Hi
Just some positive thoughts for those who are as scared as I was.
I was petrified to start abemaciclib.
I’m on my 3rd month. I’ve started with 100mg twice a day. It was increased to 150mg twice a day after 4 weeks.
I have no side effects at all.
I am also on 2.5 mg letrozole a day. I’m taking sun pharma. Only side effect is morning stiffness, bit of pain and aches but as day goes on so do I.
Have a lovely day
K
Hi,
That’s brilliant. I’ve managed 21 months at 150mgs but have just gone done to 100mgs. For me it’s been challenging at times but I’m nearly at the end and still recurrence free and that’s what it is all about. I wish all my fellow travellers on this journey well.
Same here, no side effects. I had a bit of nausea the first couple of months, but all settled now.
I have been pretty good too once I gave up caffeine. I am careful however and respect the reality of the side effects. Imodium is key as prevention.
Can I ask what happens when it ends as worried about this and the two year stop? There is no generic drug available right now so is the two year stop related to the high costs of the drug?
Hi,
The two year course of Abemaciclib is based on research. The Monarch E trial showed there was a 7% reduction in recurrence in the group that was in the intervention arm of the trial. Just as Letrozole is prescribed for a set duration and that is said to have carry over effect, the hypothesis is that this will also occur with Abemaciclib but as yet the long term data is unknown.
I’m am a few months now from completing the course of Abemaciclib and I plan to enjoy each and every cancer free day. I’ve decided worrying about recurrence will not enhance my life.
It is very interesting to see how well you are all coping on Abemaciclib. I am due to start, along with letrozole, on Thursday. As my cancer is deemed incurable, I think I am due to be on it indefinately. I am dreading any side effects so to hear how you are all coping is great and I hope I will fiind I can too!
**I know it’s been a year since last post here - but perhaps someone new like myself will be reading it. I’m week 3 on Abemaciclib and Fulvestrant - it’s just the beginning, but I wanted to share that it’s not as scary and bad as I heard that it can be. I know each one of us reacts differently to each med but I found it really uplifting to hear that some people don’t get much side effects. I do get tired throughout the day, but I still go on walks in the mornings and excercise and it really lifts up my mood and energy. I read someone say that it helps, even if you feel really tired to still do it and it is true - it really does help a lot and freshens your mind and spirit too!
With diarrhoea I only had once after having a dairy for breakfast and having meds right after. I dropped dairy altogether and never had diarrhoea since!
Also, I discovered there’s some really great stuff out there and inspiring stories of people who healed from stage IV breast cancer (and other cancers) by radically changing their diet and lifestyle - of course each one has to look for themselves to see what it is that’s contributing to cancer and sometimes diet alone is not going to do it, but it’s a great start
it definitely helps! If you feel to look into it check out chrisbeatcancer channel on YouTube. I don’t normally go around recommending these kind of things, but it’s something about hearing first hand stories from real people who share their experience of overcoming something that can be considered so dreadful as cancer and see how their life and themselves got changed around - inside out. I just felt to share some good news, perhaps someone gets inspired by it as I did.
Big Love and wellbeing to all, God bless.**
I am so glad I found this thread! I have started Abemaciclib and I am terrified of the possible side effects. Everything I have read/seen has been really negative. Does anyone have any advice on how is best to take it? Timings? With/without food? I have been prescribed anti sickness meds and diarrhoea meds. Should I take the anti sickness tablets as standard or when needed? Sorry about the questions but I have been given zero information by the hospital x
Hi, I was very anxious before starting. I also got all extras for sickness and diarrhoea - never used them, not once.
I have got fatigued at some point but it was gradual over months not immediately. In this case they will check your blood and either reduce the dose or see if other things can cause it.
It needs to be taken every 12 hours so just set it up according to your body clock (so you don’t have to wake up earlier or stay late at night just to take it). Mine time is 9am and 9pm. In my case - food or empty stomach make no difference at all.
Thank you for your reply. I have 9am and 9pm too as I take my Tamoxifen at 9pm so thought it would be easier to remember. I’m so hopeful that I am the same and it doesn’t hit too badly/at all x
How is it going cornwall1234? Do you get any side effects?
I noticed for diarrhea made difference not to eat too sugary things or dairy too close to the meds, otherwise no diarrhoea at all!
Yes, also fatigue came gradually, but I must say as I read a good advice somewhere on this forum, even if your tired, a light activity, 10-15mim walk now and then throughout the day really helps!
God bless us ![]()
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Morning. It hasn’t been great if I’m honest. Diarrhea, vomiting amd nausea. I saw my Oncologist last week who said my bloods were good so that is a bonus. I’m currently taking anti sickness tablets every day and lopermide every day. The Oncologist said that should train my bowel to handle it better. After a week of everyday with the lopermide I’m to take it on the morning of days I am going out, if I’m staying home then don’t take it. She said if I am still the same at my next review she will lower the dose. Dairy is definitely something I’ve learnt is a no go. Hopefully my body get used to it soon x
Ahh I’m sorry to hear that..
Hope you find something that really works for you.
Maybe check out the diet bit more..
Or the mind, attitude - it can be linked. Fresh air and light walks in nature can do a lot also for me.
But yeah who knows, our bodies are so different.
Wishing you the best,
God bless you ![]()
Hi I’ve been on 150mg of Abemaciclib since March last year. For the first 2-3 months the diarrhoea was unpredictable. I soon worked out that a change in diet made all the difference. Fatty foods, dairy, highly processed ready to eat meals I’ve given up for whole foods and traditional home cooked meals. I only get a bout of diarrhoea occasionally usually after eating fatty processed foods bit everyone needs abit of something naughty every now and again. My fatigue has been my worst side effect but that could also be the letrozole having an effect. My bloods every 28 days come back in range except for flu season Feb to April I picked up cold virus one after another. My neutrophils dropped and I was given a break. Antibiotics nasal sprays and antihistamines, I lost my voice for nearly 3 weeks because of sore throat and infection. Bit that is literally all I’ve suffered on the Abemaciclib. I’m continuing on 150 mg and tolerateing it well . I think everyone is different and some will suffer the side affects and some will not. If you don’t well keep going with it. If you do then you have to discuss it with your oncology consultant to find the best way forward xx