I’ve been on herceptin since July 2006 and should be on it indefinitely, but yesterday was told that it’s been stopped due to heart damage. My heart function was originally 64 but has dropped by 10% according to last month’s echo, so I’m being sent for a MUGA scan and then referred to a cardiologist.
Does anyone know what they do about heart damage?
Thanks for any info,
Lynn
Hi Lynn,
Like you I should be on herceptin indefinitely. I have been on it for 4 years now and my original LVEF was 56. It sounds like your onc is sticking strictly to the NICE guidelines. It will be interesting to see what reading the MUGA scan gives. My hospital only does MUGAs and I believe they are more accurate. My oncologists attitude was that if I had no other symptoms he would allow me to continue, within reason. At that time my reading fell to 42% but I was fine so he agreed to let me go on and the next scan rose to 68%! Usually they stop treatment for up to 3 months and then check again. When I knew I was at risk of having the drug stopped I went into research mode on the internet and found there were differing points of view as to the necessity to stop when a patient was without other symptoms (i.e. breathlessness and swollen ankles). So i argued my case and said as there were no other drugs available (I had been thru them all) I would prefer to die from congestive heart failure than cancer. He took my point and said O.K. I also take a very low dose of ramipril which I have heard helps protect the heart so I would discuss this with the cardiologist as well.
Dawnhc
Thanks so much Dawn.
I really don’t want to come off herceptin, so I will argue for me having it as soon as I get someone to argue with!
They are sending me to to a different hospital for the MUGA, which is presumably why they do ultra sounds instead.
I don’t have any other symptoms, and am still walking & swimming enthusiastically as before. I’ll ask about ramipril.
Lynn