Four nodes but can’t have abenaciclib after NICE approval

Hi Cloudier

of course you’re not selfish. I suspect many of us will Just miss the boat with it as the health authorities won’t have funding in place or for various postcode reasons. It’s really scary and frustrating to feel there’s a treatment you’re missing. Have to focus on the grade and that outlook is very good generally for grade 1 and 2 but I completely understand your upset. X

Thank you for that encouraging point. That’s kind of you x

Maybe take a look at the TRAK-ER study -perhaps you qualify for that? They measure tumour markers in your blood and if they go up you get prescribed a similar drug to this or placebo. You have to be ER pos, HER neg and then there are criteria around the pathology of your cancer too. 

On plus side, having a pathological complete response in your breast sounds awesome, and even the lymph nodes responded to some extent too. That is really hopeful.

It is difficult when we fall outside of the criteria for new treatments or can not access ones that other people can get elsewhere and there is no good clinical reason not to give it. I am struggling to get ovarian suppression and an aromatase inhibitor despite the strong evidence in support of it in premenopausal women with high recurrence risk. Sometimes I am ticking along with life and other times it drives me crazy! I completely get why you feel upset about this xxx

Thank you for your kind comments. Funnily enough, I have written to my oncologist about the TRAK-ER study, so will await her reply. I’m really sorry to hear of your struggle. I do have a friend who is on ovary suppression (I am 60, but she is only 43). She is grateful, but is struggling with it a lot. It has affected her hands badly and she is unable to write, drive and prepare food due to the joint pain. That isn’t meant to downgrade your frustration. 
you've been really helpful x 

Hi Hel39, so I have seen my oncologist and we did talk a bit about abemaciclib, which I am eligible for. But it will be a logistical challenge to deliver it to the eligible patients; from patient identification through to the practicalities of extra clinic appointments and bloods. They are trying and have immediately set to work to figure out how this might be possible, but it is not going to be a quick turnaround as there is so much work to do before they can begin prescribing it. I had suspected this was the case, and it will be different depending on the capacity of individual oncology services. The best thing as always is to see what is likely to happen where you are having treatment and how soon. I think there is a 6 month time window from when aromatase inhibitors are started.  

Thanks for getting back to me. I’d emailed my BCN and she advised to ask at my next oncology appt, which is 12/7. I can see that the Clatterbridge updated their website saying they’ve started work to get it to the patients but it didn’t sound like it would be quick. It’s annoying as they must have known it was coming.   I’m under Christie’s and am hoping they’ve started the work also.  Just depends if they say anyone within that time-frame can have it or if it is new patients going forward kind of thing. X

You might find it is easier to organise in a larger centre where there are more oncologists and people to deliver additional services. In smaller centres it is much more of a logistical challenge when there are less people on the ground.

Did yours sound as though you’d get it as long as it was sorted within that 16month time frame ?

I do find it frustrating some people will miss out. I understand there are logistics but when they talk of identifying eligible patients etc…it’s just an excel spreadsheet and a filter surely. But, yes, I suppose there  are a lot of extra appointments then required. 

I’ve emailed ask a breast care nurse at Brest care now so see if there are legal time frames they have to stay within. Will let everyone know what they say x

I don’t think they know yet. They need to work out the logistics before they can say anything at all. I understand completely why as nothing in the NHS is as straightforward as an excel spreadsheet - if only! I am just going to wait and see what happens, at least for a while, whilst they work out what delivering abemaciclib means for them

Hello- I just spoke to a nurse at breast care now for an update on this. The trusts are expected to have this drug available to everyone who qualifies, within 3 months of 20/7 but, as the funding is already in place through the cancer drugs fund, many will have this on offer within 2/3 weeks and the three months really is their maximum.

sje advised that if you’ve been on hormone therapy for more than 12 weeks, it will not be available so, if anyone is due to start hormone therapy now then discuss with oncologist as may be worth waiting so this could still be added in. Ask where your trusts are up to in the process etc. they will be updating their own website imminently. 
x