Abemaciclib (Verzenio) - feeling miserable and depressed

Hi moonsox,
Ever since I started the reduced dosage of the Abemaciclib to 100 mg twice daily, I no longer suffer from diarrhea for which I am thankful. My abdominal pains have also reduced to almost none. But what I am beginning to experience now is hotflashes. I had these hotflashes when I first started Letrozole; after 5 months of Letrozole, the hotflashes stopped, now they are back… I queried my onc about this. Was told that hotflashes could also be triggered by stress, spicy foods… I echo LauraR’s kind words - I too wish all my fellow abemaciclib friends well. Strength to us all.

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I’m just finishing ,y 1st cycle and reading these comments feel like i have found my tribe. The cramps, diarrhoea and constipation really are horrendous. But what is as bad is my recently returned eyebrows and lashes have started to fall out. I know it’s vanity but the last 9 months of no hair made me miserable and the thought of 2 years like this makes me want to throw the damn tablets in the bin. Has anyone else experienced hair loss?

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Hi - i went down to 50mg twice daily to lessen the side effects. I was told its the frequency of taking it not the doseage amount. Not sure what your dose is but my side effect on 50mg is chronic fatigue, no stomach issues

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Hi Abemiciclib folk

Really feel for you all, especially those on the high starter dose and/or with caring responsibilities and/or demanding jobs.

I have been on Letrazole, Abemiclib and Bisphosphonates for a year now. My dose of Abemiclib has been gradually reduced from 2 x 150mg, to 2x 100 mg and now 100 mg morning , 50 mg evening. I found the urgency re: emptying bowels extremely difficult to begin with, and can relate to earlier posts about public toilets in which you can see, but not access, the toilet paper, when the roll holder has kind of eaten it :grimacing:. I now always take care to leave at least 6 inches for the next person to get hold of.

Life is a lot easier now but only because I have cut right down on fibre and eat jelly, marshmallows, bone stock and/or sweets containing gelatine, every single day. Otherwise my new staples are yoghurt, tofu, fish, chicken and cheese, lots of potato and white bread, rice or pasta.

I take precautionary loperamide on days when I know I may be limited on food choices, for instance when out and about. Otherwise I restrict my fruit and veg to tiny quantities. An orange will be set in jelly and then eaten over a course of days and I tend to only eat carveries when out for dinner so that I can restrict to just 1 sprout, 1 piece of carrot and a tiny piece of cauliflower or cabbage or similar. I have jelly, or a sweet containing gelatine, after each dose of Abemiciclib.

I am putting on weight and have had to have some short breaks from Abemi for various health or treatment reasons, for instance radiotherapy and 3 weeks before pending reconstruction surgery. At such times I really enjoy a gradual return to my previous, mainly vegetarian diet. I think it is worth persevering if possible. Anything to increase chances of not ever getting secondaries. My neutrophil count has been better since I resigned to such a seemingly unhealthy diet and I was much better when on holiday and had time and space to do long walks in safe tourist places.

I know everybody is different but hope the gelatine suggestion may be of help. A word of warning though, any foods or drinks with sweeteners can set off the runs with me. I find home made chicken stock the best source of gelatine. In other cases have to carefully check ingredients at purchase.

The months pass quickly and doses can be reduced. I cannot wait to come off it for good, all being well and it’s great to hit the half way mark.

Keep going if you can.

Abemified

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Hi all, I’m so glad to have found this forum as it seems to be one of only a few on the whole internet, the rest being other chats here on Breast Cancer Now!
I wanted to share my experience basically just to get it off my chest, but I hope anyone reading this is not actively put off taking the medication; it really is worth taking it to stop the horrible disease from returning.
I am having a really rough time with Abemaciclib. I’m into my third month of treatment with it. I had to have two weeks break due to neutropenia after the first month, and then one week break after the second month again because of neutropenia. My neutrophil count seemed to recover more quickly the second time around but my oncologist decided not to reduce the dose which was very disappointing. I’m still taking 150mg x 2 per day, along with Letrozole x 1 a day and Zoladex pellets every month.
The hot flashes began while I was still having chemo so I’m managing them ok, but the initial diarrhoea from the Abemaciclib was such a shock to the system! I’m normally slightly constipated, diagnosed with IBS, so the sudden urge for having to run to the bathroom was a lot to get used to. After restarting my second round, I misjudged the onset of the diarrhoea and was caught short while out shopping. I was only about 15 minutes from home and tried hard to ‘hold it in’, which was very painful and made my heart race and sweat pour out of me. I didn’t try going into any local pubs or anything as I thought I could make it home in time. Well, I had to duck behind a bush half way home and made such a mess of myself, it was utterly traumatic, and then I went really light headed once I started off home again, I had to sit down on the floor until my head stopped spinning.
After that, I now take 2 loperamide on the onset of the diarrhoea, they keep all bowel symptoms at bay for 48 hours so at least that is predictable and keeps me comfortable for the whole time they’re working. I allow it to lapse on the second day so that I don’t get all backed up and cause further discomfort due to constipation.
I have not found dietary changes make any difference at all. I used to find corn, rice and eggs exacerbated my constipation but now they don’t make any difference at all. At least I can eat popcorn again! I’m vegan so don’t have eggs anyway now. My appetite has significantly reduced on this medication, I can start eating something I really looked forward to and suddenly I find it not at all enjoyable, and it feels like food isn’t going down and digesting as it should. I have increased vitamin supplement intake to support me while I’m struggling to eat.
The worst thing I’m finding with this medication is the extreme fatigue and physical weakness it is causing. It is worse in the second two weeks of the month. I get very dizzy and faint so that I have to sit down, it’s making me very nervous about leaving the house. I’m guessing this is partly due to the neutropenia it keeps causing.
Today I missed a face to face counselling session and in reply to my cancellation email, my therapist suggested calling the chemo unit to let them know this is what’s going on. I hadn’t thought of that because I have felt like this previously and still my oncologist has not reduced the dose.
I have my blood check up next week but I think I will call them tomorrow and start making noise about getting my dose reduced; I can’t keep doing this for two more years. I know two years pass very quickly but I feel like all I can do is sleep and it’s a Herculean effort to get anything done. I am pretty stubbornly independent and live alone, with my elderly cat, and that’s how I like it, but this medication is making it feel very difficult to do anything let alone have any kind of a life, or quality of life. Luckily I do not work (my project-based job ended shortly after my cancer diagnosis and I knew it would be pointless to job hunt while going through the various treatments) but I marvel at those who are able to work while taking this stuff, I can’t even imagine being able to do a few hours a day never mind full time or part time work! Hats off to those of you who are!

I really want to continue with Abemaciclib due to its beneficial effect, and do not want to sound ungrateful when I know there are people taking it because they have Stage 4 cancer and it gives them more time, I just didn’t realise it would make me feel this rough.
I really hope others aren’t going through this as I am, it does sound like most of you posting here are coping better than I am and I sincerely hope that continues for you <3

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Hi all you lovely ladies, My consultant has mentioned about me taking part in the trial with Abamaclecib so will know more soon.
Interesting to read all your comments and advice for each other giving me a good insight to know what to expect! Also will be on the Letrozole and maybe Bispophonates if eligible!
Does it affect any of you ladies in your workplace? Although I’m off work at moment I was just wondering does it have a massive impact on your work as I am an nhs worker and work in a sterile area with chemotherapy drugs so not easy to leave the area at short notice due to changing procedures too and no on site loo!
Just wondering and I can work in other areas if this is going to be a real impact with the loo?
Only looking forward to the future and will deal with effects like you ladies are!
Many thanks for reading this and a good insight.

Good luck to you all and hope side effects settle xxxxx

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Hi @Readey,
Very best of luck with starting the treatment. I would personally suggest to, if you can, stay off work until you have an idea how your body will react to the treatment. Everyone seems to react a little differently so it might be best to avoid the pressures of work until you know how to manage any side effects, for example if the loperamide (imodium) works well for a predictable amount of time.
The lack of on site loo sounds like a real challenge without the help of effective loperamide. Depending on how your body reacts, it might be worth moving to a different area with close by facilities if you find the loperamide is not predictably effective.
All the best and keep us posted :+1:

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I was told at the Christie Hospital in Manchester that it made no difference overall whether I took 150mg x 2 pd or 100mg x 2 pd so I’ve been on the 100mg dose for six months. Rather than diarrhoea I have constipation which feels like I’m trying to pass a bowling ball. I had some slight diarrhoea initially and took the Loperamide as instructed. I ended up with faecal impaction and had to take 8 sachets (yes eight) of Laxido to sort out my bowels. I am a full time power chair user so can’t ‘run’ to the loo. I have to get on my powerchair so I have to try and keep a balance. Good luck to you all x

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Hi dimples2,
You indicated in your post that you were told at the Christie Hospital in Manchester that it made no difference overall whether you took 150mg x 2 pd or 100mg x 2 pd - what does this mean? Does it mean dosage doesn’t affect efficacy? I started on 150 mg 2x daily, but it gave me horrible diarrhea so my onc reduced the dosage to 100 mg, 2x daily and I have been on 100 mg 2x daily since this July. The diarrhea stopped but I still get occasional abdominal aches To my peers who are taking abemaciclib, do you think this drug works or buys us more time? I know there are clinical studies that abemaciclib does offer benefits, i.e. reduce risk of recurrence. But how do we know or find out if it works? There ae times I worry that I am taking a toxic med that may potentially not work but on the otherhand, adversely affect my health. Sigh… appreciate your thoughts/input.

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hi Siggi - well my understanding was that taking the drug regularly was the important thing and that it was just as effective at 100mg as 150mg. They’d told me that lots of people had to reduce the dose because of side effects which made me think why don’t they start people on a lower dose and then increase? Anyway I’m still on the 100mg and happily don’t have the awful diarrhoea that others experience. I suppose it depends on your starting point - because I had polio as a baby my digestive system has always been sluggish and I need Laxido to keep me ‘going’. Hence when I took 2 loperamide it was catastrophic for my insides. We’re all different and we just have to trust that our health team know the best way forward. I feel like I’ve done a degree in breast cancer and often just want to try and forget about it and hope for the best. Good luck to you Siggi

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I work in a hospital where they run it as a trial and they have had really good results with the drug that the cancer has not returned?

I am seeing the consultant on the 16th October so will be asking the questions as side effects sound horrible for a lot of ladies in the treatment!

Take care z

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Thanks Beck and I didn’t sleep last night think the steroids and my mind overplaying everything?

Yep that’s what i thought work wise because I definitely couldn’t manage doing that job as in a sterile unit and takes at least 10 minutes to get changed as all gowned up as make and check chemotherapy products.

Will keep you updated and Thankyou and wish you well xx

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Hi Readey,
It would be great when you see the consultant on October 16 and ask about the “rebound” effect, i.e. perhaps Abemaciclib does do its job in keeping the cancer at bay as long as we are taking it; but what happens after we stop this med? Please let us know what your consultant’s thoughts are… thanks so much.

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Yep steroids can really kill off any hope of restful sleep quite apart from the worry and anxiety that goes along with this process.
When I had my chemo treatments I was given a steroid and an antihistamine and they would sort of cancel each other out with the sleepiness of one and the stimulant of the other, but I remember it actually giving me a bit of a buzz effect :face_with_hand_over_mouth: When it all wore off was when the crash would kick in though! I was only given take-home steroids for the first three rounds, the epirubicin and cyclophosphamide cycles, and weirdly didn’t experience any effect on sleep with the ones I took at home even though it was the same drug as they gave at the hospital. I’m something of a night owl though so maybe my already messed up sleep pattern cancelled out the effect!
Your work sounds so interesting and I guess it gives you a behind-the-scenes look at the medications you are given for your treatment. Being gowned up does sound like it could be tricky if the diarrhoea situation arises, but as I say the loperamide might well help you to manage it during your work hours if you feel otherwise ok.
I look forward to hearing your consultant’s thoughts on it :+1::hugs:

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Hi again

Just want to express how much I appreciate all the knowledge and shared experience on this thread. It is so validating to know I am not the only one with bad experiences re: accessing toilets. Beck I can totally identify with yours. So traumatic and the more we put our stories out there, the more others may understand this kind of invisible medical disability. Even cancer nurses don’t necessarily know what it can be like.

I have to confess I tend to put a positive gloss on my life on Abemiciclib. Not sure why. Perhaps something to do with not wanting people (including myself) to think I am not coping.

I also live alone and had bowel problems (constipation and diverticulitis) before diagnosis. I had horrendous constipation on FEC, then needed to stop daily Laxido on Taxotere and now it is all different again on Abemiciclib, which is by far the hardest to manage of all, but difficult to explain to others without feeling like you are whinging or exaggerating. I think some aquaintances literally think I have a mental health problem with leaving the home, but that is not it at all and the practical problems of needing to be near a toilet at all times are life changing.

Big thanks to all of you. Just helps so much knowing I am not alone and learning from others.

Agree totally that working in a controlled aseptic environment without immediate access to and from a toilet would be extremely difficult, if not impossible. Really hope an alternative can be found Readey, or that you can get PIP and ESA to tide you over financially without having to return yet.

Best wishes to all

Abemified

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Hi Victoria1

Yes I have experienced hair loss. Everywhere except back of my head, neck line and bum unfortunately.

Not had any eye lashes since chemo.
Got very thin light coloured eyebrows and thinking of having some stenciled on, which is totally out of character for me!

Always had hair so thick that for a while after it grew back after chemo, I could get away with using clippers all over, saving me hairdresser costs and it looked great. It is only now , after a year of Abemiciclib, that I have had to let it grow longer for a proper professional, rather thin, pixie cut with a fringe to cover very slowly receding hair line at the front. I will be coming off Abemi in prep for an operation soon, and hoping the break will slow down the hair loss such that I won’t have to go back to a wig or chemo cap.

As far as the head is concerned, it is very slow hair loss, nothing like the complete loss I got after first ever FEC. I am at an age where my eye lashes were getting shorter in any case but still miss them and am glad to cover up eyebrows and eyes with large glasses.

Hopefully yours will grow back when you come off Abemiciclib but not sure mine will x

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Hey Abemified, yes I can totally relate to not wanting people to think I’m not coping, even though really I’m not coping so well at all!
Since my public toileting disaster I invested in a couple of cards indicating my urgent toilet needs, one is from Macmillan and also comes with a little key fob version, and one is from Vivactive, I got it with a Radar key. I’m hoping that should the need arise again these cards will give me greater confidence to ask at shops, pubs, restaurants etc…
I thought about getting a sunflower Invisible Disabilities lanyard too but am still deciding on that.
To be honest I was never much for getting out and about anyway, being more of an indoor cat, but I never thought I would stay indoors and sleep quite as much as I am on Abemaciclib! I didn’t like the sound of it when my oncologist first mentioned it and almost refused but I feel like anything is worth a try for the chance of preventing the nasty disease from coming back.
Having said that, this medication is proving almost as much of a challenge for me as the chemo, but different because the idea of going through this for 2 years is horrible, at least my chemo treatment was only 5 months. I was so terrified of chemo when I was first diagnosed, I had no idea I would be looking at 2 more years on an almost-as-bad drug!
I requested a dose reduction from the chemo unit yesterday, the nurse said she would pass this along to my oncologist and I hope she agrees or I think I may start having to throw my toys out of the pram! Based on what others have said about their dose reductions and the importance of just taking it twice a day regardless of dosage, I do wonder at my oncologist sticking so firmly to the full dose for me.

Thankfully so far the hair loss hasn’t been dramatic. The front of my hair along the hairline has struggled to grow back as quickly as the rest of my hair since the chemo, and I feel like that is even more the case since starting on the Abemaciclib. I truly hope I won’t need to return to the head scarfs but if I do, so be it. The worst thing was losing my lashes and brows on the chemo, I didn’t like seeing myself in the mirror without them and wouldn’t go out without make up on to make me look more like myself.

So sorry to hear that you and Victoria1 have gone through the hair loss again. There really seems to be no end to the torment does there?!
Sending all the best to you and to all :hugs:

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Hello Readey :wave: xx

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Hi moonsox, apologies for singling you out but I am having difficulty posting on the forum and your thread is so relevant. To all tose on abemaciclib for early breast cancer high risk recurrence. I typed ‘latest news abemaciclib’ into google and found a two day old post from eli Lilley giving latest five year stats. Its well worth a read and positive news…we all need some positivity while taking this good but challenging drug :wink:. Sorry i cant put up a link either but google search as above should take you too it.
All the best everyone x

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Hi Caroleanne
Thanks for getting in touch. I too am having difficulty replying to posts, bcn have sent me links but the recent ones don’t have the option to reply, and i haven’t the time or understanding how to achieve. the former forum was SO EASY, this system is not.
I’m now on 50mg verzenios, and just about coping with symptoms, the ‘squits’ have stopped, the headaches and tiredness not, i do keep a meticulous diary - i need to with type IV allergies. I tried to get back to a post re taking herbal supplements. [pebbles51]. When i broached the subject with my oncology team, seemed i knew more than they did, subsequently the calcium adcal has been wasted on me, because of the fruttie flavour and lower thean supplements i’m already taking. Earlier my chemotherapy oncologist advised me to stop taking all which put my health back negatively, so glad got main ones back on board.
I eat healthily, but our soils are depleted, and i can’t afford organic except for the food i’m learning to grow. I take, Cal Mag ratio 2:1 400 cal/200mag. Evening primrose 2000mg per day, Cod liver oil 1000mg pd. D3 5000iu, multi vit and acidophilus.
My mental health is helped with reiki and being around animals, fortunately i work with horses. and i ensure i walk 3 miles per week at the mo. sorry if this reply a little jumbled, but the box doesn’t allow for me to check back easily, and is so small. feel free to keep in touch, and thank you xx.

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