Abemaciclib (Verzenio) - feeling miserable and depressed

Going through breast cancer treatment Targeted therapies
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Sorry to be whining - I am feeling so down and depressed. Have been on Abemaciclib since June 6. Suffering very unpleasant side effects like abdominal pain, stomach cramps and diarrhea. I get as many as 5/6 episodes a day. When I take loperamide, I am constipated.  What makes things worse is I have hemorrhoids and it’s really hurting down there. So there I am - flip flopping between diarrhea and constipation. It is so difficult to plan my days when the diarrhea hits as I have to be near the toilet. I feel so miserable. 

Can someone please provide some insight as to what my options are? Should I tell the doc that I wish to stop? I can’t go on feeling like this… there is no quality of life if I have to be sitting on the toilet bowl every 2 or 3 hours. Feeling low and depressed.

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Hi Sigi

sorry to hear you are feeling so low at the moment. All I can suggest is what I have tried and has worked for me.

My problem was constipation and I didn’t want to continually take tablets. So I changed my diet, which was quite simple really and not expensive either and I look and feel so much better, my complexion is glowing ?

initially it was hard because I was not interested in food or eating it, but I quickly saw the benefits of making a few changes. And I think it may have helped me to get back into preparing and cooking meals, as opposed to eating sandwiches.

as I said mine was constipation and still is if I go off track. I think eating apple can stop runny poo, if you do a bit of research I’m sure you will find something that will help.

good luck with it Siggi, I have been taking Palbociclib for two years now, and I think I have managed it pretty well now. Hope you get on top of it soon.

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@Siggi 

i am really sorry to hear your experience. I’ve had a few of those days and they’re really awful. 
I understand if symptoms are bad, there is an option to reduce to 100mgs or 50mgs twice a day instead or even stop, have a break and then restart. I read the symptoms were better after a break. Lots of options so don’t feel trapped in this hell. Do you have an oncology meeting coming up?

i really hope you get some relief soon

hugs

laura

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Hi Flora,

Thanks so much for your reply.  Am so glad that palbociclib is working out for you.  Hugs to you.

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Hi Laura,

Thanks for your reply.  Yes, I have an appointment coming up.  I guess I will know then what the Onc. will suggest.  Will keep you posted.  By the way, what dosage are you on now?

Hugs to you too.

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@Siggi 

I think its 150mg twice daily. Apparently they start at highest dose then work down depending on symptoms. Im only given 1 box/cycle at a time so at least monthly reviews if not going well in between. I also read that apple juice good to settle tummy-I’ll inest in some to try.

thinking of you

laura

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Hi Laura,

Meant to ask you with respect to the comment in your post below: “s_ymptoms were better after a break_”.  Do you know how long the break was?  I would be curious…

Hugs,

Siggi

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Hi siggi

I too have started on Abemaciclib but I’m only 7 days into it and I have started with the diarrhoea and the most awful stomach cramps. Just wondering if you found anything that has helped? I tried the loperamide but this made me constipated and very gassy. 

Think I might do a food diary to see if any foods are triggering the cramps and diarrhoea.

Hope you are feeling in a better place emotionally :heart: 

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Hi Amylou,

So sorry to hear of your adverse symptoms which were exactly the same symptoms experienced by me.  My diarrhea set in exactly on day 7.  Like you,  when I took loperamide, it gave me constipation but what I found the trick was to reduce the dosage of the loperamide.  Even though the instruction on the label  says take 2 pills (2 mg each), try just taking one pill (2 mg).  I had very severe diarrhea - as many as 6 bouts a day.  Yes, I find certain foods trigger the diarrhea, such as nuts.  On days when I had diarrhea, I avoid fruits and foods high in fibre,  and had to resort to eating white bread.   My WBC and platelets dropped drastically.  I suffer from abdominal pain everyday.  After 3 weeks of Abemaciclib, I took matters into my own hands and stopped taking the pills.  When I had an appointment with my onc , I told my onc I could no longer tolerate the horrible side effects.   I was told to take a break and then try a lower dose (100 mg).  I started on 150 mg.  So far I haven’t started on the 100 mg yet… am dreading it.  I don’t know how my body will react to the lower dosage.  But I can sure tell you that I am enjoying this break from the horrible drug.  Hope the above helps and do keep us posted of your condition.  Hugs to you.  …  

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Thanks for the detailed reply.

I’ve tried reducing the loperamide to just 1 tablet, which has stopped the diarrhoea but again I’m bloated, constipated and full absolutely full of wind ?. 

I’ll discuss all my side effects with the oncologist next week and see what they suggest.

Let me know if taking the reduced dose is any better for you. I sincerely hope that it is :heart:

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Hi Siggi, I’m sorry the side effects are rough for you too. Sending hugs.

I have been taking abemaciclib for 4 months now. The first 6 weeks were grim and I was taking 6 loperimide most days, (without it resulting in constipation!). I was offered a dose reduction but was in the process of trying diet and lifestyle modifications and wanted to give it a few more weeks. Also I had heard that it can settle after 3 months.

Of course everyone is different,  and I don’t know which of these things caused an improvement or whether things would have settled anyway…but now I only take an immodium on approx one day a week…so a dramatic improvement. 

The things I have changed:

I have given up caffeine.

I have made apples the main fruit I eat as I had heard they were settling.

I have started on actimel and also other fermented foods, such as kefir.

I have stopped going out first thing, as I find the peak risk of toilet emergencies is about 1.5 hours after taking abemaciclib. So I try to be at home and go to the loo in peace and without stress.

I have got a radar key so I can access disabled toilets which reduces stress for me.

I have taken note of someone who advised me that the stress of these side effects is significant, (not saying that stress causes them…the drug causes them, but the result is stress!). So trying to do soothing breathing exercises, as otherwise I can find myself stuck in a cycle where it is like my bowels were in spasm even though there was nothing left in there!

Also, I have taken a homeopathic remedy, which I realise hasn’t got active ingredients like our cancer drugs. But still…things have improved. 

Abemaciclib is such a powerful drug isn’t it, to cause these side effects. I had been thinking I was wasting my time trying diet things, as the diarrhoea is causes by the drug and I wanted to keep on taking it. But my experience has been that things have improved at around the 3 month mark, which happened to be at the point where I had incorporated these changes into my diet. I don’t know for sure what helped things change or whether they would have improved anyway, but I felt positive making these small changes and I will carry on with them. I hope the suggestions might be useful and I hope that the side effects settle really quickly for you.

Sending hugs xx

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@NorthernJay @Siggi @Amylou @Floral 

Hi,

I haven’t changed my diet but did find a difference mid way through cycle 3.

cycle 1, every 6 days approx terrible tummy, with 1 loperamide each time; cycle 2, every 3 days then in last week daily with 1-2 loperamide each time; same first week of cycle 3 and even had an awful embarrassing accident (luckily at home so could get cleaned up). By the end of cycle 3, I was down to maybe 2 diarrhoea/cramp episodes per week. I started cycle 4 on Wednesday this week and so far…

I find my diarrhoea comes about 1.5 hours after eating lunch or dinner. Went out for early pub supper yesterday then spent the next 3 hours back and forward to the toilet until loperamide kicked in. May just order cheapest thing on the menu next time…

this may be short lived, but seems to have plateaued at the moment ?

hope everyone else getting some relief

laura

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Hi NorthernJay,

Thanks for the useful tips.  Happy for you that you are working your way around Abemaciclib and things are going well.   Indeed Abemaciclib is too powerful a drug.  If only the pharmaceutical company can find ways to invent drugs without these adverse side effects…

All the best to you.

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Hi Laura/Amylou/NorthernJay/Floral:

Thanks all for your input/tips.  Yes, I find that foods or even drinking water can trigger diarrhea.  As an update, I started on the lower dosage of 100 mg 2x daily, today,  after 3 weeks break.  It remains to be seen whether I will have the same  symptoms  as when I was on 150 mg 2x day dosage.  My onc. told me that sometimes the symptoms improve after 3 months of taking the drug.   When I was on the 150 mg 2x daily drug, the loperamide only kicks in the next day, so, on the day when I have the diarrhea, I don’t get any relief.  Sigh…  Why can’t they invent drugs without side effects… and most importantly, how do we know the treatment is working?  Are there any tests to that effect?  

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Hi Laura
Not sure if i’m through the the laura which gave the tip of having an emergency bag with you, wet wipes, pads loperamide etc. i have now had to resort to this on days out, thanks. also the need to know where toilets are. I didn’t date the copy i took for reference, but am on cycle 2 about to start c3. i have D every 3 days, some warning are severe belly ache or repeated wind. I manage things in between and try to stay fit. not one food has helped or been rejevted by me other than my type 4 allergies. just spent ages trying to reconnect with you, and find this page again. This is not easy, so big hugs to you all and i hope to feel able to give tips in my next box as we don’t get space. or didnt in the old forum. Yes my WBC and other counts are dropping, they wanted to put me on Adcal I’m on my own Cal Mag, and D3 with higher mg/iu than their product. Theirs has Sacchirin - bad for you. My team not taking my allergies seriously, and get a shock when i send them a report.
My cycles have involved having the tablet twice a day, so gues if i’m to drop to 50mg it will be the same. i did have a short break end of cycle one, and suspect i’ll get another soon. Adapting seems to be the4 name of the game and knowing your specific reactions helps.
Take care and keep in touch. Moonsox

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Hi @moonsox
That was indeed me.

Im now on cycle 6 and I wish I could say the side effects are better…

Just to make you all laugh, i had to break into a public toilet toilet roll holder today. Just had one of my post abemaciclib visits, in a bit of a rush, sat down mid flow when noticed altho there was toilet roll in the holder, it had been ripped low down and not enough to grab out the nozzle thing. I desperately tried with end of my fingernails but nothing coming. I searched my pockets for tissues-nothing.
I knew I had to wipe. Without being graphic, anyone on abemaciclib know you need toilet tissue (and shower ideally!) so i did find scissors in my pocket-no good for wiping but very good for picking the lock on toilet roll holder :rofl:
So, in your emergency bags guys, please pack tissues/toilet rolls and possibly scissors :rofl::rofl::rofl:
Only another 18 months to go…

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Hi
This may or may not get to you, i’m going round in circles trying to access the new forum. i have replied but now cant find, ah well.
Basically i’m struggling with cyckle 2 week 2 being the worst for needing the loo, prefer those diasabled loos which have own washbasin. After blocking myh own loo… messy and having to compromise, so glad found the first today with handle to flush, the button variety - forget it!. I’m so glad i have found the right Laura and look forward to reading your progression, to date you have been a great comfort, so many many thanks.
I get my brief chat with oncologist tommorrow, concerns low counts, WBC, BP etc. My friends have nicknamed me ‘Pale Face’, quite amusing. but the lack of sleep and awful lower belly aches, most of the time hard to get used to.
They want me to go on Adcal, but one ingredient is Tutti fruiti - oops someone forgot to check my allergies I’m allergic to 3 fruit groups. I’d prefer to stay on my own D3 at 5000iu, instead of their 400iu, and Cal Mag, which is better for the body than calcium alone. Thats going to be an interesting sentence.
I hope you all have a good weekend, making the most of any dry points, humour or chance to get out in the fresh air. lol xxx

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Here goes, again not sure if this will get through and i can’t find any other entries. I got a well earned holiday break last week. but am back on the 100mg this week, and belly aches daily. nor knowing when to rush or just walk to the loo. i can relate to breaking open the toilet holder. but indesperation i’ve even asked the person in the next cubicle to pass under a wad.
Do you find any food makes a difference. the rule book infers avoiding vegetables, and then only eating fruits. but i just ignore as i found that information of no use during chemotherapy. I look forward to hearing more of your news, if that is, i can find how to reply, and where to find the main entries from othersw apart from yourself Laura R and Julie 1998, xx

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Hi Moonsox ,you’ve replied in the right place ! You have also somehow send me a message I presume you were trying to send to Laura ? The new forum is quite a challenge isn’t it !

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Hi,
I’m going to say this quietly but I do seem to have less tummy upsets with course six.
If I have diarrhoea, I sometimes hold off loperamide to see what happens and often that’s me for the day-no med needed.
I have days of no upset tummy at all, but some days of several visits, need to go urgently and loperamide needed.
I haven’t taken more than 2 loperamide in a day though and that’s rare-normally only need 1.
I also find that when it’s worse, or cramps come, I am able to emotionally deal with it better because it’s not as often and I’m getting breaks in between.
Still on 150mg twice daily.
Bloods so far, doing okay-now on 3 monthly reviews.
Haven’t changed my diet or cut out foods. Lost my appetite a bit and eat much smaller portions but try to eat fruit and veg where and when I can.
I’m not sure if this happens for everyone but hopefully it does if we hang on in there. Hope all my fellow abemaciclib friends are getting on okay. Hugs to all
Laura

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