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Palbociclib

Member

Re: Palbociclib

Hi Ramade, It's good to hear some of your story and pleased other medicines are working for you. Is e/e an anti oestrogen too? I hope you are feeling well on it and an impressed with you commitment in setting up a local support group. How is your cancer monitored at moment?
I am shortly to finish 6 cycles of chemo paclitaxel, scans 3 months ago showed this had successfully stabilised liver and bones mets. I hope repeat scans will reconfirm this and then am expecting to be offered an anti oestrogen. I do feel positive this will be the case, my body tells me so! Xxx
Member

Re: Palbociclib

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.

Hugs

ramade

Member

Re: Palbociclib

Hi Ramade, thanks for posting this useful information. That means it will not be offered​ to me at the moment but I will keep I in mind because as you say the situation may well change in the not so distant future. How about you, will you be able to have it? Snoopy fan xx
Member

Re: Palbociclib

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

Community Champion

Re: Palbociclib

Still here, I had palbociclib and letrozole from Aug 2015 thru April 2017....21 months. Good luck!

Member

Re: Palbociclib

Still here
That's brilliant news and shows its doing what it says on the tin for you .
Hopefully with more ladies getting the choice of it ...there will be a lot more stable mabels posting here too.
Xxxx👍👍
Member

Re: Palbociclib

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!!! 

Community Champion

Re: Palbociclib

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.

Nicky x

 

Member

Re: Palbociclib

I'm also very pleased for you Nicky, very positive news.
Member

Re: Palbociclib

I'm very pleased for you Nicky! Keep us posted x

Member

Re: Palbociclib

Nicky
That is great news for you especially as you have had so much other treatment ....
It might be easier for you than the chemo you are on at the moment and gives another choice.
I don't see my onc to August so if my letrozole fails ..would like to think its available as another option.
Fingers crossed that other ladies are given access to it too.
Hugs xx
Community Champion

Re: Palbociclib

Hi ladies

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.

Nicky x

Member

Re: Palbociclib

Thanks Carolyn and Still here( amazed and encouraged by the length of your treatment!)
I have read the BC blog and agree palbociclib is mentioned only as a first line treatment. I have another appt with oncologist consultant this time but I'm worried when I go back he still won't know any details about it. I would rather pick up on your suggestion and check directly with Pfizer. I have visited Pfizer website but I'm really not sure who to email. I would be grateful​ if you have any suggestions. I don't want to leave any stone unturned. I'd also be interested to know how your cancer is monitored whilst you are on anti oestrogens. My consultant has previously mentioned 3 monthly scans and tumour markers on blood sample.
Thank so much for your help. Xx
Member

Re: Palbociclib

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

Member

Re: Palbociclib

Hiya snoopy
There is another thread running but the way I read it is that its for first line treatment only and not if you have been undergoing chemo or previous hormonal pills...I might be a numpty and got it all wrong though .
Try reading the bc version here on their blog and see if that's what it is ?
Xxx
Member

Re: Palbociclib

Hi all,
I think I am right in saying the situation on pablociclib has changed now. Whilst waiting for NICE to draw up their final recommendations about this drug Pfizer who make the drug have offered to pay for suitable people to start on this drug. I think I may soon be in this position, I have bone and liver secondaries, my tumour is oestrogen sensitive and HER negative and I will soon finish an initial 6 months of chemo.
I read above about you ladies writing to MPs but maybe this drug can be directly accesses through NHS/ Pfizer? The oncologist that I saw last week at my routine appt had not heard of this drug.
I'd love to know how you are getting on and your thoughts. Xxx
Member

Re: Palbociclib

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.

Member

Re: Palbociclib

Hello Maggie ( again)
I think I read that NICE are reviewing Ibrance again in June with the drug company. There is another new one licensed in us called KISQALI ..it's a lot cheaper and so maybe with a bit of competition now Ibrance will lower the price .
I've been on letrozole like you since October 2015 and know that it might stop working very soon ...
Member

Re: Palbociclib

Hi Jo,

Your post has given me some hope then that I may still be able to somehow access palbociclib. Please could you give me the name or trial number of the trial that you're on?

Kind regards,

Maggie

Member

Re: Palbociclib

Hi  

This is odd because I'm on my trial with Palbociclib and Letrazole (and Tasalisib). I was on Letrazole for a year before starting the trial. 

Member

Re: Palbociclib

Hi 

I'm 52 with two sons,..like your daughter. I wanted Palbociclib, and managed to get onto a trial. I researched options and took a suggestion to my oncologist. She then got the ball rolling and contacted the Royal Marsden. I had to pass a number of health tests and meet criteria, but I have shown it can be possible. I will lobby my MP,

Member

Re: Palbociclib

Hi Barbara, 

Thank you for your post, I will happily contact my MP to request his support in this debate. My situation is similar to Claire's in that I am unable to be prescribed Palbociclib on the NHS and not eligible to be included in current trials as I have been prescribed Letrozole since October 2016. I do not have private health insurance and to purchase privately seems prohibitively expensive.

I feel so sad that there is a drug with proven efficacy available but out of reach for most of us to whom it could make such a huge difference.

Kind regards,

MaggieMac

Member

Palbociclib

My daughter Claire Molyneux was diagnosed with secondary breast cancer two years ago. She is only just fifty and has two teenage children. She was told by her consultant that pablociclib has been proved to be effective in prolonging the effectiveness of other treatments and is being prescribed privately. Its availability on the NHS was being reviewed by NICE last week but despite a huge petition started by Claire it was rejected. Claire has now enlisted the help of her MP, NIck Clegg, who now hopes to lead a parliamentary debate on this. Could you please please ask your local MP to contact Nick Clegg and give him their support. Could you please also share with me any thoughts or experiences you have with regard to palbociclib. My thoughts are with all people in a similar position to Claire and their families.