Cancer Survivors Network - hodgkin's disease childhood cancer survivors - Comments

Hello

KStar19 — Thu, 22 Dec 2011 03:22:48 -0500

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

Survivor

KStar19 — Thu, 22 Dec 2011 03:17:28 -0500

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

health issues

barnsleybomber — Thu, 15 Dec 2011 06:17:40 -0500

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

Muscle wasting after childhood hodgkins treatments

mmmaryl — Fri, 09 Sep 2011 17:44:36 -0400

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).

Muscle wasting after childhood hodgkins treatments

mmmaryl — Fri, 09 Sep 2011 17:44:31 -0400

20 years this July 4th

TJ74 — Sat, 13 Aug 2011 17:51:08 -0400

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.

hodgkins survivor

ian93 — Tue, 14 Jun 2011 13:30:54 -0400

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

17 yr /old survivor too!

ian93 — Tue, 14 Jun 2011 13:23:33 -0400

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

To Bonebrake...

dubois — Wed, 01 Jun 2011 21:20:19 -0400

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.

Another LTS of HD here

lucyofnarnia — Wed, 27 Apr 2011 03:28:49 -0400

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"

heart problems here too!

marshje3 — Tue, 08 Mar 2011 20:22:57 -0500

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.

25 years Hodgkins Free

marshje3 — Tue, 08 Mar 2011 20:19:41 -0500

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

Long Term Survivor of Hodgkins

Dove1 — Mon, 07 Feb 2011 18:31:06 -0500

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!

Long Term effects of radiation from Hodgkins Disease at age 13.

Dove1 — Mon, 07 Feb 2011 18:16:31 -0500

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!

Hodgkins Side Effects

tradenslaben — Sat, 22 Jan 2011 22:25:26 -0500

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!

hodgkin's disease childhood cancer survivors

Jaye — Thu, 17 Apr 2003 13:56:00 -0400

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