Verzinio ambleclib long term effects

Hi FE1

Welcome to the forum and sorry to hear that you have been diagnosed with breast cancer.  While I don't have an answer for you I noticed that you haven't had any replies yet so I thought I'd reply to you to welcome you to the community.  This reply will move you to the top of the discussion.  Hopefully someone with the experience you are looking for will be along shortly.

Best wishes

Daisy53

Hi, I'm at the same point as you, start cycle 13 on Friday, I'm very fed up with all the side effects, it's a struggle and I cant live the life I want to. I really feel for you 

I had dose reduction month 7 to 100mg twice a day which helped a little.

 Took early retirement in June at 55 as I couldn't work taking abemaciclib, anastrozole & 6 monthly Zoldronic acid infusions

It's tough going, I just hope it does the trick and I don't have a reacurrance. 

Best wishes x

Hey 

I’m only on cycle 8 ( I think !) and it’s a hard slog ! I am on 100mg x2 now and it’s helped a bit like Kitty says but the side effects along with the Prostap and letrozole make me feel really old and drained . Fatigue , constant tummy issues , lack of sleep , joint pain , the list goes on …

Im only in my forties and I feel so down about it all 

I just hope that it does it’s job and helps us all 

sending hugs xx

Hi kitty thank you for taking time to reply. I'm late response. After writing this post I had a 6 day stay in hospital due to covid and using ambleclib as I didn't know I had it. The joint effort oferzinio and covid brought my WBC too low. Another side effect. Like you I have now applied for early ill health pension too. I'm almost 54 so it's been a tough decision to make. Im sorry to hear youe suffering too. It's much tougher on the body than I envisaged. I am now on a two week break from them while my white cell count recovers. I've tried most diet's recommended by oncology to avoid si effects but still have the bad stomach effects and think I don't think there's anything else I can try at the moment. Here's hoping you are feeling a bit better. Sending hugs

Hi. Thanks for taking time to respond to my post. I'm sorry you are feeling so down. It's hard to keep a balance of normality. I'm now on a two week break from mine which is 150 twice a day. After contracting covid my WBC plummeted. This two weeks is like a holiday to me except still very fatigue after short hospital stay. I'm also on letrozole and zoldroinc infusions. It's sometimes difficult to see any further than a day ahead so it's completely changed my thoughts on everything. I'm learning and it's a steep curve but we have each other to talk to which feels so supportive as we understand.

Sending you hugs ️

Hey 

oh no sorry you had Covid and were in hospital . I had it about 6 weeks ago and oncologist told me to keep taking Abe , my wbc went up the following week ! 
I agree , it’s pretty much one day at a time isn’t it 

It’s good to have each other to chat to that’s for sure xx

Would you  mind giving me any dietary tips your oncology team gave you ? 
hugs xx

Hi, I’m very sorry you are having such bad side effects from Abemaciclib.  I had very similar effects to you so I know a little of how you feel.  It got so bad for me that my dose was reduced from 150 x 2 to just 50 x 2.  Before starting the 50 dose I was given 6 weeks off to recover.  I’ve now had 6 cycles of 50g x2 and by comparison I’m coping really well.  I still get stomach cramps and diarrhoea but only about once a week. My fingernails are spitting vertically and my hair is thinning badly. I’ve lost my eyebrows too.  Last month my white blood cell count was 5.7 compared with 1.5 on the highest dose.  I’m living my life normally again.  I asked my onco nurse if the lowest dose is still effective and she said, data shows it is and it’s better to take some than non at all.  I do worry that it may not be as effective but I personally couldn’t spend my life feeling desperately ill, house bound and going from my bed to my sofa. 

I hope you find a dose that you can tolerate and wish you well. Xx

Hi sorry I didn't reply I didn't receive notification. My oncologist suggested eating a banana before anything else in the morning and keeping a food diary of what affects you most. I hope you are doing ok and this advice helps you xx

Hi mibby. Thanks for your reply. I'm still on the 150 x 2 a day. I had a 12 day break when I had COVID in September. My bloods returned to a very healthy 4.5 WBC . Since returning to the cycles my W is usually between 1.6 and 2. Going for cycle 17 today so fingers crossed for stable bloods. It feels like such a long slog until I finish next September but just hoping it all helps . Wishing you all the best in your treatment.

Xx

Hi, can I ask how many cycles are they; 24 or 26. I’m only on cycle 3 so I’ve along way to go.