PIPA trial

I have now heard that I can be enrolled on this trial! Very happy as I feel that I am running out of options for treatment…

So, I will try to post a few times once I know more about it. All I know for now is that it is running at The Marsden in Sutton, and, I believe, the Christie. I will be on a Phase 1 part which looks at dose escalation to find a safe and effective dose in a number of patients. I will be on Palbociclib and Taselisib which are targeted therapies. I can’t explain how they work accurately as it’s complicated! Palbociclib, as I posted before, has passed clinical trials and is approved in the U.S. I think it’s also being used in a trial with primary breast cancer patients here in UK.

 

Anyway, it’s early days…it will mean trips to the Marsden every week and probably an overnight stay initially, lots of blood taking etc. it’s all worth it if it works!!

 

Sorry that this is all about me…I hope that everyone has a peaceful bank holiday.((((hugs))))

Hiya Stilhere

Pleased you are getting on this trial you will have to keep us informed how you get on with it I must admit I am quite ignorant about trials maybe when I have been through all the different treatments I may end up on one.But I wish you all success with this one and I hope it is kind to you.

 

Love and (((((((hugs))))))  xxx

Stillhere - that’s great news! Well done for getting on the trial. It sounds like an exciting prospect and I wish you great success. It would be wonderful if you could update us on your progress occasionally. My onc is looking into trials for me, she mentioned a couple of phase 1 trials yesterday but I don’t know any details. I need to go and chat to the recruitment person. I have TNBC but I guess you must be ER+, having had a quick look at the trial details?

X

Hiya still here
Good news getting on the trial. Is anyone of those fancy names anything to do with “ibrance” …I thought I read somewhere that there were some trials starting with ibrance and letrozole together.
Keep posting we are all interested in new things and of course how YOU are doing as well.
Hugs xxc

Hallo Carolyn, just to say I love your cheery, funny posts!! I’m a Carolyn too but not as hilarious!! Yes, Ibrance is Palbociclib I know Funny Face from the U.S. is on it so I hope that she will post about side effects etc in time. xx

Well hello to a fellow Carolyn …not many of us about.
Glad u enjoy my.postings …I think a lot of ladies find me annoying !!
Ibrance is a wonder drug which all us her2neg are hoping for as we can’t have herceptin.
Funny face has a lot of experience of a lot of treatments but doesn’t visit us enough. Sometimes she lurks on the cyber cafe as she organised the pontoon boat with slide …long story if u don’t visit the cyber cafe.
Anyway …being serious ( what moi) I hope the trial goes well.
Hugs xxx

Thanks Nicky for that. I did tell bcc that I had virtually no medical.knowledge and wouldn’t b much help but hopefully I can add a little cheer at times . The ladies will still need you, Julie, marirose and dawn for serious advice!!
Between you all …there is more knowledge than any breast cancer nurses at the hospitals.
In fact I haven’t seen one at all …they seem to.lurk around the primary ladies at our hospital on another floor.
Hugs xxc

Thank you for that Barton …the cheque is in the post!! At least the coffee will b on me next time !!
Hugs xx

Hi, I am new here and an american…BUT i am in my eleventh month of Ibrance. I would love to be a resource for you as you move forward with this. It is a very exciting drug therapy…still a powerful chemo drug. I am also taking Xgera for profolactic use aganist bone mets recurrance. and a ton of supplements to manage side effects.

Welcome to our Forum Mary

Thank you for the information regarding Ibrance I know a lot of ladies will be interested and also your knowledge. We love to here from Funny Face who is also from America and it is good that we can share in our treatments of the horrible discease we all have. We look forwar to seeing more of you on our forum.  

 

Love M xxx

I asked my oncologist last week about clinical trials and ibrance but he said that I had too many options to try yet !!
Hopefully …it will be proven and available soon to everyone …if only it was cheaper !!

Hi Moijan, I don’t know how they are choosing people for the Ibrance/Taselisib trial, but I learnt last week from the doctors that the phase 1 is not just for breast cancer patients but other types as well. I have only had capecitabine and fulvestrant since my secondary diagnosis but I’ve had had many recurrences and treatments so think I’m running out of options.

After a tough first cycle with lots of SEs, my 2nd so far has been pretty good, I’m almost at week 3 and so far nausea and mouth sores under control, no infections and WBC recovered again. I have a tumour in my armpit which is just under the skin and *feels* smaller, CT scan at end of June, fingers crossed.

Wishing you the best of luck with your next treatment, there is still plenty of time to join the trial so may see you there! Xx

Just a happy update - I had a CT scan end of June and my lumps and bumps have reduced by 20% in 7 weeks! So relieved that I can continue on the trial and am now feeling pretty good on cycle 3!! I was also told that my DNA had been profiled and I had “some interesting proteins”… Glad a bit of me is interesting…so I might be eligible for other trials. Is this good? Let’s hope so.

 

I’m a bit out of touch because I’ve had my brother staying with his family then 6 days in Portugal. Thinking of everyone on the roller-coaster of cancer (((((hugs)))))

Hiya still here
That’s such good news and it sounds like ibrance is good for you and doing its job.
Pity its not available for everyone yet but hopefully if it proves itself … will be released soon.
Hugs xxx

That’s great Tournosol! I’d love to hear updates about how you get on. Fingers crossed for you. I hope that Ibrance is for everyone soon, at least we know it’s out there xx