Anyone else here have cardiomyopathy from childhood chemo?

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Melissa
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Anyone else here have cardiomyopathy from childhood chemo?

Post by Melissa » December 22nd, 2010, 8:23 pm

I'm just curious....sometimes I feel like a medical freek. I had chemo at age 9 to treat Ewing's Sarcoma Bone cancer. The chemo and radiation have left me with quite a list of health issues, the most serious of which is this darn cardiomyopathy that caused me to get the ICD in August. I guess I'm just wondering if there is anyone else out there like me and also wondering if they have struggled to get doctors to take their issues seriously like I have.
Melissa - dx cardiomyopathy in 2004 due to childhood chemotherapy; Boston Scientific CRT-D implanted 8/10, meds: Toprol XL 100mg/day, aldactone 25mg/day. Second ICD implanted 3/18, also Boston Scientific CRT-D

cocoalab
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Re: Anyone else here have cardiomyopathy from childhood chemo?

Post by cocoalab » December 22nd, 2010, 10:47 pm

I know of a girl who is 17 now who got a heart transplant because the chemo ruined her heart. She is actually on her second heart and is doing very good- waiting to go home from here at the Ronald McDonald house.

What do you mean about getting the doctors to take you seriously?

:deer: Wendy
Wendy: Andrew's mom(23, L-TGA (ventricular inversion), tricuspid valve replaced 3x-7/96 and 7/05, 6/07 and mitral valve 6/07, MI at last surgery, cardiac arrest August 05, ICD 8/27/05, Bacterial Endocarditis requiring replacement of two valves and his ICD May through July 07) L-VAD 12/7/2010, on the transplant list since April 2011! Rom 4:5 But to him that worketh not, but believeth on Him that justifies the ungodly, his faith is counted for righteosness

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SkaterGirlBrooke
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Re: Anyone else here have cardiomyopathy from childhood chemo?

Post by SkaterGirlBrooke » December 22nd, 2010, 10:55 pm

They don't take you seriously? How so? I am happy you got your ICD though...they at least took that seriously...I wish I could get mine. Did you get other problems as well as the heart issue? I don't think you are a medical freak...you survived childhood cancer which is harder to do than surviving adult cancer...you are obviously a strong person...I think you will do well with your ICD. Hang in there :)
***************
Brooke
About Me:
LQTS,PSVT, VT
SCA X 3 June 2011, X2 Sept, Oct '11 SCA X2 Nov/Dec '11
VT, VF June 2011, Oct '11, Nov '11, Dec '11
Cardiogenic Syncope-6 times Nov '10
Class IA Indications for ICD...waiting on red tape
Metoprolol 350 mg/day
Procan SR (Procainamide...scary stuff)

KevinC

Re: Anyone else here have cardiomyopathy from childhood chemo?

Post by KevinC » December 23rd, 2010, 7:43 am

Hello,

I do not have cardiomyapthy from childhood chemo, but was diagnosed 3 years ago with viral cardiomyapthy. Seems life just isnt fair sometimes.

You obviously are a very strong person to beat cancer at a young age.

I had an ICD implanted back in January 2009, so two years coming up!

I also understand the depression that can set in after a storm. I had a storm while doing my favorite thing, waterskiing.

But I do most anything I want... except fundimentally fighting depression.

Hang in there Melissa!

Ask anything you like!

Kevin

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Melissa
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Re: Anyone else here have cardiomyopathy from childhood chemo?

Post by Melissa » December 23rd, 2010, 12:40 pm

Thanks everyone -- I have had a hard time having doctors take me seriously about the late effects of my chemo and radiation treatment. I am 37 years old and look like I am perfectly healthy. I exercise every day, so doctors look at me and think, she's cured! Many of them don't realize that radiation and chemotherapy are the gifts that keep on giving. Don't get me wrong, I'm not depressed or obsessed about my health. I am happy to be here living every single day. They are all a gift to me. However, there are moments in my life when I feel like there isn't anyone else out there like me. I have premature ovarian failure (infertility) due to my treatments, as well as osteopenia which is the recursor to osteoporosis. I have to have my bladder scoped every year because it was radiated 20 some years ago and I have had some issues crop up that are "undiagnosed" but watched. I have to have a colonoscopy every two years because of the radiation to my abdomen. And, of course, the cardiomyopathy is the doozy of all late effects.

I had no idea that I even had cardiomyopathy (no symptoms at all) in 2004 when I received a newsletter from the hospital that I had been treated at back in the 80's. It said if you have had such and such chemo drugs than you should get your heart checked. I took it to my dr and he basically laughed at me and insinuated that I was paranoid and looking for trouble. I had to practically beg him to order an echo. Two days after the echo he was eating crow when he called and told me the results. (EF of 35%)

It has taken me years to find good doctors who work proactively for me. I finally have them, thank goodness.

Thanks again for the responses!

Melissa
Melissa - dx cardiomyopathy in 2004 due to childhood chemotherapy; Boston Scientific CRT-D implanted 8/10, meds: Toprol XL 100mg/day, aldactone 25mg/day. Second ICD implanted 3/18, also Boston Scientific CRT-D

lostit
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Re: Anyone else here have cardiomyopathy from childhood chemo?

Post by lostit » December 23rd, 2010, 1:16 pm

Melissa,
I never had chemo, but after having my last child 23 yrs ago I developed arrythmias and fainting spells. Docs never took me seriously, I think they thought I made the spells up. Gave me beta blockers for yrs to appease me, but said to my husband it was in my head. Finally last January I went to a new cardiologist who put me on a monitor that self transmits. While sleeping I went into vtach. Awoke at 4am to a phone call asking me if I was all right. He then sent me to an EP who believed there was somthing wrong. He did an EP study and I went into cardiac arrest and was shocked twice to get me back. Then was wheeled in to get an ICD. His diagnosis was post partum cardiomyopathy with no clue how I had stayed alive without the ICD. I wish you the best. We do know our bodies best, don't we?
Anita

cocoalab
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Re: Anyone else here have cardiomyopathy from childhood chemo?

Post by cocoalab » December 23rd, 2010, 1:58 pm

Melissa I am sorry to hear your trials of getting someone to believe you. I am glad you were able to show your primary(?) the letter so he at least had you tested. I wish all the doctors out there were good but unfortunately they run the gamet. I am not conviced about andrew's yet but am giving him the bennefit of the doubt. He at least takes him seriously.

heart hugs,
Wendy :xmasjump:
Melissa wrote:Thanks everyone -- I have had a hard time having doctors take me seriously about the late effects of my chemo and radiation treatment. I am 37 years old and look like I am perfectly healthy. I exercise every day, so doctors look at me and think, she's cured! Many of them don't realize that radiation and chemotherapy are the gifts that keep on giving. Don't get me wrong, I'm not depressed or obsessed about my health. I am happy to be here living every single day. They are all a gift to me. However, there are moments in my life when I feel like there isn't anyone else out there like me. I have premature ovarian failure (infertility) due to my treatments, as well as osteopenia which is the recursor to osteoporosis. I have to have my bladder scoped every year because it was radiated 20 some years ago and I have had some issues crop up that are "undiagnosed" but watched. I have to have a colonoscopy every two years because of the radiation to my abdomen. And, of course, the cardiomyopathy is the doozy of all late effects.

I had no idea that I even had cardiomyopathy (no symptoms at all) in 2004 when I received a newsletter from the hospital that I had been treated at back in the 80's. It said if you have had such and such chemo drugs than you should get your heart checked. I took it to my dr and he basically laughed at me and insinuated that I was paranoid and looking for trouble. I had to practically beg him to order an echo. Two days after the echo he was eating crow when he called and told me the results. (EF of 35%)

It has taken me years to find good doctors who work proactively for me. I finally have them, thank goodness.

Thanks again for the responses!

Melissa
Wendy: Andrew's mom(23, L-TGA (ventricular inversion), tricuspid valve replaced 3x-7/96 and 7/05, 6/07 and mitral valve 6/07, MI at last surgery, cardiac arrest August 05, ICD 8/27/05, Bacterial Endocarditis requiring replacement of two valves and his ICD May through July 07) L-VAD 12/7/2010, on the transplant list since April 2011! Rom 4:5 But to him that worketh not, but believeth on Him that justifies the ungodly, his faith is counted for righteosness

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Suzanne
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Re: Anyone else here have cardiomyopathy from childhood chemo?

Post by Suzanne » December 23rd, 2010, 2:09 pm

You've been through so much Melissa. Your obviously a strong woman...good for you!! And I'm glad you have Doctor's you feel confident with.

I've not had issues any where near yours, but I do understand some of what you've been through. When I was sent to a Cardiologist, for the first time, in December 08, he did and echo and ECG and basically told me to go home and loose weight. I went back a few weeks later and insisted something was wrong; he did a stress echo and gave me a loop recorder to wear for two weeks. Of course, while I was wearing it, I had no events. I even went to the ER a few times, while I was having sustained VT...of course, as soon as they would hook me up to do an ECG, it would stop...everything would then look "normal" and I would leave feeling so frustrated. I knew something was very wrong, but never had the opportunity to prove it. In January 09 I asked for the loop recorder again. The first night I wore it, I was standing in the driveway, talking to a neighbour, had the feeling of about to pass out and felt my heart start strongly racing...I was so happy, because I thought now they would finally see what was wrong. I recorded numerous more events, and when I brought the loop recorder back (which showed numerous sustained runs of VT at approx. 200 bpm), he looked at it and immediately sent me to the ER....18 days later, after MRI, angiogram, EP study and ablation, etc., I got an ICD. As you know, I don't have an ICD anymore...I had second and third opinions, changed Cardiologists and EPs and now have Doctors I too feel confident with.

I've learned, the hard way, that you must do a lot of research yourself (educate yourself), ask a lot of questions and ask for what you want.
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

srmartinson
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Joined: December 18th, 2010, 7:22 pm

Re: Anyone else here have cardiomyopathy from childhood chemo?

Post by srmartinson » December 23rd, 2010, 7:57 pm

Melissa, I completely agree with Suzanne's message. You have to speak up for yourself, especially in the medical field.

I can also completely relate about looking "normal" as I am 38 years old and "look" very healthy. Take care.

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LeoH
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Location: Caracas Venezuela

Re: Anyone else here have cardiomyopathy from childhood chemo?

Post by LeoH » December 25th, 2010, 1:35 pm

Hello, I had qumo and radio when i was 28-29, now have ...... (50 dont tell) beacuse a hodgking desease linfoma. I had en troubles beacuase of that tratment. But more because calcifacation on valves.
Doctors admit today that radio therapy have these 2ds efects.
Leopoldo[/b][/b]
Quimo & Radio on 1988-9
First event on Dec 6, 2001. Since then: 3 stent, 7 bypass, 1 valve chaged, 2 reapired.
Medtronic Concerto inplanted on June 2007, replaced Sep 2010 and new VIVA on Agust 2013
14 shocks and counting
PS. Please forgive my bad english


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