please can i have your thoughts as i cant make up my mind…
i have just finished chemo and going to start herceptin. i saw onc fri and was asked if i would consider trial. the trial is for 6 months instead of 12… gt for me as i hate hospitals but i cant make my mind up on something as important as tihs and would like your expert opinions. many thanks
julie
Hi Julie
I’m about to start herceptin too - I’m very unlikely to make it beyond the first 2 -3 though due to low muga scan. I’ve seen details of this trial druglib.com/trial/01/NCT00381901.html and would say it is a very personal decision to make.
Who knows at the moment whether 6 months is as good as 12 months (hence the trial lol) - though I know that they consider the other trial of 9 wks of herceptin to give comparative benefits to 1 year. My onc was discussing this one with me, when I was so disappointed that I wouldn’ t get anything like a year of herceptin.
Good luck with whatever decision you make
Margaret x
It’s not an easy one to decide. I recently had a doubtful heart scan after my 9th herceptin (half way through) and was sent for a re-scan to check whether I could continue or not. The re-scan was also a bit dodgy, but the doctor decided I should continue with herceptin. However, if it had been decided to stop I would have been OK about it. I am finding this year of herceptin hard going. Not down to any side effects - I just feel that this whole treatment process has been going on for too long and I have had enough. I want to be able to try to move on and get on with the rest of my life, but can’t while I’m still turning up to the hospital every three weeks.
thanks margret for the info. when are you starting herceptin… i do hope you can make it longer but your heart is important. in finland apparetnly they only have it for 9 weeks. but as a small community they cant tell if effective or not compared to our large numbers. anything is better tha nothing. i stopped chemo after 4 as couldnt cope but at least i gave it my besrt.
road runner. i feel exactly the same as you. i stopped chemo after 4 saw onc fri and i will start tamoxifen on 1st july, have a heart scan, then see onc on 11th yo discuss results and herceptin. do you know i have felt gt this weekend the thought of not going to hospital for a few weeks. i actually feel back to normal and hope this little break will do me good. then i will be in right frame of mind to start again. take care.
Hi Julie
I’m due to start early July - have so far had 4 x chemo, 20 rads, and 3 x chemo - last 2 chemo’s went wrong, on very last one, chemo leaked into my tissue so veins are really sore, time before it burnt my hand ! so they’ve asked me wait a few weeks to give my veins time to recover lol.
It was the finland trial, FINHER i think, that my onc was discussing - she did say it was small numbers involved, but results were encouraging - or maybe she was just trying to make me feel better lol.
Did you ever sort out geting the herceptin at home? I think it was you who asked about that on another thread. My at home ones don’t start till the 3rd one - so I may not get there lol. I’m still waiting for Onc to tell me what my cut off point is going to be for heart scan - all I know so far is that it will be around mid-forties - as I’m only starting out at 51.
My %age prognosis of recurrence is quite high, something like 79% - I love the way my onc can sit there and tell me that the benefits of treatment far outweigh the risk of heart failure! - bet she wouldn’t be so blase if it were her heart! lol
Margaret
I am having herceptin for a year, but going to miss one due to hol,although I think it will be added at end to make 18,my onc not worried as she said they probably give too much anyway,so that’s maybe why they are trialling 6 months
Mary
x
I’m on herceptin ‘indefinitely’ but that’s fine because there are no side effects that I’ve noticed, and I’m sure that they wouldn’t be giving me such expensive medication if it wasn’t worth it.
Chances are that they will review your situation after 6 months and decide whether or not to continue.
Love, Lynn
Hi
I am about 9 treatments into my Herceptin and while it was given initially with my chemo it was fine but I found that after the surgery I wanted to be shot of the hospital (nothing to do with the nurses) as I was given the all clear. To then be going back to the same unit that gave me the chemo felt like a backward step.
I opted to have the treatment at home and I have to say that it was the best decision ever. It is much more relaxing and there is no hanging around waiting for blood tests and then ordering the drugs up to the unit. The nurse arrives at a day and time convenient for me and then two and a half hours later we’re finished.
It is something worth exploring and discussing with your breast cancer nurses.
All the best
Caroline x
hi caroline.
i have been tryingto find outhow to have it at home. where abouts are you in the country and please give details if you dont mind how you get it at home thanks
julie
HI Everyone,
Im new around here and this is my first post. I noticed that you mentioned the Finnish Herceptin study which suggests that 9 weeks of herceptin may suffice. Im having it for 12 weeks and then onto Tykerb which Im delighted about. I know that Dr Denis Slamon who developed Herceptin has said that treating with herceptin for the duration of one year was basically a random decision