Hi has anyone else started treatment for secondary then been told their heart isn’t working as it should so had to stop Ptuzimab and Herceptin?
It’s made me slightly anxious and frustrated that this wasn’t addressed BEFORE my first round of chemo + Ptuzimab + Hereceptin.
I know these three drugs combined are the gold standard and I’ve had to take a chemo reduction of 20% because I was neutrapenic sepsis first time round…
Sometimes feel it’s one step forward two steps back!
I’m glad they have found the issue so it can be resolved so I can continue on the x2 hormone drugs once my heart is sorted. It’s just I know it’s most effective alongside the chemo.
Has anyone else had a similar experience??
I’ve also requested a head scan after getting some headaches with auras (not sure if they are stress related as I’ve not had them before or frequently) but more to put my Monday ease. Xxx
Hi Jadicakes
Unfortunately I am the ‘Queen of heart’ issues! However that means I know a lot about it.
after FEC chemo 8 years ago I developed atrial fibrillation albeit not all the time (palpitations is the non medical word most people use) Anyway cutting a long story short they were getting worse at the same time my SBC showed that it had spread from my bones to my liver 3 years ago. I had an echo done at the readings were very low which meant I couldn’t have Herceptin. At the time I had just started Capecitabine so that kept me stable for a long time and gave me time to sort my heart out. Eventually, as I had no luck and certainly no collaboration with my local oncology and cardiology teams, I was referred to a specialist in London and am still going there for regular checks. This is a cardio-oncology unit set up in The Brompton hospital in London, it is NHS not private. They have been set up because of the very problem you, and many others, are having as more and more people survive cancer and find the treatments can cause long term heart problems.
Another lady who has sadly left us now had similar problems but hers were dealt with at a local level by a heart failure nurse - most cardiology departments will have one. I suggest you get an urgent referral to your local hospital or ask for a referral to the London clinic if you are within travelling distance. I say urgent as it can take a while for a local referral to end up with an appointment in my experience. If you check out the Pertuzamab thread there is also another lady who has recently been referred to this clinic as well. (Edited this reply to say that the thread is in the Living with SBC section not this Treatment section. Also there is another thread in the Moving forward after Breast Cancer section on the front of the main forum with several ladies who have primary BC posting about the same thing. However, for them, they don’t need the same level of continuing treatment as us SBC ladies do.)
Hope this helps and please ask anything else - I could write a book on what I know and what medications etc there are!
Nicky x
Thank you for your reply Nicky! Yes my SBC nurse is chasing up ASAP with our cardiologist because they are really keen to get me back onto the herceptin and Ptuzimab ASAP. Apparently they aren’t hugely concerned as my hearts only gone down by 7% which isn’t massive-but they are confident they can get the function back up again after I’m put on the right meds. I live in Nottingham so not sure how viable getting to London would be? My palpitations have settled again a big now and they did say could be stress related (thinking more about it I do get them when I’m stressed). They originally said 6 weeks is urgent!! But I’ve pushed and as I say my BC nurse came back today with news she’s pushing to get me seen ASAP. I’m also booked in for a CT head scan after I’ve had a few migraines (nervous about that). Would like to get sorted ASAP so treatment can get back on track.
Thanks Nicky. I’m just hoping it’s a bit more plain sailing from here on in! Xxx
Hi Nicky thanks for that. I’ll try keep you updated.
How often were you experiencing the palpitations? I had to go into hospital yesterday cus they were quite bad first thing in the morning (they said could be sign of infection but all was fine!) they seem to be worse when I move around or have to stand for long periods of time. It also causes me to feel slightly breathless. Did you find this? Also after I’ve eaten makes them slightly worse. I’ve been doing breathing exercises and trying to remain calm. It’s reassuring knowing that the meds will hopefully help with them cus they are by far the worst side effect for me at the moment! Xxx
Hi Nicky, been to see cardiologist today who didn’t seem that worried about everything. He’s put me on beta blockers and another tablet to help lower the strain on my heart in the hope this will bring the function back up to normal. I’m hoping it does! Gotta wait 3 months for another scan to see if they are working. Apparently they can make you a bit light headed!! Here goes nothing. Xxx