hi still very worried had 9 herceptin but last echo showed a drop from 68 to 55 and comments were left side heart damage. so all on hold now. can anyone enlighten me… does my heart repair itself… will i need medication ops etc…will i be normal again in time or is it for life… any advice. are there things i shoudl be doing or not doing. i have repeat echo on 25th then onc but i cant wait that long and you lovely lot on here are so knowledgable. xx
Hi jal7777
Its sounds like you have a few concerns with regard to herceptin.
Here is the the link to the BCC factsheet on herceptin:-
breastcancercare.org.uk/server/show/conPublication.123
This may help to answer some of your questions while you wait for the other forums users to reply with their experiences.
If you feel you would like to talk this through then please don’t hesitate to give the helpline a call and talk with a trained memeber of staff who can offer you support and information as well as a listening ear. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
Kind regards
Sam (BCC Facilitator)
hello Jal,
My heart function went down and I missed one herceptin, and when i had another scan it had gone up enough to restart the herceptin. it is a bit frightening when your heart is affected by the herceptin. But I do think that often it receovers when the herceptin stops.
Hope things get better for you
anne
Hi Jal,
Coincidentally I logged on here just now intending to post exactly the question you have asked!
Today I saw my oncologist (having had an ECHO last week), to get the OK for my final infusion of Herceptin due next Monday. However, my ECHO had shown that my left ventrical score had gone from an initial 70% to only 49%, and my oncologist has therefore decided I should stop Herceptin.
To be honest, I was not surprised, as in the last few weeks I have felt very tired, and also experienced palpitations.
I did ask him if my heart would recover, and he told me that in most cases it does. I have to go and see him in a months time to report any problems and see how I am feeling, and I will have follow-up ECHO’s to check on my progress.
It’s all very worrying, but I am hoping some forum members who have had a similar problem will come along with reassuring news!
Hugs
xxx
Hi all, my heceptin infusions were stopped after 13 (December) of 18 infusions because heart scan showed a drop to 48%. Onc said it had been dropping since the first infusion - was not told of this before. Further heart scan and onc visit in March to see if my heart has recovered, onc said last appointment it is likely that the hear would recover. I’m just hoping, but still suffer breathlessness. Must say that the sore ribs on left have disappeared since stopping.
I’m one of those who has been on herceptin for some time now. I started in Jan 2004 and have gone on without a break. When I started my LVEF was only 56 (the Marsden do MUGA scans rather than ECHO). I am scanned every 3 months and have had fluctuations up and down to as high as 66 and as low as 42.
Herceptin works very well for me as I have had an awful lot of chemos and had reached the point where the only thing left was Phase 1 trials. They then discovered that my last histology from 1999 showed I was HER2 +++ and as my bc has been pretty relentless since 1990 they think had the test been around then it would have been the same.
When the LVEF fell to 42 I did my research carefully and knew that there were two different schools of thought on whether herceptin should be stopped or not so I asked my onc what else he had to offer if they withdrew herceptin and drew a blank!!! So I said to him that I would prefer to die from heart failure than breast cancer. 
He let me go on and said might review after next scan. But it went up to 66 after that one. I know the NICE guidelines say they should stop on an LVEF of below 50 but as I had no other symptoms he let me continue which goes to show that it can recover without stopping the drug. My hope now is that it continues working for me without to much of a drop in LVEF.
Some oncs believe that it helps to be on an ACE inhibitor if your LVEF is a bit on the low side.
dawnhc
Hi
Interested - after only 3 herceptain i went from 64 to 52 so was wondering …
Whats an ace inhibitor? thanks , jayne
Hi
my score went down after no 11, cant remember exact numbers as Oct 06 but do remember was a drop of just over 10. my onc stopped number 12 (i was her first patient on primary getting the drug and basically her guinea pig, she had to do some research) she gave me a couple of weeks off then ordered another echo - my score was back to normal and I went straight back on treatment and never had a low score again. In the end Onc blamed it on the radiographer, the day I had the low score it wasn’t my regular guy, he was there but the head nurse had insisted on doing my scan as a doctor was in the room observing, they all had a big discussion on one of my scores as one valve tucks right behind one of my ribs. I personally think she mucked my score and i could see the regualar nurse shaking his head while she was doing scan. she also took double the time I was glad I didn’t get her again.
hopefully your scores will recover too.
Debbie x
Hi Jayne,
I quote a little of what I found on google on medic8.com healthguides
ACE Inhibitors (ACEIs), or inhibitors of Angiotensin-Converting Enzyme, are a group of pharmaceuticals that are used primarily in treatment of hypertension and congestive heart failure, in most cases as the drugs of first choice.
Indications for ACE inhibitors include:
* Prevention of cardiovascular disorders
* Congestive heart failure
* Hypertension
* Left ventricular dysfunction
* Prevention of nephropathy in diabetes mellitus
At the time I was prescribed these I was having some problems with high bp and the consultant suggested I took these in a low dose as they would help protect my heart as I had been on herceptin for so long.
dawnhc
I was supposed to have a course of 18 Herceptin treatments but my heart function dropped so dramatically (from 55 to 35)after the first 11 that my Onco decided it was too dangerous to continue. A year on and my heart is still struggling to recover. The last Echo test showed it had risen to 45 which is a great improvement and I am having my next echo test in 6 months time. Over the past year I have been seeing a heart specialist and he put me on Ramipril and Beta blockers. I saw him a fortnight ago and he has taken me off the beta blockers. He will decide in 6 months time if I can come off the Ramipril…all depends on the echo test.
I honestly wish I had never started the Herceptin as I was doing really well after chemo and radiotherapy. I live in Australia and our government made Herceptin free to all BC patients and I was urged by my Breast Cancer nurses to take advantage of this wonderful drug. I was just unlucky I suppose to be one of the small percentage of patients who suffer severe side effects from Herceptin.
My experience was unusual…just my luck LOL.
Rennay
Hi,
Perhaps this news will brighten you all up. After chemo my LV was 55.
I always maintain to would have been much higher if tested before
chemo however, after only 4 Herceptin my LV went to 39 !! no more Heceptin, it recovered and 1 years late I was back at 55 then next year 57 !! but here is the good bit . I had my echo on Feb 20th
and the LV was at 82. This is 5 years on from a grade 3, 23 nodes involved to no recurrance… What good news and they say that perhaps 4 Herceptin is enough. All treatment was at the Marsden.
I hope you all can take some cheer from this
I wish you all the best of Luck, herceptin is not nice but worth the discomfort?
Kieran
Rennay,
I was sorry to read about your rotten luck on Herceptin, and it is all down to luck, some can take years of Herceptin and others only 3 months or less. When the LV goes that low you really do feel it and you know that something is very wrong though you are still being told about the wonder drug. My case I was lucky. I used to wish I had never heard of it too. But you can imagine my joy when I heard
the 82% It was like getting A* at A level results!!
I wish you all the best.
Kieran
Thanks for posting this Kieran…it’s given me (and probably lots of others) a great deal of hope.
Best wishes to you, and long may your good health continue :)))
xxxx
Hi everyone, i have been reading your posts re heart function. I was wondering how you know your LVEF score, was this given freely or did you have to ask.I went for an echo prior to my first herceptin. I was told it looked as if my heart function had deteriorated and it was thought i had a clot. I was then sent to a different hospital for a scan using dye, my heart function was ok and the “clot” they think is an anomaly i have had since birth.I then had my herceptin and before the 3rd one went for another scan. This time there was no doctor to do the dye (seemingly it is hard to see my heart without it) and so i got a normal echo. I was told the results were the same as my first echo which i thought meant decreased heart function, however when i asked the onc she said my function was ok but she could not tell me the level as it was not on the report.I am not due another scan for 3 months yet i have been sent an appt for one for next week. Sorry this post is so long but i would value your thoughts on this
many thanks x
Hi there
Just to let you know it can recover . Mine started at 67% and dropped to 55 to 51%. I have been on herceptin now for 16 months. Last year it returned to 67& and has dropped again to 63% last scan.
Not only that my liver mets has invisible on scan.
The heart has great capacity to recover. Even at lower 50s its still ok.
Kate
hi thanks to you all for your kind comments it has given me some hope. i did go ahead and restart. i had to have no 10 in hospital as too long a gap from no 9. it was horrible in hospital just waiting for something to happen… hours seemed like days… i then had no 11 and 12 at home. i am due 13 next tues. then heart scan thurs and onc the following tuesday. please can anyone explain. the pain i get in my side. i think its my heart but could even be ribs. its weird like a needle.i think its me worrying as i do that well… i wish they hadnt told me as now every twinge i get i think… i have no breathlessness no palpatations etc. but just worried. i will go ahead with treatment etc next week as its prob all in the mind…i know if i start seeing doc etc now i will have too long a gap between treatment and i know theres no way i can spend another day in hospital for a reloading dose. i am tried but have been since started no different. some days full of energy others fit for nothing.