When Palbocyclib stops working

Thank you positive news is great.  Xx

Thank you for sharing your information. You're obviously a fighter and this is very encouraging.

I am also on Palbociclib Fulvestrant and Denosumab only two months since diagnosis of secondaries in the spine so still coming to terms with everything but coping ok with the treatment.

Your approach is definately the way forward .

Louise xxx

Pauline this is so encouraging for us all, I thought I was doing well with 17 cycles of Palbociclib and still living life to the full with multiple bone lesions in spine, skull and pelvis.

I'm intrigued you mentioned Pontesbury in an earlier message,  I live in Newport shropshire and have treatment at Shrewsbury , is this where your treatment is from by any,chance?

Just seen your post. I have been on same treatment for more or less the same time as you & have the same diagnosis. Before starting treatment my tumour markers were over 600 then within a few months they came down to around 100. They are creeping upwards & this week we're 170. My onc isn't worried about it as he says it's not a true picture. Need scans too! 

Hi Angel b, it's good to hear from someone in the same boat, and comforting to hear some consistency from our oncologists.

My latest score has gone up to 207 now, so from 78 February to 178 in June to  207 now.

My scans apparently show stability in the bone lesions so they are now thinking it could be the primary lump in my breast, although like you they are not 100% sure it actually indicates anything.  So I am due to see breast surgeon Wednesday with a view to have surgery to remove it, as everything else with me is stable, they are willing to do the surgery. 

I am guessing and hoping for you that your scans will also show no change, so we continue on our Palbo journey for a few more years!! . Half of this battle is our mental strength and resilience,  so it is really good to hear from others in the same  position and for us to share our own journey and give support .

Praying for you that your scans will reassure you and all is well, please let me know your updates ..xx

Hello everyone..Hope you are all doing well.. Have a general question about hair loss.. How is everyone going with this issue? Is it an issue for anyone?

Mine has been coming out quite a lot.. thinned loads.. I did have very thick hair to start with so have been quite lucky.

I have been told the lossing of hair might not stop and could continue been on drug for about 3 months.

Would love to hear from.you amazing ladies about this.. debating having my hair cut really short to extend the life of it. Unsure how much that will help.

Hi Sambob: are you on Palbociclib?  My hair thinned but seemed to come to a halt and hasn't got any worse.  So if this is a side effect of Palbociclib I would hang on in there.  I did get my hair cut shorter initially and this made me feel better and not as self conscious but now have a short bob. Hope this helps.  

Hi Sambob,  I also lost hair to begin with but it did stop after I had my hair cut shorter. I think it would have stopped without the haircut, but I felt so much better having it cut. It is thinner than it was but its ok..xx

Hi there. I was on palbociclib and anastrazole for 2 years and lost most of my eyebrows and my hair is now thin but still looks OK. The good news is I didn't need to shave too often and I saved on haircuts, there's always a positive.

When palbociclib stopped working I was 6 weeks between treatment and hair on my arms has grown back and my face became fluffy and my hair has grown quicker than normal so I'm now waiting to see what happens now I've started Capecitabine it does say my hair may thin more but we'll see. The great news is we're still  here  and there are always wigs to have fun with.

I hope all goes well with your treatment. Xx

Thank You ladies for your replies . thought I was going mad.. my eyebrows have thinned didn't have much to start with to be honest..lol

My hair is really thin always had really thick hair will just have to see how it goes if it doesn't settle shorter hair cut here I come.

Wigs with glasses done that and it was a real pain so will try and avoid if I can..

I hear henna designs look quite good if it goes that way or trendy haircovers or should I say ahead covers..

Agree we are still here and that's the main thing but was just interested to hear what other had dealt with and how they have addressed it..

I have started B12 and Zinc tablets as they are meant to help with hair growth..  we will.wait and see what happens.