Herceptin stopped due to LVEF figures

Hi Sassy68

While I haven’t got an answer for you I noticed that you haven’t had any answers yet so I thought I’d reply to you to move you to the top of the discussion. Hopefully someone will be along shortly with an answer for you.

Best wishes

Daisy53

Hi Sassy68, this happened to me, my EF started at 69% and gradually dropped to 57%.  I had a break for a couple of months, and my oncologist referred me to cardiology.  This resulted in me getting put on beta blockers and blood pressure meds.  I wasn’t particularly happy about this as I’m someone who doesn’t like taking medication if I can help it, but it’s a fairly low dose and it seems to have done the trick as my EF is back to 64%.  I only have 3 Herceptin to go now thank goodness but if it had to be stopped early I wouldn’t be too concerned as there is new research out now indicating 9 doses is as good as 18 for some patients.  Look up the Persephone Trial.  Probably in 6 weeks your EF will pick up again and they can carry on with treatment.  I’m hoping I might be able to come off the heart meds eventually.  Good luck!

Thanks soooo much for your reply Ginny. You have no nodes how much better I feel about it all. I have 7 more to go but have had 11 so if so do have to stop I am hoping I will be ok. I was surprised to read you were put on beta blockers with and LVEF of 57% as that’s still in normal range. Am guessing it was because it had dropped from 69….. who knows!!! Wishing you all the very best with your last 3 and praying you can be rid of the extra meds…… we all deserve a break from all this!!!! Sending hugs xxx

I think it may have been because it had dropped by about 4% the last time so was dropping quite quickly and had dropped by 12% overall.  They stepped in before it dropped below normal.  Be prepared that if you do have to go on beta blockers they can make you very tired - which is not great when we’re all so tired from treatment anyway!  I’m very grateful for all my treatment but we are all left with side effects that we didn’t have before and I do find that frustrating.  Before I was diagnosed in February 2022 I felt the best I’ve ever felt - I can’t say that now!  Hope you get sorted, our bodies might have had a battering but we’re quite good at bouncing back.  Sending hugs back to you.xx

Thanks Ginny…… lovely to know I will feel more tired than I already am! The joy I really felt for you when you said you felt the best you ever had prior to diagnosis…… in a short space of time homuch that has changed . We can only keep trying to remain positive in the knowledge that a lot of the effects are reversible and we have got through the worst bit. Take care of yourself xx

Hello Sassy 

Some three years after diagnosis and after everything they could throw at it, I have the creaks and aches that many here share. But every morning when I wake up I think "I'm still here" and I want be. If the aches are the price of life, I will have them. Onwards and upwards.

All the best to all of life's voyagers here.

Wallydug

Hi Wallydug…… I couldn’t agree more. Just got to get used to the new me lol

Hi Sassy, How did you get on? I'm having the same predicament today. I've done 13 Herceptin and all the research I've done makes me think i'll probably stop due to cardiotoxicity. I wondered what you'd decided as our cases seem similar.

My LVEF dropped over 20% in 4 months. The Oncologist actually still signed off on the next Herceptin, because i was still on 50 LVEF. The significance of such a drop did not occur to him. I went ahead and had the H not knowing the extent of the issue. Then felt terrible. I demanded we take a break when I saw the Oncologists junior ( it's always the Junior when you actually need to see them!). She told me they're supposed to stop and take a break after an 8% drop. 

I was referred to Cardiology. Even though a recent MUGA has got me back on 55% the Cardiologist has put me on heart failure medication and ordered an Angiogram. It's the Cardiologists opinion that though ECHO/MUGA are the a tools Oncology prefer to show an issue, just because your LVEF improves doesn't necessarily mean the heart vessels etc have not been damaged. So now I'm the confusion of should I / Shouldn't I? I am sure that Oncology will just see 'improved score/ cardiac support' and say carry on.

I imagine by the time you read this, I'll have seen the Oncologist and possibly flipped a coin. The Junior i usually see appears to have zero opinion on anything, possibly because she's powerless. But the PERSEPHONE trial seems very interesting to me. It is hard work when we can't actually get answers for our questions from our oncology teams. They honestly seem very gung ho with anything that is not directly oncology.

Thanks for reading.

Hi Fiddlesticks…… Sorry you have found yourself in a similar predicament to I was in last autumn.

from reading your experience of cardiology it strikes me that arenas differ greatly. I went from 64% LVEF to 50% but the time I have my 11th Herceptin. Inco advised to stop and get rate up again. After 8 weeks my rate went up to 55%, no advice or medication offered and I was put back on the Herceptin which I have now happily completed.

looking back I do remember considering not taking any more Herceptin ( by reading Persephone trial) The trouble is of one starts googling you get a wave of different opinions and advice. I believe some trusts here are only offering 9 doses, but you will need to check that out.

I sincerely hope the heart meds won’t be needed for too long. Now I have completed the Herceptin I do feel I slightly better ( it’s only been a month) Have a heart scan in March so can let you know. Am back at the gym and trying every hard but my appetite has grown significantly!

good luck in whatever you choose to do. I continued out of fear I guess and usually do as I am told…… may not be the best approach. Take care, you are nearly there xxx

Hi all

i I realise this is quite an old post but I'm new to this group and hoped for a bit of advice and reassurance. I've completed my chemo and have just had my first round of 20 radiotherapy treatments for stage 4. My Phesgo has been stopped because my last cardiac ejection scan showed a drop to under 40%. I was so exhausted and felt rubbish that I was relieved to find that there was a cause for the way I was feeling. I read through the results of the Persephone trial but am a bit anxious to do anything to increase my risk ( I was originally told my cancer was stage 2 but told last week it was actually stage 4). I would like to know if there is anyone with similar experience and what their outcome was. Thank you