Matrix

[Giblets9]

Has anyone been involved in the matrix trial ? I might be a possible candidate and was wondering if anyone had any advice/ info? Was the treatment worth while?

[jujuju]

It seems to be running very slow/late. Most stage 3 and 4 are signed up for it. Don't know anyone that's actually on a trial yet. I am hoping I will get on it. Heres a link....ecmcnetwork.org.uk/news/ann... Best wishes

Julie

[Liampaul03]

I'm on a trial exactly like the matrix trial at Christies, I have had no side effects at all, had scans every 6 weeks and it been stable, I have completed 12 mths on it and my last dose was end nov 2015 I still go every 4 weeks for blood test and scan again in 3 mths, good luck x

[nannyjanny]

Hello. My husband was diagnosed with stage 4 lung cancer almost 4 years ago. Over that time he's been through 3 lots of chemotherapy and also some radiotherapy. Last year his consultant referred him to Birmingham for the matrix trial for gene testing. It involved a couple of visits for blood taken and lung function and also Steve had to have another biopsy taken as his original biopsy was too old! It turned out that he is ALK+ which had not shown when tested for that at diagnosis! There is a drug called crizotinib (xalkori) which is a targeted therapy used to treat ALK+ patients. It is chemo but is taken orally twice a day. It's very maneagable and has good results. Steve has been on it since last September and his recent scan showed some reduction which means the treatment is working. He feels so much better too! So I would say definitely give it a try. You never know what might come out of it. Good luck.

[Giblets9 in reply to nannyjanny]

Hi is your husband still on crizitonib? I am about to start, people have told me to insist on Mri scans as it can cause brain mets have you had any problems with this? There is a great ALK group on Facebook that gives wonderful advice if you're interested it's called living with non-small cell lung cancer and ALK mutation. 

[nannyjanny in reply to Giblets9]

Hi, yes my husband is still on crizotinib and doing well. No probs with brain mets, mainly stomach problems and swelling of the feet, but nothing that can't be managed easily.  Thanks for the info on the Facebook page. I'll check it out. Good luck to you.

[rebelina]

My brother was signed up for SMP2, leading on to the Lung Matrix Trial, but his original biopsy returned a technical failure on the gene testing. It was simply too poor quality. They can't get another biopsy from his lung as his lung tumours are too small (the biggest is about 1.3cm) and although he has extensive brain mets, including one at 2.5cm, a biopsy of a brain met isn't standard NHS practice. Anyway, the good news is he might be ALK+ too, as a review of his original ALK test (initiated by the request for his biopsy block for SMP2) has been interpreted as having granualar positivity for ALK. They can't confirm that without another biopsy, and they don't consider this as definitely ALK positive, but it's a ray of light. That review would never have come about if it wasn't for SMP2/Matrix. So go for it...like nannyjanny I would say you never know what might come out of it!

It's a great opportunity to get extensive gene testing done, confirm ALK and EGFR status, and perhaps get some pioneering drugs for other mutations e.g. they are testing ALK drugs like crizotinib on ROS1 mutations, and they show great promise. Other drugs on the trial target mTOR, FGFR, and MET. Others are coming on stream, and the trial is fluid, moving people onto different drugs in the trial if they have been shown to work. There's also an immunotherapy arm for people without current druggable mutations. It's a pioneering trial.

For now my brother remains stable on pemetrexed, and hopefully when he gets progression they will be able to biopsy something and we can get a definitive ALK+.

Nannyjanny, chuffed for you and your husband on his ALK+ mutation. Not sure where you are, but Scotland has already approved ceritinib for second line after crizotinib.... Alectinib is coming through quickly (I think the FDA have approved it recently) ...things are looking very positive for ALK+ patients.