Is anyone taking Ibrance/Palbociclib?

Mum_of_OneMum_of_One Member Posts: 17

Hi everyone,

I had an appointment with my OC this week and he has suggested taking Palbociclib + Letrozole if I can afford it until it gets on the PBS. He says it's most effective as a first line treatment ( I'm only recently diagnosed de novo metastatic) and trials show double the progression time as Letrozole alone. Is anyone on it and how are they finding it? I have some savings I can use and while ever I'm well I can keep working so still earning an income.

(He seems to think it will make it on to the PBS in November)

Any help greatly appreciated.

Comments

  • primekprimek Broken HillMember Posts: 2,799
    Can't help with actual experience but certainly the stats support this.

    http://beacon.bcna.org.au/2017/05/palbociclib-approved-for-sale-in-australia/
  • TennilleTennille Member Posts: 77
    Im currently awaiting approval to go on a clinical trial for these meds. I have mets in liver and bones. Wish they would hurry up. Ive heard its the best treatment to come out in the last 10 years for Metastatic BC. Biggest side effect is low white blood count. Lady I spoke to said its not as bad a chemo though.
  • HulosHulos Member Posts: 94
    Hi, after having 6 months of chemo an Letrozole,  i was told my tumour had shrunk, didnt need mastectomy but lumpectomy plus lymph  nodes to be removed.
    The op was done last week with the path test showing more canc... now i am down for a mastectomy next week.
    During the consultation earlier today, my oncologist has put me down for the trials by calling it PenelopeB, with the medical term palboccxxxx.so after mybop and havingcthe rads, i will be taking part in trials..i have no exoerience or knowledge about it at this stage..
  • Mum_of_OneMum_of_One Member Posts: 17

    Hi Tennille and Hulos, I hope you are able to get on the trials. My oncologist seemed to think it was worth taking.

    Sorry to hear you have to have further surgery Hulos. I hope everything goes okay for you.

  • sunandsaltwatersunandsaltwater Member Posts: 12
    Hi! I've been taking palbociclib (brand called Ibrance) for 13 months already. As an alternative to chemo, it's fabulous!
    That's if it works for you AND you can afford it. I was just lucky to have recently retired so I had all my superannuation to spend on it. I had to find it myself overseas, in April 2016, or go onto chemo. Good motivation to find it, which I did, but it cost me $10,000 per month, until now. Now it's available for $4,700 a month in  Australia. But Pfizer are giving to me free from this month onwards, on compassionate grounds, because I've spent so much money on it already.

    OK so I was diagnosed with metastatic breast cancer in the liver in December 2014. I thought I was 2 years 'cancer free' by then, following all the treatments for early breast cancer diagnosed at the end of 2011. But no, it was in the blood all the time and had metastasised. In early 2015, my oncologist said I had only a few months to live and I'd better do the bucket list items immediately. My marker numbers were high - 930.  So I had a holiday in Cuba, visited some friends overseas, and held a large party for all my family and friends at Easter 2015.

    And I'm still here and still not on chemo yet. Yay! 
    A succession of hormone drugs including Tamoxifen kept the cancer in check until April 2016 when my oncologist said it's time for chemo unless I could find palbociclib overseas.

    Side effects I've had: Fatigue is the only major side effect for me. But I also have neutropenia, which has allowed a couple of infections in (lip sores and mouth ulcers, but that's all). Also, my hair has thinned a bit but not too noticeably. 
    So much better than chemo, which I know too well, from having had it 5 years ago. I don't look like a cancer patient!

    I do recommend it. You can find out other womens experiences by Googling online forums in the USA, where it's been in use for 3 years already. Or get in touch with me here.....and/or ask your oncologist about it. Best wishes to all of you xx
  • Mum_of_OneMum_of_One Member Posts: 17

    Hi sunandsaltwater,

    Thanks for your post. I'm on my 3rd cycle of Palbociclib and other than neutropenia I'm finding it quite okay, a little bit of nausea on the first cycle but I found a big glass of water seemed to help with that.. I'm hoping I can persist on the 125mg dose and that it makes it onto the PBS very soon! I hope it is still working for you and that Pfizer are still supplying for free.

    Good luck.


  • TennilleTennille Member Posts: 77
    Unfortunately my chance to go on it was taken away when we found out my MBC is triple negative instead of hormone positive like the first time. So chemo it is for me.
  • ElaineGElaineG Member Posts: 50
    Hi mum of one - I'm a mum of 2 and have been on letrozole and palbo since last June - tolerating well except for extreme, crippling fatigue (bit like pregnancy) to which you can adjust/adapt.  I went on a clinical trial.
    Good luck and happy to address other Q's.

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