27-06-2017 11:22 AM
Hi Funnyface, I am about to start Pal, still trying to find info, Hospital new to it as well, ( feel a bit like the blind leading the blind ) First thing i need is tips on swallowing capcels, not use to tabs or capcels , lol , if you can help please, & any info you can give me on Pal would be gratfully recived .
23-05-2017 07:54 AM
Hi Claire, I was on letrozole and was told palbociclib was too expensive and I couldn't have it. Now letrozole has stopped working and I am on the e/e combination. It does seem to differ depending on which hospital you are at which is wrong.
22-05-2017 03:41 PM
It looks like some people already on letrozole are being allowed to go on to Pablociclib. I have been told that I can't have pablociclib as I have already been on letrozole for 2 years. Has anyone been allowed on Pablociclib who has already been on letrozole and if so, where are you from? and how long had you been on Letrozole for? Has anyone been on a trial where you were already on Letrozole and then Pablo was added? If so, where?
18-05-2017 01:26 AM
17-05-2017 08:15 AM
Snoopyfan, no I can't get the free palbociclib because I've been on letrozole(which worked for 5 years!) And am now on the e/e + denosumab for cancer in bones and lung. I am lucky to have relatives who are doctors and specialists in other parts of the country and it seems if we can keep ahead of the treatments there are new meds in the pipeline and the more they learn at cancer research it is having a snowballing effect on more treatments being found.
Please try to remain hopeful. I am at the moment trying to start a support group at my house because there isn't one in my area.
17-05-2017 03:46 AM
13-05-2017 08:19 AM
Hello all, I have spoken to the Ibrance(palbociclib) brand manager at Pfizer. He told me it is available for free to nhs patients who have either just been diagnosed with secondaries or who are on letrozole as a first line treatment. If you have had chemo for secondaries or other treatments then it's a no.
However, as Carolyn says there is another one coming out which I think is by Novartis, this creates competition so I conclude that we may not have to wait too long to all have treatment.
I cannot say for definite of course but it is looking good. I hope this helps all you people like mewho cannot get this treatment at the moment so hang on in there!
hugs to all
11-05-2017 02:58 PM
11-05-2017 02:56 PM
So this maybe of interest to those reading about Palbociclib, I've just had the result of my latest 3 month scan and I'm a stable Mabel 😀 😀 so will continue with my trial of Palbociclib and Taselisib, I'm now on cycle 14!!!
10-05-2017 04:13 PM
By the way in my earlier post I should have made it clearer that this is a treatment I could have but at the moment I'm on eribulin. also my oncologist seems to think it is available to patients such as myself who have had many previous treatments so it doesn't sound like its first line only treatment. If my current chemo 'fails' palbociclib is a targeted treatment to go onto, which wasn't available to many in the UK other than trials. Also, if eribulin keeps hitting my bloods too hard I may go onto palbociclib as it's known to be easier on the bloods.
10-05-2017 07:22 AM
10-05-2017 07:15 AM
When I had my onc appointment yesterday he said that I would be able to have palbociclib in line with the announcement - and this is after I have had several chemo's and hormonals. He seemed to think that other patients he has in a similar boat to me would also be able to get it. I just hope he has read his internal memo, or whatever he got, properly! It is available until September from Pfizer as part of this agreement and I assume is because they want to provide more evidence of its effectiveness before NICE make their decision.
I'll let you know if I find out any more when I next see him.
09-05-2017 09:09 PM
09-05-2017 11:20 AM
Hallo Snoopy, I agree the criteria for possible palbociclib treatment is confusing! Your oncologist really should get up to speed because this drug has been approved by many countries and is in use for patients who have been heavily pretreated as well as first line ones. It is not clear whether a direct appeal to Pfizer is the way to proceed but it's well worth a shot.
I have been on the Marsden trial for a year now using Palbociclib and Taselisib without a hormonal and it's been very successful for me, albeit with some side effects. I have been heavily treated with 4 hormonals and 3 chemos in 21 years!! I'm not sure why it's being prescribed only as a first line metastatic treatment, my cynical side says more patients still alive and kicking than further down the line?!
Also anyone on a trial has different criteria to be accepted than for a Pfizer compassionate fund outlined in the blog xx
08-05-2017 03:18 PM
08-05-2017 01:57 PM
01-04-2017 03:00 PM
Hi everyone. Just to update you about the palbociclib debate : Nick Clegg (Lib Dem, Sheffield Hallam) and Paul Blonfield (Labour, Sheffield Central ) are hoping for a cross-party Parliamentary debate on the availability of palbociclib on the NHS on April 11th. Please please if you are able could you contact your MP so that they could count on their support. It would be so great if we could make this happen so that this very effective drug could be available to all it could help, not just private patients or those able to take part in the trials. Claire has been referred to Mr. Johnson who is the expert on this drug at the Royal Marsden so there is some hope - but how great if you didn't have to jump through all those hoops. Thoughts with all of you.