hodgkin's disease childhood cancer survivors

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  • dubois
    dubois Member Posts: 6
    edited August 2016 #62
    Active?

    I am surprised to find that my last post of November 2014 is the last post on this board.

    A few weeks ago there was an obituary in my local paper for a person who had succumbed to long-term progressive damage from radiation treatment for Hodgkin's. Doing the math, she received her treatment about the same time as me, mid-70s.

    Wondering if other survivors of that era are still going and how it's going.

    Feels like tossing a bottle in the ocean this time. 

  • tshelnut
    tshelnut Member Posts: 1
    edited June 2020 #63
    Dealing with long term effects.

    Hi, I'm Tracie.  I was diagnosed with hodgkins in 1981 at the age of 11.  I took radiation and chemo.  I now deal with the long term effects of the radiation.  I have had 3 heart attacks, I have 6 stents and had CABG x4.  I just recently had to have Aortic Valve replacement.  I also have lung, skin, muscel and t-spine problems.  This has effected my quality of life.  I don't feel people understand how I feel.  I get tiered of hearing you are the stronges person I know.  ( I don't feel it)   Sometime I want to scream whats next but I know its a matter of time.  Who else is going through simular issues?

  • LexSurvivor99
    LexSurvivor99 Member Posts: 5 Member
    edited June 2020 #64
    Hi Jaye,

    Hi Jaye,

    I am a survivor of childhood Hodgkin's Lymphoma. I was diagnosed the month of my 17th birthday

    Lex

  • LexSurvivor99
    LexSurvivor99 Member Posts: 5 Member
    edited June 2020 #65
    donna87 said:

    anyone still have anxiety?

    I was diagnosed at 18, considered an adult, but to me I was just a child. I finished treat when I was 19. It's so nice to see sooooo many people out there. I work on an oncology unit and unfortunately see the bad side of hodgkins so it's so wonderful to see all the people out there that have made it and are thriving. I am wondering if anyelse has had long term effects of anxiety, depression and worry over whether it will come back or if something new will pop up. Are these normal. I feel like it's been 7 years and I should be over this by now but I can't. Anyone else feel the same? I have two close friends that are survivors as well, one had ALL and one had B cell NHL but hodgkins is associated with some of the highest rates of secondary cancers so  I seem to worry a little more than them. Maybe it's just me?

    Donna,

    Donna,

    I have only been 4 years out of treatment and I still have much anxiety and depression due to having to go in for tests and scans still. I think it is completely normal to experience these and especially when we know that even though the chances might not be the highest we are still at some risk for relapse. I have been experiencing PTSD symptoms since my treatments have ended so I do understand that worry and sickening feeling in your gut. I have some friends that at higher risk of secondary cancers and I worry about them just as much as they worry about me. It is normal knowing how to cope is the key to keep going.

    Lex

  • JenS95
    JenS95 Member Posts: 1 *
    #66
    https://csn.cancer.org/discussion/comment/508279#Comment_508279

    I now this was posted several years ago, But i am just now realizing there are forums out there for childhood cancer survivors. I was diagnosed 2 weeks prior to my 19th birthday (46 now) with Hodgkins as well. I am looking to compare notes with other survivors to see if anyone has some of the same strange symptoms as I do now.

  • lori89
    lori89 Member Posts: 5 Member
    edited July 2022 #67

    Yes, absolutely I would love to compare notes. (Content removed by CSN Support Team). I will also try sending you a message in case this post is flagged for including my personal email.

  • hlsurvivorbh
    hlsurvivorbh Member Posts: 1 *
    #68

    Hi, I'm 19 years old Hodgkin's lymphoma survivor, I was diagnosed at 16 and I'm in remission 2 years and counting. I'm grateful to be alive and cancer free, but I'm struggling with a late effect and i wonder if anyone has the same issue. Since chemo, I'm always exhausted, i used to be an active alive person who hardly needed much sleep and now I'm falling asleep in middle of the day despite having slept like 10 hours the night before. My oncologist claims that its anxiety or depression but I'm positive that's not it, my general doctor claims that fatigue is a symptom of chemo and i just have to live with it. Did anyone here have any such a sort of experience of have any advice?

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