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

They have been collecting biopsies for over 12 months so you can definitely have yours tested with the SMP-2 programme. 

Ask about getting your biopsy sent off. 

I don't know how other hospitals are operating outside the QE I'm afraid, but the Matrix opened 31st March and has started treating people.

If you search the CRUK clinical trials it is on there, maybe print that off or email the link to your nurse? Ask for the SMP-2 contact at the Marsden - it is a cancer centre I think (?) so will have one.

Hopefully a Marsden patient will be along soon to help. 

jujuju
Posted by

Hi here is the link to the page at cancer research. You can sign up for it now and that gives them all they need to test for mutations, provided they have enough tissue. very little open for treatment yet, but they are recruiting for ages and new arms will open as time progresses. As my oncologist said it has all gone slower than they thought.Dont worry Olivia , you will get treatment.

Best wishes. Julie xx

Pepperdine
Posted by

yes that's true olivia  the marsden told us that they keep postponing it. was meant to start at the beginning of the year. we have had to keep ringing and checking what's happening with my samples, they seem a bit up i the air, to say the least.


i got recommended for the trial by getting a second opinion, my local hospital is in canterbury kent, which i should have done last year when first diagnosed if nothing else it keeps your consultant on their toes and us reassured that i am getting the correct treatment.


best


 


angela

Angela (Pepperdine)
Fran123
Posted by

Hi jujuju

I have been a member for a few months now but never posted as yet as I am here for my husband.  I read lots of the posts though and have just read about this Matrix Trial and am really buzzing.  We are at Southampton too under Dr Bates and Dr Fenton.  My husband has just completed his treatment and we have the follow up scan in a couple of weeks to find out how successful it has been.  I wondered if he may be eligible for this trial.  Sorry to but in on someone else post, I was just soooo excited to read that there is something new happening.

Best wishes

Fran

Fran

jujuju
Posted by

Hi Fran, and welcome to the group! Hopefully the scan will show a good result. I am sure he will be eligible for the trial, he will need to speak to one of his oncologists. I see Luke Nolan at Winchester as I prefer it there, but he is signing people up at Southampton now. I see Sangeeta Paisey for radiotherapy which I have at Basingstoke as mine is straight forward stuff which they are able to do. Its a brand new unit and lovely staff. Hope to hear more from you and if I get round to organising a southern meet up, it would be good to meet you! Lots of us in the south now.

Best wishes. Julie x

Fran123
Posted by

Oh thanks so much Julie, we started at Winchester with Sangeeta Paisey (we live in Winchester) but she was about to leave for Basingstoke and as she was sending us to Southampton for radiotherapy thought it would be best to have a 'joined up' course of treatment.  Poor Trev has a second cancer on his tonsil, completely separate from the lung cancer, so he is about to start all over again, having mask made tomorrow and then chemo by injection and 6 more weeks of radiotherapy to his throat. I am dreading it having just finished it all for the lung.  He still hasn't got his appetite back and is painfully thin.  He is also having terrible night sweats, is that normal?  Anyway, now I have made the first post I shall have to keep it up :) Thank you again!

Best wishes Fran x

Fran

Ms D Yellow
Posted by

Hi Fran. My chap has been referred to the Marsden hospital by his ooncologist but he is not sure about a trial of any sort. But the reason i posted was that A gets massive sweats day and night. I have electric fans all over the house. Problem is then he gets cold. So wanted you to know that this is a normal thing - well it is here! Good luck with Trev's treatment. Keep strong. Hugs to you.


D

jujuju
Posted by

Fran Manuka honey 10+ helps a lot to prevent burning of the oesophagus although I am sure it will be much harder for trev. One tablespoon before and after every session. I also have three unopened bottles of oxycaine type stuff which sangeeta prescribed and had to be ordered in. They are to numb the throat if there is pain and take 20 mins before eating. I had no problems after using manuka honey. If the oxycaine might be helpful for Trev then pm me and see if we can meet and I can give you the stuff. I don't know anyone else who has been prescribed it. She is so caring and once phoned me at 7pm when she was off on the sick! You had your answer about sweats.... I am always freezing!

Best wishes. Julie x

Fran123
Posted by

Thank you D, that is very comforting, I was starting to get really worried he had an infection of something but there is nothing obviously wrong.

I had read your posts about Manuka honey Julie, I will definitely try that for him.  Trev also had oxetacaine for his gullet after radiotherapy, he suffered really badly for over a month when the radiotherapy strength was increased (he had radical radiotherapy) which is why I am dreading the throat one but they have said they will insert a feeding tube about week 3 ready for that.  Sorry to hear you are always cold, that must be worse that the sweats, I hate being cold! 

Thank you everyone for your help!

Fran

Fran

nannyjanny
Posted by

Hello everyone

I'm new to this group but just wanted to say that my husband is being considered for the matrix trial. We went to Birmingham on 21st May for initial meeting and to sign consent form for a new biopsy to be done as my husband was diagnosed 3 years ago and his original biopsy is too old.  We were hoping they'd be able to test that but they need a new one and if we want a chance of getting in this trial then it has to be done unfortunately. We were back there for a lung function test and blood tests yesterday and they said once the biopsy is done then it can take 2-3 months for testing!!!  We are really hopeful that Steve gets a match and hope we and everyone on here are lucky too!

Jan x

Tina 48
Posted by

I have been reading all your posts and this trial seems to be the best thing for lung cancer in a long time do any of you know if my mum who has not had any treatment at all yet would be concidered or do you have to go through chemo first I would appreciate any advice thanks tina

jujuju
Posted by

Ask about it straight away. Once anything is tested its held until a trial can be started anyway. Better to try and get ahead of the game if you can.

Best wishes. julie

Tina 48
Posted by

Thanks Julie I will ask mum has an app on 11 June  best wishes tina

Poppy1955
Posted by

Mine was same I choked as they sprayed throat they had to end it and I had to have a rigid brinchoscopy under General anesethic  when I woke I just wanted.ro run home as.fast.as my bandy legs would carry mexxxx

Poppy
Ginajsy
Posted by

Hi Hopeoftomorrow

I am sorry to hear of your Dad's diagnosis.

Please can I ask that you start a new thread for this question. This one is four years out of date now and I am sorry to say that the majority of the names I do not recognise. Flicking through the profiles, circumstances have changed for most since this thread and emails go out notifying that there is activity on a thread which could be upsetting to previous contributors.

I would gently suggest that anything with inactivity for a year or more is only used for reading.

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus