Chemo induced Cardiomyopathy

robin_in_SJ
robin_in_SJ Member Posts: 46
edited January 2017 in ILC (Invasive Lobular Carcinoma)

Greetings,

I've been following the posts on the board but I'm I first time poster here, I am wondering if anyone else has been diagnosed with Chemo induced Cardiomyopathy? If so, when, what treatment plan are you on and have you seen any improvement in heart function with treatment?

I was diagnosed with chemo-induced cardiomyopathy on Monday and I am having high anxiety, I had to dig out some Xanax from by treatment in 2013, never liked it but it helped this week. After chemo and radiation in Nov 2013, I had fatigue - but who didn't? I thought it was normal but over the last yr. my fatigue increased and last winter I started to have shortness of breath when walking a hill at work. I talked to my Oncologist and Endo, and anyone who would listen. I ended starting ritalin last winter so I wouldn't feel that I was going to fall asleep driving home from work. The last few months the breathless and fatigue increased.

Last week I had an echocardiogram done. On my baseline echo before treatment - LVEF was 65% nice and normal. On my echo last Fri. the LVEF was 35-45%. A significant decline. Yesterday, I saw a cardiologist who treats chemo induced cardiomyopathy. He started me on an ACE inhibitor (lisinopril) for 5 days then I'll call him and if all is going well I'll start a beta blocker and or increase dosage of ACE inhibitor.

I have been having lots of anxiety with this diagnosis, which I feel is as serious as the cancer. He is also scheduling a stress echo to rule out any other issues. He said I wasn't retaining a lot of water and recommend life style changes. He will discuss with the oncologist what to do about the AI, I'm on a holiday but AI also can effect the heart. I'll know when I call next week what their recommendation is; stay on Aromasin, change or stay of an AI.

I have to take my BP, pulse and weight every day and report back to him with changes in 5 days.

I have learned a lot from the posts here and hoping that I might learn some more.

Thanks,

Robin

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Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2016

    Dear Robin, I am hoping someone will post about this soon. ILC boards are sometimes not as active as others, so you might try posting this several places in different discussion links and see if you get better feedback. I know you need some reassurance, and I hope you get it right away. Hugs!

    Claire in AZ

    PS I know about the anxiety; I've been dx with mild PTSD caused by my late husband's cancer dx and subsequent rapid decline and death when I was in my 30s, and my own dx years later didn't help. I just renewed my own Xanax rx--I take half of 1 .25 mg tab occasionally and it takes the edge off my jitters and rapid heartbeat, etc. just enough so I can calm myself down the rest of the way, most of the time. <3

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2016

    Oops, and I just saw you are posting in different places! I hope you get relief and reassurance soon from some on these boards.


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  • robin_in_SJ
    robin_in_SJ Member Posts: 46
    edited May 2016

    Hi Claire,

    Thanks for the reply, yes I did post on another board. It seems this is a very rare side effect and at the amount of Adriamyacin I was receiving my MO for the last 18 months when I've complained about my symptoms would tell me it was so low that it was unlikely from the Chemo. The cardiologist said he sees with lower doses as well as higher does.

    The Zanax is helping and like you I only take it as needed. So far I haven't had any side effects from the ACE inhibiters and I talk with the cardiologist tomorrow about adding in a beta-blocker. I am hopeful that we can stop the progression of the cardiomyopathy. I posted on the ILC board because it's often treated with ACT mix and Adriamyacin is know to cause cardiomyopathy, havinv a mix of drugs and radiation also increase the risk.

    I am so sorry to hear about the loss of your husband, I can't image how difficult that was and then to have to confront your own diagnosis.

    Robin

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  • SuC
    SuC Member Posts: 55
    edited May 2016

    ACE inhibitors are a great drug for management of heart failure, hope they work for you. Avoidance of salt and salty foods is also good as they can lead to fluid retention. Look after all your cardiac risk factors - weight, diet, smoking, cholesterol, exercise, diabetes, etc - any that apply to you. Make sure they check your kidney function too. Hope everything stabilises for you



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  • vlnrph
    vlnrph Member Posts: 1,632
    edited May 2016

    Robin, heart problems have been a well known result of doxorubicin therapy for decades. There is a reason the nickname is 'red devil'. I was relieved when told my treatment would only be TC. We've had a few older ladies in our local support group dealing with CHF so it's great to have a cardiologist who has experience with this.

    SuC also has good advice. How are you doing on the beta blocker?

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  • robin_in_SJ
    robin_in_SJ Member Posts: 46
    edited May 2016

    SuC and vlnrph,

    Thanks for sharing your thoughts. The good news is I'm not retaining fluid, don't smoke, eat healthy, don't use salt, have a healthy weight and my glucose. I walk several miles most days but by mid-afternoon I just want to take a nap. I would say I'm doing okay, not great but doable on the ACE inhibiter and beta blocker. I often feel light headed or dizzy but it's not bad. I'm lucky that I can work at home a few days a week. I have an hour commute on 95 and hate feeling tired and not as alert as I feel I should be. I am taking time off when I can and hope my body will soon adjust to the meds and the cardiologist stops increasing the dosage soon. I feel that just when I get used to the new dose he changes it. I'll talk with him tomorrow and see what he says. In June he'll do an Echo stress and we'll know more about how my heart is doing--same, better or progressive damage. Optimistic the disease is not progressing.

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  • beth1965
    beth1965 Member Posts: 455
    edited June 2016

    Hi my heart was messed up bad after chemo for a few years they said I had lots of aggressive cancer and were going to give me everything they could as far as chemo goes. . I had fatigue, flutters, irregular heartbeat, dizzy, nausea, sweats etc...not sure if its the same as you but sounds like it. This has been a huge problem for me especially if I get upset or dare cry from sadness I pay for it as my heart gets messed up for days. I can tell you they gave me a bad prognosis in beginning it was hard not to be upset or anxious.

    Its not so bad now as it was but it still lingers there annoyingly

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  • PiNKiDC51
    PiNKiDC51 Member Posts: 61
    edited September 2016

    Hello all -

    I am looking for anyone diagnosed with chemo-induced cardiomyopathy and came across this page (though it appears to have been inactive since June). Anyway, I have been diagnosed with this after completing 4 rounds of Adriamycin/Cytoxan (which hospitalized me twice - neutropenia) and 7 rounds of Taxol. My MO has stopped my chemo and I've been referred to a cardiologist and they've started me on a Beta Blocker. I'm told that there's no evidence of muscle damage so recovery of heart muscle is possible. It's just all a bit overwhelming and scary to have this diagnosis. So, hoping to connect with survivors that have had a positive experience getting through this situation to hear your stories -

    • What was your lowest ejection fraction when diagnosed? (Mine is 20-25%)
    • What types of medicines you were provided to overcome cardiomyopathy and how each helped?
    • Did you have a high heart rate and what besides the beta blocker were you given to reduce the heart rate?
    • How long it took before for your heart rate lowered?
    • How long it took for you to notice a difference with regards to shortness of breathe and were able to begin exercising again/doing more than walk?
    • How long it took you to make a recovery? Was/is your recovery a complete reversal?
    • How long you have been recovered?
    • And other helpful information
    Please no negative stories as I'm already overwhelmed enough.
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  • robin_in_SJ
    robin_in_SJ Member Posts: 46
    edited January 2017

    Hi PinkiDC51,

    Sorry I didn't respond sooner to your questions. I haven't been on in a while but I know how scary and overwhelming this new diagnosis can be. To answer your questions:

    • What was your lowest ejection fraction when diagnosed? (Mine is 20-25%)
    Mine 35-40% My baseline before chemo was 65%
    • What types of medicines you were provided to overcome cardiomyopathy and how each helped?
      • Started with beta-blocker Bisoprolol 10mg daily for 2 weeks, was so lightheaded and fatigued that I took off work waiting for my body to adjust.
        • After 2 weeks cut it 1/2 to .5 mg daily
      • Week 2; added ace inhibitor - Lisinopril 10 mg for 1 week
        • Week 2; cut it in 1/2 to .5 mg daily
      • after 5 months Stress echo showed improvement to 45-50%. My cardiologist was so happy with the results that he had to go look at the images himself. He was aggressive with the treatment and I would say the first 2-4 weeks were tough and I took a medical leave as my body adjusted. Extreme fatigue and constant feeling of being lightheaded or dizzy. Once we cut the dose I felt better. Not 100%
    • Did you have a high heart rate.
      • No normal but after starting meds it went way down and is still low -- now anywhere from 48-55 bpm
    • How long it took before for your heart rate lowered?
      • Not long--I would say the 1st week or 2.
    • How long it took for you to notice a difference with regards to shortness of breathe and were able to begin exercising again/doing more than walk?
      • A while may 4 weeks but I still have shortness of breath and only walk and can't exercise without feeling dizzy.
    • How long it took you to make a recovery? Was/is your recovery a complete reversal?
      • No, never thought it would be but the goal was to stop the progression of damage and if we got an improvement that would a plus.
    • How long you have been recovered?
      • I don't feel that I am recovered but have managed the progression.
    • And other helpful information
      • After about 4 months I noticed the breathless was increasing and I started to have swelling in my feet. Boots I wore last year were hurting my feet and 2 pairs I couldn't get one. Saw my Cardiologist and started on Lasix to reduce water retention. I only took 2 doses 4 days apart before stopping because I couldn't tolerate it -- back to the fatigue and feeling like a zombie. Then started spironolactone to control water retention. Anothe.r new normal which has been working well for the last 2 months. Watch out for water retention.
      • Please no negative stories as I'm already overwhelmed enough.
        • Like you I was so overwhelmed and I became depressed, I started Welbutrin which has been a great help, I feel so much better and it helps with my fatigue. My psychiatrist worked with the cardiologist to decide what I could take without negatively impacting my heart. I am feeling better and getting out with friends and doing more. For a while I went to work and came home and went to bed for a few hours before eating dinner and maybe doing a chore or to. I've learned to pace myself and save my energy for what is important.
    I hope your feeling better and adjusting to the medication. Please post and let us how you're doing.

    Robin

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