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Herceptin Trial

10 REPLIES 10
BrainyBlonde
Member

Re: Herceptin Trial

Hi all,

Ceebee - I had a similar diagnosis to you in July (Grade 3 5cm tumours) but I'm not HER2 positive, so no Herceptin for me. However, I had chemo first and am having a mastectomy on 16th Dec followed by rads in January. However, they told me that I couldn't have reconstruction at the same time if I was getting rads so don't know if you will be able to have this. I'm not exactly looking forward to the surgery but want rid of the nasty critters, which have shrunk considerably, as soon as possible before they have a chance to regroup. best wishes BBB (it currently should stand for Bald But Brainy but, by the look of my regrowth of hair which is just starting to sprout again, Blonde will not be appropriate for me either and I may have to change my name to Cruella da Ville.)

f_in_limbo
Member

Re: Herceptin Trial

I am due to start 3 weeks of Rads and Herceptin in January, last FEC 15th dec. I have agreed to be on the trial so will let you know whether I am a 6 or 12 month person.
I thought very hard about it but decided that if someone didn't do it there would be no research, can always change my mind and come off it if I get spooked..
I had HER2 but no node involvement and a 17mm tumour which as far as they know was all removed.
I did not want to have to make choices I just wanted the whole thing to go away but have lifted my head from the bucket of sand and been decisive (for once).
Love to all
Fi XXX

CeeBee
Member

Re: Herceptin Trial

I am half way through chemo, I have had 4 FEC and next week start Taxotere also 4 treatments. I have decided to do the Herceptin trial on the basis that 6 months might be as effective as 12, according to the Finnish trial.I start Herceptin in Dec. I was diagnosed with Grade3 BC, I'm told they do not talk stages at my clinic, no nodes, large tumor 5cm and HER2 Positive. My surgery will happen after chemo has finished followed by radiotherapy. I have been told I will have a mastectomy, possibly with reconstruction at the same time, I'm not sure about surgery at all and dread it more than the chemo and Herceptin.

Anyone with the same diagnosis as me?

Good luck to all.

CeeBee

jaynek
Member

Re: Herceptin Trial

I am currently on Herceptin following WLE, FEC-T and rads. I was asked to join a trial of only 3 Herceptins. I politely declined as I felt this was just too small a number as opposed to the 6. I have been trying to source research data on the benefit of Herceptin for primary BC over a 5 yr period. Any one any suggestions where I might find it?

With regards the 6 as opposed to 12, I know that there was a relatively small study done which showed similar longer term good figures of survival. However, not good enough figures to base a total change to only 6 treatments for all. This will be why this study will be very important.

Good luck with whatever you choose. J.

Midge
Member

Re: Herceptin Trial

its very individual. i had node involvement, had chemo after surgery so no way of knowing that it had worked, so opted for the full 18. i think it has taken then so long to recruit for this trial it will take a long time to know the results completely.

good luck with your decision.

debx

Nottsgal
Member

Re: Herceptin Trial

all the women in the Finland trial had had TAX. I'd only had FEC, so I said no to the trial

Minimunchkins
Member

Re: Herceptin Trial

Thanks Emma,

I'm about to have my 2nd infusion (next Tuesday) but have until the 5th dose before I have to decide which way to go. As you say, I can opt in, potentially be randomized to the 6 months but can change my mind at any time & revert to the 12 months.
I'm with you on the pro's & cons of both and will do some more reading.

Thanks again - Chris

cushkin
Member

Re: Herceptin Trial

Hi there Chris I have just started on this trial. When first asked to take part I took a long time to think about it and read all the info they gave me to make sure i totally understood the purpose of the trial. In the end i decided to go head with it, they 'randomised' me on the computer and it came out with the 6 months of treatment. Before she told me the result she said was there one that you were really hoping for? I said that both options has it's benefits and drawbacks bit that I'd be happy to take whatever it came out with.

I have a sister who is 28, I am 31 and I thought to myself when i decided to go on the trial that if I could do something that could potentially help my sister who is obviously at an increased risk now of BC I would be willing to do that. And for so many other people who could benefit in the long run from the results of the rial. Every treatment I have had has had to start with a trial other wise the doctors wouldn't know how thing work.

And the good thing is I will be having my last treatment on the 1st of Dec, so will be well and truly done by Xmas 🙂

But at the end of the day it's about personal choice and no-one can decide for you, just make sure your well read and informed about it and don't feel under any pressure by the doctors to say yes, and you always have the option to pull out at any time during the trial.

I hope this has helped, even just to get a perspective of someone on the trial?

Emma x

Minimunchkins
Member

Re: Herceptin Trial

Thanks Sandytoes - anyone else please?

Sandytoes
Member

Re: Herceptin Trial

Hi chris. I was offered this, but declined as would rather end up being over rather than undertreated, but all trials have to be tested by someone! Good luck with your decision. X

Minimunchkins
Member

Herceptin Trial

I've been asked if I wanted to join the ongoing trial for Herceptin, I know it's not like the Import Trial I did with Radio & that the only difference will be I'll have it for 6 months instead of 12.

I was wondering if anyone has done this (as it started in 2007) or perhaps currently plans to just have the shorter version. If so, I'd appreciate your thoughts/reasons for going down this route.

The trials nurse explained that the normal treatment used to be 24 months but it was reduced to 12 months following the findings of previous trials. Also, current research in Finland seems to be showing that the 12 months could actually be over-treatment.

Advice and opinions would be appreciated please.

Thanks - Chris