Late-onset cardiomyopathy after adriamycin

nan_margaret · September 2017

I'm new to the forum and am seeking information and to connect with others who have experienced late-onset damage from anthracycline therapy, resulting in cardiomyopathy and heart failure.

I was dx with BC 25 years ago and had high-dose doxorubicin as part of my protocol. Thankfully, I survived the BC which had spread to two lymph nodes, but two years ago I developed dilated cardiomyopathy, which is thought to be caused at least in part by that chemotherapy.

I would appreciate being in touch with others who are experiencing this unexpected side effect. Also, I'm curious to find if there is any follow up on a national scale to track patients in this group. It results in serious morbidity and often a need for heart transplant as heart failure progresses. Any information would be much appreciated! Thank you.

Denise-G · September 2017

Both my sister and I had early onset cardiomyopathy immediately after AC chemo. I write a breast cancer blog and hear from many women who have heart issues years after chemo. It is one of my passions to tell women to get your heart checked during and after chemo - years later! You are the longest survivor I have read about having heart issues post chemo. I am glad you posted here to warn others!

My best advice is to seek a treatment from a CardioOncologist - a rather new field. Large cancer treatment centers have these specialist who specialize in heart issues of cancer patients and survivors. My sister and I sought such help and it has been invaluable. Our hearts are doing well, on meds, but doing well.

I know of no national scale study to track patients. It would be a great thing, however.

All my best to you!

Colt45 · September 2017

Thank you nan margaret and Denise G for discussing this here. It's a good reminder to be vigilant about heart health long term.

nan_margaret · September 2017

Denise and Colt, thank you for your replies. Denise, I want to compliment you on your blog--it's great that you've put so much time and effort into helping others!

I'm glad you mentioned a Cardio-oncologist. I'm being treated at a major academic teaching hospital in my hometown, but they don't seem to have this speciality yet. However, I found that a cancer center in Tampa, which is a couple of hours away, does have Cardio-oncologists, so I will get a second opinion there.

Unfortunately, I was not followed long term regarding my heart. And even when issues began about five years ago (tachycardia and arrhythmias) no one did an Echocardiagram or MRI. I listed my BC hx and that I had had chemo on intake forms but it didn't even send up a red flag with the cardiologist who was treating my "benign" arrhythmias. I didn't tolerate beta blockers due to low BP, so I muddled along.

Then, I had an episode of errant pain which sent me to the hospital and it was discovered that my EF was only 23%. Because I was still active (attributing the fatigue I'd been having to hypothyroid and a history of Lyme) everyone was shocked. I then started having more dangerous arrhythmias and heart block and had a pacemaker put in, then later an ICD/defibrillator.

It seems that with this condition early intervention is crucial. I'm glad that you and your sister's heart issues were picked up early because at that point treatment has a better chance of success.

In terms of national surveillance and follow-up, it appears that patients are checked just after treatment--I had a heart scan which was normal immediately after--but there is very little or no systematic follow-up later.

It has been known for at least a decade that women tx with anthracycline therapies for BC are presenting with late-onset toxicity, yet clearly tracking of those at risk has not caught up.

Women in middle age can present with many different conditions that include fatigue as a symptom: thyroid issues, hormonal issues, vitamin deficiencies, stress and lack of sleep. All of which can obscure the possible underlying issue of heart problems.

General practitioners, oncologists and, especially, cardiologists should be following any patient in this category with systematic follow-up. Those criteria are clearly not part of any standard of care as of yet.

I have contacted the National Cancer Institute and the FDA about this issue and will report back here.

Since many here may not be familiar with the term "anthracycline," I might create another post which could alert those being treated to the need for vigilance down the road after treatment with drugs that can impact the heart. It's a lot to take in when recently diagnosed, but information gives us the power to control the outcome.

Denise-G · October 2017

nan-margaret - glad to see you are getting that second opinion - would that be at Moffitt?

Please post back and let us know what you found. Thanks for the info and also your kind

words about my blog.

Susug · October 2017

I am so glad cardiomyopathy has been brought up it is so important that everyone to stay vigilant. I was diognosed in 2010 with cardiomyopathy EF30. Long story short with meds I got up EF 43 I felt better. This diognosed set me back a little just the thought that it doesn't have a cure and will never get any better. Fast forward to 2014 DX L breast cancer radiation then 2016 R breast cancer radiation. Thank god I didn't have to have chemo. THIS Week I have been diognosed with kidney disease due to my HEART !!! Damn I am deavastated I'm in stage 3 waiting on a specialist. Not one doctor told me cardiomyopathy could lead to kidney problems. I'm dealing with three illnesses with out a cure. It sucks! So please ladies stay on top of your heart so it won't turn into another condition. All I know at this point is my kidneys are the size of a child and it's due to my heart. Hugs to all

Denise-G · October 2017

Susug - OH SO SORRY for all you have been going through and been through. I REALLY APPRECIATE your warnings about the kidneys.

No one has ever mentioned that to me! YIKES - another thing to worry about as you well know.

Sending all my best to you!

Susug · October 2017

Denise - thank you for responding. I hope this information will help othes

MAYNARDMAC · January 2018

Hello!

For those of you with pacemaker/defibrillator device, what are the inconveniences or hassles of having this implant? My LVEF is 25-30% and I am taking coreg and losartan. I also have left bundle branch block. The only symptom that I had was hypertension.

Thank you!

MissingLeslie · September 2018

My sister passed away in July from congestive heart failure caused by doxorubicin (aka Adriamycin). She was only 49. Her pacemaker/defibrillator did not save her and she passed in her sleep. Just prior to her death, her ejection fraction was less than 20% and yet she still wasn't a candidate for a heart transplant. Her death caught everyone --even her doctor-- off guard.

Seven years ago, she had been diagnosed with cancer in one breast, which had spread to a nearby lymph node. Following treatment, she had been cancer-free five years only to be permanently afflicted by the effects induced by this particular chemo drug. Her death, and that of others afflicted, is senseless.

There is a lot of downplaying and understating of the dangers of this drug. Even on the Mayo Clinic's website, it states that this class of chemo drug "may cause temporary heart damage." Temporary? I think not.

I wish more women starting chemo were made fully aware of the destructive side effects from the anthracycline class of chemo drugs. My sister, and others like her, should be alive and well after successful cancer treatment.

Moderators · September 2018

Hi there, MissingLeslie. We are so sorry to hear about the loss of your sister. We hope that by sharing stories like yours, more women are made aware of the potential complications of treatment. Sending peace to your family.

The Mods

Late-onset cardiomyopathy after adriamycin

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