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!
If Christoe's haven't joined up, you may be able to join directly by visiting the Marsden - I wonder if you can contact the research team there to find out about it and ask them to send you the info leaflet. I wish our trust gave us the option even if we had gone beyond the 12 weeks - its so good that yours give you the choice beyond 12 weeks.
Hi, the oncologist told me that they have linked up with the Christie
To get on the trial, I initially contacted the research nurse in my clinic. They know about the trials and which ones they are attached to. My Trust wasn’t attached to this trial but they contacted the Marsden for me, who in turn contacted me to ask a few questions. From that discussion, they needed a referral from my oncologist, who did that within a few days. Your hospital also needs to send all your scans, etc, but this is a standard procedure for trials, so it was straightforward. Things aren’t instant, the trial clinics aren’t every week, so I would think about getting the ball rolling sooner rather than later. The general email for the Marsden research nurses is: breastresearch.nurses@nhs.net if you think you would like some more info. I was sent reading material before my initial appointment, I think it was emailed to me.
I think they have maybe had to as they’ve been quite slow to roll it out. I could see so many women on here getting this from June and the clinic is still not ready at Christie’s now. x
Thank you for that- I’m going to email for info. I have felt worried about taking the drug when it is potentially doing nothing and taking it in response to actual raised tumour markers does make a bit more sense to me, so will read through.xx
I’ve already been sent the info after emailing this morning - very quick of them. Will have a talk with my bcn. I’m a bit unsure about the fact you don’t know if you’re being put in the intervention arm or the standard endocrine arm after ctdna is found…but do like the sound of all the extra monitoring. It’s a really hard decision.
I know what you mean, but at the first Marsden appointment, when I was enrolled onto the trial, I was told more. The consultant oncologist on the trial gave me a bit more information. You have your blood tests every three months. If they detect the markers, you are scanned. If the scans show up something, you leave the trial and are treated in the normal way, although remember that you might not have noticed anything physical, so it could be very early detection. If the scans show nothing, it means that the markers are circulating. That means that a recurrence is on the cards, but it might not be for years. It’s just brewing. I mentioned this to my own surgeon and she agreed that this can happen. At this point the trial will randomly allocate you to the drug not not. It is 50/50. However the Marsden told me that if you are not randomly allocated, they will review any drugs that you are on now, and if there is something better under the new circumstances (like changing your hormone treatment), they will discuss this with you. I was told that people would still be monitored, because that’s part of the trial - looking at what happens to group A compared with group B following detection. I told myself to remember that if I wasn’t on the trial, then I would be completely unaware, and not being monitored at all … well until I realised that something was wrong. It’s a big choice, but even if you do sign up, you can withdraw at any time. Hope that helps.
I thought about that too, but then as you are having screening every 3 months by scan if your DNA rises, then if there is anything the scans will pick it up, and at that point your Christie's oncologist would most likely be giving you immunotherapy and for as long as it works for you. The thing that bothers me about abemaciclib is that it is only 2 years. It is one of the tougher immunotherapy drugs and one of the others might work equally well, they just haven't been trialled yet for this purpose. The other thing for me is just that it isn't longer term and that still niggles at me. On the other hand I do like the idea of reducing my recurrence risk and what if abemaciclib is the thing that is the cure for me and I don't take it? Its so hard to decide...
It really is. My only other thinking is to maybe take the abemaciclib as they surveillance arm for the study is only three years if they don’t pick anything up (I’ve emailed to ask why when reoccurrence can happen way after that). I thought maybe I could then pay privately for these ctdna tests (though doubt it would be affordable every three months) and if anything shows up, I could discuss more aggressive hormone therapy with my oncologist as I’m only on tamoxifen and OFS.
I think the use of these blood tests is going to become quite common place in the next few years for many cancers. Loads of people over 50 in the area I live had letters through inviting them to take these tests at random to pick up early cancer of many kinds as part of an nhs drive so it may be that we’ll be able to get them anyway soon(ish)
the side effects of abemaciclib do concern me though. And I am kind of at the point where I’ve had enough. I thought radiation was going to be easy but I’m very burned and just generally feel crap.
tbank you both so much for your input and advice. This community is always so nice and helpful xx
I know - I felt so battered after all the aggressive chemo - definitely felt thoroughly poisoned by the end of it! And then only just about functioning when I had to have my 15 rounds of radiotherapy. And I would honestly not say that my chemo side effects were that bad, just that the fatigue was crushing at times. It is quite a journey. It is a tough choice either way and choosing to stay in treatment, with bloods, immunocompromise and everything that goes with that for another 2 years, when you have already done a year is a big hurdle. I guess if we can see it as long term investment in a better future, it becomes easier to get back on the train. Thinking of you as you decide either way.
I was just googling private ctDNA tests too but how do you know which labs are reliable and which aren't and what do you do with the test results? A bone scan and CT would surely cost about 2k each time and that is not affordable every 3 months and I don't think that the NHS would screen on the basis of privately paid for DNA tests. xx
I feel for you both. For me, Track-ER was my only option as by June 2022 I had been on Anastrazole for 11 months. I haven’t looked into private blood tests, but as you say, in some areas of the UK the NHS are trialling liquid biopsies. However, and forgive me if I am wrong, but you cannot not be included if you have had cancer in the past. What the tracker trial does is to extract dna from your tumour, and then look for that in your blood tests. So it’s very personalised.
