When Palbocyclib stops working

I have been on palbociclib for 25 months and it has now stopped working. I have secondary breast cancer in my bones and lungs and have just been offered Capecitabine  which I'm hoping to start in the next few weeks. I'm hoping I will tolerate it well and my hope is that it will settle things down for at least another 25 months but I really don't know if that is realistic as I can't find anything regarding how long it's normally tolerated.  I'm really pleased there is this option because I thought it was the end of the line. I am jnterested in any other ideas for the hand and foot syndrome.i wish there were some face to face coffee mornings to get together and chat through how other people are finding things.  I really don't know if my expectations are realistic and don't like telling my family too much, I. Like all of you I'm sure slap on the make up every day and pretend I'm still the same as I've always been.  To all of you out there I send you a big smile and hug even if we can't get together. X

I tend to have CT Scans unless something is unclear like the issues I have with my lower spine. They did an MRI to look at things from a different angle but the outcome was still the same. I struggle with claustrophobia so hate the MRI. I get upset everytime I have my scans but my nurse said to me lots of her patients have changes on every scan so that made me feel a little better.

Sorry to hear Palbociclib has stopped working for you. 
I swopped to Capecetibine for the same reason as you and at first- maybe for 6 months found fewer side effects than when I was on Palbociclib. However I have gradually accumulated side effects, but at least the Capecetibine is working well and every scan has shown reduced tumour size and number . 
I have been on Ca-ecetibine about 9 months so far. 
I met another patient who has been on it 8 years!  

so all in all, I can offer you a bit of hope. 

Wow, that is fantastic. Thank you for your reply its really given me a lift. I hope you continue feeling OK on Capecitabine 

Hi there,  that's good news for you that they have given you another option, and looking at the response from Bettes it should be successful too.

It is very reassuring to know there are other treatments after Palbociclib,  and ir is really helpful to hear from everyone on this site, as it is sometimes a lonely road qe travel ax we don't always want share our worst fears with close family.or friends. 

Update from my oncologist today says my bone scan abd ct scans show stable disease so despite my  ca15.3  tumour marker going up to 178 she doesn't want to change treatment.  However she has,agreed to me having a second review done at a local specialust orthopedic hospital where I had my first bone biopsy.they will review reports with reference to bone lesions and they have agreed to look at surgery to remove my breast primary too.

My cancer had metastised before the primary was found, so originally no surgery gir primary was offered to me, so I'm thinking this may be a good thing to do. Any thoughts?

That's great news for you today. I think all our journeys are different and you have to take on board all the advice given and then you make the right decision for you that will help you cope with what is going on.

I had a mastectomy 6 years ago for 2 small lumps and 4 years later they were shocked that I had secondaries. I remember one nurse sad I had been unlucky! I thought that was a strange thing to say.  Anyway make this journey your own and with the advice you are given you have control to decide what is the best way forward for you.

Big hugs

Yes i agree  thankyou for your response. 

Big hugs to you too.. xx

Hi

I was rediagnosed with secondary breast cancer in 2016 and started on Capecitabine which stopped working in March 2020 when MRI showed new deposits in my spine (sacrum area) - I have it in my bones, lungs and spine.  I changed to Palbociclib in March 2020. 

The main problems I experienced when on Capecitabine was my hands and feet (Palmer Planter syndrome)  The impact was quite significant initially until I found ways to manage it.  I found using Udder Balm cream (from the farm suppliers Wynnstay in Pontesbury) the most effective.  I applied it morning and before bed each day and wore white cotton socks and gloves (cheapest in Super Drug)  until the cream was absorbed. Thank goodness for Sketchers and gel insoles!  They were my saviour and really helped to minimise the inflammation and skin peeling (not pretty). If skin broke down I covered with Melolin PFA patches.  It has left me with red soles on my feet with thickened skin but not painful any more. I now apply CCS Swedish Formula Foot Care Cream from a local pharmacy daily and this seems to work.  

Hope this helps.  

Thank you for the advice have just ordered cream so I'm ready. Interesting the Capecitabine worked so long for you,  I'm feeling pretty under the weather right now since palbociclib stopped working so really hope the Capecitabine settles everything back down.

Good luck with your treatment. X

Hi 

I had breast cancer in 2004 and have had 12 years remission. I was re- diagnosed in 2016 with secondary breast cancer - it is now in my lungs, bones and mainly in the spine. I started oral chemo (Capecitabine and Denosumab).  Once they got the dosage right for me things were going well until March 2020 when it stopped working and my spine tumours increased and invited more friends to join them.  I was started on new regime of Palbociclib and Fulvestrant injections and continued with Denosumab. So far so good.  Fingers crossed it continues to work for a good few years yet.  I was also informed that some people can be on treatment for bone cancer for many years.  Just keep believing! I told my consultant at re-diagnosis that I was going for the wider variation of the general prognosis ...... and here I am 5 years on and living life to the full.  

Hope your treatment goes well.  They do take good care of you with regular scans to monitor any changes, don't ever feel you shouldn't bother them with any concerns....... they actively encourage you to contact them.

Sending BIG hugs your way. xx