Turned down for immunotherapy trial

[Neona57]

Today I went to the UCLH and signed up for the Patriot trial although I still have some hoops to jump through. However I was devastated to find out the reason that I was turned down for the immunotherapy trial was because I have clear cell cancer. Can anyone suggest a reason for this?

[Spencer2016]

Neona- I have been told the different types have very different tumor profiles and parps don’t work on all OC types. Unfortunately, even though I was an optimal candidate ( brca+, epithelial high grade) they did not work for me either. It’s all such a crap shoot. But keep looking, there are probably trials for just clear cell folks. Wishing you well. ♥️🙏🏻

[Neona57 in reply to Spencer2016]

Lesley says there is one coming up-just got to hang on and hope the Patriot trial gives me more time.

[January-2016-UK]

Good luck with the Patriot trial. I don't know which immunotherapy trial you were turned down but it may be that evidence shows that the drug being tested doesn't work on clear cell and therefore they'd be little point in putting you through any possible side effects, etc. for no benefit to you.

[Neona57 in reply to January-2016-UK]

The trial was called Triplet but I was never given the info on it. It was the sponsor who turned me down-think the hospital was a bit surprised.

[lesleysage]

Hello Neona,

I'm one of the 'Consumer Reps' for gynae cancer trials between CRUK-UCLH and am aware that a trial using an immunotherapy for relapsed clear cell patients is in the pipeline (to be called PEACOCC) and due to recruit in March 2018. Sadly, I realise this may not be in time and have been told it is to be restricted to five centres in UK only, but I don't know which ones until the full protocol is sent to me (for reading by an ordinary human being, not a medic!) - if you want me to email privately, please say.

Warm wishes,

Lesley

[Neona57 in reply to lesleysage]

Hi Lesley, this is very exciting info and I would be very grateful if you message me any info. I do hope it becomes available at the UCLH. The Patriot trial seems to have had some success in bringing stable disease-although not the same type of cancer as me so at least it gives me some hope that I can last that long. Many thanks, Wendy

[lesleysage in reply to Neona57]

Hi Wendy,

The Trials Coordinator for Consumer Reps has now got back to me. One of the sites is UCLH as the Chief Investigator works there. She cannot tell me the name of this Chief Investigator until the trial 'goes public' on the Clinical Trials website, which she hopes will be January. I've asked for the website details and will send those when I hear back. The Trial will only appear on this website once all the protocols have been fulfilled; if you then find the Chief Investigator is someone you know you will be free to approach her/him even before the call formally goes out for volunteers....at least I think I've understood that correctly. I'm new to this role and this is the first trial I've been asked to be 'Consumer Rep' for; as my OC is also clear cell I'm particularly interested in this one.

Thanks for helping me learn and I just hope it all moves quickly enough to help you.

Warm wishes again, Lesley

[Neona57 in reply to lesleysage]

Thank you-this can only be good news. I am taking the tests for the Patriot trial next week so will be on this for at least 2 months I suppose or longer if it works-never been on a trial before!

[lesleysage in reply to Neona57]

Hi again Wendy,

The worldwide website on which the trial will be placed when all the protocols are complete is:-

clinicaltrials.gov/

The UK specific site on which Patriot is outlined now is:-

cancerresearchuk.org/about-...

However, I'll let you know when I hear anything. In the meantime, fingers crossed for Patriot trial tests.

Warm wishes, Lesley

[Neona57 in reply to lesleysage]

Thanks so much Lesley-guessing it will be a while before I have any news. Have the scans on Monday. Do you know if Mcmillan have any funding for travel costs as Patriot is an academic trial and so there is no help for me?

[lesleysage in reply to Neona57]

Hello Wendy, sorry for the delay; I've been away for the weekend.

I will ask the question of the two ladies who work for Cancer Research UK & UCLH and who guide 'Consumer Reps' but my understanding is that in UK we cannot 'profit' from being involved in trials (in US, this is different I think), but there maybe legitimate cost refund for some parts of taking part in some trials; hence I will ask the question. I'll come back to you as soon as I hear anything.

Thank you for asking as this helps me learn.

Good luck with the scans tomorrow, even though I appreciate you won't necessarily get the results tomorrow.

Warm wishes,

Lesley

[Neona57 in reply to lesleysage]

Many thanks Lesley

[lesleysage in reply to Neona57]

Hope today is going ok, Wendy,

The answer is:-

"The payment for travel varies between trials and does depend a little bit on who is funding the trial. If it is purely academic (with funding from a charity like CR UK) then there may not be any extra money for travel in the budget.

If however, there is some funding from a pharmaceutical company then this may mean that visits that are outside of usual care are reimbursed. Its difficult to estimate at the time of budget setting exactly how much this will be for each patient as you can imagine, so sometimes this is only reimbursed up to a certain amount."

From this, Wendy, I suspect you are thinking the same as me...ask and also keep all receipts and tickets that your traveling incurs. Good luck with everything and I'll keep in touch again when PEACOCC goes live.

Warm wishes and hope the festive season is as good as it possibly can be.

Lesley

[Neona57 in reply to lesleysage]

Thanks so much Lesley.

[lesleysage in reply to Neona57]

Good morning Wendy,

I have heard this morning that the PEACOCC trial has just been posted on the worldwide database of clinical trials:- clinicaltrials.gov/ct2/show...

I'll post this onto the forum shortly.

I've had a quick run through the detail on this link and the recruiting date looks like June this year. All the criteria for eligibility for inclusion on the trail are summarised.

I hope this comes in time for you; I hope you are holding your own; I know I hope lots of things for all of us with this, and other, diseases!! But hope today is as good a day for you as it can be.

Warm wishes. Lesley

[Neona57 in reply to lesleysage]

Hi Lesley, this is good news. I have had Polymyalgia which might be an exclusion but I am nearly off the steroids so might get away with it. I have my first scan on the Patriot trial today.

[lesleysage in reply to Neona57]

Fingers crossed for Patriot, the polymyalgia and hopefully this new one too.

L x

[Hidden]

So sorry to hear this, it is a learning curve for us all going through the protocols but if it doesnt work well there is no point in doing it. Wish you well with the Patriot trial