How Many Had To Stop Their Herceptin Treatments?

nancymarie · 05-23-2006, 07:40 AM

Hi there,

I had an appointment with my onc yesterday and all weekend I was thinking about the benefits of herceptin but also was thinking about all the side effects I had. I made my decision that I was going to continue my herceptin treatments for another 6 months.

Yesterday, my onc had the results from my echo (and sorry if I don't know what the medical term is for when your hearts functions less) but mine dropped from 69% to 50% so he recommended discontinuing any further herceptin treatments.

How many others out there who had to stop their herceptin treatments because of their heart?

Just wondering if they figured out why some get this problem and so do not
and maybe it's also the reason I had so many other side effects.

Thanks in advance,

-Nancy in Colorado

karenann · 05-23-2006, 11:13 AM

Hi Nancy,

I had the same thing happen in March. I went in for an echo and my ejection fraction had dropped 10%, from 63 to 53. I had to stop the Herceptin and since it had been six weeks since my last echo, I had another one and my EF was back up to 60. I only missed the one infusion and now I only have three more to go and I will complete my year of treatment.

This is a very common syndrome in women who are receiving Herceptin. If I were you, I would request another echo and go from there.

Karen

lexigirl · 05-23-2006, 04:10 PM

Hi NAncy,

I did have to stop my herceptin tx for about a month. My EF was actually okay b ut my heart actually had become enlarged. This is NOT common and the Dr wasn't sure why this would happen. Thankfully my heart size came down some and I began the tx again. I had a muga on Thurs and will go to see my onc on this Thursday. I will find out the results of my muga and hopefully I will be okay and can continue with the herceptin.

Lexi

nancymarie · 05-23-2006, 04:15 PM

Karen Ann and Lexi,

How long were you supposed to be on Herceptin when you took your break? I was only supposed to be on it for one year so I got six months of treatment in already.

My onc also mentioned that they don't know if one year yielded better results than 6 months since no study was done on that so I doubt I will continue my treatments.

Thanks for your replies!

-Nancy

karenann · 05-23-2006, 05:05 PM

Hi Nancy,

I am just now completing my one year of herceptin. I started last July and I have received it every three weeks. When I was pulled off, I had just completed 12 infusions.

Karen

lexigirl · 05-23-2006, 07:33 PM

Nancy,

I had completed 11 weekly txs. After my break from the tx I had a loading dose and then another tx 3 weeks later. If all goes well I hope to stay on the 3 week plan. I would be very happy if it turns out that less is more just in case I must stop the tx.

Lexi

karenann · 05-23-2006, 07:48 PM

Lexi,

I live in Norther California, too.

Karen

Cathya · 05-24-2006, 12:14 PM

Hi;

I just got back from my onc. I too was taken off herceptin due to low MUGA....42. My MUGA is now 51 so that's good or at least moving in the right direction but my heart is enlarged....like Lexi. My onc said that there are two factors to the gated heart scan. One is the score we are discussing and the other is the pumping action of the heart itself. He said that my heart because the heart is not pumping vigorously and the muscle is kind of sagging...(I am paraphrasing as he used a technical term which I can't remember but this is the jist of it). This sagging is common of any muscle which is "not vigorous" (again paraphrasing) and this makes sense to me as I lift my arm and look at the sagging.....lol. So, although the score is over 50 he wants to wait. He doesn't want permanent damage to the heart which would keep me from ever being able to use herceptin again in the future. So it's a wait and see.

Cathy

Cathya · 05-24-2006, 12:18 PM

By the way, he had this test done for the first time at the Heart Institute as opposed to the General Hospital where I normally go. The tech was amazing. He used my port and pulled blood out of it to mix with the radioactive agent and let that stand awhile (with non clotting additive) before re-injecting it into me. He said that the results would be much more accurate. The equipment was different and more advanced as well. I hope I can go there in the future. At the General the tech's refuse to use the port and it is not nearly as professional.

Cathy

Blondey · 05-25-2006, 08:29 PM

I had to stop taking Herceptin for one month too. My ejection fraction dropped from 68% to 54% but it's back up to 64% so just had my 27th Herceptin treatment. Half way done

tousled1 · 05-26-2006, 07:05 AM

All reports indicate that a year of herceptin is good. They are not sure if less is more. There is currently a clinical trial in which herceptin is given for 9 weeks. It will be interesting to see the results.

aquinis2000 · 05-26-2006, 07:28 AM

a 3 year long study has been completed already, showing a short 9 week
treatment with herceptin delays progression, just as the year does. I sure Genetech will do everything possible to diminish these results as, there multi-billion dollar profit would surely drop if proven true.Even the latest post by Joe about Glaxo seems to revolve around the money. There multi billion dollar revenue. Its pretty hard to believe anyone with numbers like that.

www.natlbcc.org/bin/index. asp?strid=805&btnid=&depid=20 - 39k - Cached - Similar pages

lexigirl · 05-26-2006, 08:25 AM

HI Cathya,

I just wanted to let you know that I met with my onc yesterday. My ef went up to 62 I believe and my heart is still coming down in size. Praise The Lord! I was very happy and she was happy too. I received my herceptin and will have another heart scan in 6 weeks. I'll keep you posted.

Lexi

kat in the delta · 05-26-2006, 01:55 PM

Nancymarie,
Is the Echo better than the heart muscle test to see how Herc. is affecting the heart ??? kat in the delta

Jean · 05-26-2006, 05:55 PM

Hi ladies,
Have a question to all of you - how many of you had A/C chemo?
verses TCH - just curious - and also it seems the short break is bringing
good results and I am happy for all that go back on their herceptin.
I just had my first trt yesterday - all went well - have another question.
My onc. is giving me herceptin every week for 9 wks. then 3 wks there after for a yr. (sounds typical) at what point in time do you have your heart tested again, I did not ask my onc. yet but will do so on next weeks visit.
Also how many of you have a port?
Thanks for sharing -
All good wishes,
Jean

Cathya · 05-26-2006, 06:21 PM

Jean;

I have a port and absolutely love it. I get my heart tested every 2 months...because I'm having trouble...score is up but heart remains enlarged. I am expecting to be on herceptin long term...that is how my onc worded it....once I'm able to get back on it.

Cathy

madubois63 · 05-26-2006, 06:49 PM

I started Herceptin in October of '04 after my relapse. After a year of weekly treatments, my MUGA dropped to 50 and I was taken off the Herceptin. I had a 3 month break and the rating went up to 67. Now with all this crap I've been going through with the leukemia, I haven't had Herceptin (or chemo) in over 2 months. I did have an echocardiogram, I wore a monitor for 3 days and I had an angio CAT scan. My heart is in great condition - THANKFULLY. The echo gave me a rating of 64 but the tech said the MUGA rating was more reliable?? I had a MUGA done just one week before the echo and it was up to 69. I personally think little vacations from time to time are good. Jean - I did have AC 6 years ago.

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atdec05 · 05-26-2006, 09:18 PM

Hi Jean,

I just had A/C. I seem to be in the minority, because most women seem to have ACT. My onc. said I could skip the Taxol because I was stage 1.

I have a port (very glad about it). I have echos every 3 months on the herceptin, as well as one before AC and one after AC before the Herceptin. My onc. didn't recommend an echo becfore the Herceptin, but I pushed for it just to make sure the AC hadn't done anthing to my heart.

- Anna

athena453 · 05-26-2006, 10:16 PM

I had AC followed by TCH. My LVEF dropped from 64 to 45 in a matter of months and I stopped Herceptin for about two and a half months. My onc said that she felt it "stunned" the heart in younger patients. My LVEF popped back up a month later to 54, just as she predicted.

I do have sporadic episodes of irregular heart beat, lasting about ten seconds.

I plan to stay on the Herceptin as long as my heart and insurance policy tolerate it.

Jackie · 05-29-2006, 07:47 PM

I too had to stop taking Herceptin because a drop in my Muga from 68 to 54. I had received 6 months of Herceptin when this happened. I was off of Herceptin for 9 weeks and then had another Muga. It had come up to 57. I was put back on Herceptin at half the dose and will do this for 3 treatments every 3 weeks. I will then have another Muga to see if it has continued to go up. My onc. expects to see an increase. I did receive AC/Taxotere.