Abemaciclib - new starters Early Primary BC

[Abemified]

Hello

Eavesdropping on various forums has helped enormously through chemo, surgery, RT and now Letrozole, Resdronate and Abemiciclib. This thread is particularly welcome 🙂 so I thought it high time to start an account and join in.

I have been on Abemiciclib nearly 6 months apart from a short break when neutropenic and then for RT.  For me the big D started the first night after my first evening dose of 150mg.  I was up in the early hours with stomach cramps whilst it felt like the world fell out of my bottom, as a particularly humorous patient on a different forum aptly put it.  By the next day the Loperamide (which I believe is the same as Immodium 🤔), had kicked in but withina few weeks I was really struggling to leave the home without problems.

I now have more good days than bad on a reduced 100mg x2/ day dose, but only manage by a greatly altered diet .  I believe taking food soon after each dose is what has helped me most, as long as it is low fibre.  My Clinical Nurse Specialist previously worked in colon cancer and her advice to take foods containing gelatine has also been a game changer.  Not much help to vegetarians, and I feel bad now eating so many animal based products , but what can you do when the patient leaflet suggests avoiding cereal, fresh fruit and veg? Plus if anybody deserves the privilege of animal products it surely has to be us long suffering cancer treatment patients.

Thanks so much to all you strong women for sharing your experience and advice. It really helps so much to know what to expect and I take my hat off to all of you who have returned to work and/or continued caring responsibilites throughout.

We are so lucky to get this drug.

Good luck to all

Warm thoughts and hugs

Abemified 

[HelMas]

Dear Kate

l found your post really helpful as like you l had a grade 3 tumour and 3 diseased lymph nodes . I have just started Abemaciclib (3 days in ) and although l feel very grateful to have it l’m also a bit tired of taking pills and waiting for side effects . I am most apprehensive about hair thinning as l’ve just grown a buzz cut and ditched the wig ! 
As you are a few months further on than me it’s really helpful to hear how you’re getting on. 
My oncologist isn’t great at communications unless it’s written in front of him l feel very much like a number on a list ! 
Hope you’re doing well. 
Helen

[tappin]

This site is so encouraging! On another health forum recently, is a man with IBS-his wife says he has stopped working and stays in bed most of the day because of his symptoms!  My daughter, a vet, has PCOS, IBS, migraines and had very heavy periods until she was finally put on Spironolactone which has helped a lot. She holds down a full-time job whilst suffering all this!  Likewise, all you ladies, amaze me with your determination, sense of humour in the face of adversity, and are a credit to our sex!! Onwards and upwards!!

[Confused Meanderings]

I forgot to say the really good benefit is weight loss! I am a large lady with no will power and no particular desire to exercise and I've managed to lose just under 2 stone since August. All without watching the calories or exercising - brilliant! The oncologist is keeping an eye on it but I'm delighted! 🤣 Its happened because my appetite has decreased and I'm just not eating as much. I could have done that without the Abe,, but I didn't have the willpower!

[Confused Meanderings]

Hi

I am on the fourth cycle of Abe. No hair loss, but it does seem to have slowed down hair growth. I can live with that, although I can't wait for it to get longer and to have a proper fringe.. I do get very tired, but I think that is more to do with the Letrozole that I also take. When I first started taking them my liver function went down and I had to stop for 10 days or so and then restart. It was fine after that though. The big thing is the state of my bowel movements - I've got obsessed with them! The diarrhoea and stomach cramps were really bad at first but during the second cycle they started to settle a bit. Now I find that I'll get just a few episodes in a month. The issue I have is the notice I get of needing to go. Basically there is none - when I realise I need the loo, I'd better get there straight away, which has resulted in a couple of accidents (sorry if that's TMI!), hence the obsession with the state of my bowels! I keep well topped up with loperamide. Obviously I take it when diarrhoea threatens, but I also take a couple of tablets every few days, just to keep myself nicely bunged up, so to speak! That seems to do the trick. I have also found that cutting back on dairy has helped. I have switched to oat milk in my drinks. I do still use butter, but I have cut back on creamy things. I'll have a little bit of cheese every now and then, but I've found that really rich, creamy ones, like le roulé, will start me off. Sometimes I'll think sod it, I'll take the consequences though! I don't mind the taste of oat milk, the drawback to it is sounding like a pretentious idiot when asking for an oat milk latte in Costa!

[biddy k]

Hi i was like you very worried to start abemaciclib .I have been on it 9 days now and have been fine no bad tummy ,i have been going to the loo a bit more often thats it ,,  

[biddy k]

Hi i am starting it tomorrow .. did you know you can get the dose rejuiced to 100mg     and even 50 mg

[biddy k]

Hi i am the same as you i early BC i am starting abemaciclib tomorrow . My doctor said its not the same as chemo and the main side effect is a bad tummy ,, i have been told there is a 15% chance of my breast cancer coming back and this med will take it down to 11% ,,dosnt sound like much but im giveing it a go ,as i feel i have to give my self the best chance for my children . i will let you know how i get on 

what do you mean by DFS rate 

[MLT21]

Hi again……. 🙂

it’s been just over a month since last posting.  I’m glad to see that more of us are being offered Abemaciclib.  I have struggled with the initial daily dose (2 x 150mg).  My poor stomach had a terrible time 😔.  I was classed as having Grade 3 reaction to the drug, so stopped, recovered (minus 6.5kg 😁) and am now about to commence on the next lower dose recommended.  Fingers crossed, it makes a difference, as it can only be reduced once more after this.  I didn’t loose any hair except my eyelashes, which are now growing back.  Went off food generally, hence the weight loss.  I have been advised that if I have the same reaction on the lower dose then Abemaciclib treatment will be stopped!  Please don’t let my update put you off - that is not my intention.  I think everyone reacts to drugs differently.  I found EC easy and Paclitaxol harder 🙄.   Apparently, I am the only one receiving this drug at my hospital that has had this reaction to it……..

Keep us posted on how you are doing on Abemaciclib.  I will update you once I’m into my next cycle.

May any SE’s be minimal 🧘‍♀️😘

[LD2022]

Hi all

I’m having dose dense chemo at the moment and have 3 cycles of Paclitaxel left to go. I’ll then have radio followed by Abermamciclib, Zoladec and Letrozole. I’ve lost all my hair and felt pretty rubbish on EC before so when I saw the list of side effects for this drug I started to panic a bit as can’t wait to end chemo. Good to hear that Imodium is helping and hope everyone is getting on well xx

[KateFifties]

Hi

Can I ask what you decided to do, are you taking Abe?  Whatever you decided I wish you all the very best xx

[KateFifties]

Hi I've only just seen your message and wonder whether you are back to work next week?  I found I was very tired for the first couple of months on Abe, managed this by working from home every other day and napping for 30 mins in my lunch break.  Also for the first 3 weeks I worked from home as I had a lot of diarrhea and stomach cramps and was a bit worried about having to rush to a shared office loo.  But we're all different and hopefully you won't have this much of a problem!

All the very best with your return to work, hope you can have some flexibility as you get used to Abe.  Good luck with it all xx

[KateFifties]

Very glad you have had the opportunity to take Abe.  I haven't had any hair loss at all, hope that's reassuring.  Our newly grown hair is precious!  

Good luck with it all xx

[KateFifties]

Hi hope you've got some Buscopan and the Immodium is doing its job.  I don't go anywhere without them now just in case!  We're all different but I haven't had any hair loss at all on Abe and Tamoxifen, so hopefully you can carry on rocking your pixie cut!

Good luck with it all xx

[MLT21]

Hi there

Lovely to hear from you all.

I’m now on day two (first cycle), woke up at 3:30am with serious diarrhoea!  Ho hum….. straight onto Imodium.  Stomach cramps this morning.  I will get OH to pick up some Buscopan (thanks for the tip 😅).  Otherwise, everything else seems good.  I too am a little concerned re the hair loss SE reference now that I have a pixie cut. What will be, will be.  I have decided to keep a daily log again, so that I can refer back when I see the Oncologist.  I have a brain like a sieve sometimes or underplay symptoms 🙄.  

All the best everyone.  May we all be relatively SE free.

🫂

[niksstar46]

Hello 😊

I am so glad to have found this thread.  I finished active treatment in the summer and have been taking Tamoxifen.  My Oncologist recommended taking Abemaciclib and I am very grateful for the opportunity,  I think I am only number 3 in our NHS Trust since being approved. 

I have noticed a definite change in bowel movements but feel otherwise well.  I am only on day 4 of cycle 1.  

Has anybody noticed any hair loss? I am so worried about this (silly in the grand scheme of things I know!) xx

[frosty33333]

Hi all 👋

I am currently having monthly implants of Zoladex and taking Anastrazole tablets. I have been advised to also start the Abemaciclib, which I think may be from the date of my next appointment on 23rd. I was wondering how it would effect my work? Currently managing side effects but have been signed off until the end of November. not sure whether to ask for more time off to get used to this new drug? 

[KateFifties]

Hi

I'm so pleased to have found this thread.  I started Abemaciclib within 12 weeks of Tamoxifen and am now on cycle 3 (3rd month) of Abe.  150mg twice a day.  I had a grade 3 tumour with 3 lymph nodes affected so fit the criteria for 2 years of Abe.  I've had the same side effects as everyone mentioned here, the diarrhoea was horrible off and on for the first couple of months and also nasty stomach pains.  These have definitely eased off now and when they do occur I'm quickly on the immodium and also buscopan which my oncologist recommended for the stomach pains.  Also the low blood counts (I was tested every fortnight for the first 2 months, now monthly) and the need to be careful around infection.

I'm very grateful to have the opportunity to take a drug so recently approved for people in my situation, my oncologist said it could potentially have the same effect as chemo in terms of recurrence risk reduction.  At the same time I am really tired most of the time and find I get easily overwhelmed if I'm really busy at home or work.  Then the hot flushes start (think that's the tamoxifen though?!) It's not easy trying to keep the wheels on everything! 

I'd like to say hang on in there to everyone else on the same combo as me, it will be worth it.  Also if anyone has any tips for managing the fatigue or even just to tell me that needing a nap on the sofa after work is normal that would be great!  

[MLT21]

Hi Kitty123

Thank you.  I can cope with the diarrhoea aspect as I had the same SE with EC.  Imodium became my new best friend.  It’s comforting to know you aren’t experiencing any other SE’s.  My Oncologist wants bloods done two weeks before starting and two weeks after, then monthly, which is different to what Lilly recommends.  I will revisit this at my next appointment.  If you get time, please keep posting on how you are  doing on this drug.  Thank you again.

Take care.

[Kitty123]

Hi, I've just finished my first month of abemaciclib, & starting month 2. I'm taking Max dose 150mg twice a day along side anastrozole. I'm at high risk if recurrence so offered it.

Most common side effect is diarrhoea, I had about 6 episodes in first month which was easy to manage with a diarrhoea tablet. Hope this will settle going forward. 

Am being seen every 2 weeks for first 2 months with bloods too. They told me yesterday that my white blood cell count has reduced in month 1 but still high enough to continue. I guess this is where it is similar to chemo but isn't a chemo drug 

I'm hoping it really helps stop a recurrence but conscious I may not be able to take it for the full 2 years.

Hope this helps. Best wishes x

[MLT21]

Hi

I’ve been offered Abemaciclib for two years, as adjuvant therapy along side Letrozole.  I fit current criteria (re NICE and my Oncologist) to be offered this drug for early Primary BC non metastasis. I have had surgery (WLE), completed chemo and RT.  Recent CT scan NED, DEXA scan and ECO normal.  I thought I would start this thread as it is ‘new’ (post trials) to be offered on the NHS and would love to hear from anyone recently offered or taking this drug.   Everything reads like it is a tablet form of chemo, which is somewhat alarming, especially the SE’s!   Oncologist said that it gives you an additional DFS rate of 12 months and possibly more, although not guaranteed.  It’s my decision whether or not to take it, apparently.  So confused……….