Anyone had Herceptin causing heart damage ?

Hi Lottie8

I haven't got an answer for you as not started Herceptin yet but answering will keep you at top for reply . I do though have a questions 

I am assuming heart scan done before treatment started , how often did your team do a scan whilst you were getting treatment ?

So really when did they know your results were low ? 

Hope you get some answers

Margaret x

Thank you Margaret .

Yes I had an Echo before I started and then after every third Herceptin. At about No12 my heart started ‘jumping’ but everyone said it

was fine .....although it didn’t feel fine to me. I was stopped after No 14.

I was borderline before they started but I was upset when they said they were unsure whether they should let me have Herceptin so I was allowed to have it while also having Ramipril. I’m glad I started but wish I’d insisted on stopping earlier. Good team though.

Hope that makes sense ? I'm sure You will be fine. I have my age against me.......All best wishes and good luck Liz

Hi Lottie8

With regards age We pretty close I'm 70 in two weeks . Glad you have a good team it helps when you trust them . 

I'm already on Ramipril have been for 4yr after diagnosis of type 2 diabetes . If it helps I was told if there was any damage it was usually reversible .

margaret x

Hello Lottie8

I had to stop Herceptin after 15 doses when I was diagnosed with Herceptin induced cardiomyopathy. I had been having an echo every 3 months. I was prescribed Ramipril and Bisoprolol and in time my heart repaired itself. It took about a year to be given the all clear. I am still on a reduced maintenance dose of both drugs to protect my heart. I never felt any symptoms at anytime - the diagnosis came as a shock and I was worried about stopping the Herceptin and the possibility of the cancer returning. I have had 2 operations since - unconnected to breast cancer - and I have had problems with low blood pressure in hospital while recovering but no other concerns.

Wishing you all the best.

Hi Lottie8

Herceptin can and does affect the heart but like everything else it does vary greatly from one person to another. It can weaken the heart muscles affecting the amount of blood being pumped around.

Prior to Herceptin you should be given an Muga Scan or ECG (link) to check your LVEF figure. That is Lower Ventricle Ejection Factor, then at 3 monthly intervals during herceptin treatment.

This is the % of blood pumped from one chamber to another when your heart beats. The normal range is between 55% and 70% so not 100 as you would assume.

J's was 67% on her first Muga Scan and after 6 Herceptin it dropped to 51%  Onco gave her a two week break to allow for the heart muscles to recover and the figure came back up to 56% - she continued with her Herceptin and had no more lowering issues after that.

It is normal for it to drop slightly but around 50% - 52% seems to be the cut off point for pausing / stopping. If after one or two weeks rest it hasn't come back by much they can give you meds to strengthen the heart muscles.

For some this can take a while longer and Herceptin used to be given every 3 weeks for only one year = 18 sessions. If you needed a longer break they may stop you after the 12 months is up as NICE doesn't fund it for any longer unless there are other circumstances involved like secondaries etc.

G n' J

Interesting...I'm down for 17 doses of Herceptin given 3 weekly....I've had 2 doses so far. I had a MUGA scan after 1st FEC, result 70% then another scan before starting Herceptin (6 weeks between scans) and result was down to 65%. I'm guessing I'll get another one a couple of weeks after 3rd dose next week but forgot to ask. I'm already on Ramipril for years for hypertension and Bisoprolol for paroxysmal AF (fast heart rate and palpitations), so perhaps I'm getting some kind of 'protection' from these....will be interesting to see results as things progress.

Thank you everyone.

I was put on Ramipril early on and it got me to no.14. Now I also take Biso. So am being treated. Ramipril made me cough like an old sheep and Biso.is making me feel like a dead sheep but I dare say I will come back to life sooner or later. I was a bit alarmed that because I have no lymph nodes under either arm  ......1st mastectomy in 2001 and second in 2017......if I need a pacemaker at any time I can’t have one ! 

I have almost forgotten the Cancer side of things but still feel fortunate to have had Herceptin.......even though it appears to have ‘broken my heart !  

MollyMabel.....You and I seem to travelled the same tracks but ahead of me. I am only 6 months without Herceptin and it is good to know you got much better a year on. I am having a scar revision sometime soon so I will be aware of the possibility of low blood pressure. I am hoping it’s a fairly minor op. I had a nasty infection post surgery and my surgeon thought it would be good to do it. The scar looks pretty scary. In fact a medical student looked at it then announced that he had never seen anything like it ! Then blushed.....I think he was only about fourteen poor boy.

Lottie8

Well this time last year I was given the advice to stop Herceptin

I had previously had pericarditis - inflammation of the pericardium surrounding the heart - I’m sad to say that though I stopped my issues with pericarditis have not. I sit here / slouched here tonight with this remaining an issue. I get breathless and have a nagging painful chest

My onco says no way Herceptin and my cardiologist says well what else has happened ??? They don’t agree 

 I had ‘enough ‘ herceptin they say to be of use

But instead I have this hugely irritating and persistent issue

I recently read an article on BBC about CCM - here we go - 

cancer induced cardio myopathy 

now im not saying this to scare but for you to question those in the know about could it be that for you

It is a small chance 1:1000 but

Whren I next see my cardiologist this is a question I will throw at him

Don't accept keep asking

Sustaining hugs

Leolady56