There has been a lot of interest in accessing Palbociclib/Ibrance through trials since NICE refused to fund it in the UK. Given the context, I thought a thread linking to trials might be useful. I will kick off with the trials I have heard about. Please add to the list so that others can benefit.
I am including Ribociclib trials as it is a similar agent.
Note many of these are international trials but include UK locations.
Study to Evaluate the Efficacy and Safety of Palbociclib in Combination With Fulvestrant or Letrozole in Patients With ER+, HER2- Locally Advanced or Metastatic Breast Cancer (PARSIFAL)
Thank you saltee, I was hoping that you would come on this website with the trials details as I don’t know how to copy them in here **hangs head in shame…** ?? There are many posters who may be interested and often their Oncs don’t seem to know about them!! xx
Hi,
Great work Saltee. The Glasgow one would have been great for me but people who have had chemo are excluded and that counts me out unfortunately. Our secondary trials up here are very limited unfortunately.
Waffles xxx
Well, I’m lucky to be at a hospital where trials are regularly reviwed. My onc is pretty on the ball. However I also dip into the link you gave us for all sorts of things on a regular basis as I used to work in public health… but I do think it’s a good thing to raise the issue with/remind everyone and to draw attention to the link… so thank you. moijanxx
Hi there can I just check - is palbociclib for ER positive breast cancer only? I am triple negative and am currently considering going on the METRIC trial. I have had recent progression on Taxol (first chemo tried). Waffles I am also in Glasgow. .
The other thing Saltee is, one can often register on a trial at another hospital, attend there initially and be accepted, but not necessarily have to trek there every month. It doesn’t necessarily mean you have to change hospitals, although there would usually be a need to attend some appointments, depending upon the trial.
Hi Carabel,
Noticed you mentioned you are in Glasgow. I attend a hospital in central Scotland but the oncologists come through from the Beatson to treat us and we get radiotherapy there too. So effectively we get the same treatment as you do in Glasgow.
Anyway, hope everything is going OK with you. I’m not Triple Negative but I do notice there are a few trials for your type of cancer at moment including METRIC. I wish you all the best with that. I haven’t been able to find any trials for me at moment but hope some will come through.
Please feel free to PM me if you ever want a chat.
waffles xxx
Hello, I’ve just been told today I’m going to be on ribociclib and letrozole after I have my oopherectomy. It’s not a trial as such as there are no placebos, and the trials have already been conducted. I’m having it as my first line for secondary bc bone mets xx
Hi from across the big drink. I pray pfizer comes down on costs and others can get this stuff. I did notice a drop in price here in the US the past month. I’ve been on Ibrance Letrazol and xometa …about to start round 7. Was diagnosed stage 2 june 2016 December “remission” January they dis a scan on shoulder thought nerve damage feom mastectomy… Nope it hit my bones. Stage 4 . Had my scans past week. One is showing healing the other 2 no change or growth . no new tumors. I will say as I havent seen any about. One additional thing. Melatonin. There are some studies with the letrazol… It helps block the cancer. Haven’t slept well in months added it after checking with dr. Take vitamins. My blood work has been surprisingly good. Low b12 and folic acid thats about it thou.
It does mess with the appetite… Does anyone else get cravings ? They are worse than the pregnancy type cravings! !! Fatigue and hot flashes are about the only problems I have.
This cocktail of meds really seems to be a miracle for us. Thank God and those who figured it out ! I just hope greed doesnt stop folks from getting it.
Much love from the US. We are strong we are Amazon! … Blessed be all.
(Amazons would cut the breast off upon reaching warrior status… Anyone fighting this is a warrior)