I have been to oncology for a check up today. I was thinking it would be a routine appointment as for the last 3 or 4 weeks I have felt really well. The fatigue is easing, the hot flushes are dying down and my asthma (which has been worse with each herceptin) has been good. So I was a bit shocked to be told that they were stopping my herceptin as my last Echo-gram showed an affect on my heart. Apparantly my ejection fraction has reduced from 63% to 40% (normal level is 55 - 60%).
I now have to take more tablets to sort my heart out and I won’t be allowed to complete the course of herceptin. I have had 9 so far. I then have to have a “fancy” echogram in about a month
I’m sure you’ll get lots of replies saying that this has happened. It certainly has with me! Usually stopping for a few weeks gives it time to recover, and treatment can then be resumed as normal.
I haven’t experienced this personally, but have heard it is not uncommon, I do know somebody who was taken off herceptin for a while due to reduced heart function, I’m sure hers was around 40% too. She was given other medication (sorry exactly what, escapes me, it was 3 years ago!) to boost it back up and it did, slowly but she got there in the end. She then had the choice of leaving things there or going back on the herceptin. She decided not to, as she’d already had a few by this point.
She is fine now, no recurrance and no heart problems.
I am on herceptin, I have just had number 13. The heart problems have not happened to me but I have met other ladies that it has. They were given meds to help their heart recover then given the choice to re start herceptin or not. As you have had 9 doses I would not worry too much if you are unable to restart. The latest research seem to say that 9 is as good as 18. My son is a research scientist and tried to get me to take part in the research to do with 9 versus 18 herceptin. I was not brave enough to do it. But he assures me that if it hasn’t worked after 9 it is very unlikely to work after 18, so 9 would most probably be ok.
Have only just seen your post as I don’t visit this site very often now.
I experienced this problem in 2009 from December 2008 I was getting increasingly short of breath, I told my oncologist, the staff giving me the herceptin and my own GP but as my scans November 2008 and February 2009 showed no problems I was told it was not due to herceptin. By the time my scan was done in May 2009 my heart function was down to 31% and I really felt ill, after the technician had consulted with the cardiologist I was kept in hospital for a week given furosomide to get rid of the fluid I had retained due to my heart not functioning correctly and gradually started to feel a lot better.
For me this could not have happened at a worse time as we were moving house the next day but we laugh about that now my family saying what extremes I went to to get out of packing boxes.
I had 12 of the 18 doses and both myself and my oncologist decided that for me enough was enough although I did tell him he must listen to the patient as obviously sometimes damage is starting before being shown on the scan. My heart has recovered and I now feel fine.
Thanks Pat, that is very reassuring.
I recently ended up on the cardiology ward for a night as I was having chest pains and was very breathless. The doctors changed the heart tablet I had been given as it was causing me to cough a lot, which in turn was agravating the cartledge around my sternum and ribs, causing the chest pain (or at least that is what they thought it was)
I have gradually got more breathless - walking up stairs, pushing a trolley round the supermarket etc
After my last oncology appointment I got quite upset as I felt that the onc didn’t believe that I was breathless, as I hadn’t been a month before. I started to think it was all my head.
I went to see my gp the next to chat through what was going on, and he reassured me that I wasn’t going mad. He says with all the treatment and drugs I have had, the reduced heart function, asthma, other stress in my life I am bound to be feeling like I am.
I have an appointment with cardiology on 12th January so hopefully they will be able to give me some idea of what is going on and how long it will take to recover.
So glad you picked up my reply. It’s all very well thinking the oncologist didn’t believe you, and as I said I also wasn’t taken seriously, but we know our own bodies and know when something is wrong.
I’m glad you got the reassurance you needed from your GP and please let us know how you have got on after your appointment with the cardiologist.
I had a really positive appointment with cardiology today. The damage to my heart may have been caused by either chemo, tamoxifen or, most likely, herceptin. I already seems to be improving with the drugs I am on but to make it better quicker I have had the tablet I am taking now doubled and also put on beta-blockers. I have to go back in 6 months.
He thinks the breathlessness is more likely to be as a result of all the treatment, my asthma and just coping with everything. I have been on antibiotics for a week as I seemed to have developed a chest infection and finally I am starting to feel a little better, physically. Not so sure about mentaly yet, but off to see the GP tomorrow (will try not to cry through that aappointment)
Caroline
Hi Caroline
Glad you had some good news today from cardiology, things seem to be improving for you.
Don’t worry about the tears I am three years down the line and I still have days where I can’t stop crying and I don’t even know why, but the good days now outnumber the bad.
Keep positive you’ll get there.
Pat