Has anyone had Herceptin stopped and restarted?

Due to a low heart function scan a month ago I had my Herceptin stopped. This worries me as I want to throw everything at it - but obviously your heart is pretty important too!! 5 weeks on and my heart is back to the level it was prior to me starting Herceptin. The cardiologist was very pleased with that but advised me against finishing the rest of my treatment. I was hoping that if my heart recovered that I could get back on Herceptin immediately - however, he said he’s never had a patient who has been back on Herceptin after having had treatment stopped and that he wouldn’t recommend it. However, I have met one lady who stopped due to a low heart function and restarted again - and was just wondering if anyone else had done this? Ie is it common or rare to start Herceptin again after it’s been stopped?

Thank you.

Hi Sandytoes
I was also taken off Herceptin due to low heart function. I had 3 left to complete at the time, but after a break of a few weeks the reading had come back up just enough for me to complete the course. I had a further scan some time after that but it hadn’t returned to the reading before Herceptin. I would have thought, if as you say, your heart has recovered to its original level, Herceptin would have been given again. I can’t understand why not. Can you question it further in order to understand?
Ami xx

Hi

I hope others come on to answer. I am pretty sure flora who used to post had hers stopped and restarted. How many have you got left? That may have some impact on the decision. Sorry you have this extra worry. My ef dropped from 65 to 60 and it has not returned to 65 since finishing treatment in dec, but I have been told not to worry. It’s easy for them to say.

Dx

Hi Sandytoes
I had my Herceptin stopped and re-started so ended up having herception over a year and a half instead of a year - seems there are a few of us. Hope you manage to persuade your medical team to re-start it for you however if you’ve managed to get through quite a few doses of it, it may be enough as in some countries they don’t get a year of herceptin, they get far less.
Good luck
Ruby

When I started my Herceptin I was still having chemo and my heart function dropped from 73 to 50 after 3 sessions. I saw a cardiologist in Harley Street who prescribed 8mg daily of Candasartan. After a break of 6 weeks I restarted and continued my treatment. My heart function stayed in the 70s for the remainder until my last session last week when it had gone down again to 60, this time my oncologist decided that as I had had 17 she was going to stop it there as the difference between 17 and 18 was negligible. I am seeing the cardiologist again tomorrow but have been assured that everything is fine.

I would have been concerned at not being able to complete most of the treatment, I didn’t mind missing out on one, but glad I had the rest.

I think you need to speak to your cardiologist again.

If I can help further let me know.

I had 18 herceptin between 2008 and 2099. I was recenlty diagnosed with secondary and resumed this treatment. My onc told me that I will be on it for as long as my heart is ok and that it is effective. She also told me that if needed Herceptin would be stopped for a while for my heart to recover and restarted as soon as it is fit again.

There was a trial that my onc mentioned when I started, looking at the efficacy of 9 doses versus the more usual 18. They don’t continue these trials if there is significantly worse outcome of one arm or another, so if you’ve done a good 6 months, then you would have stopped anyway if you’d been on that trial. I hope that helps to put your mind at ease, but I’d have a chat with your onc as well, and see what he/she says as well as taking into account what the cardiologist says.

My EF was in the 50s after chemo and has gone up a bit, but the nuclear meds people tell me that there’s a pretty large margin of error. Perhaps next time you need to be a bit more animated - keep wiggling your toes and ankles to keep your heart rate up. My machine kept beeping at me last time because I got so relaxed and my heart rate dropped to my lying-down-chilled-out-and-resting heart rate, which I wouldn’t be surprised also affects the EF. It’s most certainly NOT an exact science.

Oops.

Thanks everyone. Really helpful. Am going to see if I can get a second opinion with a cardiologist who has had a great deal of experience with Herceptin patients to understand the risks etc more.

I’ve had 8 treatments so far and am aware of the 6 month trial…and know they wouldn’t do the trial if they weren’t expecting the outcome to be good - but I would still much rather have the full year’s course if my heart can take it. I want everything thrown at this b*gger - especially as I had such a large lump and lymph node involvement.

Thanks so much.

SamLee - had an appointment with a HS cardiologist who’s given me some heart medicine so I can finish my course. Hurrah! Thanks for sharing your experience.

Sandytoes,

Glad to hear that you can now finish your course of treatment. I had an appointment with my cardiologist last week as I was at the end of treatment and because of the low reading on my final echo, and he said everything was fine. Apparently there is a margin of error depending on who does the echo and he said that is the main problem with Herceptin patients, getting consistency so that treatment is not stopped and started.

You should be fine now on the medication to finish the rest of your treatment. I was and the best bit is there are no side effects with it.

Sam

hello sandytoes my herceptin was stopped last nov which i had three to go, they starting giving me heart tablets which were perindopril two at night plus another one could metoprolol which is one a day, but because i have had another reccurrance plus mets to the lungs which i was dx a month ago i am back on chemo which is taol and back on herceptin second one next week, my muga was fine bur i will be having a muga every two months instead of every three, my onc said if i have problems again with the herceptin she will request the tykerb instead. i hope this helps.

hi yes,
mine was sropped after having 15 i could not finish the last three because of heart issues, the cardioligist put me on heart tablets but now i am back on herceptin had my second one yesterday, but having muga scans every two months instead of every 3 months.

i will be on it for life for as long as it works for lung mets dx five weeks ago.
lorraine

I have just finished my final (18th) treatment and had to have a break of around 2 months because my heart function wnet below 50. When it came back up to 55 they re-started the Herceptin and this time I stayed around the mid fifties. Been off it now for 6 weeks and just hoping that my nails and fragile skin will recover.

take care

jane

hi ladies,
my herceptin was stopped last nov the last three due to heart issues i was put on heart medication straight away beta blockers, but in between i got a few local reccurrances and jan this year it had spread to lungs, so now its stage iv, now i have been back on herceptin, since then i see cardiologist and have muga scans freqently every two months, and also my onc have requested for me tykerd just in case it happens again with the herceptin, i will know about the tykerb on the 26th of this month, but so far my heart is fine.
lorraine

Hi All,

I have had 9 of 17 (not 18) Herceptin and my onc nurse told me there is a + or - of 10 with the heart function test so mine having gone down (80, 79 to 74) was considered no change.

I am also on a world-wide trial (SOLD) in which some patients have only 3 Herceptin with Tax then FEC. The rest of us resume Herceptin after FEC.

Hope this puts your mind at rest and try not to worry too much - easier said than done!

Take care all, love, Liz, x