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.
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
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,
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 …
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.
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
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
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
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
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
I’m very pleased for you Nicky! Keep us posted x
I’m also very pleased for you Nicky, very positive news.
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!!!
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??
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
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
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?
Following on from Claire’s post back in May, is anyone able to clarify the current Pfizer UK funding of Palbociclib? My oncologist tells me that only ladies with a secondary diagnosis who have been on Letrozole for less than 3 months are eligible but I have heard anecdotal stories of this not being the case nationally. I have asked breastcancercare for clarification but they are unable to give a definitive answer as to what Pfizer’s criteria is.
Can anyone help?
Kind regards,
Maggie
Hii ramade,
I want to know that palbo is available for free for patients with secondaries liver??
Hi, trying to get some advice. My mum started on a hormone tablet last year then when discovered a few months ago it had stopped working her onc suggested going on Palbociclib with letrizole. She said it was being trialled for approval by NICE but as mum was starting it before the trial, even if it didn’t get approved she could still carry on with it. Fantastic news it’s now been approved however when we just went for a check up the onc said she’d made a mistake, she shouldn’t of prescribed it and they’d get in trouble if they carried on given it to mum. I don’t think this is ethically right to allow her to be on it and without doing any scans then take it away from her.
Does anyone have any suggestions? We’re truly devastated by this