Today I was given info about trial at Royal Marsden for Neratinib, if I choose to go on it I will be going to London for treatment, I’m from Glasgow.
Can anyone give me any info? i.e is it working for you??
Thanks
Sharon xx
Sorry not heard of it before. Good luck though. I’m currently on lapatinib, is there a similarity?
Snoogle
x
Yes, it’s a phase 3 Trial
Trial is Neratinib or Lapatinib and Capecitabine.
Can’t get Lapatanib in Scotland, currently no trials available
Sharon x
No one heard of this then it seems…
Sharon, Even I haven’t heard of this one yet… and I’ve heard of a few.
Here is a link to Breastcancer.org which is the American site… It is mainly on trial there and must be very new here…there is a discussion board so maybe you can learn more about it there…we are always a good bit behind America, But Like the TDM1 which is having great results, people are having similar results on Neratinib…We are struggling to get Lapatnib over here and it’s a routine medication in the States…Says it all doesn’t it?
community.breastcancer.org/forum/8/topic/748745
Looking forward to next weekend, see you then…
Fiona xxxx
Yip Fiona I’m step ahead of you, read it all on Thurs night
TDM1 is the trial I wanted to get on in Dundee
hugs
Sharon
xxxxx
well if it’s a phase 3 then it must have done the rounds… I think TDM1 is only phase 1 or 2. There are so many drug combinations in the USA…but they all make their way over here eventually…It’s just such a long way for you to go, but that’s all immaterial isn’t it so long as it does the trick!
Fiona xxxx
Good luck-hope you it goes well for you. I’m sure we’ll all be looking out for a progress report!
Fee, while I agree with what you said about GBvUS drug availabilty, I still think I’d prefer to be treated here-when I read of the loops they go through with insurance, etc, I find I’m very glad we still have NHS, warts and all!
Hi girls
Although I cannot complain about the treatment I’ve had through NHS, there are still drugs that some of us need and cannot get due to lack of funding and also not passed by N.I.C.E. So when it comes to drugs we need, America is far futher forward than us.
Sharon xx
hi am i right in believing this drug is for her 2 + ladies, is this the one running alongside herceptin?
galen
Hi Galen,
Yep it a her2+ trial, Mainly aimed at women who are resistant to herceptin…Lapatinib seems to be working well for women on it, Neratinib sounds like it’s a slightly different newer version… The TDM1 trial does contain herceptin that’s what the T is…the DM1 is a new chemo…
Fiona xx
hi fiona
thanks thats encouraging, i am on herceptin for liver secondarys, but its always great to hear and be aware of new upto date treatments
just in case
love galen x
I agree Sharon-they do have more drugs available, but they are subjected too, to financial constraints because of the continual battles they have with their insurance companies. Many of them are deprived of what they need-but in a different way. Neither of the countries has the ideal system, unfortunately.
I recently tried lapatanib-but that had to be funded through my policy with AXAPPP. Even then there were provisos-they woud pay for 1 year, no more.There was no possibility of getting this via NHS. Sadly, it didn’t work at all for me-we were gutted at that! But after a break from herceptin, and having had 6 months on a PARP trial, we are seeing an encouraging response once again from herceptin. I’m certainly watching this with close interest as I would hope/expect to be using it at some point in the future.
Hi Elaine
Herceptin not working for me, although I am HER2+ it is resistant to Herceptin. Even although we can’t get Lapatinib my ONC doesn’t think it’ll work for me either. They are hoping this Neratinb will do something so I’ll keep you posted.
Hope to hear soon what’s happening!!
Sharon xx
i really hope so sharon
everything crossed
love galen xx