Good morning everyone xx
I heard on Tuesday that my application for Kadcyla had been turned down (as I expected really). I am therefore starting GrmCarbo on the 24th January and continuing with Herceptin.
I am terrified that my options are running out, I am very well in myself and have been stable since August 2013 on Cape and then Taxol. I had FEC and Taxotere in 2012 before surgery and also had Vinorelbine in 2013 (didn’t work). I am in N Wales and we seem to have less options here.
Anyway I am sorry for the depressing post, just find it all so scary xx
Hi Mollymop,
That sounds so unfair that the drug you need is not being funded. Last year there were reports in the press here in Wales of a lady in South Wales getting it funded and that there would no longer be a ‘postcode lottery’ with regards to drug availability. So, please consider speaking to your AM, it has to be worth a try?
Just wondered too if you knew, or would be interested in, the new group starting in North Wales run by BCC for people living with secondary bc? It starts on the 23rd January in the hotel next to Ysbyty Glan Clwyd - contact Breast Cancer Care if you’d like more info or to register.
Best wishes,
MaggieMac
Thank you very much MaggieMac xxx yes I would definitely be interested in this - I have my treatment at Glan Clwyd xx
Hi Mollymop, so sorry to hear about you being denied Kadycla. It really upsets me when this happens, when i think of all the money being wasted on useless causes. who gives a toss whats happening on mars (just one of my gripes) when people here are suffering through lack of funding. I too am running out of options and it is very frightening. I hope the gemcarbo works for you, i had 6 cycles of carboplatin which seemed to do the job in holding me steady I then had a chemo break from August but the wretched thing has flared up again so looks like i’ll be back on epiribucin and living on a wing and a prayer. Do let us know how you fare. xxx
Thank you Stresshead (that sounds like me too!!!) Wishing you all the very best xxx
I am considering asking for a referral to the Christie - feel
I have to “do something” whilst I am in still okay. I have been largely stable since 2013 so hoping there will be something out there! xx
Here’s to a more positive 2017 for all of us.