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Life after palbociclib?

6 REPLIES 6
Allypal
Member

Re: Life after palbociclib?

Hi Cathy, thank you so much for the tips I will definitely check out the facebook group and zoom sessions/chats. Take care xxx 

cathyb9
Member

Re: Life after palbociclib?

Hi Allypal

As well as this site I have found a fantastic Facebook group called make2ndscount and this kind of question comes up all the time. 
you can join as a family member if you want to. 
without them I would be be lost. I ask any question and they come back within seconds with side effects, tips and lots of reassurance. One lady posted yesterday she had been on treatment for 9 years ! Which is so what we want to hear. 
This site is good but it’s not as instant. I use BCN zoom sessions which are brilliant and they have a Tuesday chat which again is great. 
I’ve heard cape is good and very doable.

take care 

cathy

Allypal
Member

Re: Life after palbociclib?

Thank you Jill1998 for your kind message - I really hope to hear some positive stories xxx

Allypal
Member

Re: Life after palbociclib?

Thank you for your reply Mermaid007 🙂 

It's in her bones, a bit in her liver and now her abdomen. She is discussing the possibility of a liquid biopsy with her onc so fingers crossed we might have a bit more clarity on what's gone wrong and what treatments could work in the future. Although either way it's a blow to have a curve ball like this so early into treatment as we'd only just caught our breath after the initial diagnosis of SBC. I know it's important to stay positive at these times but we all feel very upset and deflated at the news. 

Anyway thank you for your supportive message, it's so comforting to have such a lovely community to ride this horrible rollercoaster with. 

xxx

Mermaid007
Member

Re: Life after palbociclib?

Hi,

can I ask where the mets are? Can they be biopsied?  I only ask as the ER or PR or HER can actually change. It’s worth asking . Mine mets to liver we’re still strongly ER but I know if ladies who had changed to negative or HER2 so different treatments available.

Hope this helps


x

Jill1998
Community Champion

Re: Life after palbociclib?

Welcome to the forum Ally . I don’t have personal experience of this but I know there are lots of ladies on the forum with experience of the next line treatments , hopefully they will be along soon to share their experiences .I hope your Mum does well on cape xxx

Allypal
Member

Life after palbociclib?

Hi

I'm on this forum as I'd really like some inspiration or hope from you lovely people. My mum has just had the news after her 4th cycle of palbociclib that it isn't working for her. Whilst it has helped in some areas, there has been progression in others. Hopefully she will start new treatment in a few weeks (Capecitabene).

She originally had breast cancer in 2007, and had been in remission until September 2021 when she was diagnosed with mets. Her original cancer was strongly hormone positive so we were hopeful that targeted therapy would be successful. We are so disappointed that palbociclib hasn't worked as it appears to be the gold standard in treatment and has given a lot of people more years. I would love to hear from any people who have had more positive experiences on second line treatments after palbociclib didn't work or after it stopped working? Any stories would be a wonderful thing for my mum and our family to focus on.

X