Anyone with heart problems?

tkesser
tkesser Member Posts: 1
edited March 2014 in Childhood Cancers #1
I am a 30 year old survivor of Ewings Sarcoma. Have been in remission for 18 years. Shortly after I was diagnosed with a tumor in my left arm at age 9, we found that it had spread to my lungs - and the doctors told us I had 6 months to live. Since normal treatment wasn't working, we signed on for experimental treatments including Adriamiacin C. As you probably all know, Adriamiacin is now known to have serious implications on the heart. However, I was declared cancer free at the age of 12, and have since gone on to marry and have 2 beautiful (and thank God, HEALTHY children). Last year I was hospitalized (after an ambulance trip to the emergency room) with Congestive heart failure. I have since been diagnosed with Dilated cardiomyopathy with chronic congestive heart failure - and next week am unfortunately meeting with a heart transplant team to begin pre-transplant evaluation. It has come to my cardiologist's attention (after many discussions with my pediatric oncologist) that although it has been 20 years since my treatments, the chemotherapy is a direct factor is the rapid deterioration of my heart. To say that I am scared is putting it midly. I am looking for anyone else who may have experienced similar circumstances? Having a heart transplant seems like such a huge thing.......and I am worried about my children.......but, mostly - since I thought that this was all behind me after 20 years.....I now wonder "what next?" Looking forward to chatting. THANK YOU! (Please excuse my terrible spelling!)

Comments

  • frantik
    frantik Member Posts: 20
    #2
    Hi T:
    I am sorry to hear that you are experiencing trouble with your heart after all these years. I have sent you a personal message, but wanted to send a note to you here as well--there are quite a few people out there like you with heart trouble many years after cancer treatment. I was not treated with Adriamiacin C myself, as it was not the common course of treatment for the childhood cancer I had. However, I do know of some people personally who are in the same boat as you are. I would encourage you to access this group of folks through the ACOR list: http://listserv.acor.org/archives/lt-survivors.html

    It is important that you involve a physcian in your care who is knowledgeable about late effects. It not only will impact your ability to get a good diagnosis, but may also impact the appropriate course of treatment. You can access a list of long-term follow-up clinics here:
    http://www.patientcenters.com/press/follow-up.clinics.html

    Take care and best of luck.
  • lindazame
    lindazame Member Posts: 46
    #3
    Hi,
    Yes, there are lots of survivors with heart problems, some caused by chemo some by rads. I don't like to post too much here about my medical history because of the public nature of these boards..anyone can read. There is a more private forum where you can meet and talk with other survivors of childhood cancer. Here is the URL to join that discussion list. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1

    http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1

    Or write to me directly (zame@earthlink.net) and I wil tell you about my experience with heart failure and moving towards heart transplant. I also can recommend some books and some late effects clinics where you may want to be seen for evaluation.
    Please feel free to contact me,
    Linda Zame
  • Aquagirl18
    Aquagirl18 Member Posts: 45
    #4
    Hi I am 23 years old and I have cardiomyopathy. I had neuroblastoma when I was 13 months old. I am not 100% sure but I think I was given Adriamiacin as well,(as one of my treatments) and my heart went into heart failure from my treatments. I am cancer free today but I think Adrimiacin was what may have caused my heart problems. I don't know many people with heart problems and I hope that everything works out for you. My doctors have told me for years that since I have been on Coreg I will only need a transplant if something happens to my heart to change my condition. I am glad to hear that so many people here are so caring and that many people here have their cancer in remission. I am very scared about heart transplants so you are not alone I am sure many people are. I offer you my support. I don't know many people with heart problems and I know how hard it is to live life with congestive heart failure.
  • Aquagirl18
    Aquagirl18 Member Posts: 45
    #5
    Hi I am 23 years old and I have cardiomyopathy. I had neuroblastoma when I was 13 months old. I am not 100% sure but I think I was given Adriamiacin as well,(as one of my treatments) and my heart went into heart failure from my treatments. I am cancer free today but I think Adrimiacin was what may have caused my heart problems. I don't know many people with heart problems and I hope that everything works out for you. My doctors have told me for years that since I have been on Coreg I will only need a transplant if something happens to my heart to change my condition. I am glad to hear that so many people here are so caring and that many people here have their cancer in remission. I am very scared about heart transplants so you are not alone I am sure many people are. I offer you my support. I don't know many people with heart problems and I know how hard it is to live life with congestive heart failure.
  • elizabeth4567
    elizabeth4567 Member Posts: 4
    #6
    Aquagirl18 said:

    Hi I am 23 years old and I have cardiomyopathy. I had neuroblastoma when I was 13 months old. I am not 100% sure but I think I was given Adriamiacin as well,(as one of my treatments) and my heart went into heart failure from my treatments. I am cancer free today but I think Adrimiacin was what may have caused my heart problems. I don't know many people with heart problems and I hope that everything works out for you. My doctors have told me for years that since I have been on Coreg I will only need a transplant if something happens to my heart to change my condition. I am glad to hear that so many people here are so caring and that many people here have their cancer in remission. I am very scared about heart transplants so you are not alone I am sure many people are. I offer you my support. I don't know many people with heart problems and I know how hard it is to live life with congestive heart failure.

    Hi. I am a 35 year survivor of Hodgkins Disease and I have heart problems. I have restrictive cardiomypathy causing my Congestive Heart Failure. I was treated with radiation only, no chemotherapy. The doctors tell me that the radiation did the damage even though it didn't show up until I was 29 years out from treatment. I was fortunate when my problems started to get connected to a discussion list of other cancer survivors on the Internet that shared their common experience. Heart problems is a common late effect from both radiation therapy and chemotherapy. The discussion list is called Long Term Survivors at http://listserv.acor.org/archives/lt-survivors.html
    Besides good information on doctors skilled in late effects, I gained a great deal of loving support from the other members there. If you want to find more survivors with heart problems, I hope you will come and join us.
  • jerseyjerry
    jerseyjerry Member Posts: 1
    #7
    i am a 29 yr old male and i too had EWING'S SARCOMA at age 9. about 2 yrs ago i was also diagnosed with congestive heartfailur. it sounds like everything you went through is the samething i did. I was not as lucky, i am not able to have kids due to me cancer.My cardiologist/ transplant doctor is at Temple Hospital in Philadelphia. since my heart and lung problems came about i lost everything. I was put on permant disability and lost my job. i lost my home, cars, friends, all my money i ever saved. and my wife and step daughter now have to live with my parents in a small house.i have been trying to find a program to help me buy a house and also a mortgage that wortks with the disabled. i have not had the chance to speak to to someone who has had the same cancer and the same effects of the heart before. i would like to talk more. if there is anyone out there who will talk and/or can help me out that would mean the world to me. I sometimes feel like iam going nuts, or just giving up altogether. hopefully someone can help. i live in new jersey about 15 min. from Philly.
    thanks
    jerry
  • lindazame
    lindazame Member Posts: 46
    #8
    jerseyjerry said:

    i am a 29 yr old male and i too had EWING'S SARCOMA at age 9. about 2 yrs ago i was also diagnosed with congestive heartfailur. it sounds like everything you went through is the samething i did. I was not as lucky, i am not able to have kids due to me cancer.My cardiologist/ transplant doctor is at Temple Hospital in Philadelphia. since my heart and lung problems came about i lost everything. I was put on permant disability and lost my job. i lost my home, cars, friends, all my money i ever saved. and my wife and step daughter now have to live with my parents in a small house.i have been trying to find a program to help me buy a house and also a mortgage that wortks with the disabled. i have not had the chance to speak to to someone who has had the same cancer and the same effects of the heart before. i would like to talk more. if there is anyone out there who will talk and/or can help me out that would mean the world to me. I sometimes feel like iam going nuts, or just giving up altogether. hopefully someone can help. i live in new jersey about 15 min. from Philly.
    thanks
    jerry

    Hi Jerry,

    Do you know about the clinic for long term suvivors in Philadelphia? The will cerainly be helpful with your health problems and may have some referrals for help with your social problems. They are one of the best clinics in the country for surivvors and have seen a lot and know a lot about the kind of problems we face both physical and social. The contact person at CHOP is Wendy Hobbie. If you want more information please feee free to ocntact me directly. (zame@earthlink.net)
    Linda Zame
  • mike3892002
    mike3892002 Member Posts: 6
    #9
    I am a 20 year survivor of e-sarcoma. I had it on my ribs, near my nipple, when I was 15. 2 years ago, I picked up a virus, had a high fever, then started getting chest pains. I have chest pains even today. I am told there is nothing they can do about it. The virus damaged my heart. Please email me at mike3892002@yahoo.com

    Mike
  • Maragardne
    Maragardne Member Posts: 3
    #10
    Oh my GOSH---you and i have a bunch in common. I'm 34 years old and am a 24 year survivor of Ewings Sarcoma as well. Although mine did not spread to my lungs, but i had multiple orthopedic issues throughout. I now have a titanium femur,knee and hip. I also have CardioMyopathy, they found out during my pregnancy. I delivered a beautiful baby boy and he is perfect. My ejectionfraction is back up to 40% but was as low as 25%. I've noticed that i am having difficulty dealing w/this, after everything else. Gosh i hope you write back... i would love to chat/email with you about this. Mara
  • Unknown
    Unknown
    #11
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