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hodgkin's disease childhood cancer survivors

Jaye
Posts: 4
Joined: Apr 2003

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

lindazame
Posts: 46
Joined: Jan 2002

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

LilPebbles7
Posts: 10
Joined: Mar 2003

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's picture
lori89
Posts: 4
Joined: Apr 2003

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
Posts: 4
Joined: Apr 2003

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
Posts: 3
Joined: May 2003

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.

Dove1
Posts: 3
Joined: Jan 2011

I would love to discuss with you any related late effects you have from the treatments you had. Especially since we were diagnosed at the same age. I do have a lot of residule effects from the radiation. Give me an email back. I am new to this site, so I will try to get back to you soon! Take care!

barnsleybomber
Posts: 1
Joined: Dec 2011

Hi, i had hodgkins at 11 im now 36, are you able to discuss your issues as i would like to discuss mine with someone who had similar experiences. my email address is dr_scott08@hotmail.com

Regards
Darren Scott

Neja
Posts: 3
Joined: May 2003

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
Posts: 20
Joined: May 2002

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
Posts: 1
Joined: May 2003

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 .

michelle77
Posts: 10
Joined: Jun 2003

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
Posts: 10
Joined: Jun 2003

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

patti03's picture
patti03
Posts: 1
Joined: Apr 2003

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

michelle77
Posts: 10
Joined: Jun 2003

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
Posts: 5
Joined: Jun 2003

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

Dove1
Posts: 3
Joined: Jan 2011

I had Hodgkins at age 13. I went to UCLA for extensive radiation from my neck to my pelvis. I have also had my thyroid removed at age 30 from a lump that would have turned into cancer. I had a residule effect of breast cancer 2 years ago, a complete mastecomy because they could not radiate me a second time. I also struggle from muscle loss where I was radiated, especially my upper back, neck & shoulders. My heart & lungs also have effects. I take muscle relaxers and they don't do a whole lot. I also suffer from neuropothy, numbness in my right hand & feet. I went off work in 20006, due to residule effects of the radiation. It does do damage to our bodies, but it saves our lives. It is when we get older that we feel the late effects. I am now 51. Each day I wake up I make it a good one! We are not promised tomarrrow :) Write back if u have more questions.

Dove1
Posts: 3
Joined: Jan 2011

I was age 13 when I was diagnosed. Had radiation treatments at UCLA. Yes, I do have many residule effects from the radiation given to me as a child. I have some heart & lung problems, also fatige that I battle with daily. I also had a tumor in my thyroid at age 30. Removed the thyroid & thought it was cancer, but thank God it was not. I am 51 now. Had breast cancer as a late effect from the radiation 3 years ago. Had a double mastecomy. I do have muscle problems, as well as neuropothy in my hands & feet. I am also on muscle relaxers for spasms in my back & shoulders. My neck constantly aches, and I have had cordisone shot in it 3 times. Helped for a while, then came back. My neck and upper torso looks different do to loss of muscle also. I hope you find help to know their are others out here with simular late effects. Take care!

marshje3
Posts: 4
Joined: Mar 2011

I too have had heart and lung problems probably due to the mantle irradiation. I am out here as well and I think that we really need to educate physicians and the public as to the ongoing effects post hodgkins.

lucyofnarnia
Posts: 4
Joined: Apr 2011

I don't know whether anyone who replied is still here...or even still alive; I know some of the dear folk who replied have since passed on.

So...yeah, cancer oldbie here, diagnosed pathologic stage II-A HD w/bulky mediastinal involvement August 1988, just after my fifteeth birthday. Those on the LTS list long-term may remember me from years ago. I was an early member but can no longer handle the mail volume, sadly.

Lots of late effects, including lung scarring, possible cardiac damage (no one seems quite able to ascertain this), immune system dysfunction (oh, thank you, splenectomy), peripheral neuropathy, hypothyroidism, etc.

One thing I might add...if any young, recently diagnosed pts are reading this, I would like to be clear on something. Yes, late effects are a total bear to deal with...that said, am I sorry I did treatment? NO. NO, NO, NEVER. I have done extensive historical research on Hodgkin's, and I know PRECISELY what it does without conventional therapies. Trust me, it "ain't" pretty. Toxic treatments? Oh, absolutely, but they bought me 22-23 good years and counting. Enough time for first kiss, high school/college/grad school and graduations, my dream trip to Broadway and NYC, first kiss, dream job, wedding and now-nearly-twelve years of marriage, my very own little doggie, the completion of my first full novel, etc. - so - yeah, TOTALLY worth it all. The whole mess has completely been worth it. So if you're reading this and thinking ACK I CANNOT DO THIS...think again and go do it. There's kind of this really high death rate otherwise, which kind of crimps a person's style.... ;)

I appreciate all the "senior" survivors who took time along the way to teach me. Thanks, wherever you all are. I wouldn't be as tough or smart without all of you.

Feel free to write, anybody. I may not guarantee a quick answer, kinda depends what's up at the time. For example, I'm about to go back to my current med center for some stuff, but I will definitely check in and reply as soon as I can, okay? Whether you're totally new to the journey or more of an old-schooler than I am, I'd enjoy hearing from you. :) Message me if you like, and I'll get back w/you soon's I can.

Long live the young Hodgkin's survivor crew!

-"Lucy"

mmmaryl
Posts: 4
Joined: Sep 2011

Hi, I too have muscle wasting after Hodgkin's treatments in my neck and shoulders. I cannot work (I used to have a very good career as a scientist) but have been doing excercises including riding my bicycle to try to improve the muscle tone, although the doctor says that I have hardly any muscle where I got radiated with upper mantle radiation at the age of 16 in 1981. Anyone else with muscle wasting issues, and if so, have they had any success building tone back up? I have seen a slight improvement with the exercise. However, I have had this problem for the past 20 years (the muscle wasting problem), although it has really accelerated in the past 5 years. I have always done physical activity to try to counteract it, including lots of sports including running in my 20's. (The reason I am now doing biking is that it seems to work my back and shoulders as well).

mmmaryl
Posts: 4
Joined: Sep 2011

Hi, I too have muscle wasting after Hodgkin's treatments in my neck and shoulders. I cannot work (I used to have a very good career as a scientist) but have been doing excercises including riding my bicycle to try to improve the muscle tone, although the doctor says that I have hardly any muscle where I got radiated with upper mantle radiation at the age of 16 in 1981. Anyone else with muscle wasting issues, and if so, have they had any success building tone back up? I have seen a slight improvement with the exercise. However, I have had this problem for the past 20 years (the muscle wasting problem), although it has really accelerated in the past 5 years. I have always done physical activity to try to counteract it, including lots of sports including running in my 20's. (The reason I am now doing biking is that it seems to work my back and shoulders as well).

Bob_Falfa
Posts: 1
Joined: Oct 2012

i was MCHD stage3 {spleen} back in 1977 @20 years young, at Mayo clinic in Rochester minnesota. took my spleen and a piece of bone from each hip, then had me down for both chemo and rad. but that's when we found out i just did not take radiation well at all so they had to cut the dose in half most all the time so i could handle it, which worked but ended up taking 64 radiation treatments, and with that amount the docs thought i was good to go and if i needed chemo then we would do it, well 35 years later were still pretty good to go...but this "muscle wasting" has me thinking, my neck has been sore every morning for 2-3 years {that's where we found my HD]taken pics and found nothing so this is interesting,heart doc says mine looks good for have that much radiation,lungs are showing no signs of radiation issues which are things we must watch for and just lately my upper back has been sore just like my neck. so i hope my luck with all the rads is going to hold up this muscle wasting thing just might be starting so going to do some checking and let ya all know and R.I.P. Dr. Murray N Silverstein he was at Mayo Clinic in the mid 70's the man was a great human being and Dr.John Earl was my Rad. guy both back then were top notch and always thank them and all who helps up at the Mayo

Neja
Posts: 3
Joined: May 2003

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
Posts: 46
Joined: Jan 2002

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

mfunes
Posts: 2
Joined: Sep 2003

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 mfunes1@earthlink.net
Thank you in advance,
Martha

Survivor86's picture
Survivor86
Posts: 18
Joined: Apr 2009

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

betnyhope
Posts: 2
Joined: May 2009

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

KStar19
Posts: 8
Joined: Dec 2011

Hey Survivor86

I was diagnosed when I was 18 stage 2B I'm now 27. I had chemo and radiation as well and am experiencing some of the long term effects I was on disability for a while but then got kicked out long story. From a knee surgery that wouldnt heal they think from the cancer stuff. I would like to talk with you it seems like we have similar stories. If you want to email me its ogirl84@gmail.com KStar19

feather80
Posts: 11
Joined: Apr 2009

What kind of side effects do you have?
Feather

Survivor86's picture
Survivor86
Posts: 18
Joined: Apr 2009

I have had numerous health problem, recently they found something on my breast, haven't had a biopsy, I have constant muscle, joint, bone pain, I was dianoised with terminal IC, which is a very painful bladder diease. I having problems with my thyroid, I had to have a hysterectomy, the doc said my female organs were the worst he had ever seen. I have fatiuge, insomnia, rapid heatbeat, headaches and memory loss. I also have a valve in my heart that don't pump right. I have an appointment May 8 at Vanderbuilt Hospital survivorship clinic, I hope they can help my quality of life.

BrittaA's picture
BrittaA
Posts: 20
Joined: May 2009

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.

Bonebrake
Posts: 7
Joined: May 2005

I was diagnosed with Hodgkin's disease - Stage II - in 1974 (at the age of 10). I had my spleen removed pursuant to staging (clear). I was treated with high-dose radiation to my upper body with lead blocks placed over my lungs and brain. In 1991, I had my thyroid removed due to a pre-cancerous cyst. Three years ago, I was diagnosed with a heart murmur. Two weeks ago, I had a stress test and cardiac cath. and I am scheduled to have my aortic valve replaced with a mechanical valve and I be given a triple bypass. I lost several inches in height and have chronic muscle/nerve pain and connective tissue discomfort.

I have been married for twenty-three years, have three healthy children, and have worked full-time as a city manager and attorney in Illinois. During most of my career, I have taken few sick days, enjoy wilderness camping, consider myself in good health, take only ibuprofen for pain, and am happy to be alive.

Over the years, I have had to "educate" doctors about my health conditions, and risks. Only recently (last 10 years) have I been able to find relevant information about survivor issues, and I had no idea that my radiation would cause heart valve problems. I look forward to hearing from you concerning your survivorship. Sincerely, Bruce

joroja
Posts: 2
Joined: Mar 2010

36 YEAR SURVIVOR HODGKINS DISEASE SEEING EFFECTS

In some ways it is wonderful to be able to see that there are others experiencing what I have been experiencing for some time now. I was treated for Stage 1 Hodgkins with cobalt radiation 36 years ago. With the exception of emotional effects from the disease I hadn't any secondary problems until 13 years ago when it was thought that I had thyroid cancer, which I did not but had a thyroidectomy due to the increased risk from radiation. Then 5 years ago I developed Stage 2 Breast Cancer. Treated with chemotherapy and am now cancer free. Each day, as I'm sure most of you know, is a blessing but we have to always live with the fear(which I TRY not do do) of a reoccurrence or new type of cancer. Every test we take turns out to be a rollercoaster ride of emotions because I think the doctors tend to be overly sensitive to the fact that we are cancer survivors. I have just recently learned that I too have not only mitral valve prolapse but aortic stenosis and leakage which is assumed to be from the radiation therapy. I have been told that I do not need valve replacement at this present time but we are watching things very carefully. I too have done my research for the possible future at the Cleveland Clinic. I read the other person's blog about Late Term Effects Clinics and I will have to look into my area (south Florida) to see if there is any such thing. Presently most of my doctors work independent of one another and that can be quite frustrating. I pray that all of us will continue to live a long and at best productive life. I have a 13 year old son that I intend to see grow into a fine "middle aged" man.

tradenslaben
Posts: 1
Joined: Dec 2009

Hello! I was diagnosed with Stage IV Hodgkin's disease when I was 14. I am now 38 years old. I have kept my chin high even though I have had several setbacks from past radiation and chemo. At age 36 (my son's 10th birthday) I was diagnosed with Stage II Breast Cancer. I had a double masectomy and when through chemo and radiation. A year later I was diagnosed with Stage I thyroid cancer. My doctor thinks it was all caused from my past radiation. So far I am doing fine and learn to cherish every day of my life. I do have joint trouble and was diagnosed with fibromyalgia when I was in my 20s. I believe a positive attitude is the key!

ecoloqua
Posts: 1
Joined: Sep 2010

I was diagnosed as having Hodgkins in 1977 stage III. (age 11) They removed my spleen and found that it was fully involved. I had radiation to my neck lower back and stomach area. I also had chemo. All treatments were done in 77-78. Was in perfect health from 78-2006.

Had my thyroid removed 2 years ago (I had nodules and was tired of all the fna's) no cancer was found. I also decided to get a PSA and a prostate check. Glad I did becasue they said there was evidence of early Prostate cancer. So given my age I decided to have it removed and have no problems since. Cancer was isolated to the protate and totally removed. Outside of the usual complaints i.e. neck muscle atrophy, maybe a slightly diminished lung capacity, and have to drink a ton of water when excercising, I have been healthy. I am not overweight and I play a lot tennis so I stay in reasonably good shape. I dont smoke and just drink socialbly.
They have me in the long term heart follow-up so I continue to go back to get that checked. Over the years I have not been really involved with the whole "cancer survivor thing". I go to my folow-ups they tell me everything is great and I fly home. I discovered this site and frankly it is scaring the the hell out of me..lol...my wife has directed me to turn off the computer. Probably good advice.

dubois
Posts: 4
Joined: Jun 2011

Hodgkin's class of '74. I was 12 years old. Aortic stenosis is just starting to affect me. It's pretty inconvenient for both my gardening work and my recreation hiking the mountains. At this point my only prescription is to keep my heart rate down. Check again in six months. Before they start talking about surgery I'd like to be clear the chances for successful surgery. It seems to me that the radiation damage would make surgery difficult. So, Bruce, how did it go? I hope to hear you're back to the wilderness. Best wishes.

ian93
Posts: 12
Joined: Jun 2011

Hey jaye, i am also a hodgkins survivor. i was diangnosed about 13 months ago and am now 8 months in remmision!!. I havent really talked to anyone about my experiecnes ive been keeping them inside me. But yea, i went through 4 months of intensive chemo followed by 14 days staright of radiation, that sucked. I havent really noticed much effects from the chemo, obviously they're there. My lungs are still good my heart is good. radiation on the otherhand.. my skin still feels like rubber and my neck feels realy weird still. there was a chance of thyroid problem developing but so far ive been lucky. Id love to hear back from you or anyone in a similar situation. im looking for friends online i can relate with and get stuff off my chest ive been wanting to tell people. Best of luck to you and everyone else on this site.

Best wishes
Ian

ctcreed
Posts: 3
Joined: Oct 2009

I was diagnosed at 2,in 1989, with nodular lymphocyte predominant hodgkins. I didn't receive radiation or chemo. The node was excised and that was it. I'm wondering if anyone else has similar circumstances?

DT44
Posts: 6
Joined: Mar 2010

ctcreed, My son is just a couple of years older than you are. He was born in 85 and you were born in 87. When he was a toddler, I noticed that he had perpetually enlarged lymph nodes and I always questioned the pediatricians, but they always dismissed it. 6 months ago, he was diagnosed with 2A NLP and the doctor says that he has only had it for about 5 years. The neck node was enlarged, but the PET scan did not reflect any activity there. The activity was in the area under his right armpit where a node was removed and an area under his left armpit that has an enlarged node. The doctors did not recommend removal of the second node because they said it could travel to another area since he had activity in opposite sides of his body. The doctor has advised us to just watch it without treating it with Chemotherapy, Radiation, Rituxin, Bexxar or whatever else is being used currently. I am anxiously waiting his second CT scan to see what it shows. The doctor said that the disease could go away and I am really hoping and praying for that miracle. I am so pleased for you (and I am hopeful for my son) that you have been cancer-free for 19 years. Thank you so much for posting your story. I wish you a long, healthy, prosperous and happy life.

EmilyAnn's picture
EmilyAnn
Posts: 11
Joined: Jan 2011

hey,

im 18 and i was diagnosed with hodgkin 3 months ago when i was 17. if u have any advice or anything i would like some.

emilyann

ian93
Posts: 12
Joined: Jun 2011

definetly stay postive, hodgkins lymphoma has over a 90% cure rate, thats including older people with health problems already. your young and healthy and WILL overcome this. I had hodgkins when i was 16 and am now 8 months in remmision. Id definetly say try not to think about getting sick, and if you do, think of this. People drink till they throw up, if you have to get a little sick and throw up so be it, its saving your life. people drink and get horribly sick just for the fun of it. keep fighting this and you will overcome.

Best wishes,
Ian

Phoenix10's picture
Phoenix10
Posts: 47
Joined: Dec 2009

Hello everyone! It's great to see so many fellow survivors!

I was diagnosed at 17 and feel the same thoughts as you...being robbed of my youth, not taking anything for granted, etc.

It'd be great to be in touch with more of you!

marshje3
Posts: 4
Joined: Mar 2011

Hi Jaye and all,
I am celebrating my 25th year Hodgkins free, treated in 1986 at the age of 11. I would love to chat with anyone else about life after hodgkins.

email me at jenniolson@yahoo.com

TJ74's picture
TJ74
Posts: 18
Joined: Aug 2011

I started getting symptoms in 1989, diagnosed in 1990 at 16. After chemo and rad. and a relapse more chemo and finally a bone marrow transplant, I've been 20 years free. Still looking for an identity outside of being a survivor of a bmt. I'll sell my story for 10 million dollars lol.

KStar19
Posts: 8
Joined: Dec 2011

Hi Jaye

I am a survivor of HD. I was diagnosed Dec 2002 and I was 18 years old at the time I am now 27. I was stage 2B. I went through chemo and radiation until June 2003 when I was considered in remission. The chemo I had was ABVD. I didn't mind chemo I didn't get very sick except for the first chemo and my last one those ones really kicked my butt. Radiation was by far the worst I hated it. The burns were bad it burn me from the inside out. I couldn't eat cause I had radiation to my throat. The one thing that upset me and I didn't even realize was you can lose your hair with radiation. I kept some of my hair through chemo I think cause I have very thick hair. But then lost it where the radiation was. Did anyone else have radiation? What was your experience?

If you would like to write to me that would be great I would like to talk with someone that has gone through the same thing I have. Or if anyone else would like share stories and just talk about living after cancer, that would be awesome. My email is ogirl84@gmail.com

Kim

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

greetings

I was 25 years old, in 1989 and was dx'd with non-hodgkins lymphoma.
they did LOTs of radiation and were able to eliminate the cancer

23 years later, a large tumor in my colon that traveled 4cm to my liver and formed 30 tumors in the liver. And... the large tumor in my colon was caused by Radiation Therepy.

crazy!!!

not sure i can help... but if i can, just shout out.

thanks

CullensMama
Posts: 1
Joined: Jun 2012

I was diagnosed when I was 14 and I am a survivor since 1990.

:)
Amanda

KarlawithaK
Posts: 4
Joined: Jul 2012

Jaye,

I was diagnosed with Hodgkin's in 1976 at age 16 and was then (over)treated with mantle radiation in huge amounts. I understand that by 1980 these doses were greatly reduced. I have been astoundingly healthy for 35 years. However, there are some odd things about my body. Nothing I can do at the gym could ever build muscle in m chest or back. Also, I have the skinniest neck in history. Five years ago, a heart valve stenosis was detected and this year, a lump in my breast. Last week when I had a bilateral mastectomy with spacers for reconsruction, the surgeons had a very hard time because of distorted tissue planes. In other words, muscles were fused together.

I would like to talk with other long term survivors to know:
1. Are these changes increasing or decreasing over time?
2. What can we do to minimize or reverse the effects of radiation?
3. Is anybody really collecting significant data, as there are so few of us alive today who had this treatment?

My doctors are young and did their homework. They are talented. Still, they wre met with a surprise in the OR.

Love to hear from others.

Karla

Phoenix10's picture
Phoenix10
Posts: 47
Joined: Dec 2009

Hi Karla,

I had mantle radiation in 1993 for HD. There is a risk for breast cancer but that seems to be the major issue since they reduced the treatment. You're right...I have a friend who fought HD back in the 80s and the treatment was much harsher then.

I know of a study that was done in the early 2000s that asked how cancer survivors were coping. I participated and a majority of the participants stated that they had side effects but that they were manageable in regards to the quality of life.

Wishing you the best!

dubois
Posts: 4
Joined: Jun 2011

Karla with a K,

Hodgkins class of '74. I was 12 years old. Ditto on the wasted chest and back, skinny neck. Jaw also did not fill out but fixed that with a dermal fat graft at age 20. Your description of fused muscles sounds like what my docs refer to as scar tissue, the reason for my aortic stenosis and hardening arteries. Also the reason I didn't qualify for open heart surgery to replace the valve. The good news is that the University of Washington Medical Center is at the forefront in performing Transcatheter Aortic Valve Implantations. Had my surgery August 21. Was out of the hospital on the 24th. Maybe it's just due to my history, but I had no pain meds during recovery. 4 1/2 weeks later I did back-to-back 4 1/2 mile hikes in the mountains.
As far as your questions:
1. At some point the complications of the side effects begin accelerating. Nothing to be done but fix 'em as they come.
2. Live healthy, or as Lance says, Live Strong. You cannot reverse the effects, but you can minimize the impacts by eating well and keeping on the move. Broke my neck in '04 (Doc surmised the bones may have been weakened by the radiation. Oh, and the anterior fusion took two hours longer than usual because of the scar tissue they had to go through.) but I'm still making my living as a gardener. I like to say "I'm strong as a mule, or maybe just as stubborn as one."
3. I haven't uncovered anyone studying this condition, but my docs are well aware of what it's all about.

Walk softly, breathe, smile. Hope we kan karry on this konversation.

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