Ibrance (palbociclib) FDA Approved in USA..... Oncologist hasn't heard of it!

[Marirose]

Bumping up for Dear Life

I am not experienced enough to talk about this drug but there are ladies on here who are. But good luck and keep posting to let us know how you get on with this treatment.

(((((((hugs)))))) xxx

[Carolyn52]

Hiya Mary.
Welcome to our family and thank you so much for finding us here in the UK.
I think there are a few trials starting with ibrance and a lot of us are watching with interest. Herceptin is a wonder drug for many but of course only for a few that have the correct type of cancer.
I must confess ( traitor) but I do sometimes log into " inspire" to read the reports on the ladies having ibrance around the world.
Please stay with us ..we are a friendly bunch and enjoy reading new threads ..we have lots going on within this website once you get access ..can join us on the secondary private forum where we have a book club,cooking recipes etc etc .
Once again welcome from across the pond.
Hugs xx

[Stillhere]

Hi Mary, think you've picked up an old thread but I'm interested in the fact you've been on Ibrance for 11 months. Are you from US? I'm starting a drug trial with Ibrance and another drug so I'd like to pick your brains in a few weeks! 

[Mary5270]

Hi, i am in my 11th month of Ibrance. All bone and lymp mets are gone. tumor is shrinking. Fatigue is unbelievaeble. and i work hard to keep my numbers up. Also started Xgera, for the bone cancer. Questiions...please. i dont know what you need to know. 

[stresshead]

L:adies, thaks for the info on this...i to am er+, her2- with skin mets which dont seem to be responding to any hormone therapies or even chemo at the moment...on eribulin currently. Would be especially good if this could be used with faslodex as that seems to be the only option left for me...so depressing when nothing seems to work isnt it, especially when there are drugs out there which could help. x

[Danigirl501]

Hi mermaidoo7

Thanks for reply.  

I did speak to onc but she turned her nose up and brushed my question aside.  It's frustrating really as if this Ibrance works and prolongs life then shouldn't our oncologists talk about it and maybe look into it if they haven't come across it before?  

Would love to know if anyone out there is on it and or it's here in UK? 

Best wishes 

Danigirl 

[Glo]

Looking at the info available it looks like it might be limited to those who have only had endocrine therapy so far or just 1 line if chemo! They always seem to put so many limits/criteria on everything!
The reports mention the challenge of managing stage 4 disease if hormones aren't effective despite being ER+, so hopefully it will become widely available, as maintenance in between chemos!

[Stillhere]

Oh, that's interesting! I've googled it on UK sites and it does sound exciting. I think that UK has also finished their trials early as the result was so good. Come on NICE, lets get it available on the NHS!! Thanks for the posts on this, I've just had my Onc appointment but will mention it next time as I'm at the Marsden xx

[springsummer]

I think there is a  paloma trial at the Marsden.  If it is the same drug ( and I think it is). The oncologist in charge delivered a paper last month about it. He was very positive about the results to date.  

[Stillhere]

There is a small amount of information on the CRUK website, they talk about the PALOMA trials which I think have been run in UK as well as USA. Needless to say, we are behind USA as they have fast tracked the drug for use already while we still await results, I believe.
Could be a future treatment, bound to be expensive though. Sorry if I sound jaded but I don't feel that there are that many options for ER+, HER- outside of chemo.

[Bluebell60]

Hi Dani

As Mermaid said, there are a number of women in the States on this drug. It's marketed by Pfizer and is paired with Femara (letrozole), although I believe some oncologists are starting to use it with Faslodex (fulvestrant). It may potentially be paired with other drugs, so there is some interest about that. The US website mentioned by Mermaid does have an active thread under Stage 4/metastatic cancer.

I believe this drug is currently expected to be rolled out in the UK during the latter half of 2016 although I don't have any knowledge of costs to the NHS and how that process works.

I find it very frustrating that any oncologist wouldn't keep up to date with possibly helpful drugs - maybe your onc doesn't want to raise any hopes as it's not actually approved in the UK yet?

Bluebell

[Mermaid007]

Hello Dani,
I lurk around the discussion boards on an American site Breast cancer.org and there are a lot of women on this new drug. It became available to them earlier this year. There is a lot of info there and main side effects seem to be fatigue due to it lowering blood counts. I don't think it is available here yet maybe in trials ? Would love to know what your Onc thinks. I don't see mine till end of August. Best wished x

[Sam_BCC]

Hi Danigirl501

Whilst you wait for the other users to reply may I suggest you give the BCC helpline a call on 0808 800 6000.  Here you can talk through your thoughts and questions and the staff there may have further information on this new type of treatment.

Lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator  

[Danigirl501]

Hi there

this is for anyone in the know and wondered if any light can be shed on this new drug?  It's for secondary breast cancer which is hormone positive and her2 neg.  It's taken alongside Letrozole or another hormonal drug.  

this is an extract i gleaned from Inspire website:

* Palbociclib – a type of biological therapy that inhibits cyclin-dependent kinase (CDK) 4 and 6. Approved by the FDA in the US for breast cancer (it was given accelerated approval due to its “breakthrough status”) and is used for the treatment of ER-positive and HER2-negative breast cancer.

If anyone does know anything about Ibrance (palbociclib) then I'd like to discuss further. 

Best wishes

Dani