hodgkin's disease childhood cancer survivors

Jaye
Jaye Member Posts: 4
edited November 17 in Childhood Cancers #1
Dear all,

I wonder if there are any childhood cancer survivors of hodgkins disease. I would like to write to you, as I am a survivor myself, and am new to this.

Thanks
Jaye
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Comments

  • lindazame
    lindazame Member Posts: 46
    Hi Jaye,

    There is a discussion list for long term survivors of childhood/adolescent cancers. There are lots of survivors of HD there. Here is the URL to join the list. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1

    Or write to me directly and I can help you out. ([email protected])
    Hope to hear from you,
    Linda Zame
  • LilPebbles7
    LilPebbles7 Member Posts: 10
    Hi Jaye
    I am a survivor of childhood hodgkin's. I was diagnosed a week before my 12th birthday. How long have you been from treatment?? If you want to talk more let me know!
  • lori89
    lori89 Member Posts: 5 Member
    I was 19 when I was diagnosed with Hodgkin's. Although by most standards 19 isn't a child, I felt like it robbed me of alot of experiences I should have had at that age. I also feel that a typical 19 year old, much like a child, isn't equipped to handle such a thing in their young life.

    Lori
  • elizabeth4567
    elizabeth4567 Member Posts: 4
    lori89 said:

    I was 19 when I was diagnosed with Hodgkin's. Although by most standards 19 isn't a child, I felt like it robbed me of alot of experiences I should have had at that age. I also feel that a typical 19 year old, much like a child, isn't equipped to handle such a thing in their young life.

    Lori

    I was 14 when I was treated for Hodgkins Disease. That was 35 years ago. Cancer and its late effects have changed my life drastically. The career I chose was in massage therapy and I am always aware of the gift of life. I have been limited in things I can do, too, because of the cancer. I have found it very helpful to be a member of another discussion group sponsored by ACOR, Inc. called the Long Term Survivors group at http://listserv.acor.org/archives/lt-survivors.html
    I have found a lot of support and information for some of the problems I now am facing. They are a great bunch of survivors. I hope you will join us.
  • Neja
    Neja Member Posts: 3

    I was 14 when I was treated for Hodgkins Disease. That was 35 years ago. Cancer and its late effects have changed my life drastically. The career I chose was in massage therapy and I am always aware of the gift of life. I have been limited in things I can do, too, because of the cancer. I have found it very helpful to be a member of another discussion group sponsored by ACOR, Inc. called the Long Term Survivors group at http://listserv.acor.org/archives/lt-survivors.html
    I have found a lot of support and information for some of the problems I now am facing. They are a great bunch of survivors. I hope you will join us.

    I was diagnosed at age 13 with Hodgkin's. I am now 43. I would love to chat with you more about long-term effects of treatment. I am having numerous health issues that I suspect may be related.
  • Neja
    Neja Member Posts: 3

    I was 14 when I was treated for Hodgkins Disease. That was 35 years ago. Cancer and its late effects have changed my life drastically. The career I chose was in massage therapy and I am always aware of the gift of life. I have been limited in things I can do, too, because of the cancer. I have found it very helpful to be a member of another discussion group sponsored by ACOR, Inc. called the Long Term Survivors group at http://listserv.acor.org/archives/lt-survivors.html
    I have found a lot of support and information for some of the problems I now am facing. They are a great bunch of survivors. I hope you will join us.

    I was diagnosed at age 13 with Hodgkin's. I am now 43. I would love to chat with you more about long-term effects of treatment. I am having numerous health issues that I suspect may be related.
  • frantik
    frantik Member Posts: 20
    Neja said:

    I was diagnosed at age 13 with Hodgkin's. I am now 43. I would love to chat with you more about long-term effects of treatment. I am having numerous health issues that I suspect may be related.

    Neja: You should join the online group that Elizabeth mentions if you want to chat with adults who have had Hodgkin's in the past. There are many in that situation who actively discuss these issues on that list. I am also a member, though a Wilms survivor, and I find it invaluable. Hope to get to know you a bit more there.
  • glengs999
    glengs999 Member Posts: 1
    Neja said:

    I was diagnosed at age 13 with Hodgkin's. I am now 43. I would love to chat with you more about long-term effects of treatment. I am having numerous health issues that I suspect may be related.

    hi,call me glenda.was dx HD last feb'03 stage 1 abt 7cm mass on my chest.just had 3 months tx still have 3 mos more of chemo til aug and radiation to come by sept.i am scared if i can still get pregnant soon. i am 30 yrs old? what are your long term side effects ? what chemotherapy did you have before? i have the ABVD plus prednisone. hope to hear from you .
  • patti03
    patti03 Member Posts: 1
    Hi Jaye!! I am going on 8 years remission for Hodgkin's. I was diagnosed at 15 and received chemo and radiation. I would love to chat sometime or feel free to email me at [email protected]
  • michelle77
    michelle77 Member Posts: 10
    Hi Jaye! I too am a Hodgkins survivor. I just started on this web-site & want to connect with others who went through the same things. I was 13 when I had it & now I'm 26! I've been cancer & treatment free for over 12 years! I'd love to hear of your experience. How long has it been for you? Michelle
  • NAIVEin2000
    NAIVEin2000 Member Posts: 5
    My domestic partner (Michael) is a 45 year old man whom suffered from Hodgkin's Decease when he was 17 years old. He underwent removal of his spleen and received radiation treatments and lived a cancer free life and was very active even managed to complete 21 marathons, and was a coach/trainer with The Leukemia & Lymphoma Society's - Team In Training(TNT).

    Around 1990 Michael began experiencing pain in his upper back-T6 area. The doctors were able to help with the pain by giving him anti-inflammatory

    and muscle relaxers, and was told his muscle was "wasting", he was NEVER told why he was losing muscle. No further action was taken by the doctors or Michael at that time. By 1999 Michael was feeling run down/extremely fatigued had more days he was not able to attend work due to fatigue. Muscle loss was very noticeable especially were he was radiated (upper torso and back of neck/nape of head). By 2000 his doctor stated he had lost over 90% of his muscle and continues to lose. He is no longer able to work or be as active as he once was.

    His quality of physical life is not what he once had this is due to extreme pain and fatigue.

    Spiritually he has and continues to grow -- he is my and the kids hero. He has gone through many tests at UCLA/USC and nothing can be done. He has been called a medical wonder.

    We are trying to find others that suffers this condition, or some research that has been done on the long term effects of radiation as treatment of cancer. There must be more kids that are now adults and have complications due to treatments received for their childhood cancers. Michael never got any secondary cancers BUT his thyroid was removed in 2000

    (at UCLA) due to several nodules that could have turned cancerous.

    Please let me know if you/anyone has any leads on others that suffer the painful slow death of this horrific condition directly due to treatment or of any studies past/present. Please feel free to pass my information along. Just been able to talk to others that are going through this will relieve a lot of stress and we will not feel so alone.

    I have sent many emails, made many calls to support groups/organizations to date NO ONE has any leads on survivors going through the same thing or studies current/past.

    Email Mike: [email protected]
    Email me: [email protected]
  • michelle77
    michelle77 Member Posts: 10
    Neja said:

    I was diagnosed at age 13 with Hodgkin's. I am now 43. I would love to chat with you more about long-term effects of treatment. I am having numerous health issues that I suspect may be related.

    Hi Neja! I was aldo diagnosed with Hodgkins at age 13, I'm now 26. How long has it been since you had treatment? Did you also receive MOPP & ABVD as chemo? Did you have radiation (I did not). Please tell me about some of your long term effects. I feel I have some too. Would love to chat with you & any other survivors. You can send me an email through this site under my user name, or just reply here. Thanks! Michelle
  • pittsburghpete
    pittsburghpete Member Posts: 10

    I was 14 when I was treated for Hodgkins Disease. That was 35 years ago. Cancer and its late effects have changed my life drastically. The career I chose was in massage therapy and I am always aware of the gift of life. I have been limited in things I can do, too, because of the cancer. I have found it very helpful to be a member of another discussion group sponsored by ACOR, Inc. called the Long Term Survivors group at http://listserv.acor.org/archives/lt-survivors.html
    I have found a lot of support and information for some of the problems I now am facing. They are a great bunch of survivors. I hope you will join us.

    Hi Elizabeth,
    I was treated in 1969, perhaps 2 years after you, for Hodgkins. I am curious as to the late stage effects you referred to... what are they? And were you referring to effects of treatment or the disease itself? Also, I'm curious about where you were treated. I was given radiation at Sloan Kettering Memorial, and MOPP in NYC also.

    If you feel like emailing me, it's [email protected]
  • Neja
    Neja Member Posts: 3
    Hi Jaye -

    My name is Kathy and I am a 30-year Hodgkin's Survivor. I received treatment in 1973. When were you diagnosed? What type of treatment did you have?

    Kathy
  • lindazame
    lindazame Member Posts: 46
    Hi all,

    I recognize some of the names and email addresses here from recent members on the LTS discussion list. I would like to invite those of you haven't checked out our discussion group to come join us. The discussion group is for all long term survivors of cancer, although most of our members were treated as children and young adults and a majority had HD. I highl recommend the group. It is immediate and responsive. I actually had the experience this past week in using information I received through the LTS discussion list to save my life when I became ill with an encapsulated bateria. (Not that I knew it at the time!) Through the LTS list I learned that asplenic individuals have to receive quick and immediate attention for high fevers. That information took me to the ER where I was admitted to the hospital. Please come join us at to the LTS discussion group where you can talk to survivors and some of the health care professionals that treat survivors. Here is the URL to join. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors=1

    Or you can always reach me at [email protected]
    Healing thoughts to all,
    Linda Zame
  • mfunes
    mfunes Member Posts: 2
    Hello everyone,
    My name is Martha. My mom was treated for HD when she was 17 years old and was treated with radiation. She is now 49. Last Nov ('02) she found a lump in her breast which turned out to be pos for cancer. she was treated with radation again and now needs to begin taking tamoxophin. In Aug. (03) she went to the dermatologist who found and biopsied skin cancer on her hip. It was positive for stage III melanoma. The doctor's can't tell us if these more recent findings are due to the intense radiation she had as a child or what. This week she is having the area removed and one lymph node removed to be tested. She is not dealing with this very well. She is very depressed and having a hard time concentrating at work. I've tried to get her to go talk to a psych or a support group but she thinks it won't help...she feels like she's the only one going through this and that no one understands. Of course, not having to experience this myself, I don't know how this feels for her and I can't relate. I don't know how to help her. I go with her to the doctor's appointments and try to remind her to take one step at a time. I try to remind her of all the things she has to look forward to and to fight for but this doesn't work all the time. She kept up with her follow-up appointments after the HD treatment for about 5 years or so but then stopped going. Just the other day she told me that she didn't want to go because she didn't want them to tell her she had cancer again and now realizes that was a big mistake. She also told me she was scared to die and doesn't want to go yet, something she's never brought up before. Many times during this last year she has said she has wanted to give up and is too tired to fight any more...even still she continues her treatments which is good. to add to all of this, she is divorced and is very worried about finding someone who will accept her with her disease and the scars left from all the surguries. Anyway, I was wondering if there was someone out there who has had similar experiences who could give me advice or hope or something to help my mom and my family deal with this. It is really hard.
    You can e-mail me directly at [email protected]
    Thank you in advance,
    Martha
  • Survivor86
    Survivor86 Member Posts: 18
    23 yr. Hodgkin's Survivor-experiencing long term effects
    I'm looking for people like me that might be experiencing the long term effects of chemotheraphy and radiation, If there is any follow up programs for the uninsured. I have recently filed fo disability.

    Thanks,
    Survivor86
  • feather80
    feather80 Member Posts: 11
    What kind of side effects do
    What kind of side effects do you have?
    Feather
  • BrittaA
    BrittaA Member Posts: 19
    Hodgkin's Disease Survivor!
    Hi Jaye – I am a 17-year Hodgkin’s disease survivor and would love to connect. I recently started a blog, Cinco Vidas (http://blog.cincovidas.com), for cancer patients that deals with the side effects of chemotherapy and radiation as well as with improving your lifestyle and comfort while going through cancer. I was really compelled to start my site as I am a cancer survivor myself and could find little information on coping with cancer treatments. I would love to hear from you and any other patients, survivors and caregivers! Love, strength and survival, Britta.
  • betnyhope
    betnyhope Member Posts: 2

    23 yr. Hodgkin's Survivor-experiencing long term effects
    I'm looking for people like me that might be experiencing the long term effects of chemotheraphy and radiation, If there is any follow up programs for the uninsured. I have recently filed fo disability.

    Thanks,
    Survivor86

    how long have you been out
    how long have you been out of treatment?
    how old were you when you were diagnosed?