Coreg and heart damage reversal?

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NatureGrrl
NatureGrrl Member Posts: 1,367
edited June 2014 in HER2+ (Positive) Breast Cancer

I had this posted elsewhere but someone suggested I try posting here, so...

Anyone out there on coreg for heart damage from chemo/herceptin?

When my Muga dropped to 46 my onco. put herceptin on hold. 3 weeks and another muga later, and my Muga dropped to 45.3, my onco. took me off herceptin forever, and sent me to a cardiologist.

Cardiologist put me on coreg and baby aspirin and said it would be for life. I questioned him because my understanding is that the heart damage from A/C-herceptin often reverses itself.

He also wants me to have an angiogram just to make sure my heart damage isn't from other causes.  I'm not thrilled about another somewhat invasive procedure as I'm just a few weeks out from radation and still tired, but I'll give it a shot probably in March.  I figure I might as well make sure I don't have clogged arteries, etc.

So far (12 days or so), no noticeable SE's from coreg. I feel better (more rested) (hurrah!) but my ability to walk up a couple of flights of steps is still compromised (slow and some minor shortness of breath) -- which I guess is to be expected. I know heart muscle doesn't mend fast.

Anyone else go through this and later get off of it? What tests did they give to monitor your heart, and how often did they give the tests?

I had herceptin for 6 months... this is enough according to at least some of the research, right?

If you've been on coreg a long time, how are you doing?

Thanks for any insights!

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  • Psalm121
    Psalm121 Member Posts: 238
    edited February 2010

    Hi NatureGrrl:

    I've been on Coreg for several years already due to having Mitral Valve Prolapse.  Symptoms were chest pain, shortness of breath and heart palpitations.  Just finished Taxotere/Cytoxan on Jan 7th 2010...Onc told me these would not affect my heart.  Coreg has been a great medicine for me, it has definitely helped with the above symptoms.  I don't have any information on Coreg after chemo for managing damage/side effects to the heart, but that's very interesting to me.  I have been having increased pulse rate and lower blood pressure since chemo....I had an echocardiogram on Friday and scheduled to see Cardiologist on March 3rd...so, we'll see.

    Wish you all the best as you recover and heal!!

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  • Diana63
    Diana63 Member Posts: 773
    edited February 2010

    I am on Coreg, aspirin and a few other heart meds, my heart ef was at 12% after chemo. Its is now up to 30% I think but it has been almost a year since I was dx with CHF. My cardiologist says I will be on heart meds the rest of my life but I think my heart will recover in time. You can ask your cardiologist about CoQ10 it helps to rebuild the heart muscles. They have two different kind, one is manufactured and the other is natural. I had 4 A/C and 12 Taxols during my treatments, they did a Muga scan before treatment began so I know my heart was OK before chemo. I hope this helps, just take it easy on yourself it takes time to get all of the chemo out of your system.

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  • Psalm121
    Psalm121 Member Posts: 238
    edited February 2010

    Hi Diana,

    Just curious...what is a MUGA scan?  I've seen it mentioned on here before...

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  • Diana63
    Diana63 Member Posts: 773
    edited February 2010

    Basically a MUGA scan is to tell if you have any heart damage, they take some of your blood and mix it with a radioactive substance. Then they put you on a table and scan your heart and watch the blood they put back in move through your heart. When they did mine my heart was at 57% which is in the normal range. I am so glad I had one because the doctors all said chemo couldn't do what it did to me. My MUGA scan proved them wrong and showed that chemo did cause heart damage.

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  • Psalm121
    Psalm121 Member Posts: 238
    edited February 2010

    Wow Diana!   That's some Scan!  I think they just tell us stuff like that until they have statistics to prove them different.  Oh, if doctors would only listen better to their patients!

    I'd been blaming chemo for my heart rate and Onc reminded me my Tx was not damaging.  So now, when I see my Cardiologist I am going to be more forceful in my complaints!  I lie in bed at night and my heart rate is usually around 92, give or take a few. 

    How are you feeling now?

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  • Diana63
    Diana63 Member Posts: 773
    edited February 2010

    During my treatment my hr stayed at 160 and they said it was nothing to worry about. That it was just my nerves and anxiety attacks or something. I was hospitalized in 08 for chf and every doctor said chemo cant cause heart damage, they wanted to do all kinds of tests for previous heart damage. Stay on top of your heart and push your cardiologist to check you out better. My heart rate is just now down in the 80s it was staying 99-104, my bp stays low because they have me on bp meds. I am feeling better everyday but I could kick myself for letting it go as long as I did, if I had pushed maybe my heart would have recovered faster. I wish you all luck and don't let the doctors bully you, they don't know everything. Trust your body and what its telling you. 

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  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited February 2010

    Thanks for the replies. I might have mentioned my heart started at 52% so it was in the normal range to start but just barely.  It didn't take much of a drop to put me at a more dangerous level but it was several months before my Muga scores dropped that low.

    My heart rate ran 95-105 all through chemo and is just now beginning to drop to 90 and sometimes a little below.  I also developed high blood pressure -- but honestly I don't know when it started -- it was always very good (105/70) but I hadn't had it taken for a few years (3?) until I found out I had cancer -- so I don't really know when it went up, if it was the anxiety and treatment or if I developed high blood pressure before then. Both my parents had high blood pressure so anything is possible.  I'm on blood pressure med and that's good now but I'd still like to see my heart rate down more.

    The Muga measures how much blood your left ventricle pumps out of the heart -- Diana described it well -- so my score, for example, says that my left ventricle is pumping out 45% of the blood in it.  That's not really good for your overall health, for enough blood/oxygen/etc. getting to all the cells in your body, etc.  (Actually, I think my last score was 43% but I need to find my notes to check.  Can't remember for sure.  Durn chemo brain!) :)

    I agree, listen to your body and your "gut".   I'm going to have to push my cardiologist a bit, I can tell -- I want my heart tested from time to time to see how it's doing -- I don't want to just accept that I need meds for the rest of my life.  If I do, fine... but I'm not willing to just roll over and accept that without monitoring.

    Thanks again, everyone.

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Diana -- my ONC told me that Adriamyacin and Herceptin both CAN negatively affect your heart/cause CHF... in a very small percentage (I don't remember the number) of patients.  That is why I had a MUGA before I began chemo and every three months since (I am done with main chemo but still on Herceptin til next September).  Since your doctors did MUGA scan before you began, I think they knew it could cause this (or why else do the scan)?  Either they were not clear or you misunderstood the risks (or both or worse, I suppose, they just didn't warn you).  That said, I knew there was a small risk but what choice does one have?  I hope the drugs reverse your situation.

    I was told there was a chance of CHF not only WHILE on chemo but up to 8 years following Herceptin.

    Lilah

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  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited February 2010

    Thanks, Lilah, I missed what Diana said her docs. said... yes, the heart damage from Adriamycin and Herceptin is common and well-known even if the percentages aren't large (it seems to range 5-30%; I'm guessing it's more common than 5% given the number of women I see here who have heart damage), and that's why we get the regular Mugas. And yes, it's potentially long term.  Lovely.

    Diana, sorry your docs steered you wrong, but I have to echo what Lilah said, why were they giving you Mugas if they didn't think heart damage could be caused by chemo? They weren't making sense.

    Now that I'm off Herceptin I still want some sort of test to document my heart's progress (or lack of) but I think I'm going to have to push to get them.  

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  • Diana63
    Diana63 Member Posts: 773
    edited February 2010

    During my dx I had many twists and turns, I started out with one set of doctors and kept getting passed around. I knew of the risks involved during treatment but because the doctors didn't seem concerned I didn't get worried about it. To tell you the truth they had me running scarred, I was so afraid of the cancer moving I just rushed through treatment. During radiation I could barely walk but the doctor acted like I was being a baby and I would feel better soon. I finished rads in Aug 08 and was hospitalized by Nov 08 for CHF. Now I know what I should have done but at the time I was to sick to fight them. Its just now that I am able be more active and I was dx in Oct 07,the last 2 years have been a total blurr to me. I had to argue with my cardiologist just a few months ago, she wanted to put in a defibrillator. I said my body cant take another surgery, she got mad and said you could drop dead I said so can you.

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  • simba
    simba Member Posts: 46
    edited February 2010

    Hi  all, I had 4 adriamycin/cytoxin and 4 taxol in 2005. My heart rate went from a norm of 60-70 to about100-110 during this time, and then went back to normal the next year. When the cancer returned in 2008 (mostly lungs) I had carboplatin, Taxol, and Herceptin for 6 treatments and then a year of Herceptin. I was supposed to stay on the Herceptin, but had to go off of it about 2 months ago because my LVEF started going down. Muga scans are more accurate than echocardiograms, but they also involve radiation. So my onc did a muga when I started chemo and then echos every 3 months. My LFEV by echo started at 60-65% and then went down to 40-45%. My onc felt that maybe the person doing the echo was not accurate because there is a lot left to operator accuracy, so she repeated the echo. It came back at 50%. What made me angry is that they didn't even look at the echo that had dropped for a month and a half until I TOLD THEM ABOUT IT! That means I had 2 "extra" Herceptin treatments before they even realized the echo had gone down. I get so angry at having to be "your own doctor" and check all your own results in case they don't. I'm an RN so I suppose I'm a little more conscious of this stuff than most, but what if I didn't have that extra knowledge? Then you would just have to accept their screw ups. I know we are all just human, but it seems they put an awful lot off on us and I'm getting tired of it (rant, rant, rant). Anyway, I'm taking CoQ10 200mg per day and hoping it is true that your heart function will come back up. Now I'm waiting to see if I can get into either a TDM-1 study or a Neratinib study. Thanks for posting. Love and God's richest blessings to all.

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  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited February 2010

    Diana, it's hard enough that we have to go through everything we have to go through -- let alone having to be our own advocates -- let alone having to deal with idiot drs!  I've been very lucky and am grateful for all the health care people I've worked with (except one, a radiologist who personified the I-am-dr-I-am-god attitude).  Good for you for standing up for yourself.  Good luck with future interactions!  Simba, best to you too... I've had past experiences serving as advocates for other people with cancer so I knew I'd have to stay on top of things myself and like you have had to point out some things to the drs but again, the staff I've worked with has been great, and overall I'm very lucky on that score. 

    A big hug to everyone.

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  • DebbieB
    DebbieB Member Posts: 161
    edited February 2010

    Hi NatureGrrl,

    I went thru 4 rounds of AC in 2001 and ended up with heart damage in 2007 six years later.  AC can do a number on your heart and my understanding is damage from AC is typically not reversible while damage from herceptin can be.

    I ended up in the hospital with Congestive Heart Failure/severe cardiomypathy in May 2007.  My LEF was 18%. Mine came on really quickly and I had problems getting dx'd because I looked so healthy.  I am now on Coreg CR 80 mg (worked up to that dose) along with 4 other drugs that I will be on the rest of my life.   It took right at 2 years to get my LEF back up to normal.  I see a cardiologist twice a year.  I've asked her whether I am cured and she told me we will NEVER know because they can't risk taking me off the drugs to find out.

    Going thru the heart failure was worse than the bc.  I was 51 years old and felt about 90.  It was so unexpected.  I didn't smoke, wasn't overweight, didn't have high blood pressure, cholesterol and tryglycerides were  perfect.  When they did the heart cath, I didn't have any blockages of any kind but they said they could see where the AC chemo damaged my heart.  I'm just grated my LEF went up because had it not, they were talking heart transplant and pacemaker/defibulator!

    You definitely need to be under the care of a cardiologist.  Heart damage from chemo is serious. From everything I have read, people under the care of a cardiologist fair much better than those who are only seeing an internist or family doctor.

    Good luck!

    Debbie

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  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited February 2010

    Debbie, thanks for your input and for pointing out the potential seriousness of all this. I am seeing a cardiologist but so far have only seen him once; I have a whole host of questions for him now that I've had time to digest all the new information and need to see him again to satisfy those questions.

    How was your heart cath?  They make it sound like a cake walk (although an all-day cake walk) but when I mention it to non-health care professionals, everyone makes faces and acts like it's horrible.  Also, what kind of exercise can you do now?  I don't plan on running marathons but I'd like to be able to go on day hikes in the mountains, etc., as I get better... I'm hoping that will still be on my list of things I can do!

    Thanks...

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  • rosemary-b
    rosemary-b Member Posts: 2,006
    edited February 2010

    Debbie's story sounds a lot like mine. I had 2 more treatments left in my year of Herceptin, when I went back for what I thought would be a second round of antibiotics for a respritory infection and got sent for a bunch of tests instead. My LVEF had gone down from 50 to 15-20 in five weeks.

    I was sicker than I had ever been in my life. I was in the hospital for 5 days and then had a visiting nurse for 3 weeks. I never had had high blood pressure, high cholesterol, smoked or drank to excess. All I did was have cancer treatments.

    Unlike Debbie I can not take Coreg. After 3 asthma attacks in a year and constant shortness of breathe that came form the asthma, not the heart failure,I was taken off of it. But I take 3 other heart meds. I am always tired and will be on heart meds forever. I ended up with a defibralator because the improvement was so slow. I really don't like the thing but my opinion will change if it saves my life.

    My LVEF has slowly risen. It was 35 in June and I have another MUGA scan in March. This has been a really long process but I feel like I am improving.

    See a cardiologist. Take care of yourself. Things do get better but it can take a long time.

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  • blondie45
    blondie45 Member Posts: 580
    edited February 2010

    NatureGrrl - I private messaged you, not sure if you got it. Anyhow, the heart cath wasn't bad. I asked for the max amount of sedation they could give me and really only remember going into the room and then the doctor telling me at the end they were done and there were no blockages, etc. I also took some of my lorazepam before I went. How many herceptins did you get?

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  • DebbieB
    DebbieB Member Posts: 161
    edited February 2010

    NatureGrrl,

    Being dx'd with CHF/cardiomyopathy was the sickest I have ever been in my life. Came on quickly and I went down hill fast in a 6 week period.  When the cardiologist told me I had to have a heart cath, I was absolutely terrified.  But honestly, it wasn't bad.  They do drug you up heavily. 

    It's been 2.5 years and for the most part I feel normal.  I still tire easily and can't get by on 5-6 hours of sleep anymore.  I can walk on a treadmill for an hour with no problem as long as I don't incline it.  It probably took me almost 2 years to get used to taking all the drugs.  Then I started taking them all in the evening and that helped tremendously.  My energy level went up dramatically when I did that. 

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  • Marie45
    Marie45 Member Posts: 31
    edited February 2010

    I was diagnosed in Nov 2008.  I had a muga scan before I started Chemo to establish a baseline.  I am one of those patients that thrives on very little info.  My Med Onc said it was fine.

    I had 6 rounds of FEC and had a muga scan every three months when I was on that because the 'E', Epirubicin (sp?) causes heart damage. 

    I had 9 rounds of Taxotere/Herceptin and every three months I had a muga because Herceptin can cause heart damage..

    About 3 muga's ago, I had it on a Monday and I saw my Med Onc Tuesday.  He tried to get the results but couldn't.  The next day I had Chemo so I asked the nurse to check my file for the results of the muga.  She came back and said I was at 50%.  I asked her what a pass was?  She said 50% and that my doctor put a note in my file to go ahead with chemo.

    The next time I saw my Med Onc I told him that I heard my muga result was 50%.  I asked him where I started?  He said 57%.  I said it didn't start at 100%?  He laughed and said that if I started at 100% I'd be in serious trouble.

    The second last time I had a muga, I was back up at 57%.  My Med Onc said it happens.

    I had a muga Feb. 1st and got the results a couple of weeks ago.  He said it was fine - we are back to no numbers because I don't want to know.

    I am on Herceptin for either another year and a half or two years.  I've just had my 5th or 6th treatment of Herceptin alone.  He said I would be getting chest, abdomen and pelvic CT scans and a muga scan every three months.  I asked him if he would consider an MRI instead because I recently heard that an abdomen CT scan gives off roughly the same radiation as 500 chest X-Rays and that apparently some doctors don't even know or consider the potentional damaging effect of the CT versus it's benefits.  My Med Onc said he has considered the amount of radiation vs the benefit and he said he has determined that the benefit far outweighs the risks for me.  He did say that he would consider an MRI though.

    I asked if at some point what happens if my muga is bad?  He said there is a medication that can be given before treatment to 'help your heart'.  He said when that stops working, treatment stops.  He didn't say what happened after that - I don't want to know!! 

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