PIPA trial

Hi Ladies… I’m new here.
In 2 days time I’m starting on a trial called PIPA. A combination of 3 drugs. Letrozole, Imbrance and a new drug called Taselicib. Never done a trial… and don’t know what to expect. Has anyone else done this trial? Thanks xx

Hi Carole, I haven’t posted much recently but I’ve been on the PIPA trial for nearly 10 months. I’m on the phase 1A part which was testing escalating doses of Ibrance (also called Palbociclib) with Taselisib. If you are having Letrozole as well, I think you must be on the phase 1B part which is adding a hormonal drug. Are you being seen in Marsden in Sutton? The drug development unit is really lovely there. I have had very good results with my 2 drugs so I wish you the best of luck as well.

Please feel free to PM me if you want more information, I thought when I started that I’d have lots of “pipers” at the hospital but it seems that my phase was very small!! x

Hiya… I’m going to be on 1C. I’m at the Marsden in Fulham.
Do you have many side effects? Great to hear you’ve been on it 10 months… it must be a good combination! X

Hi again Carole, my side effects at the start were gastric upsets and diarrhoea, some mouth ulcers and feeling tired. If you Google Ibrance many people have neutropenia that means a lowered dose or mini breaks but I have never had a problem on the highest dose of 125mg so I’m continuing with that. I think the trial is going forward with a lower dose of 100mg?? so don’t worry, you will have the best monitoring you can imagine!

 

My side effects have got much better with time, the only lasting one is that my hair started to thin a lot, along with brows and lashes. Again I think this is documented to be the Ibrance but everyone has different reactions.

 

I have followed all the instructions to the letter because I really wanted to be on the trial and have a 40% reduction in my tumour. So my tip is: check with the unit before taking any supplements, drugs etc that might affect your result. No grapefruit or marmalade!!!

 

fingers crossed it all goes well, keep us posted xx

That’s great! Thank you for that. I’ve heard we are well looked after and monitored closely on trials. It’s great to know side effects are not too bad and improve in time. I teach full time so i need to be well! Lol
Not sure what the dose is yet, will find out tomorrow. I know it’s 3 weeks on and one week off
40% reduction… that’s amazing! Are you bone mets only? Well done you!

I don’t use supplements but thanks for the tip… love grapefruit but couldn’t have it with last drugs. Didn’t know about Marmalade tho.
Really pleased it’s going well for you. I will let you know how I get on tomorrow!
Xx

Hi Janni, I was told that for this trial specifically, grapefruit and also Seville oranges were off limits. When I asked about marmalade my Onc said that is was to be avoided because it’s generally made from Seville oranges! They are probably being ultra careful because it is a trial. I joke to my friends that I phone the docs if I want to eat a Tic-tac!! Joking aside I don’t think you need to worry with hormone therapy on its own but check with your team if you are concerned xx