25-10-2018 11:24 PM
Hi Tiny tears, I am on a trial with 19 others, with Letrozole and Palbociclib and started October last year. NICE signed off on it early this year, so it is still very new , only a year, and I think the best answer you will get. I have success with the combination as my mets have all shrunk, X
23-10-2018 05:56 PM
Hi This is my first post I have dx with secondary with small nodes in both my lungs following a PET Scan. I'm on the third cycle of Ibrance, and feel really good. Only bad at night when I stay still for too long, I get severe joint pains. Love to hear of ladies been on the cycle of letrozole and Ibrance for a number of years, and what their experience has been?
17-09-2018 03:31 PM
I work on the Policy and Campaigns team at Breast Cancer Care, and I wanted to ask if anyone has been treated with ribociclib in combination with fulvestrant?
This combination is currently being considered by the National Institute for Health and Care Excellence (NICE) to be made available on the NHS in England for treating advanced hormone-receptor positive, HER2 negative secondary (metastatic) breast cancer.
Ribociclib in combination with an aromatase inhibitor is currently available as a first-line treatment on the NHS in England for hormone-receptor positive, HER2 negative locally advanced or secondary breast cancer. However, its use in combination with fulvestrant will also offer those who have previously been treated with one line of hormone therapy for their secondary breast cancer the opportunity to benefit from this drug.
We are gathering evidence to contribute to NICE’s patient carer groups submissions and we want to hear from anyone who is being or has been treated with ribociclib in combination with fulvestrant to help us inform our response on what access to this drug would mean to women with hormone-receptor positive, HER2 negative breast cancer.
Your answers will be collated and presented to NICE and any quotes or information you supply will be anonymised in our evidence. The questions we’d like you to feedback on are:
We are looking for responses by Wednesday 19 September.
If you have any questions about our work in this area, please email email@example.com.
15-08-2018 11:16 PM
Hi I have been on 125mgs palbociclib take it at night only side effect was abdo pain and nausea now take lanzoprazole 15mgs which helps . Read on American and Canadian websites about using astragalus for white cells which I started after second month as white cells were very low have been good since then got it at Holland and Barret . I take letrezole at lunchtime. Had scan results today tumours in chest breast and pelvis all smaller after 3 months. Hope you are doing ok
24-07-2018 08:59 AM
24-07-2018 04:14 AM
23-07-2018 11:00 AM
I'm so pleased for you, River, that is a great result! It's lovely to relax again for a few months isn't it? I never know whether to keep reporting my trial results as so many of us haven't had the chance to try Palbociclib, but I have been taking it in my trial for nearly 2 1/2 years. I have had side effects as I'm still on a high dose but it's worked for me, I'm so grateful to my team at the drug development unit.
Im sure you will have continued success now it is working for you x
23-07-2018 08:52 AM
Little good news story. I was diagnosed with bone mets Christmas 2017 and have been on Palbociclib / Letrazole plus Zometa and Zoladex since January.
Had my first 3 month MRI scan end of March which showed reduction in all three tumours (vertebra, sacrum and pubic bone) and the larger vetebra one has started to re-build itself.
Well, just had the results from my 6 month MRI which shows stable although there is some activity, but no growth and no new tumours.
It is really reassuring to have these regular scans as it makes the stress of living with the diagnosis and hardship of the side effects so worthwhile. x
26-04-2018 12:19 AM
Hi Annrose, my Onco doesn't mind when I take the two drugs, but my experience with nausea and dizziness taking both together has caused me to split them. I take Letrozole in the evening, then sweats occur overnight and they're out of the way. Teva brand has fewer SE for me. The Palbo I take in the morning with my breakfast. I haven't tolerated it very well, so am now on the lowest dose with a two week rest period. It will be interesting to get the results of my CT scan tomorrow. Hope this helps. X
22-04-2018 11:58 AM
22-04-2018 11:41 AM - edited 22-04-2018 11:56 AM
I first posted this a couple of months or so ago but there seems to be 3 threads on Palbociclib. It’s been mentioned on the Inspire forum too. I’m fully aware research about diet isn’t always welcome here but this seems reputable enough and may be of interest to some who haven’t seen it.
Just to add there was more information on the Body Soul Nutrition fb page/website along with comment from Cancer Research here in Oxford.
22-04-2018 11:23 AM
Good morning ... Riversidedawn
i was diagnosed with breast mets stage 4 September 17. Letrozole taken from September PALBOCICLIB taken from December 17. I have had to come off twice due to low white blood count. Now on lower dose 100mg still have a lot of side effects. Last ct scan showed no improvement.
I will persevere until next ct scan then take advice. Mets in my spine pelvic area legs shoulders and upper arms. Maybe quality of life would be better without PALBOCICLIB who knows?
Can anyone tell me is it better to take both latrozole and PALBOCICLIB at the same time or an hour later 4 hours later, I have asked my oncologist to no avail.
09-01-2018 11:05 AM
09-01-2018 05:26 AM
29-11-2017 04:16 PM
29-11-2017 03:57 PM
I'm right with you, Moijan, much as I am delighted that Palbociclib has been approved for first line metastatic treatment I am surprised that NICE hasn't considered it for pre-treated patients who need another lifeline. It does come with side effects so a pure hormonal would seem a better first step with a secondary diagnosis as it is more easily tolerated.
Still, who am I to know? x