Hello there
This is the first time I have wriiten on a forum, but I have been reading them since I was diagnoised in 2006 aged 39 I had oestrogen receptor-positive breast cancer, treated by mastercomy of right breast with immediate reconstruction, follows by chemotheraphy and radiotheraphy. Forums like this kept me sane, so a big thank you.
Unfortunately 3 years ago I was diagnosed with bone mets in Lower spine, right shoulder, right hip and right ribs, again these forums kept me sane. I had various treatments over the 3 year some which worked for some time ans some that didn’t work at all. The main aim was to keep my tumor markers as low as possible, at worst they went up to 899 at best 75, they are now at 400 but none of the meds I am taking are reducing it. I have had scan lots of them, but I have no further visible spread.
So my onc told me about this new drug ‘palbociclib’ has already been trialled and being used in USA which has good results. He had to apply for it, as its not been rolled out in the UK yet and I have been accepted to use the drug,( along with my other drugs Zometa and Zoledex) which I started on Tuesday 10th May 2016. So far I am side effect free, but dont know how long they would start if at all (fingers crossed not at all).
Is there anyone else on here that is using it and how long for.
Good luck to eberyone fighting the fight xx
Hello dear life
Welcome and glad you have been brave enough to post !
For 80% of us ibrance I think is going to be the way forward once basic chemo fail. (Herceptin is ok for about 20% with her 2 positive )
I don’t like to direct you away from this brilliant site as there is such support here from lovely ladies but if you look at a site “inspire” there is loads of threads mainly from US pAtients giving so much details of this treatment. It seems mostly tiredness that is the main side effect and hair thinning .
It’s good that its available for you …somewhere on another thread ( can’t remember which one ) there is a lady from US offering support to UK
Patients trialling it. She will be very helpful and of course funny face is usually lurking around and she has been on it for quite a while.
Please keep in touch.
Hugs xcc
Me again.
Found it …it’s on treatments and its dated 1st may under heading ibrance . The lady is called Mary …she will probably be of great help and support to you.
Hello Dear Life. I too am on Palbociclib. I have had bone mets for seven years and have had various hormine therapies, plus Capecitabine. More mets found in bones earlier this year so the hospital applied for Paclo. I am just about to start my third cycle of it. I started on a 125 mg dose formthe first two cycles, but had to discontinue it both times after the second week, giving me a two week break before starting again. This was because my white cell count was really low. I also developed a bad cold on day three both times, which was far wirse than any cold I have had before.
Today I was put onto a lower dose of 100 mg, so as I have just started it tonight I dont know what the side effects are going to be, if any.
i will let you know how it goes. I think we are lucky tomhave been given this opportunity, though it scares me sometimes as I worry that this is my last option. I do try to stay positive though.
Do let me know how it goes.
Love nanofthree x
Hi
I have had a 2nd opinion from a company called Best Doctors, which is part of a healthcare plan I have with work. They are based in the US where its available. They have received all of my records and drawn up a report, and this is one of the drugs they recommend I have. Tests have shown it doubles the length of time you can be on it compared to Letrozole, before the cancer finds its way around it. Letrozole is on average 10mths and Palbociclib 20mths. I see new onc 24rd May so will discuss it then.
I hope it works well for those on it.
Xxxx
Hiya .it’s so good to see more ladies getting the option now of ibrance …I follow its progress on sites too . I think u r the third UK lady that has posted that they r having it. Maybe more that don’t actually post here though. The US seemed to have it rolled out and its manageable.
Fingers crossed you get the option …
Hi ladies, it’s good to know that Palbociclib is being given to some of us in UK. I have posted a few times as I have just started on a trial called PIPA being run by The Marsden in Sutton and 2 other hospitals ( I will try to find out where) I am in a phase 1, dose escalation trial. I am also taking another cancer growth blocker called Taselisib.
So I am taking 125 mg Palbo which I think is the dose given in the U.S. Along with 2mg Taselisib. I think the most usual side effect is neutropenia or low white cell count, also the runs, nausea etc like many biological therapies. Fatigue can be another side effect. It’s too early for me to report on any of these though.
I am interested to know how anyone in UK ( who is not a private patient or on a trial) came to be offered it? I’m sure many other ladies would too?
Hi
From what I’ve read its only still in trial stage here, do you know if this is correct. I looked at the trial requirements and i don’t fit them.
Xxx
Thanks to Carolyn’s advice, I’ve been looking at the “Inspire” website and I’m amazed that so many posters from US have been on it for a year or so! It’s also just been approved in Canada. It doesn’t work for everyone who is ER + and seems to be combined with Letrozole or Fulvestrant over there. Why are we only just trialling it here??!!
Do you have a compassionate fund, Pfizer?!
It’s like dangling a carrot for us isn’t it? I think it probably will be available but its the cost which is mega.
There is so much info online and I follow it as I think its the only option for some of us …it’s just getting access to it!!
I think I read somewhere that some European countries have negotiated a lower price for it on success of it working or something to that effect.
Fingers crossed xxx
Ps. On the inspire site there are two ladies aged 79 and 82 on it …sooo it must b quite easy to tolerate more so than iv chemo .
Hugs xx
Thank you for that information, FF, it’s very encouraging that you have had such a positive response to Ibrance and that your side effects are manageable.
What does copay mean? Is it a budget? I really hope that Pfizer reduce the costs for our cash-strapped NHS, I knew it was expensive. I noticed from Inspire website that IV chemo doesn’t seem such a widely-used therapy, is that a cost issue over there?
My trial is going well, it’s combined with another growth blocker, Taselisib. I must ask my team why it’s combined with a hormone therapy in U S. I’ve already run through most of these so hope it’s not necessary to be effective.
I hope that you continue to do well xx
Hiya.
Just changing subject a little …when I was at chemo unit earlier having my bone juice …the chemo nurse said there was one of her patients with skin cancer and the only chemo that works on him costs £2O K EVERY THREE WEEKS!!
About time these drug companies thought about saving lives not their wallets !!
Sorry to barge in .
Oh that’s interesting, FF. Mmmmm…trying not to worry now that I’m not having it with a hormonal in the trial! Only time will tell. Hopefully the Marsden team know what they are doing, I think taxol type IV chemo is the only other option for me after this, I’ve been through lots of others. Xx
Funny face.
You a true inspiration to us here …that’s a long time to be undergoing so much treatment.
I’m only on letrozole and denosumab at present and live in fear of having to move onto the stronger stuff…aagh.
Hugs and thank you for being around for us.
Xxxxx
Been to the Marsden today and had a long chat with the trial doctor, feeling happy now as the other drug I’m having in combo with Ibrance is indicated for an(apparently) genetic mutation they’ve found in me. Good luck everyone on Ibrance xx Funny Face, that’s a coincidence, I was first diagnosed with BC in 1995 too!
Yes we are very lucky. I wanted to say earlier how sorry I was to read about your brother. It’s so hard when having cancer and all its implications doesnt protect us from having to deal with life’s tragedies. Sometimes I tell my sons not to take any risks because I don’t feel that I could cope with anything else…
Wishing you courage and peace F F xxx
Hiya funny face
Think you should change your log in name to “sweaty betty” !!!
It must be so horrid to sweat so much as women we like to have some dignity but they say its healthy to sweat …look at sports people and the other night I watched COLD PLAY in concert * think you will know them in us …the singer Chris Martin sweated so much on stage he changed his tee shirt three times and he is young and fit !! So think of it as good.
The fact you could walk well too is a good sign and ibrance is doing what it says on the tin.
Hugs xxx
???( here is a few things to make you cooler )
Hi Funnyface, do you live in a hot US state? We are having our usual high summer of cool, cloudy and rainy!! I’m just finishing my second 3week cycle of Ibrance and have felt much better this time, just very tired and snoozy. I feel colder than normal so maybe it is the hormonal making you so hot?
I’m so glad that Ibrance continues to work for you and hope you stay cool!! xx
Hi to Ibrance ladies! Just started it today so fingers crossed… Recently diagnosed with spread to the liver so feel like I really need it to kick in well. I’m also having radiotherapy for spinal cord compression & starting denosumab today too so it’s all go.
Tournesol x