When Palbocyclib stops working

Hi Pops59

I'm sorry to read that your treatment has stopped working and it's natural to want to know what others have done in the same circumstances.

I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet. Replying to you will 'bump' it back to the top of the discussion list where it'll have more chance of being seen by someone with the right experiences.

Wishing you all the best

x

Enquire about fulvestrant that would replace the Letrozole and is given by injection. Have you had denosumab injections to strengthen your bones? Louise x

Hi loulou  thankyou for your response..

Yes I do have denosumab injections monthly, and I will ask about the fulvestrant by injection. Thankyou. 

I am thinking that chemotherapy may be my next treatment but I will see.xx

Hi Pops59

May I ask how long you were on Palbociclib and Letrozle? I am also on Palbociclib only just started this treatment. I hope if the Palbo has stopped working your Ono has put you on something else  and tumour markers revert to were they were before.

I keep been informed that there are many treatments out there if once stops working, this has come from 2 Oncologists.

Louise xxx

I was taking pabociclib from Jan 2020 until May this year. Tolerated it well, working full time etc. Then had MR scan that identified spread in the spine, now I have just started fulvestrant. I’m feeling ‘wiped out’ but don’t know if it’s due to this weather. By the way I have acupuncture for hot flushes which works very well for me.

I have denosumab every 3 months, it’s seems confusing to me why people are on different regimens for the same bony Mets, 

hope you all keep well x

Hi Loulou1007, sorry for the delay in responding to you, and thankyou for your kind support.  I have been on Palbo and Letrozole for 16 cycles and I have been very well on it, so disappointing it appears to have stopped working. At the start I missed 2 cycles because of a low neutrophil count, but I very quickly adjusted and I was fine afterwards. I hope it will be the same for you too, and last a bit longer than it has for me 

I have had my CT scan, XRay, and Bone scan and I am due to see my oncologist August 5th, so fingers crossed she comes up with something. Xx

Hi DSC, thankyou for your response .

I am so sorry about the spread that your MRI has identified, And I really hope the fulvestrant treatment works for you.

I think mine has spread in the spine and pelvis as as i have additional pain in these areas, ( very scared of my review tbh)

I don't really suffer too bad with the hot flushes as I have been through the change already once, but thankyou for the acupuncture tip.

I have my denusumab mthly rather than 3 mthly, and yes it is strange how treatment various so much. It is all very confusing,  ad my breast surgeon has,said she is happy to remove my primary lump with a lumpectamy but I am not sure if it is the right thing as not many people seem to do this.

Take care and I hope the treatment side affects ease off for you. Xx

Hello Pops59

-sorry to hear that Palbociclib stopped working for you. I had a similar situation. Having been on Palbociclib and Letrozole, like you, for over a year, they realised it was doing nothing for me. 
I was very upset about it and thought it was the end of the line. But they put me on Capecetibine and it is working really well. My tumours have actually all shrunk and even the new  ones that had grown while I was on Palbociclib, disappeared. 
don’t lose hope, there will be other options down the line. 

good luck with the next phase. 

Oh thank you Bettes for that encouraging news, that really helps to know there something else out there, because Hope is everything to us in this situation. 

XX

No problem Pops59. Please do come back to me if you get put on Capecetibine. You may have questions about it which I will be happy to answer if I can. Good luck, in any case xx