Herceptin

[Toubev]

I would like to hear from anyone who experienced heart issues on herceptin. I would also like to hear from those being treated with it & what kind of heart monitoring they had while on it. I only had a muga scan before chemo & no other monitoring until I got really sick. This is my first time on the message boards. I just had my 2 year anniv. on Sept. 3rd but this is also my second go round with B.C.

[Lolly]

I haven't had any decrease in heart function while on Herceptin, which I started in Jan.2001. I'm monitered every 6 months with either an Echo or a MUGA. Waiting for results of my MUGA last week. I have always been in the "low normal range", mid 50's.

Are you on Herceptin now? When you say you got really sick, do you mean you have experienced decreased heart function?

<3,
Lolly

[BonnieT]

HI
I had a MUGA before hercpetin and then after 2 months on hercpetin with taking it every 3 weeks. My MUGA dropped from 52% to 37% so I stopped herceptin and saw a cardiologist who did an ECHO, he said there was no heart damage. He then put me on Coreg. and Lisinopril for my heart, I had another MUGA about 2 months later and it went back up to 53%. So I have just started herceptin again, but I am trying a lower dose and taking it weekly, I am still on my heart meds and will have a MUGA in 2 months. THere are some people on this board that take Coq10 that is suppose to help heart function. The funny thing is I didn't have any symptoms when my MUGA had dropped into the 30's except I was a little tired and who isn't :-). So I guess I am being monitered about every 2 months, I also have an appt. with my Oncologist and Cardiologist every 2 months right after my heart scans.
Hope this helps
God Bless
BonnieT

[Toubev]

Thanx for the input. I was hospitalized with congestive heart failure which was from the herceptin. My ejection fraction was 27 when I left the hospital & only 33 after 6 weeks. I was told that I would not be able to continue on the treatment. I did not have any monitoring of my heart at all before the hospital stay which is why I now have a different oncologist. I spent 8 days in the hospital but had been complaining for 5 wks prior that I wasn't feeling well & no one was listening. I then spent 4 more days in the hospital with an adverse reaction to one of the heart meds I was on. Now I just pray that the few months I was on herceptin had some benefits. I can tell you that this was far worse than the chemo I was on. I can't even explain it in words.

[Lolly]

Whoa. Only 27% ejection fraction, that is cutting it pretty close. I can understand why you changed oncs. Monitoring LVEF while on Herceptin is considered standard of care, especially when combined with chemo. When I first started Herceptin I remember telling my onc that I didn't care if I got heart failure, I'd rather go from that than cancer, and he just shook his head and said, "No, if your heart function gets too low we'll have to stop the Herceptin!"
If you don't mind answering another question; When your heart was damaged, were you on a Herceptin/chemo combo or Herceptin alone?

<3,
Lolly

[Toubev]

Thanx Lolly. To answer your question, I was only on the herceptin. I had been seeing another oncologist for the chemo which ended in June of 2004. I was interested in the herceptin which is how I came to the next onc. & had started the herceptin in Oct. & ended this past May, just 12 days before I was hospitalized. I did a lot of research which unfortunately didn't work too well for me.

[Carol.hope]

Hi Bonnie. Are you back on Herceptin and did your LVEF stay up?

I would like to hear from people who have recovered from low LVEF.

Mine was 56% in February, after 12 weekly doses of Herceptin plus Taxol (following A/C). This week it was 35%, so I have to stop Herceptin and have another MUGA in a month. It's good to hear from people who made it through this, to keep me thinking positvely!

Thanks. - Carol

[Cathya]

Hi all;

This subject is of great interest to me as well. My MUGA went down to 48% for 2 tests (about 8 weeks apart) and then dropped to 42% so I was taken off herceptin. That was 6 weeks ago and I go for another scan tomorrow and see my onc on the 24th. I am really hoping it is improved so I can go back on it. I take CoQ10 and Magnesium for my heart and am hoping this helps.

Cathy

[BonnieT]

Hello !!
Sorry I haven't been on this site for awhile , busy with kids !!
The first thing I would do is see a cardiologist. They specialize in the heart. Mine put be on Coreg. 6.25mg twice a day and Cozaar 25 mg once a day, and I stopped herceptin for 2 months. I also put myself on 150 mg Coq10 found at many health stores. My Cardiologist doesn't really believe it does much but my MUGA has been steadily going up !!!! He also did an ECHO so he could look at my heart and there was no heart damage.After 2 months off of hercpetin my Muga was back in the low 50's.
I then talked to my Oncologist about taking herceptin weekly instead of every 3 weeks.Which allows you to take a smaller dose every time but it equals the 3 week dose.
It is a pain going every week but it really made a difference.When I started my MUGA went down to about 47% but they let me keep taking it because I didn't have any heart side effects like swelling in the ankles or being really tired.This is why I think it is really important to see a Cardiologist. I started out slowly with the COQ10 50mg once a day and then 100, and now I take 150 mg a day. But I know people on this site take more.
I now take herceptin weekly and have a MUGA every 2 months and see my Cardiologist and Oncologist after the MUGA.
I will be taking Herceptin until the end of August, My Oncologist added two months for the 2 months I missed for a total of one year.
my last MUGA was 53% !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I hope this helps, keep me posted !!!!
God Bless
BonnieT

[Carol.hope]

Hi Bonnie. Thanks for the good news! It really does help to know you're doing well. I've been taking CoQ10 (300 mgs/day), plus some other heart-supportive supplements my naturopath recommended. I'll check out those meds you took and look for a cardiologist. I did well on the weekly Herceptin at 117 mg, (with Taxol) although the hassle factor looms.

Thanks so much for your support, and best of luck to you. - Carol

[Carol.hope]

Cathy, good luck - tell us how your MUGA went. - Carol