I’ll be starting on Verzenios (abemaciclib) next month. I’d be really grateful if anyone taking it could share their experience of side effects - thanks!
I would have chosen TRAK-ER over abemaciclib if I had the choice. I think its a great study and it offers the option of longer term immunotherapy and of catching your cancer earlier even if you aren't in the treatment arm. The CDK4/6 inhibitor is easier to tolerate too which is another plus. I really hope the study works out well for you. x
My other question about reduction in recurrence risk with abemaciclib is how much of the recurrence is local (potentially very curable) vs distant recurrence (treatable). I can't recall from the research study, but my reason for wanting the drug would be to prevent stage 4 disease, ideally forever so thats the figure that I would be weighing up rather than reduction in all types of recurrence.
I think it reduced distant by 4. Something and all recurrence by 5.2% at 27 months of median follow up. Not much in it and very low numbers, really. I also noted that once 90% of patients were off treatment, it showed that only about 72% (I think it was) had completed the full two years so I’m guessing a fair few really struggle with side effects. The 72% is from memory and may not be right but it was nowhere near 100% completed the full two years x
I would hope if paying privately that Christie’s would do it using the original tumour sample for the dna info. Like you say, what do you do with the info though. I don’t know if I’d want the relapse heads up or not but they might bring out further options in the next few years. X
The ‘future / further options’ did occur to me. The consultant at the Marsden told me that their researchers have discovered 200 mutations for breast cancer - 6 of them are pretty well known (BRCA 1 and 2 are the most well known). I nearly fell off my chair … 200? So, you get to know which one you have. So I’m guessing that if there is ever a future treatment that works for your mutation, or is already known to work, then you can ask for it, or you will be referred for it if needed?
I re-read the paper as I couldn't remember either. The women in the study had chemo before surgery to shrink their tumour and nodes. I think the difference in invasive disease free survival is something like 6.6 percent at 2 years, and distant relapse free survival is 6.7 percent at 2 years (if my maths is right at this time of the morning)! The other thing is that the curve flattens off for those in the treatment group for the 12 months after treatment stops so that the benefit lasts for a while afterwards, maybe for a long time, maybe for some-forever... we don't know yet. I thought 95 percent of people entering the study continued treatment. Those who needed dose reduction for side effects still got the same benefit from the treatment too.
Two weird things happened out of the blue - one is that I was told my histology is actually suitable for research (maybe mastectomy alone is allowed) and the other is that having been told I had missed the window for abemaciclib - my oncologist offered it to me. It must be that all those eligible at the time NICE guidance was published are being offered it. So now am v pleased to have choices again.
As you can tell .. I yo-yo around on the decision because of the research study, keeping it for stage 4, two years of immunocompromise and so on. I feel like I can't face more active treatment right now too, though I know I'd get my head in the right place to get on with it if I needed to. It is good to hear some are willing to give it a go and seem to be doing well on abemaciclib and finding their way to live well with it.
Yes I have had Surgery, Chemo and Radio and am now apparently eligible for abemaciclib. I was unaware of the TRACK-ER study until this forum thread (which is sooooo helpful by the way).
Still undecided what to do and have until the 11th October to decide, when I see my Oncologist again. Think I might ask about TRACK-ER but not sure if that just adds more confusion into the mix. This is really tough :(
