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.

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Comments

  • primekprimek Broken HillMember Posts: 3,182
    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: 87
    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: 87
    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.

  • JustDiagnosedJustDiagnosed Member Posts: 6
    I have been petitioning the Federal MPs (and so have my social network contacts) and also the Medical Board to get this onto the PBS in November. Not sure how much longer I can hold out before taking it. My diagnosis came just 6 days after my 3-year work contract ended, so have been unable to get any sort of support from Centrelink...not even any sick pay as I wasn't in work on the day I was diagnosed! After 3 months funds are running low and I'm borrowing from my parents, but if I can get the palbo later this year I will be able to get some work and therefore some income.
    Anne-Marie
  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 193
    Hi, I understand your frustration COMPLETELY! and good for you re all your hard work to try and get Palbo on the PBS, BCNA have tried very hard on our behalf for this to happen, unfortunately at this stage the only breakthrough was that those ladies who had been accessing the drug overseas at a cost of $10.000 per month can now receive this drug free of charge,these ladies had paid in excess of $100.000 over the course of time, so very happy for them, HOWEVER that leaves a lot of us in a position that we can access it BUT at a cost of $5000. per month unless we meet the criteria necessary to receive the drug, which begs the question where to now, it would be fantastic if it was to be put on the PBS in November, but I just will not hold my breath, are there any alternatives for you? what does your oncologist say? so many questions, and no real answers,I am on a oral chemo, but it does have side effects as do most of the others, what treatment are you on at the moment?ringing the cancer council may help,it sounds like you have a lot of questions that need answers,sorry I cant be of more help, do you have a McGrath Breast Care nurse, they are a great advocate for women with breast cancer,I am 4 years post diagnosis of metastatic breast cancer I have mets in my liver and spine,let us know if we can help with anything , there is help out there its a matter of navigating you way around, easier said than done,
    wendy55 
  • JustDiagnosedJustDiagnosed Member Posts: 6
    Hi Wendy, thanks for your comment. 
    I have been to the media and had some press releases about the cost and unavailability of palbo, and have had some good replies from our Federal and local MPs, but it's frustrating that the drug is there but not available to everyone. My mets are in the ribs, spine and sternum.
    I have stopped taking Letrozole on the oncologist's advice in order to stay 'newly diagnosed' so am only on painkillers at this stage. I will have to look into it a bit more this week. I do have a Breast Care Nurse who is lovely, but here in rural areas she is only up in this area one day per week with a lot of people to speak to, so I don't like to bother her too much.
    Also, I am originally from the UK so have looked into whether palbo is available there, but unfortunately not!

    Again, thanks for commenting.
    Anne-Marie
  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 193
    I too was born in the UK, and keep an eye on whats happening over there as well, and also live in a rural area, I used to feel guilty about ringing my McGrath nurse but do not anymore, in fact she has just advised of a new clinical trial in melbourne and I have faxed off the letter to my oncologist to see if its for me, I see him on Oct.30th so will find out then, there is also another drug called ribociclib which is similar to palbo have you heard of it?, it seems so unfair that these drugs are available but we just cannot access them unless of course we win the lottery, I live in country SA, where are you? all we can do is HOPE and have FAITH that these drugs will become available, its really all we can do,
    wendy55
  • Molly001Molly001 Member Posts: 293
    I am going on a clinical trial where palbo is given for 2 years alongside hormone treatment for early er+ bc (palas trial). One of my questions to the dr was if I would still have access to the drug later on if it gets on the pbs and I ever get to stage 4. I was quietly told it's looking highly likely to get on the pbs. Not sure when though. I hope soon, ladies, so you can access it.
  • LeapfrogLeapfrog Member Posts: 4
    I was diagnosed in October 2016 de novo with bone mets and was fortunate enough to get onto a trial for Ibrance/Palbociclib and Letrozole.  I count myself as one of the lucky ones and am so grateful that I met the criteria.  I'm on my seventh cycle currently.  Cycles are Letrozole every day without stopping and Palbo every day for three weeks then a week's break followed by a blood test to check if the neutrophil count is high enough to start the next cycles.  Palbo lowers the neutrophil count, i.e. immune status as well as haemoglobin and other factors, causing fatigue and possibility of infection while immunity is down.  For me, my blood count has never been high enough to start a new cycle after the one week break so I have two weeks off and then a second blood test to check I can start again.  So my cycle is a three weeks on/two weeks off cycle.  

    I'm very sure it will get onto the PBS.  It's been used in the US since 2015 with great success.  It was so successful that the first trial, which was a double blind study, had to be stopped because the ladies receiving Palbo were doing so much better than those receiving placebo that they couldn't in all conscience continue to allow those on placebo to lag behind so much.

    I am Stage IV, by the way, so my cancer is incurable but it's highly hormone positive so is treatable.  I'm told that, with this combination I should do well.  So far my tumour marker has dropped by half, down to 500.  I would like it to be lower but scans show my disease is stable - not progressing, which is reassuring.

    My side effects are similar to sunandsaltwater's - mouth ulcers, cold sores, fatigue, especially during the last week of the cycle, Grade 4 neutropenia (low neutrophils) and I don't feel great a lot of the time but I do have about two weeks during the first two weeks of the cycle when I have noticeably more energy.  Side effects are manageable and not too bad.  I'm only mentioning them so that you're aware of them.  

    To anyone who has mouth/gum problems Gelclair is great.  Fairly expensive but you can get two treatments out of one sachet.  You stir it into a small amount of water and swish it in your mouth for a few minutes then don't eat or drink for 45 minutes to an hour.  It helps a lot if your mouth is so sore eating becomes a problem.
  • LeapfrogLeapfrog Member Posts: 4
    I should add that, as I said, I know how lucky I am to be on this trial and I wish everyone had access to this drug or ribociclib and I've been sending petition after petition around to everyone I know to try to make the government pull its socks up about this.  It's so unfair when women in 52 other countries have access to it yet we don't because the government isn't satisfied with FDA approval but wants TGA approval as well.  Pfizer are doing all they can to hasten it.  I hope you can all have access to it very soon.
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