Chemo-induced cardiomyopathy, anyone out there
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just wanted to give a quick update -- I first saw cardiologist 6 years ago because of cardiomyopathy and EF dropped to 29 after Herceptin - they believe I had a heart attack during Adriamycin.
The good news is I had my 6 year checkup this week including another EKG and ECHO. Nothing has improved but nothing has gotten worse over those years. Even my meds have stayed the same. I AM GRATEFUL and don't worry about my heart.
Sending encouragement!
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Hi guys - thanks for keeping this thread going! I'm scheduled for another echo on July 6th to see if my EF has improved from 25%. Doc has been gradually adjusting my meds: I'm now on 12 mg of Coreg twice a day and 1.25 mg of Lisinopril once a day. I still get winded going up hills and don't lift anything over 10 lbs (last month I tried walking a couple of blocks carrying a big jug of detergent & ended up breathless & nauseated - THAT was a real wake-up call). Other weird developments include outbreaks of peeling skin on my toes & palms (which they've diagnosed as eczema), occasional flickers of discomfort in my heart (similar to what I was experiencing back in 2016,) and...my knee socks sometimes leave imprints on my lower legs (water retention maybe?). Not sure how much of this is the result of my heart issues, but I'm taking note of it all anyway.
If he doesn't like what he sees in the echo, he's probably going to talk defibrillator to me. I'm so nervous about the results that I plan to dose myself up with Ativan that day!
Really appreciating your posts - Julie
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sugarplum, I know it's hard not to worry and obsess about your heart but Coreg really helped me. My EF gradually improved from about 35% to almost 50%. I am also taking it twice a day but only take 6.25mg in morning and then 12.5mg in the evening. I also take generic Benicar HCT for my blood pressure which can be erratic. I do have similar symptoms with feet and leg swelling and "flickers of discomfort with my heart" too, as well as lots of SOB. Hang in there, it can get better and anxiety only makes those heart flickers worse. Just keep track of all your symptoms and discuss with your cardiologist. If you don't like the answers, look for a second opinion. certainly before you consider a pacemaker.
Sending you my thoughts and prayers,
Faith (in the future).
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Sounds like it's an ICD for me
My echo showed no improvement whatsoever after 5 months of drug therapy, so my exasperated cardiologist has referred me to a defibrillator guy who will give me his take on things. The problem is: they can't get my heart rate down low enough for the Coreg to do its job (pulse runs in the 70's) but they also can't increase my dose from 12.5 mg twice a day, because my blood pressure is too low - hence, a CATCH-22.
This all seem so surreal as I walked 3 miles yesterday and have been doing my 5 lb (per arm) weight workouts 3X week. I guess if I drop dead, none of that will matter, will it....?!
Julie
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Sugarplum - so sorry you have not had any improvement. I understand your disappointment and frustration.
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I'm so sorry I have been gone from this thread for so long.
Sugarplum (Julie), I think getting the icd will give you some comfort. It did for me. Two months ago I had an echo and my ef was 50%. I said, oh, that must be wrong. Nope, turns out it is. That's not to say it will not drop tho. Its taken 3 years to get to 50.
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Thanks guys - at this point I'm really wanting to GET ON WITH IT but my cardio doc's urgent referral on 7/13 seems to keep falling through the cracks, despite my repeated calls to the ICD specialist's office (they keep telling me he's booked thru mid-September). I've asked them to message the ICD guy directly so he can look at my echo results and determine for himself just how "urgent" I am.
As you know, waiting is HARD...but I have to keep reminding myself that he must have other patients who are much worse off.
Appreciate you hanging in with me! Julie
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Well, next stop is the operating room (again!). Hard to believe I made it through my first 50 years without setting foot inside a hospital. Now waiting for insurance clearance so we can schedule surgery for my CRT device - should happen within next few weeks. Dr is not sure if he will be able to use my left side for placement, as that's where my port was (they removed it 12 years ago) & there may be too much scarring. I warned him that my right side is missing 20 lymph nodes - he says that side will be trickier but apparently he can go in either way if necessary. Won't be able to lift my arm higher than my shoulder for 6 weeks - how to wash my hair?! Etc, etc, etc.
The challenge now is keeping the train from leaving the station....!
Julie
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Sugarplum, I'm so sorry this is happening to you. I will keep you in my prayers.
Faith (in the future).
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Update - implant surgery has been scheduled for August 28th with a 5:45 a.m. check-in time. Waiting for insurance to approve a Boston Scientific bi-ventricular cardiac resynchronization therapy defibrillator (what a mouthful).
Two weeks away seems too long - and too short
Julie
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Wishing you very good luck and easier breathing. Prayers that all goes well.
Faith (in the future)
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Checking in to see how everyone's doing, given that Friday is National Wear Red Day! I'm 5 months out from my implant surgery and feel lucky that (so far) it hasn't shocked me yet. There have been a couple of "events" according to my device checks but they only lasted a few seconds & my heart rate didn't get past 180 (the weird thing is, I wasn't aware of either of them). My last echo in December showed my EF at 27% instead of 25% (although my cardiologist admitted that could've been the tech that did the readings). Surprisingly he doesn't want to see me & get another echo for a YEAR!? I will still get regular device checks with the surgeon however.
In the meantime, I've become lax about doing my blood pressure monitoring, still labor while walking uphill, and proceed VERY SLOWLY when carrying heavy loads of groceries the few blocks back to my office. Hope all are still doing well as we celebrate heart month in February...
Julie
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sugarplum - glad to hear your update! So thankful things are going well for you relatively speaking!
The usual wait time with ECHO is a year even with what you have been through.
I'm doing well -- My best, Denise
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Hi Everyone- I am now joining you all on this thread. I was diagnosed with chemo-induced cardiomyopathy in Feb when I had severe shortness of breath. My ef was 20-25% so I was put on entresto which has gradually increased to 97mg, lasix and toprol and wore a life vest 24 hours a day. Last week I was at work (I am a teacher) and I became very dizzy and my heart was fluttering at the same time my life vest sirened. I went to the er and they said I need to get the defibrillator immediately which I did on Weds. So far so good. I have read all the posts and feel better knowing that some of you had an increase in ef over time. I pray that will happen to me as well. I hope everyone is doing well and thank you for sharing your stories
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Welcome Tri-lady7! Wow, I'd never heard of a life vest before - I guess they skipped that with me & went straight to the defibrillator. Glad to hear you've come through that process OK. Since mine was implanted last August, it's recorded 3 times when my pulse went to 185 or so for a few seconds. None of them was I aware of however. It's set to shock me at 220 so I hope I never get there! For the past few weeks I've been noticing on & off flickers of discomfort, but since they haven't shown up on the readout I'm going to wait until my next appointment with the surgeon on 5/31 to address it (unless things get worse, of course). I'm currently on 12.5 mg of Coreg twice a day and 5 mg of Lisinopril once daily. Blood pressure too low to increase my dosage so that's why I had to have the defib put in.
Happy to see this thread still active!
All the best - Julie
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Hi Sugarplum- thank you so much for your response! The life vest was really interesting as it is a vest you wear that monitors your heart and if it detects any irregularities then it will siren and could ultimately shock you if you are unconscious. It’s just cumbersome to wear and you wear it 24/7 only to take off for the shower. My doctor wanted to see how the meds worked before getting the implant. However, I had a ventricular tachycardia eposide so they decided it was important that I get the implant. It’s not bad but this whole process has been unsettling to say the least. So glad everything is going well with you! I will keep updating my progress. It’s so nice to be able to share with others that understand!
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Yup - we get it!
Julie
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Hi there ladies:
I am an old hand at this CHF thing
DX'd In 2005, 4 years after chemo. I also have a defibrillator and don't tolerate the heart med well. (Low Blood Pressure) I was not shocked until last year and have mostly lived a pretty normal life with an EF of 34%. I now have a ventricular arrhythmia problem and I am on a couple of meds that are helping but make me feel like crap. Anyway- feel free to ask questions I'm not online often, but I will make sure tocheck this site Karenmarie
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Hi karenmarie - boy, you HAVE been at this a while! I was comforted to know you were able to go 13 years without your defibrillator having to "deliver therapy" (as it's so euphemistically put). Would be curious to know what meds you are on now and what the negative effects are...?
I had my routine followup with the surgeon yesterday along with a device check (thankfully no other incidents of abnormally high pulse since March 5th). He wants to start ramping up my meds & doubled my daily lisinopril to 10mg (will be having blood drawn in a week to check liver function). I've been assigned a personal "coach" who is actually a PA specifically trained to fine-tune medications for his heart patients. Don't like the sound of the word "tolerance level" - to me that implies I'll have to suffer side effects until they get my dosages balanced (so far I haven't noticed anything from the Coreg or the lisinopril, for which I feel lucky).
Will keep everyone posted on how this progresses...Julie
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Here I am again, after getting another echo yesterday along with meeting my new "medication coach". I was thrilled to discover that my EF has increased from 27% to 35% over the past six months. I haven't been feeling any different lately - in fact, a little worse in some ways - but I'll certainly take those results. My blood pressure is too low for much medication tweaking, but she did suggest adding 12.5 mg of Aldactone to my daily Coreg and Lisinopril. I am balking at this because vomiting is listed as a common side effect (I am emetophobic & haven't thrown up in over 50 years - and that includes chemo!). She wasn't sure if I could tolerate it anyway without becoming dizzy & lightheaded, so I may just pass on it for now and see what happens. Anyone else have experience with this drug?
This is all so ironic to me - a person who has always HATED taking pills (Mom couldn't even get me to take aspirin when I was little!)
Take heart, my sisters.....Julie
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Hi Julie- good news about your ef increase! I take entresto, toprol, and lasix. Is aldactone a diuretic? I take lasix which is a diuretic as well and do not have any nausea or vomiting. May I ask how often you get an echo? My cardiologist says only if I have issues. I would like to know if my efhas increased though! Praying for continued health for all of us!
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Tri-lady7 - yes, Aldactone is indeed a diuretic; HOWEVER in reply to my gentle protest, my coach told me today that I don't have to take it for now. She is having me monitor my BP twice a day and after a week will decide whether to increase my Lisinopril from 5 mg. She did say she wished I could take Entresto as it's a really great medicine - but again, my BP is just too low. She wants to schedule my next echo in about 3 months if I do end up increasing my dosage (which is a stark contrast to my original cardiologist who said once a year).
BTW, my final EF turned out to be 30% - but it still shows an upward trend over the past year (from 20 to 25 to 30). I'll take that any time!
Julie
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Hi all, lovely to see this thread. And to read that so many of you are achieving improvement in Ef over time. I’m 63 now and was fairly fit when I was diagnosed just over a year ago. AC chemo affected my heart straight away, and was stopped after 3/4. My ef was mid to high 40s, but I really noticed the difference! I’m on bisoprolol and exforge, no diuretic, and really try to exercise. I feel so much better (much more alert) when I manage it. I’m doing a belly dancing class and Pilates each once weekly, and you’re inspiring me to concentrate more on walking and weights. I’m very much hoping for better numbers when I have my next ecg, so far there’s been no improvement.
Keep on keeping on, eh? Love and b
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Welcome to you, Sue from Down Under! You took me clear back to 1982: I was recently divorced and looking for ways to spend my evenings, so I signed up for a night class in belly dancing at our local community college. The first hour was always spent working out and the second hour putting together our individual routines, which we each performed for the rest of the class at quarter's end. That definitely took a lot of muscle
I will be thrilled if my EF ever manages to get back up into the 40's (I was already down to 44% before my 2017 hip replacement surgery, which is where this whole ride began).
Best to all - Julie
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Hello to my heart sisters - just wanted to check in & tell you that yesterday's echo revealed my EF has increased from 30-35% to 40-45% in the past 6 months! My cardio guy told me this with a big smile on his face, but was at a loss to explain why it was happening. I replied that I'm just glad to hear it!
Meds still the same: 12.5 mg Coreg 2Xday and .5 mg Lisinopril at lunchtime. CRT-D showed no fibrillation events since my third one in March (I was completely unaware when they were happening). And so far no shock therapy (whew!).
Hope you all are coping well through the holiday season...
Julie
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Hi Michele2013,
I have just been diagnosed with Doxorubicin induced cardiomyopathy. My oncologist recommend that I have an echo before during and after my chemo treatments. I started with Doxorubicin for four treatments after which I was given my second echo and was then referred to a cardiologist and given the diagnosis of cardiomyopathy. Like TNBC wasn't enough. I was put on Lisinopril and Carvedilol, one is a beta blocker and the other an ace inhibitor. I then finished my four Taxol treatments. I have had my second cardiologist appointment and now setup for a stress test with echo later this month. I am on the the fence about starting radiation. I know that it can affect my heart and really don't want to chance anymore damage. I noticed that some people talk about the function percentage I haven't been given those types of numbers but will ask my next appointment. I was happy to find this community. I have struggled with both diagnosis so close together being 39 with teenagers still living at home. I question my life expectancy and find my self jealous of others and their health. I hope all is well with you and hope to hear from you and others with similar diagnosis.
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Welcome, Randd7!
We're so sorry you find yourself here, but we're glad you've joined us and hope you find this to be a place of support. It must be so very difficult to process and manage both diagnoses, but we're all here for you!
The Mods
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Randd7, how did your echo turn out? Are they going to have to adjust your dosages? What day are you starting radiation? Mine was on the right side so not as much concern about heart damage (unfortunately the red devil had already done enough!)
Keep us posted on what's going on with you - we get it!
Julie
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Hi Sugarplum- I just happened to log on and saw your post. So happy to hear of your ef increase! So glad the meds are working what a relief for you. My doc doesn’t believe in doing echoes frequently but I managed to talk her into one for my next visit in March. She agreed because it will be just after a year since diagnosed with CHF. I am hoping that a year of taking the meds and living a heart healthy life has made a difference.
Randd7 - so sorry that you are going through this. Your doc should be able to tell you your heart ejection fraction from the echo you had. I have an ICD-S defibrillator and am feeling great. Good luck to you!
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Have any of you ladies with an ICD has a breast MRI since getting the device? I had been getting yearly breast MRIs before my CRT-D implant, and am due for one next month. I don't know if I should get it or not or do some other type of screening instead. Maybe a screening ultrasound of both breasts??
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