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.
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
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?
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?
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.
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
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
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.
I’m on my third round of letrazol/palbociclib and utterly exhausted. I’m also on zometa infusion and zoladex injection.no idea which is responsible for what side effect!
I have a monthly blood test but this is linked to the zometa so can be at different times in my palbociclib cycle.last month neutrophils were on 0.9 and calcium a bit high but they didn’t change anything.
I’ve got my first MRI since stsrting this routine next week so will hopefully find out if it’s working!
Great news! I got my scan results after being on palbociclib with letrazol, zometa and zoladex for 3 months … all tumours have reduced, no new areas and the worst one in my vertebra is starting to rebuild itself.
Wonderful news for you …let’s hope the drug keeps doing what it says on the tin …hopefully it will be available to more ladies soon once it’s proven itself.
Hi Christine.
I’m in a similar position. I was diagnosed with secondaries to my liver 4 weeks ago. I started zoladex injections 3 weeks ago, letrozole last Friday and set to start palbociclib this coming Monday. ?
I’m trying to do my best with diet but I’m finding advice to be a bit of a minefield.
Do let me know how you get on. It would be good to swap tips etc. X
I’m a big believer in lifestyle changes because I genuinely think they’ve helped both me and my mum. She had a rare aggressive oesophageal cancer over twenty years ago and all previous patients with the same had only lived 9 months post diagnosis, as you can imagine swallowing was a major issue. My mum lived over twice as long, and actually died of a heart attack probably due to the effects of the strong chemo, could swallow most foods and wasn’t even taking anything for pain.
I was diagnosed straight to stage 4, mets to upper spine, October 15, my primary couldn’t be found and there was even a discussion about my mets, it was a biopsy of my lymph nodes which confirmed my diagnosis. Because of this I only started Letrozole towards the end of November 15 but started making changes to my diet from day one (even though I ate healthily before), exercised a little, went to bed earlier (I was a real night owl) and my repeat ct in early February 16 was NED.
I’m not someone who believes all this will cure me but I do believe the changes I made really helped me. I mainly follow a plant based diet, occasionally have meat or fish but eat eggs, avoid all processed food as much as I can, gave up sugar the day I was told I had cancer, but have now re introduced more fruit, initially I limited this, I gave up dairy apart from goat or raw milk in my one or two cups of tea and in the kefir I make, and now occasionally I have goat or sheeps cheese or yogurt. I don’t think all this is necessary but I wanted to do it and think feeling I was doing something helped me…Kate x
I hope you can get back to fell walking soon. I can imagine how you miss it. We love walking in the lakes.
Re diet; there is an article on the American site inspire.com on the secondary breast cancer forum where an oncology researcher discusses the research that was printed in the telegraph.
It’s worth a read. He says there’s absolutely no evidence to support what the story states. I tried to post a link but it won’t allow me.
If you google ‘soy genistein and ibrance study inspire.com’ you will find it.
Can’t see the point in having to give up bread too if there’s no need.
Ibrance is the American name for palbociclib. It’s worth signing up to inspire as there’s an absolute wealth of info regarding these drugs on there. The American’s have been trialing them for years.
I do try to avoid refined sugar.
I can’t wait for Monday to arrive so I can just start the palbociclib. I did really well on fec-t last year and apparently it’s nowhere near as bad as that, so I’m really hoping this is the case.
I cold capped on chemo and kept 99% of my hair. I really hope I don’t lose it now. ? x
Kate, how awful that cancer got your Mam and now you find yourself in your own battle.
It’s fantastic that you were NED so soon after diagnosis. Long may it continue.
I am avoiding refined sugar, but I’d be lying if I said I didn’t miss it now and again and I didn’t even eat that much. I did enjoy the odd jelly or boiled sweet though. X