Herceptin Heart Attack
Comments
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Hi everyone,
Regarding taking ace inhibitors and beta blockers to protect the heart- my cardiologist said we will evaluate everything after the herceptin is done. But he also mentioned he takes beta blockers and that he would not stop them. He seemed very casual about it, like you mentioned Kay 1963. I do not like the idea of just taking them for no good reason. I am already taking a bunch of pills and vitamins and herceptin. It will be interesting to see what happens after herceptin.
Question for those who already had their herceptin permanently stopped- Do the cardiologists continue to monitor you after the herceptin is stopped? . How long do they continue to see if heart will change back to original status? It seems to me that it may take longer for some people for heart to return to normal but that should be assessed. But maybe I am just worrying too much??
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My cardiologist sees me every month since the Herceptin was stopped. I alternate between him and his nurse practitioner. The reason I go so often is after the Herceptin was stopped, he put me on Coreg which is a beta blocker. Every month he wants to double the dose if I can handle it. I started at 3.25mg 2x per day. I am now at 6.5mg 2x per day. I go again tomorrow expecting to go up to 13mg 2x per day. He said that he is hoping I can handle up to 25mg on that same schedule. His comments were that studies show that the more Coreg you can handle, the greater potential for recovering a portion of the function - some do and some don't. I am only 39 years old, so maybe that has something to do with it. My EVF dropped from 70 to 45 after 6 months of Herceptin.
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ILBoysMom, your situation is almost exactly mine, except I'm ten years older. (Wish we had that in common too,
. ) The cardiologist would like to increase Coreg for me, but my blood pressure is low. I am at the lowest dose, 3.25 twice per day, and she doesn't think I can tolerate more. My bp is usually in the 90's. But it hasn't decreased on the coreg. I guess if my heart function goes down further, she may decide to try a higher dose any way. The probNP level they have been checking for heart function has been creeping up, not sure if that means the EF has been going down or not. But it was still below the level they would withhold the herceptin again last time. Will get it checked again this week before herceptin on Thursday. We shall see.
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I must have a cardiologist not in the know. They started me on 6.25 mg, twice a day of the COREG but no discussion of increasing it but maybe because I started at a higher dose. Go figure.
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Arlene,
Well at least he didn't say..."Go home. There is nothing I can do for you."
lol
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My cardiologist has said nothing about increasing beta blockers, putting me on coreg. He said he thinks a lot of the tests may be just "noise." I still do not have the energy I used to walking up hills etc so I think the changes might be real, I just hope not permanent. Thank you for all the other posts cause I am now going to ask him about Coreg. The hard part of all this is not knowing what to ask about -that is why this discussion group is also valuable. We can really share and learn from each other. Thank you everyone.
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I couldn't functinon on Coreg. I fell asleep with my 4 kids in the house. I told my doctor I couldn't do that. I am on another beta blocker Metroprolol succinate instead. Lots easier on me. I tell you this so you know if you get put on one type of hear medicine and don't feel right, that there are other options.
good luck
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After reading your post, it suddenly hit me that my fatigue might be due to the beta blocker and ace inhibitor that have been added. I fall asleep way too early in the evening and sometimes feel like taking a nap during the day which I can not afford to do. How do people know if it is the heart drugs or the EF that has decreased that increase fatigue? . Has anyone felt better once they started taking ace inhibitors and beta blockers ie more engergy?? Also do people feel fatigued after getting the herceptin? Thanks
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I have been more tired and falling asleep earlier too. I know my BP is low and that may be part of it. And I definitely feel a difference in walking that I didn't before. So I am thinking it is the meds and not the EF. I'll see what the doc says about it next time I see her.
Herceptin #13 is in the books! Five more to go. I think I am am much more bothered by the tamoxifen than the heart meds though. I really want a break from it. I am going to see what she says about that too. -
My cardio increased my Coreg dose on Wed. to 13 mg at night, and staying with the 6.25 in the am. He wants me to hold on this dose for 2 weeks and then move into the 13 in the morning as well. He felt that this might be my max. At my checkup my bp was 117/78. Mine started so high, it has given me more room to grow with the Coreg. But, I have noticed that at least for the past week I am sleeping through the hot flashes for a change! Or since I am sleeping harder, I am not having them. Irregardless, I cannot imagine being on 25mg two times per day. I have my next echo this Thursday. I hope all these drugs are doing some good.
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I couldn't take an Ace I. It brought my blood pressure way too low.
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Just to vent a little- I am getting tired of taking all these meds. I am taking more than my mother who is 95 OMG. But hopefully they will keep the cancer away. I am wondering if the fatigue I feel is due to the arimidex I recently started, the ace inhibitor or/ and beta blocker. or the EF which has not returned to what I started with. Has anyone stopped the herceptin, then stopped the heart meds and there EF returned to normal?? I only have about 2 more herceptins to go or 6 depending on what my onc says. I heard they are currently doing a study on herceptin to see if 2 years is better than one. Also there was a study on just taking it for 3 months. I attended a breast cancer conferenced this weekend and one of the oncologists said they just really don't know how long herceptin should be taken. Maybe 10 years from now they will know. The onc said that when they really don't know how long the treatment should be, they ask the patient to decide. My intuition on this says if your heart is getting weakened and your quality of life is getting significantly impacted from the herceptin, then better to stop herceptin then get more heart damage. Would love to hear other people's opinions on this.
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SW,
I stopped Herceptin and didn't take any heart meds. My EF is/was 49 ish. I get another MUGA this month to see if its come back up....will update when I do.
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Good luck with MUGA and sending positive thoughts. I am getting another MUGA after I get the herceptin tomorrow. Then surgery scheduled for April 2 for reconstruction of breast. Will keep you posted on what happens with the MUGA- I wonder if there is any data on how many people have their EF return to normal after stopping herceptin??
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Sw,
There is data on that. I actually have it somewhere, but the numbers (if I remember correctly) were pretty high...I'm thinking over 75%....Herceptin heart damage is reversible in most cases....all the literature on it says this. (Not sure I believe it...but that's what it says)
My Card. told me it is reversible, but it may take some women longer than others to get the EF back. That neatly covered all his bases
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I really need this thread. After the first herceptin infusion, I developed a jumpy heart. I felt chest pressure, and shortness of breath. My oncologist didn't seem too worried. One week before the second infusion the heart pressure disappear, but that week before the second infusion I had a fosamax reaction.
After the second infusion, my heart became so erratic that I could feel it pretty much all the time. I complained to my oncologist so she sent me to a cardiologist. The third week after the second herceptin infusion my heart seem to calm down so I feared the echo wouldn't show up any problems I compalined about or what I had been experiencing or feeling.
BUT...the cardio technician doing the echo said my heart from beginning to end was erratic and was surprised I didn't feel it. The next day she calls leaving me a message that my heart was slightly enlarged and the heart palpitations are normals. I never had palpitations before the two infusions, and I have a whole year to go. I haven't had the holter monitor evaluated or test results back yet.
To say the least, I'm a little frustrated. I' am going to change cardiologist to someone closer to where I live, and hospital specializing in cardio like Legacy.
If I'm going to take herceptin and with a family high risk with heart failure, I' want to be monitored by a cardio dr. Apparently a lot of bc women taking herceptin don't have heart problems. I need a little perspective to those who have wrestled with heart issues, and what to ask for. As of now, I'm not sure what ef numbers are or what to look out for.
Your stories help. Thanks.
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Had herceptin number 14 on Thursday. My troponin(which apparently measures heart damage was still normal, but my probNP was slightly out of normal range. This measures heart failure apparently. Under 125 is normal, mine was 128. MO said with heart failure they commonly see levels of 300 or higher. Cardiologist moved the echo up, and said not much change, EF was 45. I think they said 47 before. She upped the ace inhibitor though and so far no problems with blood pressure dropping much. I'm still on a pretty low dose. She said they like to give you as high a dose as you can tolerate to give the most protection to your heart. Only four more to get through.
Evebarry, I am not sure how much help I can be to you. I never had palpitations. I did think I was having them at one point after I was told about the cardiomyopathy, but the doc told me I was probably just noticing things that had always happened before. I think she was right. And possibly some anxiety too. I know 50 is considered low normal for an EF fraction. I think below 45 they get very concerned. Above 50 is normal and I believe the higher, the better. Mine was 65 before treatment and is 45 now. I. Still have four treatments to go which they are planning to do. But i get the troponin and probNP checked before each infusion to make sure there hasn't been any changes. If there's anything else I can tell you, let me know. Hang in there. -
I have had the same things happen to me this last month. After about my sixth TH tx...my heart started racing and when it did slow down I could still feel that it wasn't beating right. My onc first cut back on my premeds to see of that would help. Well it didn't..because that night I ended up in the ER because my heart rate was 220! So with only two more Taxol tx to go he decided to stop it and hold the Herceptin til I had an echo done. Well my echo showed that my heart function has decreased since January ( when I finished AC). So now we are stopping the Herceptin and doing another echo April 19th.
He still doesn't think I need to see a cardiologist...really? I think I should. I have nine more months of Herceptin! And....my family is plagued with heart problems...my father died at 45 of a heart attack. And he was in good health..no smoking..etc. I am only 37 so this is a little scary.
It's my understanding that we have to have the Herceptin right??? But what happens if we can't? -
kdking - I wonder if tykerb is available for treatment if herceptin is not possible. It is another anti-HER2 medicaiton. Sorry to hear about your situation - 220, that must have been awful!!
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I have heard of tykerb...but don't know too much about it. I am hoping my next echo shows improvement. The 220 pulse was very scary...Especially since I was home w my nine yr old. Don't want that to happen again.
Has anybody here been on the Tykerb? -
KDKing: I had the heart racing and palps after first chemo and Herceptin. Went to ER, got it settled down but back again the next day. Onco sent me to a cardiologist who started me on heart/blood pressure medications which settled it all down and he cleared me for Herceptin. Having said that, after Herceptin #10, Herceptin was stopped because of drop in EF.
I've never heard about Tykerb either.
Good luck. Arlene
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Thanks for the info!
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My EF is now at 55. Wonder if 3-1/2 months off Herceptin keeps me from starting again. My onco says no more.
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You have been off for that long?? I just got my echo paper today. My EF is 50. I am starting rads on Monday!
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Arlene,
My Onc said anything longer than 3 months off..and it's over. At least this go round. Even if EF comes back up. I go for a MUGA Thurs...I'm hoping my numbers are better....
KDKing, I also had the rapid heart rate. My resting heart rate is about 59...so I could really tell when my heart took off. Scary stuff.
I stopped Herceptin and couldn't tolerate any of the heart meds because they drop blood pressure and mine is already at the very low end of normal...so even a tiny dose made me feel faint, and when I tried it at bedtime, I woke gasping for air....I think my BP dropped way too far while sleeping... so no meds for me. Just hoping it bounces back on its own.
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Hi everyone
This thread is very helpful to me as I have similar issues. I am due to have Herceptin no 17 on Fri 23 March. So 2 tx left. Had the TCH regime. Back in Nov 11' I had 2 conflicting heart scans. A muga read 36 and so I was sent for an emergencey echo which read 65!!!
My history through tx has been this: Baseline muga before I began chemo- 55. After 3 months-47 so was put on 2.5mg Ramipril. Still on this now. I have had periodic palps and shortness of breath. If I stand up too quickly, my heart pounds. There is something not right but every ECG ive had has been normal.
Last week I went to ER with another such episode-again checked out ok. Spoke to onco who will do an ECG on Fri in advance of my next tx (number 17).
I just want answers and I want to come off blood pressure/heart meds.I am only 41. Is it too much to hope that I can get back to normal?
Liz
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Liz,
I didn't get to finish my last three Herception. I'm perfectly content with the amount I received. I've read a lot of information and a year of Herceptin is what we get because that was the length of the original trials. To get the positive results of those trials, they have to duplicate the time.
But, right now there are trials going on that compare 6 months of Herceptin vs 12, as well as 12 months compared to 24. So there is a whole group of women out there RIGHT NOW (in the trial) who will ONLY get 6 months of Herceptin
My gut tells me 6 months will be just as good as 12. So it will be interesting to see where the science falls
I'm 43, and YES YES YES, you can get back to normal...It seems somewhat ironic to me that the drug that was supposed to be the most benign, for me, ended up causing me the most issues. If I didn't have cardiotoxicity from Herceptin, I'd be GOLDEN! At least for awhile
Hang in there!
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Hi Ladies: My onco also said 3 months was pretty much the magic number so I have to come to realize that my 6 months is enough.
Now, this is a silly question but I seem to catch colds so easily now - rarely ever got one in the past. Is there any possibility that this hard coughing could affect the port?
Thanks ladies, Arlene
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Arlene,
I don't think coughing can hurt the port. But of course you should check with your Onc.
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