Abemeciclib - Nearing the end of my 2 years taking it

  • 7 replies
  • 311 subscribers
  • 269 views

Hi everyone,

I was diagnosed with Grade 3 Breast cancer and lymph nodes Feb 2022. ER/PR positive.

I went on the ROSCO Trial, had 4 lots of chemo, then a Mastectomy and node clearance, followed by another 4 lots of chemo and Radiotherapy.

I then started Letrazole to block the hormones I think, and Abemeciclib for 2 years.

Coming to the end of those 2 years now and I'm terrified that because I'm not on the meds the cancer will come back.

Rationally I know this is not the case but I'm having a hard time telling myself this and for the first time in the last 3 years, I'm breaking down and falling to pieces on a regular basis.

I just wondered if anyone out there is in a similar situation?

Big hugs to you all,

  • Hi  , I’m only on my second month of Abemaciclib and about to ask to reduce the dose as the tummy upsets aren’t worth it. But I do understand your worry. It’s actually my second bout against this beast as I’ve had a recurrence, it snuck behind my implant after my first mx. I’d had Letrozole and Tamoxifen only, as it was supposedly low risk. Just shows….. but I’m a firm believer in stress adding to the possibility of cancer (and I’ve had a lot of that) 

    I think if you’re on Letrozole then you’ll presumably have at least a further 3 years of treatment (and annual monitoring too) so I think you possibly are worrying a little too much as any risk will be watched for (if that makes sense?) But your team will understand your worry, too. I guess the only person to talk to about your fears is your BCN who will know what your team considers your risk level is like. 

    It’s worthwhile having a read of Dr Peter Harvey’s paper (will try and find and post a link for you) as it explains the fears of intervention gradually reducing very well as you get further from the initial treatments. 
    https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf If this has worked then you’ll be able to click on the link to read. 

    Hugs xxx

    Moomy

  • Well done for almost completing your 2 year course of Abemaciclib. It’s not an easy journey. I still have another 11 months to go so I don’t know how I will feel when I finish Abemaciclib. At the moment I think I will be relieved but of course I also will have the life long anxiety of recurrence. My cancer was also a grade 3 with 2 lymph nodes affected. I hope I will be able to live in the present. My cancer diagnosis has taught me that life is short, we are all going to die and to enjoy and appreciate time spent with family and friends.
    When I was first diagnosed I couldn’t sleep, my fear and anxiety was horrific but over the past 2 years I have learned to live with uncertainty. I never had control over my life but it took a cancer diagnosis for me to appreciate that fact. I wish you well and hope you have a long and content life. 

  • Hi, I am at a similar point to your journey. I finished abemaclib 3 weeks ago and I also have fear of recurrence. It feels really worrying to relax and try to be normal again. I think expectations from family and friends that everything is ok now is also quite difficult as like you even though we've been through hell the tablets were like a security blanket. 

  • Hi Moomy

    Thanks for sharing your insight. I'll certainly have a look at the paper, link looks ok.

    My BCN is as angel and has been a great source of support and direction.

    I just wanted to see if there were others out there, feeling similar.

    Perhaps in my head, if I'm not the only one it makes it easier.

    I also believe you are spot on about the stress contributing, another reason for reaching out to see if there were others, and perhaps be able to help someone else by saying, you are not alone.

    Listlady

  • Thanks Shade

    I was super excited that I was almost at the end of my 24 cycles at first. No more dodgy tummy. No more horrible sudden cramps. No more having to plan where the nearest toilet was every time I left the house.

    It's only this last couple of weeks my mind has caught up with the other side of things. That said, knowing I'm not alone has helped.

    Thank you for responding, it really has helped hearing from someone else. I wish you well in your journey. May you enjoy many more beautiful moments in life.

    Listlady

  • Hi FE1

    Thank you for taking the time to reply to my message. I've never come across someone at a similar stage to myself in treatment terms.

    I am really looking forward to life without the side effects of the meds as they have been quite extreme at times.

    I guess the security blanket is just going to have to be replaced with a real one for the winter and the knowledge that I am not alone.

    I know that all our journeys are different but it was comforting for me to find that there are others out there in similar situations.

    Whatever 2025 holds for me I'm going to try and embrace with a smile, knowing I'm not alone.

    Listlady

  • Hi Listlady

    I will be finishing Abemaciclib in March and I feel exactly the same - so nervous to not be taking them everyday. 

    Best wishes

    Lizzie