Is anyone taking Ibrance/Palbociclib?

I am on the trial but it must be very close to TGA approval. Don't think I am getting the desired results. Go for it. 

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.

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 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.

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

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

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 

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

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.