Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

Lung Matrix Trial - Experiences?

BillyBolly
Posted by

Hi everyone

I hope you don't mind me starting this Lysistrata?

I have been in contact with the matrix team and they opened for participants on 31st March, from Newcastle Hospital and the QE in Birmingham.

They are taking biopsy's to test and have been for a while.

You can ask to be considered through your oncologist.

If your tumour does not come under any of the mutations (and they are finding new ones all the time) then you can be considered for the immunotherapy arm instead.

Lysistrata suggested we all put our matrix experiences in one place and i thought this could be it?

Billy xx

Lysistrata
Posted by

Thanks Billy, I'm absolutely delighted you started this thread!

The St James's Institute of Oncology, Leeds, has also been recruiting patients since then. Birmingham is the centre for testing biopsies - it's where my original tests for mutations went in Jan 2014.

Here's a good link about the Trials which lists the hospitals involved.

Carol x.

knicnic
Posted by

Is there any information anywhere of the criteria to be considered for the trial? eg exclusions for brain mets etc. 

Thank you xxx

loftyloo
Posted by

Hi ther,

just picked up on this new thread.

Think you really have to follow the link from Carol and see what happens.

you can only but ask  (OR SHOUT) if you think you might be right for this.

If you don't ask you don't get.

Lots of love,

Jacki

x x x x x

Jacki

BillyBolly
Posted by

Link http://ciic.org.uk/clinical-themes/ciic-clinical-feature/

The above link shows some more info from the guy leading it

Link http://ciic.org.uk/gary-middleton-explaining-national-lung-matrix/

This link should show a video

I don't know exact terms for the trial but have found the team very approachable. The link Lysistrata posted has a email contact at the bottom

Billy xx

Ps Thanks Lysistrata for the linking advice!

loftyloo
Posted by

Billy, just go for that link from Carol & see what happens.

COME ON SUNSHINE GO FOR I(T !!!!!

Jacki

BillyBolly
Posted by

Sorry I can't do clickable links!! If anyone can give me a clue I'll edit my post x

Lysistrata
Posted by

@Billy - I had to ask the Support team, even though I know and use html! Easy when you know how.

OK, you have to type the words FIRST where you want the link to appear. These words can simply be e.g 'click here' or the full link itself.

Then you highlight those words with your cursor.

(This first part was the bit I hadn't realised.)

Then - and only then - the little linked chain will appear (6th from right on the bar above the message you're writing). If you peer at it before highlighting you can just about see a ghostly outline. The unlink - broken chain - also appears.

Click on the chain link and a little box will appear into which you enter the full http link. Copy and paste works well for this.

Finally click on 'insert' and Bob's your uncle.

It sounds much more complicated than it is. I'll let you edit your own post above.

This comment was brought to y'all in the interests of public information and to stop you wasting hours of your precious lives like what I did trying to do links on this forum. I'm a bit masculine like that, I'll go on for hours with techie stuff refusing to stop and ask for help. Also see RTFM...

Carol x

BillyBolly
Posted by

Just waiting to find out whether the Matrix Team would need a new biopsy or can use the one that was already taken and tested.

Will update when I know!

Lysistrata
Posted by

My oncologist (who's part of the research team at Leeds) said they have enough from my bronchoscopy samples taken January 2014 - which was sent off to the central Birmingham lab for mutation testing at the time. (I didn't have any of the useful ones then.) Hope it's the same.

I'm pretty relieved as the bronchoscopy was a bloody awful procedure for me. They do sedate you but it was about as successful as having a cup of Horlicks. I suspect it's only to stop you lashing out at the nurses! I think I sobbed and coughed and struggled all the way through.

And you all thought I was brave, eh? Nope.

jujuju
Posted by

They still have samples of my tumour stored at Southampton. Hope its in a fridge, or smoked or air dried or something. They use that for testing.

Carol talking about bronchoscopy mine was bad. I choked and bled and my jaw was dislocated.They wouldn't take the tube out til they stopped the bleed with adrenaline. Nightmare.

Julie

BillyBolly
Posted by

How terrible for you both!

That sounds positive then that they can test the existing biopsy, anything must be better than going through that again!

Pepperdine
Posted by

we were told about a month ago that they were asking st saviour's for my biopsy.  only now told that they had mislaid it. we kept having to ring the marsden. just to warn others that if they haven't heard for a bit make sure that they haven't lost you in the system.


 


best


angela

Angela (Pepperdine)
Lysistrata
Posted by

Angela

Your local hospital (having now read your profile with my ever-raising but currently non-existent eyebrows) sounds a bit, erm, under-achieving. So glad you're now at the Marsden as well.

Maybe you could help look for your sample? It's probably in the fridge next to your consultant's old yogurt. I do really really hope there isn't another bronchoscopy needed... but if so, worth it. If I ever need another one I'll know to take lots of painkillers first, and have a bottle of Tanqueray Gin handy for when I get home. (Gin is one of my cancer supplements, don't you know?)

You are right to give out a warning to everyone to check. Thank you. And all good wishes sent from West Yorkshire to East Kent.

Carol

jujuju
Posted by

I will  have a bottle of red before I go if they want another one off me! xx