Palbociclib

Hi Zeds

I don't have the experience you're after but I noticed that you hadn't had any replies to your post yet. Replying to you will 'bump' your post back to the top of the discussion list where hopefully it'll be more easily spotted.

If you haven't already done this, if you type 'palbociclib' into the group's search bar you could have a look through previous posts which mentions this medication and reply to any of the posters who you think might be able to help you further.

While you're waiting for replies it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi Zeds, I've been on palbociclib and letrozole for around 37 months now!  I started on 125mg, was reduced to 100mg after around 18 months due to continuously low neutrophils, and more recently been reduced to 75mg for the same reason.  My oncologist prescribes me with Zarzio injections each cycle, which I have to administer myself  (5 pre-filled syringes.) It's been a bit of a juggling act to get the timings right and there has been some debate between oncologists as to when in the cycle they should be taken.  I currently take them on my week off palbo and my neutrophils have improved greatly.  When the oncologists rotate the new doc will say it's not standard procedure to prescribe zarzio with palbo, but the specialist has said that as I have had many delays in treatment he is happy for me to continue at the moment.  Maybe this is something you could ask your oncologist. Totally understand how you feel about remaining positive as these setbacks knock me back too.  Hope you get on ok. 

Hi Daisy66

Thank you so much for your reply! That is great news that you are still on Palbociclib 37 months on.

I have been on the 75mg for 2 weeks now, I have one more week and then will have my blood test a week later, I am keeping everything crossed. I am a bit worried as i am getting more pain and discomfort,  I don't think that the 75mg is as effective as the higher dose.

I have spoken to my oncologist this morning and she is arranging a new CT scan, but it seems there is a 4 to six week wait for the report at the moment. I will mention the Zarzio as soon as I can.

I am still keeping as positive as possible and feeling quite well in myself, so not all bad

Thank you again, it is so nice to share our journey with other people in the same position .

Zeds xxx

Hi, I was very concerned about being put on the lower dose as felt it wouldn’t be as effective but my oncologist reassured me that in trials there was no conclusion  that the lower dose wasn’t as effective as the higher dose - just that it help with the neutrophils. I’m waiting for a scan appointment too. Hope your consultant can help. Good luck. Let me know how you get on. 

PS regarding the pain... I constantly experience joint pain which I believe to be normal with this medication. Some days are worse than others but I walk and swim frequently and it does help. If I sit down too long I do seize up but once I’m up and moving it’s not too bad. Like you looking forward to a holiday. I seem to be struggling with IBS symptoms which I’d never have before so just keeping an eye on that for now!  Stay positive and active and most importantly stay safe x

Thank you Daisy for the reassurance. I get a lot of acid reflux and indigestion, but  no IBS at the moment. 

Do you have mets in you liver?

I hope your scan goes well.

Thank you again

Stay safe

Zeds xx

Hi. I went through an acid reflux stage and have been prescribed lansoprazole which have stopped it.  Mets in spine and sternum. Thank you. Take care.