Chemo-induced cardiomyopathy, anyone out there
I am looking for other survivors that have this disease now.
Adriamycin
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I had a heart attack during AC chemo but thought it was side effects of AC, so did not know until later.
Also had major valve damage from Herceptin. I take heart meds and am stable after 4 years. See my
cardiologist next week. Also had increased heart rate - used to be 120 now down to 88 with meds.
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I am in, I have cardiomyopathy caused by adriamycin plus radiation did not help either
My EJ was 50 on the echo and 43 on cardiac mRI. I also had high heart rate my normal was 85-90 I am on heart meds to slow the pulse bisoprolol and corvesyl, and I hope very hard that it will not progress more.... have not had any test done since on meds, - will be a year now.Michele how soon yours progressed from 50 to 30-25? (I read in other thread) does defiblirator bothers you?
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Kimag,
Sorry I missed your post. It took about a year to get to 25% and I could tell something was wrong.
The defib does not bother me at all and I can barely see it. It's nice knowing its there.
Michele
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Denise,
Do you take Coreg and enalapril? I take both and lasix.
Michele
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Michele thanks for responding. can you remind me how soon after chemo you noticed issues and had cardiomyopathy diagnosed? You mentioned you could tell EF is dropping what was your symptoms? I have cardio visits every 6 months now the upcoming one in May, I have not had any echo done since last June and I am anxious to know is EF dropping or stable? I am tired and feel sometimes again this 'flip' of my heart in the throat but also I started a full time job and have 3 busy boys so that may be the cause of being so tired.
Forgot to add I also have left bundle block that is not resolving after meds.
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I was done with rads in July 2013 and about 2 months later started having pvc's. Cardio said it can be reveresed so I took Coreg for two years. Then last fall my heart would start racing and it felt like it was pounding in my throat. I would walk across the room and get shortness of breath and omg I had no energy. Memory has declined due to lack of oxygen. Doing cardiac rehab now hoping to strengthen my heart and eating an almost salt free diet. Also I was retaining a lot of water in my stomache.
Have you worn a monitor for a couple weeks? Or an echo needs to be done. Tell your cardio you need this
Heart failure from chemo and rads can show up 20 years after you done. So it's important to know the symptoms.Michele
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Now this has me worried. I did AC and up next is rads, left breast, of course where the heart is. On my 4/1/16 CT scan report it says
CARDIAC:There some minimal pericardial effusion or pericardial
thickening.MO didn't say anything about this part as the purpose was to check on a lung nodule found back in Oct. And there was no mention of anything cardiac back in Oct so now my mind is on Adriamycin. How can you tell is you being pooped is from chemo/rads (Chemo ended 3/28 and rads starts 5/2) or the heart? She's having me rescanned in Oct for the nodule and I bring it up then? I guess what's to be is to be especially since I'm very overweight but this makes me nervous.
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Michele2013 - I am on 25 mg of Metoprolol, 10 mg of Lisinopril, and a small dosage of a water pill.
I had my 3.5 year checkup with my cardiologist this week - good news - my heart is still very stable.
He decided against doing ECHO this time as he doubts it changed, but I am still asymptomatic. My pulse
now is consistently 85 to 91 - down from 112 to 120 when I started all of this.
He will repeat ECHO next year. All in all, got a great report. Thinking back to the beginning of it all,
I am SOOOO MUCH better!!
Cardiac rehab is a great thing...it will help you. I have a BC friend who had heart issues who is on
Coreg, but she was only able to stay on it for a short time.
Sending my best! Denise
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Artista,
You might speak with your dr about the pericardial thickening, this means water around your heart. You would be shocked at how much weight you can retain from water.
Radiation and heart failure will both make fatigued. I understand your concern.
You are your best advocate.
Michele
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Michelle - yes unfortunately effects of adriamycin can show up much later - that is me
we discovered issues last yest, 19 years after my chemo adventure... I am under a care of cardio who does cardiotoxicity monitoring and research. I had cardiac MRI and echo with contrast but no monitor to wear.how did you know you retain water around stomach? I wondered about it recently as my abdominal seems to stick out quite a bit, I am also gaining weight but not that rapidly, when i asked about it during last visit i was told that since my feet are not swollen in their opinion there is nothing to worry... and that a weight gain would be rapid by few kg not like mine.
I think cardio rehab is absolutely great! I have benefited so much if only I could keep this after and continue with the exercises they choose for me... work, kids, home and by the evening i am half dead...
Artista I agree with MIchelle - check with the doctor re echo results, and if needed find cardiologist opinion - but it should be a cardiologist who specialize in cardiotoxicity - otherwise he may not recognize the signs.
Denise congratulation on your good news from cardio check up!
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Thanks Michelle and kimag. It was on my CT scan that I did April 1 and MO didn't say anything, just about the lung nodule she is monitoring. I get another chest CT scan in Oct so any reason not to wait until then to see if that still shows up?
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Kimag,
I could tell I was retaining in my stomach because my swelling was high up on my stomach. Putting a lot of pressure on my lungs. If it were me, I would ask for lasix. It's doesnt only happen in your feet or legs.
Michele
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I also have chemo induced cardiomyopathy from Adriamyacin 25 years ago. I was told at the end of my treatment then that my EF was about 45% and I have suffered since then with shortness of breath and high blood pressure. About two years ago I complained again to my GP about how hard my heart races when I climb steps. She sent me to a cardiologist and he put me on Coreg in addition to the Benicar HCT I already take for HBP. My HR averages about 65 when just sitting and will go to 95-100 climbing steps.
Just this January I was diagnosed with MBC to my lung and am now on Ibrance and letrazole and having lots of shortness of breath. It may be a SE of the letrozole or my heart or allergy induced asthma. I see the cardi tomorrow and my MO next week. I hope someone has some answers for me as I'm getting very discouraged about all of it. The meds are working to reduce the cancer so far but this shortness of breath is really scary.
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Artista,
Are you symptomatic now? You can also discuss this with your rad onc. I would think if there was any potential for heart problems, they would get it addressed.
Best of luck
Michele
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I'm so sorry Faith, please keep us posted. The SOB is what really scared me and a true sign there's something wrong. Maybe an echo or MRI can be ordered for you.
Michele
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Michele,
Thanks for starting this topic. 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. 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 typical 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.
Faith, I know the fatigue and breathless sucks, your in my thoughts and I hope your Cardio and MO have treatments to help with this and the MBC. Please keep us up to date.
Denise - OMG - my dream is to feel so much better. So happy for you - thanks for sharing.
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Thanks Michelle and Robin for your concern and replies. Yesterday was kinda a bad day, I had major SOB and dizziness. I debated going to ER but had a scheduled appt. with my cardi Dr. And since they are both in the same place, I went to his office first thinking they can always send me there to the ER. Well he thought I was having major anxiety and things did calm down a bit after being there awhile. He wants my onc to give me some drugs for the anxiety, these might work better than an occasional zanax. I really hate to start those but I have seen others say they are taking them. I got through chemo 25 years ago with not much problem, guess I'm just older and more fragile this time around. MBC is very scary. I have read that the letrazole can cause depression, anxiety and SOB along with lots of other things but I guess if it kills the cancer, it's probably worth it. Anyone here on anxiety meds?
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I'm on Celexa which is for depression and anxiety. I have taken Ativan on and off over the years but this makes you very loopy and sleepy. With such meds it's a hit or miss. What works for some may not work for you. Took me awhile to find one that works for me pretty well. GL
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Dear Faith,
It seems like it was a good idea to see the doctor and I am so sorry that you have so much to deal with. It is all anxiety producing and I feel the older and more things we have to deal with the harder it gets, you have every reason to be be depressed and anxious. I've needed antidepressants before and it helped. I hate talking all the meds, too but I'll continue and do more if that's what I need to keep diseases away and have a QOL.
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Dear Faith your post gave me so much hope, you said you were dx with 45% EF 25 years ago and after so many years the things changed, I know it is still not good that the best would be if it stays same but for me this sounds like hope, has your cardiologist tested your current EF before ordering Coreg? I agree 19 years ago I went through chemo just living my life (middle of high school grad exams and university exams) I thought I am unsinkable... this time with issues with thyroid, BC and now heart (not mentioning lungs scaring) I am scared so much and my anxiety has grown out of control at some point.. However I noticed 2 things first I may have had anxiety induced by actual and real issues with heart rate that I was not aware of than, suddenly HR 160 freaked me out and the docs at ER thought I had AF.... dizzines, feeling like faint etc. I stopped driving the car with my kids as i was scared i will pass out behind the wheel. Once I was diagnosed and given meds for heart rate etc. I have not experience major panic attack or anxiety... I am still scared often and worry about future but this is not that strong.
Second thing if I feel out of source, weak or like fainting and feel my HR race i take half of tabled of 5mg Ativan just a little bit more psychologically and try to occupy myself for 10 min to see if it would not get better... I noticed as you did that when I was racing to doctors or er because of the way I felt, i was often getting better the minute i was admitted to waiting room... so that is why instead spending hours in er waiting rooms (and believe me my anxiety was at the point that I could practically live there) i try my friend ativan, if after that still in doubt i would go
I am so sorry to hear your recent ordeal, please get help for the anxiety at least for the beginning when everything is still new. It is easier to fight and make better decisions when our mind is calmer..
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Michelle, I had my GP started me on water pill this weekend. I have to watch my weight and see if that makes any difference or how much of the difference. I cannot wait till 6 month check up with my cardio... only few more weeks.
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Artista,
I would talk to your MO and try to get cardio assessment even as a baseline and then check few month later. It depends of the dose of adriamycin you got (per body mass) and radiation volume. when in my treatment years ago I had my heart closely monitor during radiation as they could not shield it during radio.. all was fine then
I believe we are our best advocates and knowing that adriamycin can cause issues and radiation can cause issues and if both combine even more - it is best to be safe then sorry and inquire with doctor for follow up on cardio side, even if all'll be fine - for piece of mind that who if not we - survivors, fighters need the most.
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kimag, thanks for your reply. Yes, my cardiologist did check my EF before giving me the coreg to start with, although he says my cardiomyopathy might not be due to the chemo. Then what is it from? Anyway after seeing him on Friday, he did increase the dose to 12.5 mg twice a day. My heart rate and blood pressure are staying in range but the anxiety is still there. I've been taking a zanax mid morning which seems to be when I start getting anxious. That makes me think it's a SE of either the Ibrance or letrozole I'm on. I see my MO tomorrow to talk about all this plus the possibility of reducing the dosage of the Ibrance since I've had so much fatigue with it. I've had a good response to the meds after only 3 cycles but the tumor while reduced is not gone and I want it gone. Thinking about this so much has also caused my anxiety I think. After reading in the Ibrance thread about so many docs not wanting to reduce the dosage except for low counts, I wonder why mine is ok with it since my counts have been ok. Sometimes it's all just too much to think about and I'm tired of always having to make decisions.
I'm sorry you're dealing with all this too after so many years. I've heard that a lot of young people treated for lymphoma end up with another cancer later in life. It just doesn't seem fair when you beat cancer once to have to deal with it again. You are so much younger than I am so forgive me for venting, I've had a good life for the last 75 years and shouldn't be complaining so much, I guess I'm just still coming to gripes with all this after so many years of not thinking much about it. I think if you stay active and exercise your EF will also stay stable. I've not always been very faithful to exercise but always came back to it after taking a break for weeks or months and keeping my weight in check. We just have to keep putting one foot in front of the other.
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Robinin SJ - it is so darn scary when this happens! I was absolutely terrified when I was at your stage. Terrified of the heart meds, terrified of heart tests, and was so overwhelmed as it was 1 month after chemo ended and rads were going on. BUT, I am now 4 years out.
Just got back from a trip to Las Vegas and walked about 5 miles a day. Got a little out of breath every once in awhile, and had to slow down, but overall, feel good. You get used to the meds and the fears subside. Then as the cardiologist appointments space out, you feel more normal.
Wishing you well, Robin! You will make it through this too!
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Denise, thanks for the note, I started a bata blocker and ACE inhibitor this week, trying to get used to these new meds. Some days are better, I would say in general okay and the anxiety is much better. My cardiologist said I could have 1 drink a week, so last night a had 1/2 of glass of wine and felt so sick--like I drank all night. I had to leave the dinner table, luckly it only lasted 30 minutes. Don't think I'll be drinking for a while. Not sure if it is the beta blocker which I just started or that and the wine.
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Robin - it will get better as your body adjusts to the meds. It just takes some time! I don't drink much alcohol,
but just went on vacation to Las Vegas and had a few milder drinks. Wine does seem to bother me more, so
I stay away from it now. Makes my heart race it seems! j Had a few Kahlua and Creams. I figure my body
needs the Calcium - lol.
I promise it will get better!
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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 May). 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
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Dear PinkiDC,
I am sorry I didn't see you post last month and hope your starting to feel better and in more control. It is very scary to have cancer and then find out the treatment resulted in a new scare - cardiomyopathy.
My ejection fraction was 30/35 when diagnosed. My baseline prior to chemo was 65.
I now take a betablocker and ACE Inhibitor. I adjusted well to the ACE inhibitor but when we introduced the betablocker I had increased fatigue and was lightheaded/dizzy for several weeks while my body adjusted. The cardiologist slowly increased the meds with increased side effects each time. After six weeks had a stress echo done. My ejection fraction rate improved to 45-50, very good and significant :-) !!! We cut back the betablocker dose. During the stress test my heart did go into a PVC Premature ventricular contractions so they had to stop the test but did enough to know my heart is doing better and responding to the medications. The shortness of breath is better but still noticeable and I try and walk a few miles everyday to increase my strength.
I don't think I'll see a complete reversal - no cure but the drugs help manage the symptoms. I was happy to stop the progression and it took about 6 weeks. During that time I had to take a medical leave since the cardiomyopathy and drugs made me so exhausted that I could get out of bed some days and/or I was dizzy and afraid to drive. I am now working part-time and I'll be retiring fully in January. I can't keep up with the work and often have bad days. But I do have good days, it's hard to predict. I have other health issues so my fatigue is from a combo of things but the 2 big contributors from MPV is the hormone blocker and Cardiomyopathy.
I hope your body is adjusting to the medication and your starting to feel better, it's a long process. Feel free to reach out with any other questions.
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Just had an echocardiogram and it showed my heart is stable. The EF is 40/45 about the same as last year. I was hoping to see some improvement but I guess I should be happy with stable considering all I'm going through having been diagnosed with mets to the lung in January, 25 yrs after my first bout with breast cancer in 1991. I try to exercise a bit but sometimes the drugs I'm on cause a lot of fatigue. I'm on a beta blocker but it causes some ankle swelling. There are just no free rides with this disease.
Faith ( in the future
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I'm so glad that Faith-840 bumped this post - I had searched the boards but hadn't found anyone else with cardiomyopathy. I was diagnosed about a month ago. My last chemo was in August, 2014. My EF at last echo was 35-27%. Currently on Coreg; will be adding an ace inhibitor shortly, actually waiting for my doc to call today.
I hate that this happened - I was just putting this whole damn mess behind me and wham. Right? I know you all know what I mean. It sucks, but I'm trying real hard to not let it get me down.
I have a cardiac MRI scheduled to check for scarring and a CT angiogram to rule out any blockage (which she highly doubts). I've been working out regularly since January; doc said that's probably why I haven't had any symptoms. Though I had been attributing some shortness of breath on the steep staircase at work to just being a busy working mom. And my heart rate has been really high since mid-summer.
I hope we can be a little more active here - - please check in once in a while!!
Jen -
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