Hi been on Herceptin 19 months for secondaries in liver had a mugga scan tuesday just been told have to stop treatment due to heart dropping to 47 percent dont go and see onc until the 30 november so got quit a wait to find out what will happen has anyone had this happen to them if so what do i expect to happen next.Would be really gratefull to any replies thanks Lindsay xx
Hi Linzs,
I don’t have secondaries myself but when I was attending my herceptin sessions I met a few ladies who were in your position. I remember one in particular who had her treatment stopped 3 times after heart function dropping. Each time it recovered after a break and she was able to restart her treatment. There may also be other treatments they can offer in the interim. Your BCN might be able to reassure you until you can see the onc. Would be worth phoning.
Big hug. Jan x
Hi Linzs
I had Herceptin for 18 sessions. After 12 my muga scan dropped to 46%. I was given a break and put on medication to help the pumping of my heart and by the next muga reading, roughly a couple of months, it showed 51% and I was able to finish 18 treatments. I’ve been carrying on with the medication until my next onc appointment, which will then be 6 months, by which time onc. hopes I won’t need it. He said the problem should correct itself. I know we’re all different and I don’t have secondaries, but I hope this helps.
Positive thoughts to you Linz. Do let me know how you go. Ami xx
I have posted this on behalf of new user Sue
Hiya - first post lady here - just want to put everyone at ease about the Herceptin - I’ve just had Herceptin No.56 - I have the attitude that if there are any side effects its for my benefit.
Not that I have any/many - my hair is thinner yes, but there are a lot of ladies out there who would like my hair - I’ve put on weight, yes, OK 3st to be exact - (but that’s probably my comfort eating rather than the Herceptin) - so what - I’m here, my Consultant is happy so God Bless Herceptin.
I’m 8yrs down the line now - my cancer came back after 5yrs so I’ve had 2 lots (22 sessions) of chemo and I was just so lucky with that, only sick once otherwise I sailed through - I may have to have the Herceptin forever now and at £3,000 a shot if they’re willing to give it to me I’ll take it!
Posted on behalf of new user Sue
Hiya, I had my ECG last week and my result was 55% - I didnt know what the limit was to have the Herceptin delayed until things righted themselves (I’ve had 56 lots of Herceptin) - I must be one lucky lady.
Sueeeeee
Posted on behalf of new user Sue
As a matter of interest, just what is a Mugga scan??? I know I’ve had the ECG is it one and the same???
Hi Sam
I was told the cut off point was 50%. if it drops below that you have to stop Herceptin. A m.u.g.a. scan is a multi gated heart scan. Yes, ECG leads are attached to your chest. It’s also called isotope heart scan. A cannula is given for a radioactive injection then lots of pictures are taken for about 20 mins of your heart. You have to avoid chocolate for 24hrs!!! I asked if this low percentage is common and was told that it affects about 1 in 10 people. Since you are on number 56 I think you should definitely rejoice!! And yes we are certainly lucky to be offered Herceptin viewing the cost. I have told myself this with all the treatment I have had. There’s no way I could have afforded it myself, it’s all for my benefit!! Sounds like you’ve had a long road. I wish you all the very best for your future.
Warm wishes, Ami xx
Hi to Sue and welcome to the site. I think myself and one other member posted some time ago about reaching our 100th herceptin - I think I am now up to about 136! My muga scan reading (LVEF) has been a bit up and down from a high of 76 to a low of 42% but as I had no symptoms at all my onc allowed me to continue. I think the NICE recommendations are that you must have an LVEF before starting of 55%. During treatment if the LVEF falls more than 10 points or below 50% then herceptin should be discontinued.
Linz I think the oncs like you to stop for a few weeks then they check the LVEF again and if it has recovered you can start up again on herceptin. Serious problems are usually referred to a cardiologist. I hope your next one is ok - when mine did fall to 42% the next one was my all time high at 76%!!! my average though seems to be around 56%.
Dawn
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Thanks every one I’m going to ring BCN on Monday see if they can tell me anything How long did they take you off it Dawn and did they put you on anything else to stop spread in the meantime or should it not make much difference thanks Lindsay xx
Hi again linzs,
I persuaded my onc to let me continue because I had no symptoms. Over the years I had a lot of different chemos and back then there were no more options so I told him I would rather die of congestive heart failure than cancer LOL! I think that when you have quite a few herceptin treatments it does hang about in the body for quite some time. If you don’t any symptoms to indicate heart problems - like shortness of breath or swollen ankles see if you can persuade your onc to repeat the scan quite soon - sometimes it can just be a poor reading I think.
I am also on a very low dose of ACE inhibitors which I think help to protect the heart. Maybe worth asking your onc what he thinks of that? I don’t think we should worry too much about a short break - it really used to panic me though - but I think it had more to do with the fear of being told I couldn’t go back on it. It’s really why I hate having the MUGA scans.
Dawn
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Dawn
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hi i have been havig herceptin since last dec, i have three left to go finishing on the 3rd of jan, but now its been stopped because its affecting my heart got so see my oncologist on the 28th nov.
Thanks everyone for your comments.Just thought I would update you all had a phone call today to say treatment will start again on Monday which I am very relieved about still don;t know anything till i see consultant on the 30th November or until I can speak to the Chemo nurse on Monday Take Care and Thankyou Lindsay xx