prognosis for heart failure?

rosemary · 07-23-2008, 07:41 AM

I was on Herceptin from May 2007-April 2008.On March 19 I had a Muga scan which put my LEF at 49. My onco scheduled a chest x-ray which would have caught any major heart damage 8 weeks later. Five weeks after the MUGA I went into the hospital with congestive heart failure and a LEF (by echocardiogram) of 15-20. During that time I also had a respritory virus which may have contributed to the heart failure because everyone onco,cardiologist, oncology nurses tell me that things should not have gotten that bad that fast. It's July and my LEF is between 25-30. I know I am still getting better, I can feel it, but my big worry is will this come back later. Nobody knows around here where I am the third case they have had. Is Herceptin too new to know long term prognosis ?

Joe · 07-24-2008, 02:10 PM

Generally, unlike adriamyacin, the cardiotoxicity of Herceptin is not permanent although the time to recovery varies from person to person.

Regards
Joe

lynnmarie3d · 10-21-2008, 01:14 PM

I had to stop Herceptin after only 6 months because of reduced heart function, and my onco told me that some studies report that 6 months is often enough to prevent recurrence. I also had dose dense chemo containing A/C, followed by taxol + Herceptin. Because of my low MUGA score, he said that I would not be able to receive the next kind of drug (Tykerb?)if I ever were to recurr, unless my heart function had improved, since the requirement is an ejection fraction score of 50 or higher to take Tykerb. Has anyone else had to stop Herception because of reduced heart function? Is the six months of Herceptin study is available to look at? I had planned on staying on Herceptin indefinitely like many of you ladies report, so I have been very diappointed (and worried) that I had to discontinue the Herceptin. I am currently only taking Tamoxifen to help prevent recurrence.

rosemary · 10-23-2008, 08:29 AM

There is a study that has been in the news, at least on-line, that shows that 3 months of Herceptin is effective in preventing recurrence. That is only one study but it gave me more confidence after I had to stop Herceptin because of congestive heart failure and a LVEF of 18. That was about six months ago and my LVEF was up to 30 in July. I don't see the cardiologist for another 3 weeks but I feel much better and am eager to see what it is now.

lynnmarie3d · 10-23-2008, 10:48 AM

Hi Rosemary,

Thanks for sharing your experience. Does your dr. attribute the problem to your chemo or to the herceptin, or to both? I don't believe they are giving A/C to patients at my hospital any more if they are also going to get herceptin. My diagnosis was in Dec. 2005, and that is a change that occurred after my treatment was already over. Things change so rapidly, and I am so grateful to have been able to receive the amount of herceptin that I did. Hopefully, it wil be enough.

rosemary · 10-23-2008, 12:17 PM

Hi,
My oncologist attributed the heart failure to Herceptin but kept saying that it should not have happened because I was 11 mons. into Herceptin and the longer you are on it the less likely heart damage is supposed to be.
The cardiologist had a slightly different take on it. after each treatment I told him I had he said -that's hard on your heart. I had A/C then Taxol and Herceptin and radiation (on my right breast). I also had a respritory virus for 2 weeks before the heart failure and that could have contributed also.
I feel a lot better now but that was a very scary experience. Good diet, meditation and moderate exercise seem to help.
I am feeling much better now, about 5 months down the road.

Jackie07 · 10-23-2008, 03:05 PM

I had to stop Herceptin after 22 weeks. The Fin Her study had shown that 9 weeks Herceptin is equivalent to 98% of the effect of 1-year Herceptin.

duga35 · 10-28-2008, 03:27 PM

I stopped Herceptin after only 7 treatments because of a low Muga/Echo score. When I first had the Muga they said I was at 36%. GULP

I had an echo which put me at 45% so the re-read the Muga and said they made a mistake and that it was really at about 43%.

I just had another echo done last Friday so I'm waiting to see what that one says.

My onc also told me of the studies in Europe of short term Herceptin treatment being as effective as a full year so he doesn't think I should have any more even if my score improves. I hope he knows what he's talking about! lol

Now, if I could just get my mind off of all the swollen lymph nodes that have been popping up all over my body. He says not to worry about it because I was blasted big time with my chemo cocktail.....buuttttttttttt........

Tell that to the nodes in the back of my neck, behind the ears, in my good arm, belly, etc etc etc.

Jackie07 · 10-28-2008, 08:10 PM

Duga,

Your signature says that all 17 nodes were clean. Are the nodes you just mentioned here new ones that had developed while you are undergoing chemo?

When I had the Gamma knife for my recurring brain tumor in 2001, I learned that it will take a while for the tumor to shrink and possibly disappear eventually.

duga35 · 10-29-2008, 06:20 AM

Yes, they are all new ones that have popped up within the last 30 days.
I didn't even have swollen nodes before my cancer was detected!

rosemary · 03-31-2010, 06:31 AM

I thought I would dig this up and tell everyone that my LVEF is up to 51.2 at my last Muga scan last week. I am realy happy and relieved.

lynnmarie3d · 03-31-2010, 07:25 AM

Thanks Rosemary for sharing your good report! I just had an echocardiogram last week and have not yet heard the results.

Nancy L · 03-31-2010, 09:41 AM

http://www.theglobeandmail.com/life/...rticle1515391/

Read this article for Dr. Slamon's take on Herceptin/heart issues.

krisvell · 03-31-2010, 04:35 PM

Nancy,
Great article. I have to get a Muga this Friday as my echo was borderline to keep getting Herceptin. I only have 4 treatments left and would like to make it to the finish line.

Kris....

ElaineM · 03-31-2010, 09:27 PM

I hope you get stronger day by day. Take good care of yourself.

weety · 04-08-2010, 09:30 AM

Thanks for all the postings about your heart damage due to herceptin. I have a question for those of you who experienced heart decline while on herceptin: Did you have any symptoms (besides the low MUGA scan) and if so, what were they?