I don’t know Christine, it completely baffles me! But look at all the research about the effects of processed sugar and they won’t even admit to that, yet how often do you read anything saying it’s good for you! I’m not on this drug but thought this was interesting, and from a reliable source. Kate x
Minefield is the word!! My secondaries are in pelvis, sacrum and lung. Had radiotherapy on pelvis and sacrum in March/April , horrible SE's, put me in bed for 3 wks. Am so relieved that no bad SE on palbociclib so far.
Unfortunately I am still on crutches , walking very limited. This is the hardest as until a few months ago I did regular 12ml fell walks. But hey how I feel well and an opportunity to find something new.
Hope all goes well when your treatment begins. A bit scary at first, they go through all the SE in great detail.x.
Have posted this before but thought it may interest you, if you haven’t already seen it.
Hi. Just completed 1st cycle palbociclib. Also take letrozole. Letrozole am, palbociclib pm. Only SE shedding hair, still not obvious to other people. May be more lethargic but who isn't with this heat. To try and give myself the best 'chance' of a good outcome I've gone dairy free and eating a diet of mainly fruit, veg and protein. If no improvement after 1st scan will go back to eating my much loved cheeses.
Best to all Christine
I've finished my third cycle of Palbociclib, so have had a CT scan with contrast so my mets can be checked. Results tomorrow, so little sleep for me tonight. As per usual, every little ache and pain ( and there are lots!) makes me think they've spread. X
Great news Dawn. I think you are just ahead of me on palbociclib. I am fininhing my third lot. Nobody has mentioned scans though and I am burying my head in the sand and not mentioning them either.x
Hi you you , ive just finished my first full cycle of Palbociclib at 75mcgms. Can't say I was thrilled to be on the lowest dose , but according to the American web site it makes no difference. My bone marrow was in an awful state even on 100 mcgs. My neutrophil reading was exactly the same as yours on 100 mcgs so I had two weeks rest as well. I was told it was too dangerous to continue, especially with the bone marrow situation. First time I had to have gsf injections to boost the bone marrow. I'm on my rest week now and do nothing but sleep. Catching up on all my missed sleep, I guess! Seeing my Onco next week. X
I was dignoised secondsary last year and I am on Letrozole and Palbocicib. I am in the same situation as you.
My white cell was crashed down to 0.7 first when I was on 125mc, defered two or three weeks and reduced to 100cm, now I am struggled with nertrophils, I has beed defered two weeks now because the Palbocicib has stopped take but my netrophils was 0.5 last week.0.7this week. It is really depressing.It is going to reduce again.
Hi Annie, sorry to read you’ve experienced such problems. It did read that way to me, have you tried omitting/reducing what you have and seeing if it helps at all? I now use buckwheat flour a lot, have read it’s more of a grain, I don’t think that was mentioned but can’t be sure. Crossing my fingers and toes for you! Kxx
Thanks for this, Kate. Will check it out. I use rye bread mostly, but that seems to mean we should cut out pastry as well? All wheat based in fact. 🍰🍕🌭🍩🍪
I've been on Letrozole since before my radiotherapy in September, and so far - touch wood - I'm almost SE free. The Palbociclib has, however, knocked the stuffing out of me. My neutrophils crashed on 125mcgm, and I had a two week holiday in hospital. It took over two months to recover from that. 🤕 I also didn't tolerate 100mcgm well - apparently . I felt very low and extremely lethargic. Neutrophils were down to .4 After a two week break I'm on 75mcg , so I need everyone's fingers and toes crossed this time. 🍀
I had extreme nausea when I took the Letrozole and Palbociclib together. I now take the Letrozole at night, and put up with a few night sweats. The Palbociclib I take in the morning with my brekky. The brand of Letrozole definitely affects my night sweats, so I stick with Teva. X
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
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
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
Thank you for the responses and support. I am preparing my advocacy messages for my oncology appointment tomorrow and will see how things go!
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
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
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.
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?
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
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
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?
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
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 .
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.
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?
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.
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
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!!!
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.