Hi
I’m new on this forum and I’m happy to be with you all. Hope everyone will win the battle we are all going on.
I was diagnosed in 2020 had mastectomy following by Tamoxifen. Last summer (August 2023) I did privete pet scan wich showed the cancer on the same side, above my breast plus 4 underarm lymph nodes infected (in2021 they were clear). I went through chemo and radiotherapy following by Letrozole.
I had offer of Abemaciclib which couldn’t start yet because of the hip replacement surgery I went on.
Niw I have to start the Abemaciclib next week, but reading all the stories you sharing I’m really worried about how I will cope with it.
Im working with a preschoolers, I’m tired even without the pils… Do you think is it possible to work full time in this kind of job being on Abemaciclib?
Also how quickly the side effects affect you? I’m planning christmas journey to visit family in other country and I’m really scared of now.
I would appreciate any of your suggestions/information etc.
Hi and good morning,
Welcome to our friendly group of ladies and gents.
Im on Abemaciclib and have been for the last 11 months. Started on 150mg twice aday, now down to 50mg twice aday, i and many others want deny that the drug does cause diarrhoea, it can be controlled with imodium and slight changes to your diet as in fibre etc, usually kicks in about 6-8 days in from starting.
Ive not been tired, alittle less energy and slight brain fog but im sure you experienced that with tamoxifen, as i did too.
All i can say is you will be monitored whilst taking the drug.
Enjoy your holiday visiting family and if you can book some seats near toilets on plane for peace of mind if nothing else.
Take care and have a great christmas
Hi there. The side effects can vary greatly from person to person, so I can only speak to my own experience. I started with 150mg in March twice a day, and within a week, I began experiencing side effects, primarily diarrhea. By May, I had to reduce the dose to 100mg due to severe diarrhea and a low neutrophil count. Since then, the side effects have improved significantly. I still have occasional diarrhea, about once a week on average, though sometimes more or less.
The biggest challenge has been the unpredictability of when it will happen. I kept a journal to track if my diet affected it, and the only clear pattern I’ve noticed is with coffee—if I have it, I’m usually prone to diarrhea, typically about two hours after taking the pill. It seems that eating or drinking something tends to trigger it but it can be controlled with Immodium
I’m now working at 70% capacity and have the flexibility to work from home two days a week, which has been really helpful. It’s manageable, although I do tire more easily. Despite the side effects, I still feel protected by the medication and have never missed a dose.
Wishing you a great time with your family. Enjoy your trip
Morning, apologies I can’t add anything but just wondered how you went about getting. Private pet scan. I just need peace of mind that the cancer is gone x
@lhk
Hi, I did it in Poland. You can contact the clinic and ask for it if you have cancer history. You see the oncologist first then scan (I had it at the same day).
I went just to prove that everything is fine but unfortunately they found the cancer recurrence. If you like more info I’m happy to help xx
Thank you for your response. I can see that everyone is going to reduce the dose quite quickly so wondering why we can’t start just from 100 or 50 instead of 150.
Wishing you all the best xx
From what I understand, the original study was designed to evaluate the 150mg dose, but many patients had to reduce it due to side effects. Now, with five years of data, they can confirm that lower doses are still effective in reducing (or postponing?) recurrence, but they don’t yet have long-term data (as far as I know). Doctors typically start with a higher dose to see how well you tolerate it and then adjust the dose.
I actually met a woman who had no diarrhea at all—yes, it’s possible! She still takes the full 150mg dose, so it might turn out that you’re one of the lucky ones too
@trygrys1
Hi,
I am due to finish abemaciclib in 2 months and been on 150mgs the whole way through.
I won’t lie, it hasn’t all been easy.
I’ve had a few accidents when I haven’t reached a toilet in time (no-one else was aware so not horrendously bad just not nice).
I’ve hung up on a few telephone calls/meetings when I’ve had to go and blamed reception/technology/someone at door…
I’ve mapped toilets when out somewhere important or taken loperamide in anticipation…
I worked full time for just over a year but I had flexibility in my job and can imagine if you were a nurse on a ward or front line teacher, lone worker shop assistant… it would be harder.
My tips would be
Give it a go and see how you manage, we’re all different. It may be worse at the start til you work it out.
Try a few things if necessary such as variation to diet…
Keep talking to your team if it’s a struggle and discuss break, reduction in dose
Keep small pack of wet wipes, tissues, pad, pair of pants, small plastic bag in your bag. If u need it, you’ve got what you need. If you don’t need it, it still gave you confidence hopefully.
I hope it’s not as bad as you think.
To be honest, if it keeps cancer away, I would continue for another 2 years… reluctant to give it up!
Good luck x
Hi, well this is a good news reply. I was on Ribociclib but couldn’t cope with side effects so was switched to Abemaciclib, only 50mg twice a day, but I’ve had no diarrhoea at all. Like you I was dreading it because of all the things I’d read and when the hospital gave me the Abemaciclib they also gave me quite a large supply of loperamide, so I was really dreading it, but it’s been fine for five months now. Give it a try and see how you get on. Good luck and big hugs.
@LauraR
Wow, that’s really good news to hear your story. Thank you for your message. All the advices are very appreciated.
Most what I heard was that people stopped to take the abemaciclib just after few months due to side effects. Hope you will never have to go back to it
Can I ask you how your hair been during the time? I heard lots of women loosing them again.
Best wishes xx
@julies52
Thank you very much for your message. It looks more optimistic now after reading your and other ladies stories in here.
I’m still quite nervous about but as you say, it’s worth to try, hopefully I’ll be the lucky one
Best wishes xx
@trygrys1
My hair has grown really well at the back/sides but have a receding hair line/thinness on top at the front. Stopped chemo 2 years ago now but still don’t have my fringe back.
I’ll swap my fringe for no cancer tho
Some days I would be sitting on the toilet for third time that afternoon thinking this is awful then the next two days I’d be absolutely fine and think, this isn’t so bad… I also lost a lot of weight and my consultant wanted to pause treatment but I ate little and often, had snacks and maintained my weight and she agreed to let me continue.
I found toilets at work that were self enclosed rather than cubicles (felt better about toilet noises). Disabled ones tend to be less used as you may need to go quicker.
I never tended to have diarrhoea overnight or mornings so that helped me plan.
Online shop can be good if you get tired or you’re starting out/nervous you may need to go to the toilet mid shop (I only had to do this twice).
You’ll pick up lots of tips once you start
X
Hi @mun4o
I’m already on Letrozole and going to start abemaciclib with it too. I was on tamoxifen after my first diagnose, which clearly didn’t work as experienced the recurrence on the same side. I hope this combination (Letrozole +Abemaciclib) will work
All the best for you x
