Abemaciclib with filgrastim injections

Hi, so sorry to hear you're having a rough time right now, that must be so frustrating. You might think about giving the lovely folks here at Macmillan a call and chatting this through with them as they have lots of experience, you can call them on 0800 808 0000. Otherwise my response will also bump your post back to the top of the site and hopefully someone with a similar experience will be along soon. Best wishes. 

Cue the sound of crickets....... must be just me on this protocol then. Really struggling with this drug

Hi, sorry to hear of your struggles, sounds like a really rough time 

I'm on cycle 11 of Abemaciclib but not had the problems you are, but also not heard others mention this protocol either. (there are threads on here about abemaciclib)

Owing to the fatigue & diarrhoea, I had a dose reduction at cycle 8 to 100ng twice a day, which helped a little.

It really is a hard slog I agree

It might be worth asking about dose reduction as I know others have also had that to help ease side effects 

Best wishes x 

Thank you so much for taking the time to reply to me Kitty.  

Yes, continuing to have a rough day with it. Have just stayed in bed all day.

Definitely going to have to talk to medical team as this is not workable going forward. I thought it strange I was given those shots rather than a dose reduction . I am not scheduled for blood work for another 2 weeks so I don't know if that method worked.  

thanks for messaging as this is the first time I have come out of the woodwork to put up a question on the boards.

kind regards 

Ah that sounds horrible, hope you start to feel brighter soon

In the first few weeks my neutrophils did drop but not below the level that would have meant I would have had to stop taking abemaciclib. It did sort it's self out & my white count bounced back.

I guess the injections will help your count recover but hopefully won't be needed in the long term 

My oncologist was reluctant to reduce my dose from 150 x 2 but I just pushed as I was struggling. It has helped but things still not perfect. 14 months to go lol. I just hope that it works and I don't have a recurrance

I don't post much on here but is a good place to get views & experience of others. You will find other ongoing threads if you use the search function

Happy to "chat" again if that would be useful

Take care, Viv x

Hey Peony

Ive only just seen this message , I wish I’d caught it sooner because your story isn’t too far removed from mine ! 
I started Abe at the end of Feb , was only on it for a week or two when I developed cellulitis in my mastectomy area and my meds were stopped for 7 weeks ! 
I then restarted it but the nausea / heartburn and diaorrhea were so bad it was stopped again ! ( I was also prescribed a PPI ) 
I then had my dose reduced to 100mg x2 which has massively improved my side effects ( although still feel rough ) but my neuts dropped to 0.94 ! The oncologist considered filgrastim but then decided against it … told me to carry on taking Abe as usual and now I have Covid !! Seriously you couldn’t make it up I’m so fed up ! 
if my neuts are still struggling , she said I’ll be on the injections from my next cycle 

I hate that you’ve had a horrible time but I’m glad it’s not just me ! 
hugs xx

Thanks for the good advice Viv.

Like you I had a smooth introduction to it, but the more I stop and start the regimen the harder it gets.

I've managed to get through all the milestones of chemo, mastectomy and radiation and I guess it's a bit funny to be taken down now that I am "post treatment ".

I have been lurking on these boards since I was diagnosed but it was only this pill that prompted me to post a question of my own. (I had chimed in with my treatment experiences on other peoples posts before)

So being on Abe does not at all feel post treatment. I used to read about how unsettled patients would feel when their treatment was done and they were released to just get on with it. Frankly I was really looking forward to being suddenly "dropped" from the treatment -go-round. I was only told I would be on Abe once my radiation was completed and to realise it basically chained me to constant care actually pissed me off. When I get mad I go to pub med and read about the great results it gets and that calms me down.

I did make a late night call to the help line to discuss the situation but even this is hard for me as it takes me back to chemo days when I had the nurses on speed dial for emergencies.

Hearing from you gives me the needed hope to press on with it and the belief that this too shall pass. It's probably my expectations that I'm clear and so keen to get back to a full life that is making this hard.

To be fair the day before I crashed and spent the day in bed I had been out all day living a full life. An art course all day then off to Zoo Lates for a date night and late dinner. Over 20,000 steps on the pedometer. Maybe I need to slow it down a bit.....

Hello Dolly dimple,

Your reply is still very timely. I KNEW it, I thought the heartburn was from Abe and they just told me it wasn't part of the side effect profile. I never believed them. That was horrific episode. 
Thank you for posting because knowing that oncologists are considering filgrastim as a way to keep going is really helpful. I was wondering if I was just some sort of experiment as no one had mentioned it on here - just that doses got dropped if need be.

I did a covid test last night in trying to get to the bottom of why I feel so bad. Sorry to hear you have that too! I did get a bought of it during chemo - whilst my treatment was temporarily suspended due to low neutrophils. I felt ragged the first night and mentally worried (a visiting friend had just tested positive and so I suspected it though my test was still negative at that point.) So I was picturing it developing and having to be admitted to A&E but it all worked out of after the first night. I am holding the same thoughts for you!

I am with you, so frustrating to still find ourselves in the sickness camp when all I am keen to do if focus on building up my strength and health and getting back to living. Two years of life at half mast is not part of the deal.

Cheer
shannon 

Yeah, agree it's so hard, and everyone thinks I have finished treatment & time to move on. Those close know the fine detail.

I'm told to pace myself by thr Team looking after me, it's so frustrating but I've started to accept that as a way forward for now. 

I just taken early retirement which is helping as on days I feel rough I don't have to push myself 

Your day & night out sounds lovely but probably did contribute to feeling rough, it's soooo hard

Take care & try to keep focused on the end game, not easy I know x

Sorry to hear that you haven't been well and now have Covid.  Hope you feel better soon.

Daisy53