Chemo-induced cardiomyopathy, anyone out there

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Comments

  • tri-lady7
    tri-lady7 Member Posts: 95

    Hi barb3246- I didn’t get a breast MRI but I had to get a MRI for my back. I have a Boston Scientific s- ICD so a rep from there came and turned it off so I could get one. It was not problem. Good luck!

  • sbelizabeth
    sbelizabeth Member Posts: 956

    Barb3246, is your ICD ok to go in an MRI? Some of the newer ones are OK for MRI.

  • sugarplum
    sugarplum Member Posts: 75

    Hey everyone...just checking in to advise I had my 6-month echo on June 5th. Nothing like visiting a medical facility during a pandemic, right? ANYWAY - the good news is: my EF is the same. The bad news is: my EF is the same. I must confess I was hoping for another meteoric improvement like I had in December when it jumped from 30-35% to 40-45%...oh well. Sounds like I might be hitting my plateau.

    In any event, he did push my next visit out to a year instead of six months, and made no changes to my medications. I guess in these times of turmoil sometimes the best we can hope for is simply maintaining the status quo...

    Best to all - Julie

  • moderators
    moderators Posts: 8,637

    sugarplum, thank you for sharing your follow up! Sending you our very best. Medicating

  • tri-lady7
    tri-lady7 Member Posts: 95

    Hi Everyone- I was just checking in and you’re right Sugerplum maintaining is good! I finally got my echo this week. I was supposed to get it in March but of course with the pandemic it was delayed. I stay in my house for the most part being diagnosed with CHF. However, I was very happy to hear my EF went from 20% to 35%. I’ll take it! My doctor said she won’t make any changes for now. So I am going to step it up on the diet and continue working out. I hope everyone is well during this terrible virus!

  • sugarplum
    sugarplum Member Posts: 75

    Yay Tri-lady7! A 15% jump in EF is pretty significant - keep up the good work. Since we've been in lockdown & working from home, I've made it a point to take 3 walks per day (one for each coffee break and a longer one after dinner) and my legs do actually feel like they're getting stronger, even though my EF isn't reflecting anything yet. It'll be interesting to see what happens after the next year...

    Hugs & hang in there - Julie

  • lexie2002
    lexie2002 Member Posts: 59

    Hi Faith 840

    I too ended up with CHF because of chemo. I asked my Oncologist if many of her patients have this. She told me 1 in 1000 is what's she's experienced! Why am I always that 1? I recently called my primary doctor because of some nagging feelings in my right lower back. My right hip joint has been painful on and off due to Arimidex. She suggested getting a chest x ray and I am so scared. I just want to be ok. I have to admit I haven't been wonderful when it comes to diet and exercise but the last month or so I have made changes. I have wanted to make changes also because my fasting blood work sucked! I don't want to end up with diabetes too. I hope this response finds you doing better.

    I posted a bit ago asking to hear from anyone with chemo induced heart problems. Not too many responses so I thought this terrible result from chemo was maybe limited?

    HUGS,

    Margo

  • amanda6
    amanda6 Member Posts: 50

    I have radiation induced heart disease, not quite the same thing but close. My tumor was in my left breast. I had a damaged mitral valve & had open heart surgery a few years ago to repair it. Also had heart rhythm issues that are resolved with beta blockers. The outcome was excellent. I've " met" a handful of other women on various heart valve forums over the years with the same thing - all had left sided bc & tumor in the approx 3:00 position.

    Best wishes Lexie, hope all goes well for you:)



  • sugarplum
    sugarplum Member Posts: 75

    Just checking in with everyone - this has been a quiet thread lately. Hope that means all is well. I had another echo last Friday and contrary to what I had feared, it's still showing a slight upward trend (43% EF in Dec 2019, 44.6% in June 2020, and now 46%). I'll TAKE it!

    I'm now fully vaccinated but still in lockdown mode, mainly because I'm too scared to go anywhere. Fortunately I have the ability to work from home, and can also escape to visit my retired husband at our beach house every weekend.

    On a somber note, my onc is threatening to take me off Arimidex at my June appointment because he says 15 years is long enough. I beg to differ, but will just have to let my upcoming blood tests and DEXA scan make that decision for us.

    Hope & hugs to all - Julie

  • pip57
    pip57 Member Posts: 7,080

    Hi Sugarplum. I’m back after several wonderful years I never thought I would get.
    However, I’m now experiencing the long term effects of chemo and radiation. Heart failure is one of them.

    I was taken off of Arimidex after 12 years. I fought hard to stay on it. My oncologist at the time had studied my case in medical school so he was very familiar with my history. Looking back, I’m glad that he stopped it in light of my heart issues now. But it was definitely a scary time.

    I’m at the beginning of this new adventure and trying to sift through all the info.

  • lexie2002
    lexie2002 Member Posts: 59

    Hi pip57

    I thought I was the only one suffering from heart failure due to chemo. I've been on Arimidex for around 7 years now. I hope your doing well now? HEALING HUGS

  • sugarplum
    sugarplum Member Posts: 75

    Checking in with all my hearty friends on this thread. Just had my annual echo which showed a drop in EF (down from 46% to 40%) but at least I'm still in the moderate range. Sadly, my beloved cardiologist died of kidney failure last summer, so I met my new guy last week and he is the 4th doctor to suggest I switch my Lisinopril to Entresto. I've been hesitant because my blood pressure is already too low, but based on the decline in my EF have decided to finally go ahead with it & see how tolerable it is. I'll have a 2-day "washout" period before starting the Entresto next week, and have purchased a brand-new BP arm monitor for the occasion. Will let you know how it goes - wish me luck!

    Julie

  • rbbaker1
    rbbaker1 Member Posts: 5

    Hello Everyone,

    Since around March I have been experiencing low blood pressure issues of average 97/76 with being out of breath walking and doing normal household activities. A few days my bp has dropped into the 80's and when that happens, I get a little light headed, I get heart palpitations and I don't feel well. My last echo was 9/16/21 and my EF was 65%. My bp before treatment was always good with average of 120/80. Has anyone experienced this? My onco referred me to my gp and I have an appoint on the 28th. Thanks in advance for any info.