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05-23-2006, 07:40 AM
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#1
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Member
Join Date: Oct 2005
Posts: 24
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How Many Had To Stop Their Herceptin Treatments?
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
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05-23-2006, 11:13 AM
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#2
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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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
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05-23-2006, 04:10 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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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
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05-23-2006, 04:15 PM
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#4
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Member
Join Date: Oct 2005
Posts: 24
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How Long Were You Supposed to be on Herceptin?
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
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05-23-2006, 05:05 PM
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#5
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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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
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05-23-2006, 07:33 PM
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#6
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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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
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05-23-2006, 07:48 PM
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#7
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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Lexi,
I live in Norther California, too.
Karen
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05-24-2006, 12:14 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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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
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05-25-2006, 08:29 PM
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#9
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Member
Join Date: Apr 2006
Location: NJ
Posts: 18
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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
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05-26-2006, 07:05 AM
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#10
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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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.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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05-26-2006, 07:28 AM
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#11
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Senior Member
Join Date: Nov 2005
Posts: 51
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9 week study
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
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05-26-2006, 08:25 AM
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#12
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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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
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05-26-2006, 01:55 PM
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#13
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Senior Member
Join Date: Apr 2006
Location: MS Delta in Clarksdale="Home of the Blues" (near Memphis,TN)by Misssissippi River/levee's highest pt.
Posts: 224
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kat in the delta
Nancymarie,
Is the Echo better than the heart muscle test to see how Herc. is affecting the heart ??? kat in the delta
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05-26-2006, 05:55 PM
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#14
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Good Luck to all!
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
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05-26-2006, 06:21 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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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
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05-26-2006, 06:49 PM
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#16
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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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.
..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´
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05-26-2006, 09:18 PM
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#17
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Senior Member
Join Date: May 2006
Posts: 144
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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
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05-26-2006, 10:16 PM
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#18
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Senior Member
Join Date: Sep 2005
Location: Virginia
Posts: 53
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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.
__________________
Dx 5/2/05 at age 27, L Mast. 5/11/05
Stage IIIC, 30/34 + nodes, 8x4x3.5cm tumor
ER/PR-, Her2+++ (5.16 FISH)
R prophylactic mast. 3/3/06
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05-29-2006, 07:47 PM
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#19
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Senior Member
Join Date: Mar 2006
Location: (Hill Country) Texas
Posts: 72
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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.
__________________
Jackie
Stage II, Grade 2, DX 4-05
EP +, HER2 +++,
1 node+, 1.6cm
46 yrs. old at time of dx.
Completed Chemo 11-05
Completed 1 yr. Herceptin 8-06
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