I had an appointment with oncology today and was offered this new drug. I agreed to try it..looking at the side effects its a bit worrying as I'm not even managing anastrozole very well yet.
Hi Hel39 had my telephone review with oncology today. It wasn't my usual oncologist, but a registrar. He had no clue what I was talking about and kept saying Abemaciclib was for secondary breast cancer. He did not know it had been approved for primary breast cancer. I was so disappointed with my telephone review. I wrote to my oncologist over 4 weeks ago asking if it could be discussed in my telephone review and it didn't happen. The registrar said he would look into it but it didn't sound hopefully. I emailed the consultant oncologist this evening, lets see if I get a response x
I was literally just about to message to see how you’d gotten on.
that is really disappointing that he didn’t even know!! You’d think it would be massive news. I hope your oncologist can call you back soon.
my phone appointment was cancelled by a secretary today as they can’t prescribe the drug still. I said I’d still really like to speak to someone as I don’t want to start hormone therapy and risk missing it by a few weeks but she called back and basically said the oncologist has refused a call because they’re waiting on information from the trust and they’ve not even identified eligible patients yet. I don’t really know where to go with it.
I'm.sorry that you are both having problems getting this drug. It's a post code lottery.
I can only suggest you contact your local PALS / write to the chief executive of the Trust/your MP . It is really scandalous that they are delaying this drug when it's available
Just had email from consultant oncologist. Apparently Wales are in the process of approving this and she is hoping it will be done in the next 4 weeks and the hospital will be contacting every patient eligible. She said she not to worried if I am over the 12 weeks by 2 weeks. So I have 7 weeks for it to be approved and prescribed before I run out of time x
That’s good- think she needs to pass this on to her Registrars. Unbelievable that patients know more than a registrar about new drugs in their area of work!
I’ve asked my oncologist’s secretary to call me back at the end of the week with any update from the trust on availability. They also said they will contact all eligible patients but I don’t know how long they will take and km scared of dropping off the end of the 12 weeks period. I know they won’t go over it here at all.
This is my worry, that it wont be approved in Wales quick enough for me. It should be approved through the UK at the same time. Obviously it is going to make us all anxious when we know some people have already been prescribed it and we have to fight for it. Not bloody fair x
No, it’s really not fair. I’m having the same issue with getting an AI instead of tamoxifen. Tried to discuss at the only face to face I’ve had and was told we were just talking about chemo as the hormone therapy was a step down the line and now I’ve signed off chemo and radiation etc I’ve been chucked back to the GP for the hormone therapy- no discussion at all. I’d rather have the AI even for the small percentage benefit but can’t even get a phone call, let alone face to face. Just feels like a conveyor belt. It’s good that yours at least doesn’t sound too concerned about letting you start if you’re a couple of weeks over the 12. xx
