Member
Posts: 311
Registered: ‎30-09-2017

Re: Palbociclib

Don’t know if anything about this has already been posted as I’m not on this drug but I am on Letrozole. Was just looking at a website called Body Soul Nutrition and saw an article that appeared in The Telegraph, or on its’ website, about Ibrance and it said the benefits of the drug were affected by xenoestrogens found in wheat, maize, barley and other staples.Tried but I cannot add the link but if anyone wants to read it, it was dated 11/1/18 and written by Henry Bodkin, titled Breakthrough breast cancer drug thwarted by chemical found in bread, or go to the Body Soul Nutrition fb page as you can read it there. Kxx

Member
Posts: 353
Registered: ‎26-07-2014

Re: Palbociclib

Hi Deedee, I've been on a trial with Palbociclib (see post below) and my experience with SEs has been mostly good. It is not a chemotherapy and in the past I had to stop EC chemo, I felt so ill, so try not to imagine the worst!

Over 23 cycles I've had some diarrhoea, nausea, mouth ulcers and fatigue, but these have lessened and on some cycles I've been fine. I think that most common SE is low neutrophils which will mean lowering the dose or taking breaks but many people seem to do well on lower doses. I haven't had a low WBC so I'm still on the maximum dose.

My saddest SE has been hair loss along with brows and lashes, this has been very slow but I now have a wig.

Good luck with your treatment x

Member
Posts: 123
Registered: ‎14-04-2013

Re: Palbociclib

Hi everyone, new to this forum. Was diagnosed secondary breast cancer to the bones. I was on tamoxifen for four years now changed to letrazole beginning of January. Got denusomab injection and calcium tabs beginning of January. Got rads on neck two weeks ago which has helped with pain.  Waiting to start palbociclib on the the 6th feb just worried about SE as was pretty bad on chemo 4years ago which I may add didn’t work. I’m lucky enough to get this treatment on the NHS.  Deedee

 

SML
Member
Posts: 13
Registered: ‎23-10-2017

Re: Palbociclib

Thank you for the responses and support. I am preparing my advocacy messages for my oncology appointment tomorrow and will see how things go!

 

Thanks again

xxxx

Member
Posts: 353
Registered: ‎26-07-2014

Re: Palbociclib

Hi SML, I don't come on the forum very often but I've been on a trial with Palbociclib ( and another drug) for almost 2 years. As it is a trial I've been very closely monitored with CT scans initially every 2 months, going on to 3 monthly more recently. In US where it has been in use for several years there are many posts which say it can sometimes take a few months to kick in, I started showing a small but consistent decrease from the start.

 

I would be asking the Onc for a scan sooner if you have already gone 4-5 months without one, if I've read your post correctly? Does he look at tumour markers from blood tests?

 

I have had side effects from the trial but haven't been affected by a drop in neutrophils so I'm still on the maximum dose of 125mgs. Hope you stay SE free! x

Community Champion
Posts: 1,242
Registered: ‎24-11-2014

Re: Palbociclib

Hi SML

I'm new to this too so understand where you are. I've only been on the combo about 10 days and apart from flu like symptoms for the first 4 days (which we've put down to the zometa infusion I started at the same time) I've not noticed any aches and pains .... yet. I will also be scanned every 3 months so it is odd taking drugs and not knowing if they're helping.

Sorry, can't help but would be interested in what your oncologist says on Monday.

Xx
SML
Member
Posts: 13
Registered: ‎23-10-2017

Re: Palbociclib

Hello everyone. I was just wondering if I could get some collective insight into experiences of taking Palbociclib and letrozole.

 

I have been on this combination since I was diagnosed with stage 4, secondary in bones, in September. I am currently in a ‘limbo’ phase – of taking the drugs, but not knowing if they’re working until a scan (in a couple of months, I think). The challenge that I have is that – while desperately trying to stay positive and believe the drugs are doing what they should – I have an increasing amount of pain in the very places where the original scan showed the cancer (right breast, breast plate, neck nodes, etc.) ….. so I find it hard not to fear that the cancer is actually increasing rather than decreasing.

 

I have an oncology appointment on Monday, so am just thinking how to articulate my concerns and what questions to ask.

 

Do others have experience – positive or negative – of the first few months of taking Palbociclib ….. in terms of indications of whether it’s working?

 

Love to you all

xxxx

Member
Posts: 24
Registered: ‎04-08-2017

Re: Palbociclib

Hi, I know how you feel. I've been popping Loperemide like they were Smarties.

 

Be careful though taking paracetamol, it can mask any temperature you may have.  I was told not to take any. 

 

X

Community Champion
Posts: 1,242
Registered: ‎24-11-2014

Re: Palbociclib

Hi Ptt23, temp hasn't gone too high yet, but I've been taking paracetamol. No way I could go to A&E without wearing a nappy for the 20 min journey!
Member
Posts: 24
Registered: ‎04-08-2017

Re: Palbociclib

Hi

 

I've posted in another thread but I'll share it here too.

 

I was originally on tamoxifen and Zoladex while I was waiting to become menopausal. As soon as I was (just before Christmas) I was switched over to Letrozole,  and then last Friday started on Palbociclib.  

 

As soon as I started Letrozole I started noticing my IBS symptoms gradually getting worse, then this last few days, the pain in my abdomen, has been really bad. I'm sure the diarrhoea hasn't helped. 

 

I had my monthly oncologist appointment this morning and she said to stop taking the Palbociclib for a week to see if things settle down. So tonight I've only taken my Letrozole. 

 

I'm sure it was the Letrozole that started my side effects.  Consultant said there is an alternative to Letrozole and lower dose of the Palbociclib can also be taken. 

 

I haven't had a temperature or dizziness and I'm not flu-y, but my side effects mirror your other ones.

 

What has your temperature been as I was told if it was higher than 37.5 to go to A&E?

Community Champion
Posts: 1,242
Registered: ‎24-11-2014

Re: Palbociclib

Thanks Nicky.

I saw my oncologist on Monday who confirmed it is now licenced in the U.K. as first line treatment for secondaries.

Well I started on ibrance and letrazole yesterday and also zometa infusion.

How has everyone coped with the SEs? I've felt awful since the early hours of this morning. Flu-y, nauseous, diahorrea, temperature, thirsty, dizzy, bloating and stomach pain.

As I started all 3 meds at the same time I don't know which as caused which SE. Any clues?
Community Champion
Posts: 4,508
Registered: ‎01-05-2012

Re: Palbociclib

Bumping up for RSD

Member
Posts: 353
Registered: ‎26-07-2014

Re: Palbociclib

Hi Lisa,I THINK that I'm explaining correctly...I've been on a trial with Palbociclib for 20 months so have followed its progress in UK. So initially it wasn't approved by NICE although it's approved in most developed countries now, having been trialled extensively. The drug company negotiated for several months and whilst doing this, they paid for some targeted patients to start using it. Just recently NICE approved its use, but only as a first line metastatic treatment (it's only effective for ER+ HER- patients) I think the grey area is whether it can be added to an existing hormone treatment and how long can that have already been used. So can it be called a first line treatment or not.

I think your Mum deserves a full explanation, I would be asking for an appointment ASAP but I hope that this info might help. Good luck and keep us posted x

SML
Member
Posts: 13
Registered: ‎23-10-2017

Re: Palbociclib

Hi Lisa MP .... I am on Palbociclib and Letrozole. I'm only recently diagnosed, so started the Palbococlib through the scheme paid by the drug company just a couple of weeks before the NHS announcement for it to be free to all who need it. Whatever the payment arrangements, you have the right to know exactly what the oncologist meant and why she said it. Was it a clinical mistake ... and, if so, what and why? As a non medic, I don't know the precise details of the cancer profile for which Palbociclib works .... so perhaps it is simply not the right drug. However, being taken off any drug that is associated with the hope of improved and extended health is a very, very big deal for anyone .... so I feel strongly that your mum is at least owed a full explanation.

 

Sending love and wishing you well

 

xxx

Member
Posts: 1
Registered: ‎03-12-2017

Re: Palbociclib

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
Member
Posts: 1
Registered: ‎18-07-2017

Re: Palbociclib

Hii ramade,
I want to know that palbo is available for free for patients with secondaries liver??
Member
Posts: 21
Registered: ‎10-10-2016

Re: Palbociclib

I've tried that but they won't speak to individuals.

Member
Posts: 145
Registered: ‎12-08-2016

Re: Palbociclib

Call Pfizer and ask.
Member
Posts: 21
Registered: ‎10-10-2016

Re: Palbociclib

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

Community Champion
Posts: 4,178
Registered: ‎01-05-2012

Re: Palbociclib

Papillo, I just saw your post. I don't usually come on the treatment thread, but popped in today. I don't have any advice on swallowing. It's not an issue for me. I just posted a big response on the bone mets thread to Joellek about palbociclib. Maybe you could hop over there and have a read. It would save me repeating. Then if you have any more questions feel free to ask. Good luck! FF