Hi @louies-mum - how quickly were you able to get back to work when starting Abemaciclib?
I’m doing really well although I’m aware it’s early days. No side effects at all for the first 2 weeks but now the cramps and diarrhoea have started. It’s not all the time but at least once a day. Tends to be in the afternoon. I’m only on week 3 and I’m hoping it will settle down again. Trying some dietary things. Will update you with my progress!
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Not back to work yet. I’m on week 3 of the drug and I’m planning to return in a couple of weeks. I’m hoping to negotiate flexible working as the cramps and diarrhoea seem to be an afternoon issue. I need to get back to work financially and HR are not being very nice. I’m nervous about it but I feel well enough to give it a try.
That’s interesting - thank you for the update. I expected side effects from day one and the body then adapting. Wish we could go straight on to the lower dose like you can with ribociclib
@louies-mum @jbb @sunshineandunicorns
Just wanted to let you know i am now coming to the end of my 24 cycles of abemaciclib, at 150mg twice daily.
It hasnt always been great, i lost about 2 stone in weight and really had to fight to stay on it/maintain current weight. I found toilets at work that were less used and therefore no queue, tracked toilets if i went out, curtailed shopping early and gone back later in the week because of pre-toilet cramps, carry wipes/tissues in case no available toilet paper… i will take loperamide if i go 2-3 times in the day (get constipated if take so dont rush to take every time which is possibly why i had weight issue).
I have had to pause it three times- a few days when i had covid and dental extraction, just to make sure I could fight infection, then back on it again.
However most of the time i have been fine, i have been to seville, hungary, austria this year, been to theatre/musical shows, car rides of 2-3 hours to visit family. I also worked full-time for about 12-16 months of the 24 (although would have struggled if customer facing or restricted from going to the toilet when i needed).
Like most things, you will learn patterns or what upsets your tummy,
Sometimes things are outwith your control such as blood results, so you may have to reduce/stop if your body not coping.
You can have reduced dose which is effective too, if 150mgs just isnt for you.
So you can only try, keep an open mind and see how it goes for you…
To be honest, i would stay on it if it were an option as it feels like an additional measure at holding off recurrence/spread (even if just in my mind),
Good luck
Laura
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Thank you so much for this. It’s being tied to the loo that worries me as I would like to try to have a normal life - as much as I can in the circumstances- after ten months of treatment - chemo, surgery, three weeks of RT. I work full time and not sure how I could do that whilst on the full strength
This also worries me too and being tied to being at home sounds awful.
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I was the same but only thing I was worried about was diarrhoea but as it happened I was fine. I gave up Caffeine and this made a huge difference. In fact only slip up happened when I succumbed to a cup of tea whilst travelling.
I also didn’t drink on the days before I went to work just in case and cut down my alcohol consumption considerably.
I started a week before going back to work. I am doing very well on it and I would say if you can start with higher then do.
One other thing that made a big difference was Imodium melts they are fast acting and if you are worried about a work meeting for instance as the worry itself about diarrhoea could bring it on then these tablets were great to calm everything down.
Also drink plenty of water.
Consider time of day to take the tablets. I found taking them two hours before going to work better.
All in all these meds have great results so hoping they work.
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Hi
I started 150mg abemaciclib in july 23 with occasional bouts of D. It was scary getting tummy cramps when on public transport for example. By october the bouts were daily. My breast nurse said quality of life is important ant advised i come off them have a rest and then go back on lower dose. Was supposed to be 100mg but ive ended up on the 50mg. Ive been fine on this dose. One nurse told me that if i was having too much D bouts then i would lose the benefits of the medication. Im still confused as to how the lower dose is just as efficient as the highest one. If this is the case then there is no need to worry what dose we are on. Any thoughts? X
Great that you can tolerate lower dose. Yes everything I have read says the lower dose is just as effective. Other thing that is nb is that if you are on the higher dose and you are suffering from a bad stomach then a lot of the dose will not be getting to your system as a result so essentially it’s not a choice to suffer on as it won’t make a difference. Hope this helps. I have found taking Imodium once a day very helpful and have had no problems.
I also found it confusing to hear that a lower dose could be as effective as 150mg. This is likely because, in the study, many women had to reduce their dose due to side effects but still saw benefits. I personally could only tolerate 150mg for a few months due to severe diarrhea and low neutrophils. I then took 100mg for nine months. Initially, I didn’t notice much difference compared to 150mg, but over time my body adjusted.
I discussed with my doctor the idea of taking 100mg in the morning and 150mg in the evening to see the effects. She was supportive, and it has now been almost a month on this regimen. I’ve had few diarrhea but overall it has been manageable. I plan to continue with this dosing and see how it does and reduce dosing if needed.
Hi to u both
Thank you for replying. My bc nurse said if all goes well on 50mg i could try the 100mg. I dont know if it has caused hair thinning for either of you. Along with the monthly fulvestrant jags and the abemaciclib, there has been a definite thinning of mine and especially when i washed it. When off the 150mg for two months and then on the 50mg the condition of my hair has improved and my hairdresser noticed some growth. So this also has me tempted to stay on the 50mg. I think i need to have a chat with oncologist and bc nurse again. Thank you.
Hi Sandra
Your post has given me some hope I have been on 150mg abemaciclib with monthly injections of fulvestrant and denosumab since Oct 24 My hair never recovered from chemo in 2018 and being on letrozole up to May 24 it had grown in very fine but I had a bald patch at the back which I covered with hair fibres and a scrapped back style which was a killer as I had always had a fringe I had a glimmer of hair recovery after the letrozole finished But have been hit again with loss of hair and what remains is very thin despite my doctor telling me I would’nt lose my hair. I have had to stop abemaciclib in Jan as the latest scan showed drug induced lung inflammation and I’m on steroids until after my next scan which is on Mon Your post gave me hope because if I have to go back on abe then a lower dose could be an option and just maybe my hair will grow back just a little we can but dream
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I hope things improve for you. Our hair is so important to us and its hard to cope with along with everything else. Im glad ive given u a wee bit of hope. 