Clinical Trial for Triple Negative Metastatic - has did you get on a trial?

[hellyhead]

What I put in the other thread was ......

Movetothecountry, hello, I wonder what you decided to do? I am meeting a trial researcher in Glasgow on Thurs to discuss entry to a trial as my first line of treatment for TN recurrence in a chest lymph node and lung. Exactly the same as you, it is delaying start of standard chemo which would be carboplatin and I could have been on it already.The trlal is for Pembrolizumab, which hasn't been approved for breast cancer yet but is used for lung cancer and melanoma. My tumour has been compressing my main vein to the heart, and I had a stent put in on Weds last week to protect the vein to give me time for any drug treatment to start working. I had 5 shots of radiotherapy to the tumour in June which helped for a few weeks but then the vein obstruction symptoms recurred hence the stent insertion. I'm pretty alarmed that I had this tumour diagnosed in June (although it's been there a lot longer!) and am still waiting to start any chemo/drug treatment - and worried by the length of time a trial drug might take to give me any tumour shrinkage - if it does at all! But of course there is no guarantee that the carboplatin or anything else will work either and the oncologist's feeling is that if I run through several chemos first then I might well be too ill or my disease too advanced for the trial, so they are recommending I give the trial a shot first. 

It's a really tricky one tho isn't it. The questions I want the answers to are whether the trial drug will give me longer survival and better quality of life than normal chemo.... but no one can answer that I guess and statistics are dangerous things! I hadn't heard of your trial drug Olaparib. I haven't as far as know been tested for the BRCA mutation. 

Be interesting to hear from anyone else in trials for TNBC or facing these choices.

All the best, Helen 

[hellyhead]

Hi, I have just posted about trials in the TNBC recurrences thread in Living with Secondary Breast Cancer since there had been a little discussion of trials there. Perhaps it would be more appropriate to put it here.

It might be really useful to have a TNBC trials thread, there seem to be a few around and it would be great to hear other peoples' thoughts and experiences. I'm meeeting a trial director on Thursday - but would he know about other trials available or just push me onto the one he is running? How on earth do you make decisions about which would be the most appropriate one to go into?

Helen

[Movetothecountry]

I would suggest speaking to the oncologist and asking for a referral to a trial, they will know if any recruiting. There are criteria for joining trials, based on many things and each trial is different from another
It will involve travel to the unit running the trial

[Jo1407]

Hello. I'm new to this forum, and I'm looking for advice for my mum. She's been told today that her chemo has stopped working, and the next stage is a trial. She's stage 4 triple negative, and has been since her diagnosis in 2012. Thank you 

[stresshead]

Hi Catherine, i too am TN and am at the stage whewre i need a trial. Can you give me any details of things you have heard about and let me know what your onc says. Thanks. x

[CatherineJ]

Thanks for replying.  I'm seeing my oncologist tomorrow, fingers crossed!

[Stillhere]

Hi Catherine, happy belated Christmas, I've just logged in and seen your post. I'm not TN but I'm on a trial and this was my experience which might help.

I was put forward for my trial because I fulfilled all the criteria which can be quite selective. This would include things like previous treatments, your tumour status, ( I have a ??PIK mutation) your health, your ability to attend when required...this was every week initially for me etc. Then I went for lots of tests, scans and signed forms etc. I had one hiccup but was taken into the trial and have now been on mine since May and it is still working well! I was lucky because the trial is taking place at my hospital which is The Marsden in Sutton.

What I would say to anyone considering a trial is...talk to your own oncologist and check whether it would be suitable first. They should get the information for you and put you forward. Also understand whether it's a phase 1,2 or 3 and what that means. Also are you going to be randomly allocated into 1 arm which could be a placebo ie you possibly are not being given the test drug? What side effects can you expect and how much of a commitment is the trial?

My trial was a phase 1 which looks at tolerated dosing in an escalation but I wanted a chance to try Ibrance which is already approved so I went for it with another drug.Some patients side effects were too severe and it hasn't all been plain sailing for me but I'm glad to be on the trial. I hope that this helps and good luck!! xx

[CatherineJ]

Hello everyone.  Hope you've had a nice Christmas.  I have Stage 4 Triple Negative breast cancer, and have been reading about a clinical trial offered at several places in the UK - has anyone got any advice on how you go about getting on one, how fast can it happen and who sanctions these things? I've emailed the trial directors but no reply.  Many thanks if anyone can offer any information.