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Any Hodgkin's Survivors with Heart Issues?

racerdan's picture
racerdan
Posts: 1
Joined: Apr 2010

My first episode of sustained Tachycardia in 1991 sent me to the ER and routine chest x-rays discovered a tumor in my chest near my heart. I was soon diagnosed with Stage IIa HL.

In 1996, I had another episode of sustained Tachycardia that sent me to the ER again.

In 1999 the Tachycardia became so frequent, I needed to be placed on beta-blockers to help calm my heart down.

In 2002 my ECG's were saying I had a couple of heart attacks.

A Cardiologist told me I "probably" had an extra electrical pathway that could be burned out, but as long as I could be treated with the medicine, the procedure was not necessary.

In 2004, I was living in the U.K. and my beta blockers were not cutting it any more. The NHS in the UK is a wonderful service. The set me up to have my heart's electrical system mapped out and then remove the extra electrical pathway that was suppossedly causing all the trouble.

In 2005, when i was having the procedure done two perplexing things happened...

1. At 35 years old, the Doctor basically told me I had the arteries of an old man! They put these little leads into an artery in your groin and feed them up into your heart, while you are fully awake and feeling them moving around in your body (totally wierd) and when he got close to my heart, the leads wouldn't go any further... thud... thud... and he had to pull them out and start over with the smaller ones they use for old people with hardened arteries.

2. When he finally mapped my electrical system... no extra pathway.

His conclusion was the cancer or the radiation had messed up the electrical system in my heart causing atrial tachycardia. He said it was too complicated to fix.

In 2007 I saw an oncologist for the first time in many years and asked her about the Tachycardia, she felt the HL was the source of my problem.

Now, at 39 I take three heart medications. I get out of breath really easy and my ankles are starting to swell.

Any suggestions???

Can anyone relate???

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I recently saw a doctor at a Long Term Survivors clinic. He said that 100% of Hodgkins patients have a rapid heart rate from the rads/and or chemo. I had rads 20 yrs ago for Hodgkins and ABVD in 1994 for a recurrence. Currently, I have the start of heart valve problems w/calcifications. My heart is somewhat "stiff" too. I will be going for additional tests (in addition to the echos, stress echos, ekgs and tee that I get done routinely) to further access the damage from treatment. My heart rate is always high and doc says we can not lower it by exercise as others can do. I will have a specialized carotid artery test. TCarotids are a "window" to see what is going on in our heart arteries. If calcification or hardening is seen in these larger arteries, they same will be happening around the heart. The heart arteries are much smaller though. This means that any blockages will be much larger by percentage near the heart. IE, a 50% block in the neck may translate to a 90% blockage by the heart.
Have you checked out the discussion board for long term survivors on this site? You'll find posts about heart issues there. Also, acor.org has a mailing list for long term survivors that is a wealth of information from and for people like you and me.

Best wishes to you,
Cathy

bluerose's picture
bluerose
Posts: 1103
Joined: Jul 2009

I had non hodgkins lymphoma way back 20 years ago and had regular chemo (CHOP treatments) and localized rads to my groin area where the lump was found on my inner left leg. Just less than 2 years later the nhl came back and I opted for a bone marrow transplant and total body rads - autologus transplant meaning they used my marrow not a donors.

Anywho i noticed my heart skipping beats during the first treatment session but they said it was 'normal'. Didn't feel right to me but what did I know then. Anywho come to the bone marrow transplant and after all the treatments are over I have congestive heart failutre and now have atrial fib which is basically an irregular beat but it's so severe at times that I nearly faint. I have been rushed to hospitals many times for this and once admitted to our Heart Institute here where they put me on different meds - I am on 3 now for this and by the way now also have a pacemaker too that had to be put in 6 years ago on emergency admittance - nearly died that time.

I seem to be pretty well regulated now but it won't last, these things get worse. I was told that this damage to my heart was no doubt due to adriamyacin induced cardiomyopathy which means damage from the chemo drug adriamycin. Of course no one can prove that for sure but I had no heart isssues before all the treatments and know how it went for me with it all.

I have never been able to return to work due to this disability as it can be severe out of the blue as well as roughly 7 other side effects from the treatments. For some transplants can carry a big price to pay for longevity but hey I'm not complaining. It's a beautiful day here and I am here to enjoy it. The side effects do get me down once in awhile but that's normal.

All the best. I think you are talking about ablation of the pathrways, I will probably need that at some point but let's wait til they refine that surgery a bit more - carries major risks right now.

My cardiologist (electrophysiologist for the arythmia) told me last year that they are coming out with a new drug for atrial fib, the first new one for this in a long time, I wonder if it's out yet and how they are finding it as to the success rate. Anyone know?

Take care.

Bluerose

mtiberio
Posts: 3
Joined: Apr 2010

Interesting web site.

I had Hodgkins in my neck when I was 17 (1972, now 55, so 38 years ago).

I had radiation. 200 rems per day for 19 days (3800 total), mid chest to base of skull. In case your wondering, 800 rems whole body in one dose is enough to kill you.

They did a destructive inspection on my spleen and a general exploratory (no cancer down south).

I now have:
underworking thyroid, on thyroid pills for life

fibrosis around the edges of my lungs (where they didn't use plates of lead to protect me), no treatments, yet

I had a massive heart murmur due to calcification (aortic stenosis), 13 weeks ago I had a pig valve installed, and a triple bypass. Doc says there was more calcification in there than he expected.

I an experiencing some hearing loss, and I'm wondering if it isn't radiation induced.

I have general weakness of the bones and muscles in my upper chest. I have broken many ribs and collarbones racing motorcycles. Feel like my neck is arthritic, and have muscle spasms in my upper back often. Also had rotator cuff surgery, and I have a torn bicep tendon. Don't know how much of this I can blame on radiation.

Glad to be alive, but it's tough sometimes to maintain gratitude.

Thanks,
Mike

m-star's picture
m-star
Posts: 444
Joined: Apr 2010

I've suffered with a fast and irregular heart beat since i was pregnant 13 yrs ago.
I have been to my dr on numerous occaisions when the palpitations got bad but by the time they give you an appointment and wire me up to ECG,the palps have stopped!
I also suffer with gastro reflux and that causes chest pain. It was only when i went to see a different doc for a repeat prescription of my Lanzoprazole (for the acid) that she questioned my chest pains.
After asking me lots of questions,she told me she was reffering me to a cardiologist.

I broke down in tears in her office but they were tears of joy that someone was actually doing something about my pains and palp's.

I had to go and have another ECG first.Iy showed nothing.
Then i had to wear a 7-day monitor and everytime i got palps of funny heartbeat i had to press a button so it recorded it. I showed nothing.
Finally i had an EKO and at the end of it,the doc went and got someone else to come in and check it. When i got the results about 2 wks later,my doc said the letter said "nothing significant found". What the heck does nothing SIGNIFICANT mean???

I asked the cardiologist previously if the mantle radiation i recieved could cause me heart problems and he said no! What hope have i got of being taken seriously and kept an eye on if the cardio' doesn't even believe the rads can do damage??

I really worry as i still get palps/rapid and strange heartbeat.Here in the uk,we cant just go to a cardio and ask to be checked out as our medical care is NHS and not private.If i could afford it i would go private for a thorough heart check.

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

I am fighting NHL. After I completed my chemo trmt (RCHOP and RICE), I developed an irregular heart beat. One beat would skip. I was given a series of test: stress test, EKG, Ecocardigram, the monitor, and you name it. The test all came back with the same results as you did m-star, "no significant.....bla bla blah). I was freaking out! It sounded like my heartbeat would get stuck after the third beat. I was in a panic.

Even thought they didn't find anything wrong with my heart, they did put me on a beta blocker: Metropolo. This decreased my blood pressure (which was already low). Over a period of months, the irregularity disappeared.

I was then taken off the medication. I have been off the meds for 1 1/2 years. I have not needed any medications. As a matter of fact, I saw my cardiologist today. She says my heart sounds great...the best she's heard all day. My heart is running well at 100%.

As a wise long time survivor shared with me: Some times these irregularities are temporary.

Take care.

bluerose's picture
bluerose
Posts: 1103
Joined: Jul 2009

We have been wondering where you were in the chatroom on the new site we are all meeting on. Did you get my message about it? This is the site where we chat now that CSN in down indefinitely, come and chat with us, all the regulars are there and some new people too. The site is:

http://www.caringvoices.ca/en/

We meet in The General Cancer Chat Lobby there.

I know that you said it isn't easy to get a second opinion in the U.K. but you have to find a way. It's unacceptable to have symptoms blown off like that. Did you have chemo in your treatments too, I forget? One of the chemo drugs I had years back damaged my heart and while you had arythmias since you were very young any other treatments could have compounded the issues so it needs to be looked at again. Keep pushing for a second opinion somehow m-star.

I went to a rheumatologist for all my aches and pains that can be quite severe last year and the results were that it was probably all 'due to the stress of the bone marrow transplant I had 18 years ago'. He diagnosed stress for 18 years ago was causing my aches and pains. Give me a break. I fought to see another rheumatologist who did extensive testing - like a dozen and one extra tests and sent me to other specialists as well and the results came back - definite osteoarthritis in 4 places (extreme in 2 of them) and fibromyalgia and possible bursitis in one hip. So you see how different specialists can be. If I had stopped at the first rheumatologist I would be in the looney bin by now thinking it was all in my head. The second rheum. told me 'it's definitely not all in your head' what joyful words those were in validation alone. I mean it sucks I have those two medical issues but at least someone took me seriously and did the testing. The first one sent me for one blood test and that was it. Idiot.

Please push for a second opinion. Love, Bluerose. Hope you get to the new chat site.

P.S. On that new chatsite there are scheduled meetings with radiation and chemo specialists anyone can attend plus a world class oncologist, come and talk with them about your issues too. Later kiddo, we miss you in chat.

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