Herceptin trial

Public Archive
1

Hiya all,
after finishing 6 months of chemo then surgery I am now due to start radiotherapy and Herceptin.
My Onc has told me about a herceptin trial as normally you get herceptin for 1 year but this trial is to see if women do just as well having herceptin for 6 months.

I am wondering if cost has anything to do with it??
I don’t want to put myself at any more risk than I am already.

I am due to meet a lady to talk about the trial tomorrow but I am wondering if she will be totally honest with me.

I do know a girl who had herceptin for 1 year and has now got some heart damage due to herceptin.

Any ideas thanks Caron xx

2

Hi Caron! Wouldn’t they have originally tested the results after 6 months before giving it to people for 12 months?

After all, they can’t possibly have suddenly decided to say to patients “This is Herceptin, and we just thought we’d try giving it to patients for 12 months”.

Nah … just my opinion - I know - but I was offered to go on a trial, and - purely from a selfish reason - I thought ‘better the devil you know’.

As my old mum used to say - “When in doubt - don’t”!

xJacqx

3

thanks Jack just what I am thinking too !!
So must be the cost then??
I don’t have to go on it do I?
The more I think about it the less enticing it seems.
love Caronx

4

Hi Caron,

There has been a trial on only using Herceptin for 6 months. I think it was in Finland. I understand that there are no tests as yet to see if Herceptin is actually working, they are doing tests on this in Edinburgh at the moment. Heart problems seem to be happening when Herceptin has been used with other drugs and the antibiotic athracycline. On it’s own it rarely causes problems, according to my Oncologist and info on the net.

Have a good long talk with whoever you are seeing before you decide, ask questions and request answers.

E

5

keep em coming cos i want to be armed with info !
love ur moggy btw!! caronxx

6

Hi Caron,

My understanding is that there is no basis for giving herceptin for 12 months. someone basically pulled a number out of a hat at the start because they had to come up with a timescale. And it can cause heart problems, so if it could be given for a shorter period with the same results, that would be good all round. if you search the site there have been threads in the past about the various herceptin trials that are ongoing.

7

thanks roadrunner will do ! Caron xx