find them. Even if they have to go rooting around in a dusty hospital record archive I would be stunned if they weren't there.

    All the best with your upcoming tests, you are in my prayers. Blessings, Blueroses.
  • KariAnn
    KariAnn Member Posts: 1
    I am a 5 year HD survivor
    I am a 5 year HD survivor who has late effect neurological and cognitive disabilities due to my cancer treatment. It is very frustrating that not more research has been done to prove that this is an issue for many of us. My regular oncologist is not convinced that my treatments have caused this disability, but my body tells me otherwise. I am a very educated woman and know my body and I know it has drastically changed sinced treatment. I hear you loud and clear.

    Kari Ann
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    KariAnn said:

    I am a 5 year HD survivor
    I am a 5 year HD survivor who has late effect neurological and cognitive disabilities due to my cancer treatment. It is very frustrating that not more research has been done to prove that this is an issue for many of us. My regular oncologist is not convinced that my treatments have caused this disability, but my body tells me otherwise. I am a very educated woman and know my body and I know it has drastically changed sinced treatment. I hear you loud and clear.

    Kari Ann

    5 Year HD Survivor
    Kari Ann,

    First, congrats on maknig the 5-year mark!!! For all of us, this was one of our major milestones (and they only get better).

    Second, it is unfortunate that your onc is dismissing your feelings. Because, it is during the last 5 years, maybe longer, that late effects have finally been garnishing attention. In fact, as more specialists emerge, more efforts are put in to require late effects as a study during their education.

    I would not despair. There are many late effect clinics located all over the US who follow the guidelines of the Children's Oncology Group for follow up care, as well as late effects. No one understands better than we do, what has/is happening to our bodies.

    I "disappeared" over a decade ago, with no diligence to my care. It almost cost me my life last year. And then to find out, it was caused by my treatments for HD 20 years ago, then I was introduced to a whole new world. A world I knew existed, but just as my cancer, a world I didn't want or at the time, needed to recognize.

    I rely heavily on the Long Term Survivor's list on www.acor.org. There are so many people who have been through what I have been and with doctors not being able to tell us, these survivors can tell us that we are not crazy, that things are not in our head. And it is through them, that I came to find my late effects specialist who has helped me deal with what has changed in my body all these years. I would encourage you to check out this list.

    Paul E. (Hodgkoid2003)
  • aramance
    aramance Member Posts: 5
    Long term survivorship effects
    Thank you, Paul for opening up about all of this. I am an 8 year survivor on Large B cell Mediastinal Lymphoma and went through very heavy-duty doses of chemo and radiation. As a 38 year old, I kept thinking I was too young to be an Alzheimer's patient or starting with senile dementia. I used to joke about Chemo Brain to my husband and friends, but I really thought it was just me. Long term side effects seem to be crawling out of the woodworks now after all this time, and I thought I was just being a hypochondriac. My gallbladder function decreased from chemo so severely that I just had it removed. The compressed disc in my neck and the shortness of breath just add to that list.

    Now, with all that being said, I continue to maintain the attitude "that which doesn't kill you makes you stronger." A positive attitude and knowing that I made it through, plus a strong sense of humor about all of it keep me going.

    Thanks for your words and helping keep everyone positive. Maybe those that are going through the hell of treatment now can gain inspiration and support with our words.
  • blessed09
    blessed09 Member Posts: 2
    any long term affects clinics near chicago area?
    Hi-
    I am a long time survivor of Hodgkins disease. I was 16 years old . I am now 42. Where are there clinics near chicago. I am presently ununemplyed, but hope to seek good doctors out again soon.
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    blessed09 said:

    any long term affects clinics near chicago area?
    Hi-
    I am a long time survivor of Hodgkins disease. I was 16 years old . I am now 42. Where are there clinics near chicago. I am presently ununemplyed, but hope to seek good doctors out again soon.

    late effects clinic near Chicago
    Children's Memorial has a long term survivor's program I believe.

    Paul E. (Hodgkoid2003)
  • bbbdirector
    bbbdirector Member Posts: 2
    Fran-HD said:

    Amazing what we now have to deal with-isnt it
    Paul I enjoyed reading your latest post. I have learned so much over the past few months about long term effects. I got the link to long term effect clinics and went on it. I am in Georgia and there was one listed in Atlanta but the number has been disconnected so am trying to track it down another way.
    I bought Keenes survivorship book and have read several sections. It is a great book. There is so much that I did not know but my eyes have been opened now. It talks about knowing how much treatment you received. I do not think that still exists for me. It was 30 years ago and the information does not exist anymore. My parents were not savy enough to get and keep that information for me.
    I am going to try and figure out how to get to a long term effect clinic becuase I think it would be great to have input from someone who knows what to look for. I am surprised that I do not have any heart problems with all the info I have seen on that but I am glad I do not. It is bad enough that my esophagus has stopped working and am having a lot of eating issues and they say it is radiation related.
    I am being schedules for IVIG in the next week or so. Have you or anyone else had it before. Am kind of anxious about possible side effects. They are trying to give my system a boost to see if it will improve muscle activity and get the esophagus to work.

    Long Term Effects Clinic
    I am new to this site. I was treated for Hodgkins IIIB (lympocyte depleted) in 1977. My spleen was removed during the staging process and I received radiation and chemo (MOPP). I was in my mid 20s - I am now 57 and have been having serious problems with my heart for the past few years. I was hospitalized for 10 days about 4 years ago with pneumonia and fluid build up in my lungs. During the past 30 years, recovering from colds has been a major problem. Since then, I have developed asthma. I am in the midst of a cold right now and I am not at home - so I am dreading having to go an emergency room.

    I am writing to ask for the link to Long Term Effects Clinics. I am looking for one in the DC area and in Mississippi.
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94

    Long Term Effects Clinic
    I am new to this site. I was treated for Hodgkins IIIB (lympocyte depleted) in 1977. My spleen was removed during the staging process and I received radiation and chemo (MOPP). I was in my mid 20s - I am now 57 and have been having serious problems with my heart for the past few years. I was hospitalized for 10 days about 4 years ago with pneumonia and fluid build up in my lungs. During the past 30 years, recovering from colds has been a major problem. Since then, I have developed asthma. I am in the midst of a cold right now and I am not at home - so I am dreading having to go an emergency room.

    I am writing to ask for the link to Long Term Effects Clinics. I am looking for one in the DC area and in Mississippi.

    Long Term Effects Clinic
    You can try this:

    http://www.cancersurvivorsproject.org/index.html

    or go to the long term survivor's support list on:

    www.acor.org

    Paul E (Hodgkoid2003)
  • ablue62
    ablue62 Member Posts: 4
    Thanks to all who posted in Late Effects
    All:
    I'm new to this web community but not to Hodgkin's disease. I am 47 years old and had Hodgkin's at 14. Had mantle raditation and a bit of MOPP chemo. Was between stage 2 and 3. I feel so validated after reading of all the late effect issues folks are having. Although I've done some web research on late effects of Hodgkin's...attempting to make sense of abstracts and such...I had NO IDEA that depression and anxiety were so common and the chest pains and breathing issues. I've been tossed from pulmonologist to cardiologist for three years now to try and figure out why I'm so short of breath and have had chest pains, particularly while resting for years. Nothing really shows up on the tests (cardiac cath, echos, TEE) except that I have reduced lung function (I KNEW that). Another issue...the chronic fatigue...well...I've had it for 34 years, disabling fatigue...but have just been told I need to exercise, that "everybody" has fatigue, etc...I stopped saying anything about it because short of explaining that, "NO...I'm actually so tired many days, that I feel it will be my last day alive"...people just don't get it...unless they've been there...like you all have.

    I really need a GP who REALLY understands this stuff and have gone through a few of them...I'm in St. Louis, MO...which has lots of teaching hospitals but I can't seem to find anyone really fabulous. Any help in that area would be appreciated.

    You have no idea how great it is to hear from other survivors and not feel alone! Okay..well, maybe you DO :) You'll be hearing more from me.

    Namaste
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    ablue62 said:

    Thanks to all who posted in Late Effects
    All:
    I'm new to this web community but not to Hodgkin's disease. I am 47 years old and had Hodgkin's at 14. Had mantle raditation and a bit of MOPP chemo. Was between stage 2 and 3. I feel so validated after reading of all the late effect issues folks are having. Although I've done some web research on late effects of Hodgkin's...attempting to make sense of abstracts and such...I had NO IDEA that depression and anxiety were so common and the chest pains and breathing issues. I've been tossed from pulmonologist to cardiologist for three years now to try and figure out why I'm so short of breath and have had chest pains, particularly while resting for years. Nothing really shows up on the tests (cardiac cath, echos, TEE) except that I have reduced lung function (I KNEW that). Another issue...the chronic fatigue...well...I've had it for 34 years, disabling fatigue...but have just been told I need to exercise, that "everybody" has fatigue, etc...I stopped saying anything about it because short of explaining that, "NO...I'm actually so tired many days, that I feel it will be my last day alive"...people just don't get it...unless they've been there...like you all have.

    I really need a GP who REALLY understands this stuff and have gone through a few of them...I'm in St. Louis, MO...which has lots of teaching hospitals but I can't seem to find anyone really fabulous. Any help in that area would be appreciated.

    You have no idea how great it is to hear from other survivors and not feel alone! Okay..well, maybe you DO :) You'll be hearing more from me.

    Namaste

    Thanks to all...
    Ablue,

    First off, it means so much to see someone who has survived the HD beast for such a long time. Even this far out for me, I still look for others who have done it longer.

    Perhaps you might find some answers, as well as a "late effects" clinic near you. Let me assure you, there is a big difference when you are dealing with a doctor who has studied late effects, and knows what you are talking about is real and has seen it enough.

    Here are some links which will be of interest to you:

    www.acor.org (go to mailing list, then look for L, then LT-Survivors)

    http://www.cancersurvivorsproject.org/index.html

    http://www.childrensoncologygroup.org/


    Paul E. (Hodgkoid2003)

    p.s. March 3, 2010 will mark 20 years for me.
  • slickwilly
    slickwilly Member Posts: 334

    Thanks to all...
    Ablue,

    First off, it means so much to see someone who has survived the HD beast for such a long time. Even this far out for me, I still look for others who have done it longer.

    Perhaps you might find some answers, as well as a "late effects" clinic near you. Let me assure you, there is a big difference when you are dealing with a doctor who has studied late effects, and knows what you are talking about is real and has seen it enough.

    Here are some links which will be of interest to you:

    www.acor.org (go to mailing list, then look for L, then LT-Survivors)

    http://www.cancersurvivorsproject.org/index.html

    http://www.childrensoncologygroup.org/


    Paul E. (Hodgkoid2003)

    p.s. March 3, 2010 will mark 20 years for me.

    Happy Holidays Everyone
    Its great to see the long term survivors. I had B-Cell Lymphoma 7 years ago. I have learned to accept fatigue as part of my package. If exercise was the only issue then walking in my snowshoes for a couple miles up and down hills should of cured it. I worked for a couple years after my cancer and it was not unusual to walk 7 miles during my shift. I now require down days and naps. My wife can look at my face and see a nap coming. We can only hope that someday all doctors will be trained in the effects of cancer treatments. But I am thankful for each day I have been given anyway. Best wishes to both of you. Slickwilly
  • ablue62
    ablue62 Member Posts: 4

    Thanks to all...
    Ablue,

    First off, it means so much to see someone who has survived the HD beast for such a long time. Even this far out for me, I still look for others who have done it longer.

    Perhaps you might find some answers, as well as a "late effects" clinic near you. Let me assure you, there is a big difference when you are dealing with a doctor who has studied late effects, and knows what you are talking about is real and has seen it enough.

    Here are some links which will be of interest to you:

    www.acor.org (go to mailing list, then look for L, then LT-Survivors)

    http://www.cancersurvivorsproject.org/index.html

    http://www.childrensoncologygroup.org/


    Paul E. (Hodgkoid2003)

    p.s. March 3, 2010 will mark 20 years for me.

    Glad to be in the Long-Term Survivors Group
    Paul:

    Thanks to your cancersurvivorproject link, I've found two hospitals in St. Louis with Long-Term Effects programs...I'll be calling them on Monday!

    All of your blogs are so informative and serve as such an inspiration and I am so happy to be an inspiration to you also. I have lived with the "HD Beast" (yes...that's how I think of it too) for 34 years. I have a great husband (my third) a 28 year old daughter, an 18 year old son and three grandchildren. I've managed to work full-time all of these years and had been a divorced mother for most of them.

    Had to have my thyroid gland removed about two years ago, had a goiter, not cancer, but it needed to come out. Have had an ovarian cyst removed...while 6 months pregnant with my son, it too, thankfully, was benign. My breathing issues and chest pains have gotten worse over the years and the fatigue...always there. I think I've just learned how to "pace" myself...I try to be good to myself, because I don't "look" disabled...people don't realize how awful I feel sometimes...and that can be frustrating...but I know how I feel...so I trust myself, listen to my body and rest when I need to.

    I'm looking forward to getting to know all of you and the information on this site is incredible...I don't know how I survived this long without it!!!

    Namsaste ~

    Amy
    HD 1976
  • cathyp
    cathyp Member Posts: 376 Member

    Thanks to all...
    Ablue,

    First off, it means so much to see someone who has survived the HD beast for such a long time. Even this far out for me, I still look for others who have done it longer.

    Perhaps you might find some answers, as well as a "late effects" clinic near you. Let me assure you, there is a big difference when you are dealing with a doctor who has studied late effects, and knows what you are talking about is real and has seen it enough.

    Here are some links which will be of interest to you:

    www.acor.org (go to mailing list, then look for L, then LT-Survivors)

    http://www.cancersurvivorsproject.org/index.html

    http://www.childrensoncologygroup.org/


    Paul E. (Hodgkoid2003)

    p.s. March 3, 2010 will mark 20 years for me.

    Thanks for the info
    Paul.
    I'm anxious to find a LT Survivor Specialist in my area. I am close to Philadelphia and NYC. I looked up the clinic at Sloan under the "Cancer Survivors Project" website. They state patient eligiblity as seeing patients up to 30 years old. Do you know if this is still part of their eligiblity?
    Cathy
    PS; 20 years December 9, 2009!!
  • CarolinaGrl
    CarolinaGrl Member Posts: 1
    cathyp said:

    Thanks for the info
    Paul.
    I'm anxious to find a LT Survivor Specialist in my area. I am close to Philadelphia and NYC. I looked up the clinic at Sloan under the "Cancer Survivors Project" website. They state patient eligiblity as seeing patients up to 30 years old. Do you know if this is still part of their eligiblity?
    Cathy
    PS; 20 years December 9, 2009!!

    Late Term Effects
    Hi everyone. My name is Shannon and I was diagnosed with stage IIIB HD in March of 1992 when I was 11 yrs old. I received combination chemo and rad treatment for about 8 months and on November 25 of 2009 I celebrated the 17th anniversary of my last treatmen. I have always know that I am at a higher risk for breast cancer, but it wasn't until I started doing some research on my own that I realized just how many late effects there can be for hodgkins survivors!! For the first 5 years after treatment I was followed by the FACT clinic at MUSC in south carolina where I received my treatments. After that I married into the AF and never thought to try finding another long term follow up clinic. I would just go in once a year and ask for blood work up, thyroid checks, etc. Starting 4 years ago, I have been dealing with progressive joint pain, chronic fatigue, migraines, and just tons of other things. So far my standing diagnosis is Fibromyalgia, but I really think there is more to it. I have been tested for RA and LUPUS but so far nothing. Just this weekend I started doing my own research and was astounded to find that even though it has a high cure rate, that childhood survivors of cancer are at the highest risk for second cancers and late effects. And the fact that I am female and started treatment before I was 12 puts me at the top of that list!! I brought this information to my primary care doc who is great, but I just don't think he has the time or resources to properly manage my care. He agreed and is helping me move my primary care to an internist. This is a great thing for me because since my care is currently on base, my doctor changes about every other year and I feel there is no continuity!! My husband and I just found out we are going to be at our current station in CA for another 4 years so I really want a doc who isn't going anwyhere!! From reading through some of your posts, I discovered the website for cancer survivors and found that there is a long term follow up clinic about 3 hours away. I am starting to think it would be a good idea to try and get a referral to be seen there since they would be familiar with what they are looking for in a HD survivor! Anyway, sorry I seem to have gotten long winded, but it was great to find that I am not the only person who is struggling years after I thought I had won the war!!