Thursday, February 15, 2007

28. No Show

Photos: Me and Kas; More Cold Scottish Weather; Johnny at Twickenham; My signed "Beefy" Botham Bat - for walking with him for Leukaemia Research...

Well my new buddy in conquering this Leukaemia is a no show.
In my last catch up with the doctors, they recommended I now should be looking at another form of medicine, as the Gleevec I’ve been munching for the past 16 months just hasn’t worked as well as they’d hoped. Or as well as I’d hoped for that matter.
The new drug to take over where the other left off was to be a relatively new drug by the same company called Nilotinib. The next phase in attacking the bad and ugly cells in CML patients sounded like it was to be brilliant – almost like a guarantee of bringing my PCR down to a nice manageable level. Unfortunately, the doc’s letters of request were knocked on the head. A definite no show…

It’s not all bad anyway. The drug company refused to let me use the new drug was because I’d had a “reasonable” response to Gleevec – funny how “reasonable” means different things to the doctors and the drug companies. As I said, it’s a relatively new drug and going through the final phase trials, where it will hopefully gain approval and be granted to be used by CML patients without the sometimes unattainable “optimal” Gleevec response. I’ve now been bumped up from 600mg (started at 400mg) to the max of 800mg. I thought I’d struggle with the side effects, but (touch wood – I am turning Scottish!) they all seem to be in check right now. In fact, my snoozing has been the best I’ve ever had.

So my next big PCR will be in 3 weeks time when I meet up with Mark, my Doctor, again. He’s pretty confident that it’s my size (too many BBQ Burgers) that has been the culprit in keeping me from getting a better PCR. I’m slightly larger than the average Scot…
They also received the “Mutations Test” back from the London Labs and it’s confirmed that there is NO mutation in the cells. So 800mg should hopefully do the trick. Fingers crossed once again!

As usual, everything has been happening at a hundred miles an hour. Kas and I hardly get to see each other lately as we’re both on work trips – a quick hello in the kitchen is about as much as we can fit in. Last weekend’s trip was the favourite for me though – down and back to London in a few hours to host our corporate box at Twickenham. It was unreal!
80,000 England rugby fans slowly and eerily singing ‘Sweet Chariot’ was enough to make the hairs on any person’s neck stand up. Pity about the rugby though, Johnny Wilkinson is back which is great for English Rugby but bad for the fans – far too much kicking for a southern hemisphere lad…

My Annual Charity Fundraiser has been having a few hiccups lately. Last year I raised a hefty £3,500 for Leukaemia Research and the search for this year’s event continues. I just booked for Augusts’ ‘London to Paris Bike Ride’ but was called yesterday to say it was cancelled. Funnily enough, there were not enough nutters willing to join me. If only we could another 20 people…
As climbing Mt Kilimanjaro is set for next year, I’m still looking at doing something a bit harder than most other events. There maybe an Event being organised for the Iceland Volcano Lava Trek in July. There’ll be more info to come – so get your wallets ready to sponsor me and Anthony Nolan Trust. Any other ideas are welcomed.

As usual, keep the messages and emails rolling in and if you’re young fit and male – check out the site as there are people desperate for you. No it’s not a porn site!
* Unreal to see where the Visitor's to this site since adding the Counter last week are from: Australia, USA, UK, Ireland, NZ, Spain, France, Chile, Greece, Bosnia, Czech Republic, Taiwan, Malaysia, Canada, Holland and Saudi Arabia...


Anonymous said...

Hi Matt, we have only just found your site, we have read it and Jack has looked through it, we wanted to say Hi to you and keep going, x

us lot xx
United Kingdom

Hayden Sinclair said...

Hey Matty,
Mate, just keep that big head of yours up in the air and dont worry about these little hiccups (bloody poms beating us in the cricket!). Your a great source of inspiration to us all mate, take it easy and talk soon.
Lots of love, Nick, Claire and Hayden Sinclair.

Rosanna =) said...

Hi Matt,
My husband, also a Matt, was diagnosed with CML this past June. I hope the 800mg works wonders for you!!

Take care!

rosanna =)

Anonymous said...

Hi Matt

Crikey, still one big rollercoaster for you, Matt! Hope things settle down, and hope that upping the drugs does the trick. Thanks for leaving a message on Rachel's page a few weeks back, it's always a pleasure to hear from you, you're always so upbeat.

Regards, Alison + Rachel

Alison Smith
United Kingdom

rob said...

Hi Matt - if you are looking for a challenge have you seen

through another forum I know someone looking to put a team together raising money for MS, let me know if your are interested


Anonymous said...

Hi Matt,
Just read your latest entry. So sorry to hear that Gleevec isn't working for you. Isn't dasatinib an option for you (trade name is Sprycel here)? I hope the larger dose of Gleevec does the trick. It's great to read about all of your activity--I look forward to getting back to such a full and active life!

Thanks for your posts to my CB site! The support really helps.

All the best,


Shira Weisbach
Oakland, CA
United States

Anonymous said...

Hi Matt, its great being able to read how your going and i hope the new dosage works for you. Each week i log in to see your progress and to see what new pics you've added. Good to see you and Dawsie celebrating Aussie Day! Take care. Liss Wrenford (Davo!)

Melissa Wrenford

Tash said...

Hey Matty,

I'll be up for the Iceland trip with you... even if I have to hit mum and dad up for "sponsership" money!!! Haha! Sounds fun... Hardwork, but fun!!

Just-in time and I have our fingers crossed that the new dosage will be perfect for you...

Love wee Tash and Jus

Amy and Ishmael said...

Matt: we really enjoy reading your blog and hearing what you and Karen are up to. Everytime we read what you have written we smile, though I often get carried away and laugh out loud, and slap my knee, and point at the screen, and laugh some more.
We hope that the increased Gleevec dosage has the side effect of reducing your burger intake, as well as bringing your PCR results to "optimal".
Let us know where to sign up as sponsors for your trek across Iceland.
Lots of Love
Amy and Ishmael