Abemaciclib - new starters Early Primary BC

Going through breast cancer treatment Hormone therapy
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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……….

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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

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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! 

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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? 

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Hi

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

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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

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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 

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Hello all,

I’m 44 and was diagnosed with early BC last October. ER+ PR + and with one node involved. Grade 3 tumour 19mm. I had lumpectomy and lymph node clearance followed by 7 rounds of adjuvant (preventative) chemo (3 x EC which was extremely hard, and 4x Paclitaxel which was easier). I had 3 weeks of radiotherapy and started tamoxifen 2 months ago. Been on Abemaciclib for 2.5 weeks and first round of blood tests was good.

Overall I’m doing well. I wanted to share my experience so far of abemaciclib and tamoxifen. I was really scared starting them as I am likely on tamoxifen for up to 10 years and Abema for 2 years.

It seemed like a tall order and I was scared reading about side effects but so far I am tolerating them ok and I feel we need to pass on positives on these threads - for those feeling intimidated it may not be so bad… of course it’s early days, but I am grateful that we have this protection against recurrence and for me…it’s not so bad.

The main issues I have had are:

Hot flushes

They started with the end of chemo and were pretty unbearable; I went on a low dose of the SSRI (anti-depressant) sertraline which not only helped my anxiety but cut the hot flushes by 3/4. I would readily recommend this to any of you who are suffering with the hot flushes but who can’t take HrT.

I am also taking sage supplements every day which helps.

Achiness and fatigue.

The fatigue is tough - also it’s hard to know how much is from chemo, radio etc and the build up of all of that, as opposed to these meds….but I am taking lots of supplements which seem to help:

  • glucosamine
  • b6 and b12 vitamins
  • sage
  • vitamin d
  • cod liver oil
  • biokult*

Gastric upset

So the Abemaciclib is known to cause diarrhoea. My oncologist put me on 100mg from the outset and said that basically all her patients end up on this dose because of the gastric issues of taking 150mg. She is adamant that 100mg twice daily is equally effective and sees no reason to increase the dose. So I wanted to share that info if you are suffering from gastric problems and are on 150mg it may be much easier to take 100mg and you should ask your oncologist .

  • biokult or a probiotic has definitely been helping my tummy. I am also eating kefir and things like Kimchi which is quite good at lining the gut (and cutting back on dairy)

negative response to Alcohol

So drinking any amount of alcohol really doesn’t agree with me on these meds and makes me nauseous- wondering if anyone else had this reaction? There are amazing zero beers to try though!

Strategies for fatigue:

I have really seen that exercise helps the fatigue and achiness - does anyone else feel 90 years old in the mornings?!
Stretching, running and boxing has been amazing, as has dancing. The high intensity interval training type exercise has had an amazing effect in stopping the aches on the days that I do it. I am swimming at least twice a week. Of course It isn’t always easy to make time for oneself.

And it is easy to overdo it and feel exhausted so I am still figuring out what the right amount is. Psychologically I have found that working on strength and conditioning is a really good thing, something I literally never thought about until now.

I’m wishing everybody well. All this is hard and sometimes I feel very lonely… despite having lovely children and family…good to know you are all out there.

I hope anyone starting these two things will be encouraged.

Take care, Alex

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Hello Alex

I hope you are doing ok on abemaciclib. I just started this today on 100mg! I had loose stools this afternoon but took a loperamide and I have taken my 2nd tablet this evening. Your message is very helpful so thank you! I am wondering how you are getting on now?

I am also on Zoladax and Letrozole and am 43, I had 4 tumours all ER and PR positive, 1 grade 3 and the others grade 2. I am struggling with the side effects of zoladax stopping my ovaries so may ask about Tamoxofen but I think I’m coping OK with the Letrozole, but you have to be menopausal to take it, hence the zoladax injections… How did you going tamoxifen and are you still on it now?

Thanks. Natalie x

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Dear Natalie

Very nice to meet you and I see we are the same age. Glad you are doing okay on Abemaciclib. I am now in week 6 of it and I definitely wouldn’t want to be on a higher dose than 100mg twice daily. Remembering to take it at the right time is important- I went out the other day and delayed taking it by 2 hours and (perhaps coincidentally?) had a tummy upset for several days after.
Anyway it’s ok, but I have less appetite on it for sure.
Tamoxifen is going really well, I’m in Month 4 now.
The only thing is that I do get overtired, although I don’t know if it’s because my work involves a degree of stress and I have kids etc…and life is back to normal!
Because I had to do chemo I think I have been catapulted into menopause. I haven’t had a period since February but I expect if they come back I will be going down the same route as you.
I heard that Letrozole can make you achy. Try glucosamine, it dealt with a lot of my achiness - and the vitamin cocktail I talked about in my last post!

What are the symptoms of the zoladex? I wonder if what you’re experiencing is indeed the same kind of thing as I’m getting. Hot flushes etc? The sage and the low dose of the SSRI have been hugely helpful reducing this.

I do get the hot flushes but not quite as badly as before. Hot places trigger them…I bring water… water spray is good (like the Evian sprays in the chemist which I always used to roll my eyes at!!!) and I don’t wear any synthetic fabrics if I can help it.

Try and make time for you to relax- that’s been the hardest thing for me! I hope you are doing ok emotionally. It’s been almost a year since I found the lump and yes I am in remission and doing the first year checks…kind of anxiety inducing to recall how it was a year ago. But we move on. And remember you are protected, monitored and in safe hands! As well as being on pretty damn brilliant meds. X

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Hello. Nice to meet you too. Nice to meet someone a similar age as me going through this!

Thanks for all the advice. I am taking glucosamine, magnesium, calcium, and a menopause supplement as the Letrozole does give me joint pain and aches but I just try to keep moving. The zoladax has thrown me into the menopause too :frowning: I wake up every night in the noddle of the night and I was such a great sleeper before. I also get the hot flushes but I think the supplements I take and evening primrose oil helps? I am due to start zoledronic acid bone infusion injections soon too…

I have been on abemaciclib for 4 days now and had slight loose stools the first day and felt a little sick this afternoon but so far not too bad :crossed_fingers: My Oncologist will obviously monitor me and may want to up my dose but I will obviously ask lots of questions about this and weather 100mg is ok for me for the 2 years.

How are you finding it emotionally? I find it’s hard and I feel like a different person. I have gained weight and am quite slim so that’s hard for me and I hope it stops or stabilises :crossed_fingers:. Have you gained any weight? My Oncologist says I can always change to Tamoxofen but I am unsure if this was with zoladax too and will ask him next month when I see him. I am on hormone therapy for 7 years so I will be nearly 50 by then! I just wish we could take HRT!!

My hospital have been good and recommend a ‘Hope’ course for me for 6 weeks with other ladies so I am going to try that next week and hopefully it’ll help. I think it’s nice just talking to other women who are in a similar situation as you.

Have you ever missed a dose of abemaciclib and did that affect you? I know the 12 hour rule and use Alexa as my reminder :rofl::raised_hands:

Take care.

Natalie x

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Hey Natalie,

The emotional side has been the hardest of course because it’s really scary. I am triggered by certain things, like hearing about cancer and of course the 1 year scan. But I also feel that I have come out of a tunnel and that to some degree it’s behind me. Of course it’s not exactly but the grave threat isn’t there. I think I feel this way due to the protection we are lucky enough to get on these hormones and targeted therapies. They have a great success rate! But of course we are still having therapy and it’s a marathon. I think I will be on Abemaciclib for 2 years and Tamoxifen for 10. (I assume switching to Letrozole once I am firmly in menopause).
It is hard to contemplate that we will indeed be entering our 50s once we stop…but I am not so overwhelmed as I was; because I think that most of the side effects can be tackled and dealt with…exercise made a huge difference to me.

I did indeed miss a dose but only by a few hours. I noticed that it upset my tummy further but I just took it when I got home (I had forgot to take it with me on an evening out) and then counted 12 hours for the next one…then sort of spaced them out to the normal time. I take them betwen 7 and 8pm and 7 and 8am and use my IPhone to remind me (health app, medication section!) it’s actually quite useful as I log every day what time I took the meds and it keeps record!

I haven’t gained weight, I actually am a little on the thin side which I don’t particularly like. I think it may just be exercise and a certain degree of stress….adrenaline. Just give your body time to adjust and I am sure you”ll recalibrate. I definitely feel and look different but it’s no wonder. 5 months ago I had no hair!!!

I can really recommend Daniel field for hair and skin products. All designed for going through cancer treatment. Thanks to him I have a pelt of hair! And he has a scalp detox treatment which I do once a week which helps stop the hormones affecting the hair…

So glad you are doing a course. Not sure where you live but there is also the wonderful “future dreams” house, only dedicated breast cancer centre in the country (in london kings X) and people come from all over to do workshops there.

I do think I was really achy and fatigued when I started these therapies but it has got much better.

If you can crack the sleep issue that would be great because I have noticed that getting 8 hours a night makes the world of difference….I know It’s hard with the hot flushes. Have you tried the sage supplement “menoforce”? It really helped Me.

Keep in touch and take care! I think I am learning the meaning of “be good to yourself”, it didn’t come naturally to me!

Hugs,
Alex

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Hello Alex

Apologies for the delayed response, my children and work have kept me busy!
Thanks for the recommendations! I hope I don’t suffer with any side effects from abemaciclib as I am doing ok so far but it’s only day 5…

I love in the North West area. The course I did today was very good and nice to meet people in a similar situation. I was one of the youngest ones there though! :frowning:

I am trying to keep active and positive and hopefully as you say it’ll get easier in time…:crossed_fingers:. How long have you been on tamoxifen now? I got sage today so thank you. Did you clear this with your Oncologist? I am talking evening primrose oil too but conscious that I am taking many supplements! I will discuss it all with my Oncologist at my next appointment.

Keep in touch and hopefully we both will be ok in our treatment. I may end up on tamoxifen myself but need to ask how long he wants me to be on zoladax for and about the zoledronic acid bone injections.

I am definitely feeling more positive after my course and know that we can’t change anything but can try and move on positively and hopefully get on with our lives after a terrible diagnosis!

Natalie xx

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I forgot to ask where did you get your Daniel Field scalp treatment from and do you think this protects your hair and hopefully stop any loss on abemaciclib and Letrozole?

Thanks.

Natalie x