Hi all,
Haven’t been here much recently. DX in Jan/Feb 2011 with grade 3 HER2+, chemo, lumpectomy, radiotherapy and herceptin.
Herceptin hated me. Within days of taking it, major nosebleeds bad enough that I was in A&E with them. Sensory loss in my fingertips. Aching. Pondered it all with my excellent Oncologist, who hadn’t seen anyone react quite like this. Blood pressure went up…and up…and up some more, despite ever increasing amounts of bp medication. Finally, this last couple of weeks, I was having heart misfiring (atrial fibrillation). No loss of heart pumping power, though. She took me off the herceptin with the well-aimed phrase, “there’s no point in saving your life with the other treatment and killing you with the herceptin”.
Most people will get along fine with it. But I thought it’s worth putting this on here for any others who get similar and wonder if anyone else has had the same.
At least I managed 6 out of 18 doses. We’ll have to wait and see what future research brings re whether that’s enough. It’ll have to be.
Ann x
I believe that there is a Finnish clinical trial which showed that 6 months herceptin had the same outcome as 18 months. I was lucky I had no problems with herceptin and received 18 doses. You might wish to search for this study. I found it when browsing but my onc also has referred to it
Sorry if I am posting this for the second time. Think I hit return rather than submit with the first attempt.
I had 18 doses of herceptin but I know there was a Finnish clinical study which claimed that 6 doses as the same efficacy as 18. I found this study on the Internet and my Onc also confirmed that he was aware of it
This is really interesting. I have just (yesterday) had my 14th Herceptin and am off work today as I feel really rough - light headed, dizzy and achey everywhere. What interested me though was Ann saying about nosebleeds and high blood pressure. I have had loads of nosebleeds since being on Herceptin (not severe ones though, just lots of them). I also had my bloof pressure measured at hospital once and they told me to see my GP as it was very high. Luckily my GP recommended getting a home BP monitor and asked me to go back after taking a reading every day. I did and most were normal - except the day after Herceptin.
There is a UK version of the Finnish trial. It’s called Persephone. I was asked to take part but declined because in the Finnish trial, the women had had TAX rather than FEC, which is what I had.
i was offered to take part in persephone too, i have to say that i also declined, purely because i thought if i had recurrance i would blame myself for having taken a risk, however it may become standard treatment a few years down the line
Hi Ann! Nice to see you again, horrid about the herceptin, fascinating that people may be able to have shorter courses of it. Hurray for oncologists who know when to stop.
Hope you feel you are improving now you are off it
Lavender
xx
Hi Ann!
Herceptin doesn’t seem to like me much either! I have had 6 out of 18 cycles of it and my cancer nurse thinks because I have had such a rough time while I’ve been on it that I might have to stop! I am feeling so rough, I’ve had pain in my ribs, terrible breathlessness and I feel like an old woman. At first they thought it was Letrozole because I started to take that at around the same time. I now take Anastrozole instead alongside Herceptin. My joints aren’t as painful but I feel so off colour. I hardly have any energy and I just hobble about in pain. I am going for bone scans , a bone densitometry scan and chest x- ray. I’m hoping there’s nothing sinister there! My heart is fine that’s been checked. I’m dreading having to stop treatment because I have so much riding on it! I think I’ll be devastated. I would seriously like to do the full course. I feel like a real whimp!
Aramis x
I am taking part in a world-wide study SOLD which a Finnish drug company is part-funding. In both groups women receive 3 Herceptin with Tax, then 3 FEC. After that the women in group B, of which I am one, have 14 more Herceptin and the others have none.
My onc told me that smaller US studies have shown that there is a possibility that a shorter course of Herceptin, if given with chemo, is just as effective as the longer course but without the long-term risks that may be associated with Herceptin.
Hope this puts your mind at rest if you have to have a shorter course.
Thanks all. Interesting that a few people here and elsewhere have had problems with muscles and stiffness etc - I’m really struggling with my joints since having the chemotherapy and herceptin. Difficult getting out of low chairs etc, and yes, getting down stairs in the mornings can be a real challenge. Hopefully much of this will stop.
Ann x