Chemo-induced cardiomyopathy, anyone out there
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Jen, I am also on Coreg and my ace inhibitor is Benicar Hct. Both of those keep my heart rate low and blood pressure under control but I still have SOB which is probalby due to the drugs I take for the cancer, I had a hard time finding the right ace inhibitor because they all made me cough except the Benicar. Now, lucky me, my medicare drug plan no longer covers it, so I have to find a new plan. Nothing is easy these days.
Hope you find the right right drug to help you.
Faith (in the future)
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a little more about me and my meds. I have been getting yearly echos to monitor a mitral valve prolapse. Apparently the dose of Adriamycin that I had in 2014 was below the dose that require heart monitoring. My last echo was in mid September - my EF had dropped to 37% - my previous three echos had shown decreasing EF but always within normal range. My heart rate has been 90+ since mid-summer.
My cardiologist started me on 3.125 mg of Coreg twice a day, I did that for a week and then doubled it. It knocked me out, I was hitting a wall every day between 3 and 4:00 and was in bed by 9:00 every night. I have four teens at home, this was not going to cut it for me. After another week and a half (now almost six weeks on coreg) it was like someone flipped a switch. I feel fine! My blood pressure is low-normal and my heart rate has come down a little, hovering in the mid 80s. It needs to get to an averge of 70 or less. Yesterday she started me on 2.5 mg Enalapril once a day.
She said if my EF has improved enough she won't have to increase my Coreg again. I have an MRI scheduled for late next week to get a true EF and to check for scarring. Fingers are crossed!
I exercise regularly - 45 min 5x/week - doc said that's probably why I had no clear symptoms of the cardiomyopathy. The meds have definitely kept my heart rate down while exercising and things that had become easy are a little hard again. But I'm glad I had this habit set before dx, I'm sure it would be hard to just be starting it now. And I know that it's essentially saving my life, that makes it easy to do every day.
I'm so glad I found this thread, I'd really like to stay in touch.
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jenwithfourkids,
How did your MRI go? Sorry, I have been away. My cardio told me my EF 25% is not reversible and it has put me in a serious funk.
Still lots of fatigue and sob.
Michele
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hi Michele, thanks for asking. my EF was 38% on MRI which made my doc happy since it was consistent with the echo I won't have to do another MRI (which sucked, btw!). upped my Coreg a little bit. BP is still low/normal and HR is still hovering in the 80's but I'm not seeing over 90 so much anymore. sob has also improved.
Do you know why your doc says it's not reversible?
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Hey there,
The way I understand it is, if I had (during chemo) my onc had monitored my heart closely, he would have seen a decline and could have changed treatment. Since I completed the dosage, it had cumulative effects on me. So it's just managing the symptoms for me.
So happy to hear you feel better. If your on FB, I recommend a group called cardiomyopathy support
Michele
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Yes, managing symptoms with pill and more pills :-( After my diagnosis and treatment with an ACE inhibitor and Beta Blocker in May/June I had a few good months (July&Aug) but in September I started to feel the fatigue building up and thought it might be a result of starting back up on Aromasin. Saw my oncologist in October and took a 1 month holiday but still felt fatigue. Called my cardiologist and saw him last week he started me on diuretics to remove the extra water I've been retaining. I also saw my therapist and he cleared with my cardiologist taking Wellbutrin to help with energy and depression.
I'm glad to have the Wellbutrin it is helping to reduce the fatigue but I still get tired easily. Since I just started it I hope the benefit improves over the next few weeks.
I wish my oncologist had followed up with my complaints of fatigue earlier which really started a year after treatment. I told every doctor it was my biggest complaint but I guess on hindsight I should have made it more of an issue but I just didn't know if it was normal after all the treatment. I love my cardiologist and feel good in his care.
Michele, I'll look up the facebook. I feel I could use it.
Robin
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Posting to bump up this thread. Robin and Michelle, how are you doing?
I switched doctors since I was here last - I found a cardiologist who is also an oncologist specializing in chemo-induced cardiomyopathy. He has eased my fears tremendously. I'm currently on 25 mg of coreg twice a day - the max dose he wanted me on. He took me off of the ace inhibitor - not sure if he'll put me back on that. My last echo showed an ever so slight improvement in EF - I think it's hovering around 38%.
Overall I feel pretty good and he is pleased with where I'm at. Anyway, I just thought I'd check in.
Jen
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Glad to see you bump this thread. I just had an echocardiogram today and will find out Friday what the results are. I passed out a couple of weeks ago and my DH wanted me to get some tests done to see if we can figure it out. Since I was on Ibrance and letrozole besides BP meds and Coreg, who knows? We are also playing around with different BP meds because my insurance quit covering the one I was taking. My MO took me off the Ibrance for a couple of months so that helps me feel less fatigue. I am also feeling less dizzy. Right now I'm taking a BP med twice a day with no diuretic and I like that my dry mouth is better but not sure if my BP is very controlled. I only take 6.25 coreg in the morning and 12.5 in the evening. Seeing a new cardiologist on Friday, maybe she will change things up. I'll keep you posted.
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Hi Faith,
You've been through a lot! I hope your echo is normal.
I'm not on a diuretic - but my mouth is constantly dry - I hate it. I thought it was from my Coreg, but maybe not. I take Amitryptaline, maybe it's that. who knows.
Jen
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Well I saw the new cardiologist and I'm not sure I like her. We talked a lot about my BP meds and I'm now back on the generic form of my original Benicar HCT. So, back to dry mouth again. She didn't even mention my echocardiogram until I asked about it. My HR function is 40-45 about the same as a year ago. So that's good. No mention was made of the Coreg dose and I forgot to ask. I think these doctors are just going through the motions sometimes. I'd like to find a different cardiologist but this one is conveniently close by and in the same hospital as my MO. I'll have to think about it later. Right now, I'm just sick of doctors.
Have a good night,
Faith
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I'm sorry, Faith.
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Jen, thanks for your concern. I just needed to come here and vent. We all need a safe place to do that on occasion. Hope you are doing well
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Hi guys - I'm actually at the beginning of this whole process, so don't really know yet what I'm up against. I had a MUGA scan before I started chemo back in 2006, but they've done no heart tests since except a routine EKG prior to my right hip replacement in 2014. Last year I began noticing missed beats which a Holter monitor identified as PVCs. There were also occasional little flashes of heart pain which were never really explained. This year a routine EKG turned up a left bundle branch block which led to a nuclear stress test, revealing my EF is at 44%. I visited a cardiologist yesterday who wants to do a CT angiogram to make sure he can clear me for left hip replacement (which is already scheduled for October 11th). If that shows problems, the next step is an invasive angiogram.
I'm really trying hard not to freak out as this is all so new to me - I've NEVER had any heart problems in my 61 years so it's a whole different language to learn. I'm also wondering if the Arimidex I've been taking for 10+ years could be contributing to all this...
Will continue to watch this thread with interest - Julie
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It remains to be told by further testing if this is chemo-induced or systemic lupus kicking my heart and lungs. Rheumatologist said pulmonary hypertension with enlarged heart. That was with an ECHO and high def CT of chest, report said mod enlarged and the PH is definite but not sure the real degree.
Cardiologist tomorrow. To check degree of the PH they want to run the catheter into the heart, my heart. Not so sure of this.
I know I was struggling with lupus and shortness of breath for long time but I think I was on Ibrance / Femara when my heart started thundering. Need to find some record or remember. Or it could have been when on Xeloda or that just aggravated it more. I was also on Faslodex / Arimidex for about three years.
But have been a mess and the new rheumatologist has uncovered the problem and we are on the trail of getting me better.
Right now rheumatologist has me on a low dose prednisone to give some relief, also CoQ10, hawthorne and L-arginine, L-carnitine, etc. Lasix.
Oncologist (new for me too, and a real gem) today told me to take a Xeloda vacation, so an extra week off between. PET CT Monday.
Oh and pulmonologist October 11. I feel so special. NOT.
Read all your posts and some other referenced threads and checking into the FB group mentioned on another thread here at BCO.
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Hi sugarplum and bluebird - so sorry we are all here! that's all. Oh and big hugs all around!
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I had a follow up echo last week. My EF is at 53%!! It was 36% when I was first dxd with CM. I take 25 mg of Carvedilol 2x a day. Looks like that's the dose that will keep me healthy.
How is everyone else doing?
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Jen, just saw your post. An EF of 53% is awesome, I think that's considered in the normal range. Mine never seems to get much better than about 40%. However, I only take 6.25 in the am and 12.5 in the evening. It seems that if I take more than that my feet swell a lot. However, I'm now off the Ibrance which seems to have helped reduce the swelling so I wonder if I could get increase my carvedilol. I will ask at the next appointment. Thanks for sharing your good news
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Just checking back in...my CT angiogram was not really successful as they couldn't get my heart rate down far enough to get clear pictures (even with beta blockers, nitro and 1.5 mg of Ativan!). They did clear me for hip replacement however, so now I'm home recuperating from that. One thing that did show up on the CT was some scarring in my right lung which was suggestive of chronic MAI (Googled it - not pretty). As a result, I've got a January appointment with a pulmonologist who will probably want to schedule a bronchoscopy. Meanwhile I still need to address my 44% EF which has been put on the back burner since my surgery. How to prioritize when your body starts falling apart?!
Thanks everybody for being there...Julie
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Just wanted to share the news that my cardiomyopathy has gotten much better. I was at about 40% ejection and now I'm told it's about 50-55% which is normal. I was given a fairly low dose of the beta blocker, generic Coreg (carvedilol) about two years ago and it seems to have really helped my heart. I'm also trying to walk more often to improve my heart. Hope this gives all of you hope that things can improve.
Faith (in the future).
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Hi Faith, that's great news!! I got similar news at my last cardiology appointment - he said, and I quote, "your heart function is NORMAL". I almost hugged him. I'll be on Coreg for the rest of my life probably but that's ok with me.
Yay for us!!
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Jenwith4kids, yes, it feels wonderful to be told your HR function is normal and if Coreg keeps it that way, I'll gladly take it. I just wish they could figure out why I feel palpitations and why I had that scary episode where my HR was at about 45 for several hours with occasional jumps to 95-100. I see the actual cardiologist in two weeks so I hope she has some answers. Until now, I've been seeing the NP in that office. I guess if they thought it was serious they would have me see her sooner.
Faith (in the future).
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I have chemo-induced nonischemic cardiomyopathy and stage IV heart failure from it. My ejection fraction is 18. Also had a clot in my heart likely caused from Tamoxifen. I was ordered to stop it.
Contributing factor may also be genetic. My brother has cardiomyopathy. His is likely viral. He used to be a marathon runner—not anymore so he rides motorcycles instead. I'm happy to report he is stable on meds. His EF went all of the way up to 50.
Glad to see you all are improving on meds. I do Coreg, digoxin, Lasix, Lisonpril. Resting heart rate still 117 or so and my BP is too low toincrease dosage.
The meds have improved me to a2 or 3 heart failure stage. It fluctuates. Pretty sick of wearing a defibrillator and am making plans to get one implanted. It will not help my condition but is for death prevention. I still work full-time and I am glad for that.
I refused to try AIs. Seems they all can raise cholesterol or make you feel 90. I haven't done much research. I needed a break from it all.
Sorry I'm kind of having a pity party. Needed to vent to people who get it. 😀
Per my cardiologist, if you get diagnosed 7 months or so after chemo, it can be reversible. Mine was not but things still can improve. Get yourselves checked and demand an EKG if you are tired or feel short of breath with no other reason why.
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Good to see this thread is still active! I'm having an echo (3-D with contrast) in two days and will meet with the cardiologist that afternoon to discuss the results (I discovered my EF was at 44% last fall). He is talking beta blockers to me also - hate the thought of more pills to add to my daily Arimidex!
Will keep an eye on you guys & check in with my results - thanks for being here!
Julie
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Well, it's an invasive angiogram for me. Today's echocardiogram revealed my EF has dropped from 44% to 25% (I have to wonder how I've even been able to function?) The doctor said if he finds a blockage next Friday he should be able to repair it while he's in there, but in the meantime I was given my first Coreg tonight and am promised more drugs are forthcoming (ugh).
All positive thoughts will be welcomed - I'm venturing into new territory here...
Julie
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Hang in there Julie! It took a little while to get used to the Coreg... I was very tired at first, and then, all of a sudden I wasn't. Keep us posted!
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sugarplum - so sorry to hear this. Will keep you in thoughts and prayers. Please report back!
I live with a 29 EF and have been asymptomatic for 5 years with the meds.
Wishing you all my best!
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sugarplum, you are one of my inspirations.. I will do the same a Denise-G
Denise-G you are the one who mentioned breath hold for rads.. Would you believe I practiced simple breath hold even before I started rads? I went up to 45sec and aced rads of course.. Ty. you probably helped me w less damage from rads..
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Thanks so much for posting, you guys - it helps a lot! They sent out an e-mail today at my office saying this Friday is National Wear Red Day. What a coincidence that my angiogram is scheduled for that morning - maybe I should ask for a red hospital gown
Julie
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Angio done this morning - still a bit loopy from the versed! Had to go in through the groin as my wrist didn't have enough circulation. Was conscious through the whole procedure but luckily it only took minutes. Am achy now down below - have a little bandage which will come off after tomorrow night's shower. Dr didn't see any blockages so we are going to have to rely on just meds to try & build my EF up from 25%. Will see him every 3 weeks while he gradually ups my meds, and then another echo after 3 months to see if I will need to have a defibrillator placed (sure hope not!).
Keep posting your stories as they are an inspiration to me (this newbie who is not a newbie!)
Julie
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Julie, how are you doing
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