Hi There
I just wondered if anybody who has to stop taking herceptin due to heart scan results of below 50% and if you have recovered?
I have been told my herceptin has now been stopped as my heart scan was only 44%. I am due to get another scan done on Wednesday 7th October but probably wont get results until i see the doctor the follwing Tuesday.
I hope somebody can give me some info regarding this.
Many Thanks
Lorraine
Hi Lorraine,
Good luck with the next scan. I have been on herceptin for a long time now - 6 years. My heart scans have been up and down like a yo-yo. Lowest dip was 42% and the next scan was 76%. Both extremes were unusual for me but it does tend to fluctuate quite a bit. That is the only time it went below 50%. My average is around 56%. My onc allowed me to continue when it was 42% because I had no symptoms and we were all surprised when the next one was so good. Most people find after a short break their heart recovers so don’t despair.
Dawn
xx
Hi sorry to jump in on your thread as this was something i am worried about as well.Im due to get my 3rd herceptin on tuesday,i was told my 1st scan pre herceptin was low ie borderline for herceptin at 55% i wondered at how low it has to go before they stop the herceptin and how long they wait before continuing with it.I hope somebody can answer our questions. thanks julie x
Thanks Dawn, that is good to know that the heart can recover from it being so low. I have been worried about it especially since i have had other systems along with it, ie shortness of breath swollen ankles and feet. I will be hopefully glad after the next scan.
Goodluck with the rest of your treatment
Thanks Again
Lorraine
Hi Julie
My heart scan was only 52% when i first started on herceptin and my OC told me not to worry about it. After my 10th treatment i was due my 3rd heart scan and it had fell to 44%. I have been told i wont be having anymore treatments.
I hope this has been of some help to you.
Lorraine
Hi again Lorraine,
With symptoms of shortness of breath and swollen ankles it is a bit more of a problem. As I said, in my case there were no symptoms apart from the actual scan results. So I don’t want to raise your hopes. There is no point continuing if you are going to end up with heart failure is there? But having said that - there are medications that can help such as ACE inhibitors and it may be that if you are put on them your heart will improve. I think sometimes they like a break of 3months. I have to say I dread these regular scans and fear being told I have to stop because for me it is a lifeline. I have had all the chemos I can have and believe that in my case it is herceptin that is keeping my cancer at bay - I have secondaries which is why I have been on it so long.
Dawn
xx
Hi lorrainer
You may find the BCC fact sheet on herceptin useful to read as it has a section on side effects. If you would like to have a look at this just follow this link:-
breastcancercare.org.uk/upload/pdf/herceptin_-_dec_08.pdf
I hope you find this helpful.
Kind regards
Sam (BCC Facilitator)
Hi Lorraine,
I am just having my second break from Herceptin my last scan was between 25% and 30% (scary!)the previous one was 44% and we carried on with it
However, like Dawn I have no symptoms apart from being slightly breathless if I climb a very steep hill.I play golf three times a week.
I also have secondaries, so my Onc is desperately trying to get me back on it, I am taking ACE inhibitors to hopefully help.
I am also on a chemo break, I have a c.t. scan and an echo on 15/10/09 so off on holiday next week to bury my head in the sand!!
Good luck,
Take care,
Love,
Janx
HI
Thankyou Dawn and Jan for your comments they are much appreciated.
I hope you have a good holiday Jan and i will keep you posted on my next heart scan next week.
Take care
Lorraine
Hi
My Herceptin was stopped after 12 infusions because my last echo cardiogram on 16th June 2009 showed my LVEF had dropped to 42. I had a cardiac MRI scan on 22 July 2009 and the LVEF had risen to 52 and the latest muga scan on 29th September 2009 showed a further increase to 59. So my heart has improved steadily and I have been able to resume my Herceptin with my oncs permission although the cardiologist recommended I didn’t have any more Herceptin.
Lyn
Hi Lyn
Its good to hear your heart is recovering from the herceptin and you have been able to start it again, it gives me hope that my heart will recover too.
Hope you are well and goodluck for the future
Lorraine
Hi Ladies,
I’m looking to catch up with some of the ladies from this thread to see how their heart functions have improved. I have been taken off herceptin after only 4 infusions as my LVEF level has dropped to 42%. I am due to see a cardiologist next Friday… I have been told that my heart should recover but I am worried that I won’t be offered herceptin again… I have symptoms of shortness of breath and swollen legs and chest pressure.
Kind regards
Fiona xx
Hi Fiona
I have to get my next heart scan at the end of January. My OC also stopped the Herceptin and said i wont be getting put back on it. I was also suffering from shortness of breath, swollen ankles and legs. My OC put me on Ramipral 2.5mg to regulate the heart so fingers crossed they have been working but i was also told the heart will get back to normal but it may take some time.
I hope this has been of some help and hopefully your heart will recover soon.
Thanks
Lorraine
Hi Lorraine,
I have been taken off herceptin also. The cardiologist said my heart looked fine and there is no lasting damage, he didn’t have a problem with me starting back on it but my oncologist said he felt my heart would do it again. I’m not on any heart medication and I have a muga scan in two weeks so I’m hoping it has recovered. I had 3 herceptin with Tax and then 3 fec followed by 4 herceptin. So I hope I’ve had enough. The other arm of the trial saw patients only having the 3 with Tax, this is supposed to be equivalent to a year of herceptin. Hope things work out with you and you get good results with your Muga.
Best Wishes
Fiona xxxx
I have just had my 4th herceptin (first 2 with last 2 chemos) and due an echo next week. Will let you know if there has been any change.
x
Ive just got in from hospital,hoping to have herceptin ,ive had 6herceptins with 6 taxoters,but echo reading showed a drop or blip whatever ,"i never asked how low ",so i never got it .Onc explained i will have another reading in 4 weeks if its still the same ,ill have a tablet whilst having herceptin ,if its back to normal ill just have herceptin ,am on femera as well ,just feel scared that i never got herceptin , its weird but i feel safer whilst am getting these chemical drips in me ,ive finished chemo for now barb xx
HI my herceptin was stopped last week after my 5th infusion, ive been getting a lot of lightheadedness and palpitations i had an echo 4 weeks ago which was ok, but because of the lightheadedness they did another last week which showed a drop below 50% i started on 55%.I have been put on ramipril and bisoprolol an going back 16th feb for another scan, if the heart improves the cardiologist said i should be able to go back on the herceptin.My worry is that i wont get back on it and the cancer returns, i was diognosed with invasive ductal carcinoma grade 3 with lympho vascular invasion am i just worrying unnecesarily?
julie x