hodgkin's disease childhood cancer survivors

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. (zame@earthlink.net)
Hope to hear from you,
Linda Zame

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 said:

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 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.

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 odom03@bellsouth.net

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: ca.rundude@gte.net
Email me: NAIVEin2000@hotmail.com

elizabeth4567 said:

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 pglasser1@lycos.com

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 zame@earthlink.net
Healing thoughts to all,
Linda Zame

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

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.