Hi @beck; just saw your post. I was initially on 150 mg, 2x daily Abemaciclib, but I had such severe diarrhea so that my onc reduced the dosage to 100 mg, 2x daily. This worked better for me, but I do so absolutely agree with your sentiments that chemo is only for 6 months; do we want to be on a cancer drug for 2 more years and in addition, immuno compromised during this duration… sigh. My white blood count has dropped drastically, plus my kidney enzymes are affected. I sure hope this Abemaciclib will do what it is supposed to do, i.e prevent recurrence… do keep us posted on how are you doing with Abemaciclib. Sending you hugs.
Hi Siggi and all! I have been putting off posting as I wasn’t sure of the good news but, my oncologist approved a reduction in dose and it has made SO much difference!
I reduced to 100mg a week last Friday and over that weekend started to feel so much better, I thought it might be the initial result of the lower dose and that I would probably feel dreadful again soon but so far I haven’t, finger crossed!
I actually have some energy now and feel like two years on this stuff is not going to be impossible. Surprisingly I had not turned neutropenic again, but that just proved how much I needed the dose reduced since I wasn’t neutropenic but still felt awful. I’m still having a bit of bowel discomfort but don’t need to take the imodium anymore. I’m still feeling a tiny bit fatigued but it is at a tolerable level and my appetite has come back!
Indeed I hope this med will do what it’s supposed to and that this all proves worth it. I very much appreciate the messages on this forum that said that it’s the frequency of taking the abemaciclib rather than a high dose that is the important thing, I think that gave me all the more confidence to call the ward and ask for a reduction in the dose, so thank you to all who shared that information!
I am curious to see if I might turn neutropenic again even on the reduced dose, but am just so relieved at the huge difference the reduction has made.
Sending hugs to all 
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Hi Beck
I am glad you are feeling so much better. Apologies if you know this already but at the Madrid conference last Friday there was also a poster presentation confirming the efficacy of reduced doses.
Best wishes
Bookie
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That’s amazing, Bookie, thanks so much! I didn’t know about the conference or the presentation so thank you for sharing the good news, very much appreciated.
Just a quickie to say thankyou for the BCN for sending me a link direct to this group, as i had no chance of finding it or any of the other threads they have sent me links to that don’t have the reply feature.
i checked my FBC and yes both my wbc and rbc are low, which confirms the tiredness - and i shall be reporting this to the christie team, i need more hours to do … and catch up, moonsox.
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Im currently nearing the end of cycle 2. Cycle 1 was awful really bad stomach cramps and diarrhoea iwas also really lightheaded/ dizzy from week 2 which got so bad that i barely moved from my chair . Oncologist told me to take a 2 week break and cycle 2 was reduced to 100mg twice a day which has been much better my stomach on the whole has been fine with just the occasional dizzy spell . I would recommend suffering bad side effects to talk to the oncologist about a dose reduction, 2 year’s is a long time to suffer bad reactions. Good luck to you all x
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My wife has been on Verzenio since last 1 year and due to side effects is taking half the dose.
She already tried iBrance and Kisqali and had to stop due to severe side effects.
Can a person be on Verzenio for 5 or more years.
(Wife with secondary mets to Bones, diagnosed Feb 2022)
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Yes, very fed up about my hair, too! After a double mastectomy, nodes-removal, months of chemo with dreadful side-effects and radiotherapy, I had a “honeymoon” of c.7weeks before starting Abemaciclib and Letrozole - hair and nails started re-growing, feet neuropathy faded etc. etc. and I began to feel more like me again. Now completed 2 cycles of Abemaciclib and, though less grim than chemo, my hair is thinning again, I have near daily diahrroea and am exhausted. Going to ask for dose reduction (or may even give up…) next week as am miserable at the thought of years like this. Such a let-down after getting through chemo. And had no idea this long-term treatment would be so bad. Sympathies and good luck!
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Hi Clarissa1
I too am on Letrozole and Verzenios Abemaciclib, I started on 250mg but worked my way down to 50 mg, and now have an even balance.
I’m glad… i know that doesn’t sound right - but glad you mention Feet Neuropathy, i’ve only just realised this is what the dry feet with me actually is, but glad to hear there’s a chance mine will fade, and keep doing foot massages to try and resolve.
I didn’t have any bad negative side to Radiotherapy just very sleepy at the end. even now i sleep for up to 9 hours. My nails on my hands started to regrow but all my toe nails with exception of big toe nails that are not growing following the dropping off of the nail.
Being led to believe of the long term benefits of the abemaciclib i’m willing to continue for the 2 years, and if you get down to the 5omg level i’m sure your symptoms will improve and you also see the benefits.
We ladies are strong having gone through what we have, and this strength will continue. My sisiter has just completed her 10 years and is a great role model for me. So i wish you well on our journey, and offer you any sympathies you need.
Love and light, Mx
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I found over the counter Imodium was better for me
Hi Clarissa 1,
Yep like you I am on this treatment. The full dose was horrible, I just felt like a total zombie all the time. As moonsox said, a reduction in dosage may be all you need to feel better and be able to stick to it for the entire course. I am down to 100mg and it did make a difference, I still feel very tired and can sleep all day long, but when I do get going or have appointments I can function better on the lower dose. Thankfully during chemo I didn’t lose any nails but they did turn a strange stripey colour, and the abemaciclib brought that back and has made my nails very prone to splitting and breaking. My nails and fingertips look very similar to my dear old Grandma’s did when she was in her 80s, because of her osteoporosis! I had thought I would face that effect on the nails some day, but not this soon! It is tolerable though and I am just keeping them very short and using an intensive hand and nail moisturiser.
I also still get diarrhoea on the reduced dose but can go for days without it even without the imodium which is an improvement. I am given the imodium on prescription by the same unit that gives me the abemaciclib, if you aren’t then I’m sure you can get some if you ask. They should be keeping a close eye on how much diarrhoea you have and prescribe to mitigate it.
Like you, I underestimated how grim this treatment would be and really resent that it has to be a two year course. At least the chemo was only a matter of months, right?!
As I say I am still having a lot of fatigue and it’s a real battle to stay motivated, but I agreed with my oncologist that I wouldn’t want to go any lower, and am just having faith that this stuff will work for long term prevention.
All the very best to you and I hope that you can either get a dose reduction or that the meds settle for you. Oh, even though I was neutropenic a couple of times, I still had to actively request the dose reduction so please don’t by shy about asking for it.
Best wishes
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Hello everyone
I’m new to all this having started Abemaciclib only today . I was on Ricociclib for 6 months but it caused Lung inflammation , which meant coming off it for a month . A new CT scan revealed the inflammation had gone which determined it was caused by the Ribociclib. So it was permanently stopped as it will just cause further inflammation if I carried in with it.
Ribociclib wasn’t overly known for causing diarrhoea, but upon looking back it may well have been the cause of mine. I suffered at least once a week, waking usually in the early hours and having several bouts, between then and mid morning. Then Constipation followed and they caused further bowel issues, fissures, and bleeding.
I used to know when it was going to happen as I developed a sulphur smelling gas and burp, like rotten eggs.
So as I said I’ve now been put on this drug, and I’m much more nervous than before. I’m stage four breast cancer, and I’m also a man.
So I’ve taken both doses today, and the only thing of noticed so far is butterflies in my gut and my lower teeth seem very sensitive , I was very dubious starting this morning as I had bouts of diarrhoea last night……that’s without this pill😰
I’m more nervous that I’ve got a few trips to make in the next three weeks, all long distance by train, and the thought of a 4 hr train ride with the possibility of the Runs doesn’t excite me one bit.
I’m on these now until, they don’t work, or like before the side effects are detrimental to my health, so I’m praying it’s all manageable .
I wish you all on this pill, the very best and hope I can manage to cope on it myself.
Regards
D
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hi
And welcome to the forum, i’m not sure if you are also on letrozole, i ask because i find the Letrozole and the Verzenios which is my Abemaciclib work well together one counterbalances the other. i have taken daily records noting times, how i feel rumbles instomach, headaches, burps etc, and am able to 80% of time know when i was due to have a bowel movement. Presumable if you are going on the train then there will be accdess to the toilet. I’d pack an emergency bag which shoudl contain - Long big pads, wet wipes and a sheet of loperamide. if you have a loose movement, then take the loperamide. clean yourself with wet wipes and replace your large pad. i still ensure i have several said bags in each vehicle i regularly travel in, ie my car and my partners, and in a crry bag when out with others. KI also find paracetamols useful for the dehydration, oh and a bottle of water to try and avoid this.
i hope these tips help.
Generally your team start you on the highest dose ie 250mg, I was moved through 250mg, then 100mg and am now on 50mg cycle 7. My body has adapted. don’t be afraid in speaking your symptoms as they are, your christie team are used to this.
But it does help if you can sumarise for them your symptoms and how often they reoccur, in time for you consultation.
Good luck, and keep in touch. Moonsox xxx
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ps sorry about my spelling mistakes, i forget to check, and my fingers are a little cold at the mo, i’ve been out in the garden . Moonsox
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Hello Moonsox
Thank you for the reply…I was on letrozole back in 2019 but suffered quite badly of it, and tamoxifen, and the Extamastene, which caused an Abdominal Aortic Aneurysm to grow very quickly. All hormone therapy was stopped ,and I had a graft repair operation to the AAA…
Sadly June 2023 I was diagnosed with stage 4 as it has now spread to the lungs…this time with the AAA repaired I’m now on Anastrozole Zolodex originally Ribociclib now Abemaciclib.
Access to train loos on the whole are ok but I find London ones very busy, and I know my bowels when I’ve got to go I’ve got to go……but I’ll take a bag 25th me thanks…
Re the spelling, i empathise with you, mine is rubbish, as is my memory, it’s shot to bits. I thought 4.5 years on after initial treatment I’d be ok , it’s now even worse.
Take care of you
Regards
D
Hi
I started abemaciclib two weeks ago I started off with diahorria every day at the same time crippling pains then Needing to go to toilet I think I have solved this l take 1 Imodium as soon has the diahorria starts that usually stops it , I also eat ginger biscuit which I don’t like but it seems to settle the stomach I don’t eat for a few hours after taking the tablet another week into taking these tablets only 1 eposode of diahorria.
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Hello Janeymay7
Thanks for that advice I’ll follow it ,I’ve even bought the ginger biscuits which I reallly like.
I’ve gone about my day with Imodium type pills in my pocket just in case, but bar first thing this morning so far alls calm…
I realise as well , all the things I’ve been eating in order to be healthy, is likely to start bouts off, so I may have to work out what irritates and what doesn’t ….Yesterdays roast dinner with healthy veg, certainly set it off overnight.
Thanks for the heads up, I hope you continue to cope well yourself,
Regards
D
Thanks for that, Moonsox - appreciate your response/experience! Worth thinking about…
Interesting re feet neuropathy, isn’t it? Found it was scarcely mentioned/described in comparison with other chemo effects. No help and barely any acknowledgement from medics. It was, in fact, one of the worst aspects of chemo, so that I could hardly walk, lost my balance, and had constant numbness/pins & needles etc. especially in right foot. Have always been a walker so was really tough. On the plus side, and in direct response to your comment, once chemo was finished there was a definite, gradual improvement. 3 months on, still have some numbness in one foot and have to come down stairs like a 2 or 92 year old - very cautiously! But I can walk more easily and feel more optimistic re this aspect. Hopefully you’ll find the same![quote=“moonsox, post:49, topic:111198, full:true”]
Hi Clarissa1
I too am on Letrozole and Verzenios Abemaciclib, I started on 250mg but worked my way down to 50 mg, and now have an even balance.
I’m glad… i know that doesn’t sound right - but glad you mention Feet Neuropathy, i’ve only just realised this is what the dry feet with me actually is, but glad to hear there’s a chance mine will fade, and keep doing foot massages to try and resolve.
I didn’t have any bad negative side to Radiotherapy just very sleepy at the end. even now i sleep for up to 9 hours. My nails on my hands started to regrow but all my toe nails with exception of big toe nails that are not growing following the dropping off of the nail.
Being led to believe of the long term benefits of the abemaciclib i’m willing to continue for the 2 years, and if you get down to the 5omg level i’m sure your symptoms will improve and you also see the benefits.
We ladies are strong having gone through what we have, and this strength will continue. My sisiter has just completed her 10 years and is a great role model for me. So i wish you well on our journey, and offer you any sympathies you need.
Love and light, Mx
[/quote]
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Hello Andy. Did anyone ever reply to you? I’m not a regular on this forum. I just wanted to say how lovely it is for you to join this forum when it’s your wife who is ill.
It’s my understanding that if this drug is used for secondaries it will just be used for as long as it’s still working / still deemed as effective.
So, in theory, that could be 5 years or more.
I’ve chatted to people who have no evidence of disease even though they are still secondary, or with no progression etc for many years.
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Hello Moonsox. I was chatting in this thread ages ago. I think I chatted with you in this thread at the time.
Sorry I haven’t logged on for ages as I don’t really find it helps my mental well being that much spending too much time thinking about cancer and being on forums.
I started ambecaclib (which I can’t spell, sorry) in July 2022. I’m still doing ok with it. I still have mild fatigue with it 24/7 and have diarrhoea every 2-3 days. However, generally 2 Imodium have been settling it pretty quickly.
I read somewhere else (purely anecdotally ) that having jelly sweets like haribo was keeping someone’s diarrhoea at bay. Since I’m a big kid and a sucker for sweets I saw that as an excuse to try that out and (on occasions where the upset stomach has been milder) I’ve had a few haribo rather than loperamide and it seems to have settled it / I think I’m having major bouts less often.
I’ve put on a stone and a half I think roughly since diagnosis which I mainly blame on the medically induced menopause and ambecaclib (since I’m constantly a bit tired and trying to carry on largely as normal with my husband and 11 and 8 year old children.
So, for the last week or so I’ve been making healthier food choices (minus a few haribo) and have been exercising more as well.
I was starting to get pale and pasty (even my husband admitted when I mentioned that the colour had gone out of my cheeks) and I think I’m looking a lot less pale and more healthy already.
I’m still on the maximum dose (150 mg twice a day) and am hoping to do the full 2 years.
I think I’ve got off relatively lightly with side effects to this job. I really feel for the people having a harder time with it than I am x
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