Thursday, March 29, 2007

31. Good With The Bad






Photos: Me and Kas at Mar Hall (1 Year Wedding Anniversary); My bro Nick after shaving his hair for the Leukaemia Foundation...

Finally I have some news to write about. There are actually two bits I need to get through…one that I’m absolutely stoked about, and the other I wish I had something better to report. What’s that saying again...you’ve got to take the good with the bad? The past month has just been so hectic with our lives in Scotland that I’ve hardly had a chance to sit down and reflect on anything. It’s just full steam ahead as usual…

I guess I’ll start with the not so good news…well, not as good as either myself, Kas or the doctor expected anyway. My PCR has now officially been “stuck” at around 2.5% since last September after hearing I’d finally achieved a great result of 1.5% and a 0% reading in my bone marrow last August. My Gleevec dosage had been increased at the start of this year (from 600mg to 800mg) in an attempt by the docs to combat this and have a go at reducing my PCR levels to a reasonable level. The news is that it is still stuck and the result today was 2.9%. It may look that it’s going up slightly but chances are, it is just remaining the same level. To be honest, we were expecting a much lower result…I’m feel the fittest I’ve ever been, most of my burger belly has diminished and I’m munching a pretty good diet. In my head I thought this would help.
So I will go back to my Consultant next Wednesday and have a chat about our options. What’s the next step? As the drug company seems to think I’ve achieved a decent enough result to not warrant a change of medication, this may inspire them to look at this case a bit more generously. Not that I can complain with my current treatment anyway from the hospital, I’m getting very good attention here in the bonny lands and my doc is a great guy. So hopefully either the next PCR test will show some positive signs, the drug company allow me to move onto the new meds “son of Gleevec” or we move down the bone marrow transplant route. Still an option we are weary of…on the other hand, if it all works well with the BMT then there’s a great chance of a full cure. Back to the drawing board then I guess…

Now the news I’ve been holding in most of this year…my wife Karen is pregnant. She had her first scan last week and it appears we have a wee hyperactive baby growing well – hands waving, legs kicking and tossing and turning. Maybe just as irritable as us and that same urge to keep moving about and not stay still. I’m so happy as Kas never had to go down the IVF route (touch wood) – it just so happened that I found this out on the day I’d booked us in for IVF and then I saw an article about men on Gleevec being able to conceive normally. Very nice! So now we have a third Sinclair joining the ranks in September…
This is obviously something I will be fighting harder than ever to remain well for. To know I have a child due this year (expected 5 years exactly after Kas and I got together), it makes me even more focused and determined to get some better results.

Talking of Kas and my time together; we just celebrated our 1 year wedding anniversary last weekend. We went back to the site where the best day ever took place, Mar Hall just outside of Glasgow. The sun made a special appearance for us, the place looked stunning and the upgrade we received went down very well. To know what’s happened over the past 12 months is enough to give me a headache…so many events, ups and downs, fun times and sad ones too, plenty of trips away and the chance to have my family all the way over from Australia to visit me. I can’t say it’s all been bad as we’ve learnt so much in that time. Theoretically I know how these Leukaemia meds should work and how they should work in my body – let’s just hope they start doing what they’re designed for...
So now it’s only 5 weeks away until my parents board their flight and endure the long trip back up the Northern Hemisphere and visit us in our new pad in Scotland. They’ll just make it in time to come to Kas’s wee bro, Gav’s wedding in May…I can’t wait to have them back over – it’ll fun too for them to see Karen’s bump already taking form.

So until my next appointment with my Consultant in a week’s time, keep the messages coming in and if you have time (of course you do), check out a few of these sites…

This is for my big bro Nick (photos at top of page), who just shaved his hair off for the Leukaemia Foundation in Australia. Such a great effort as Nick raised a hefty total for the charity. He’s gone the skin head look…as a policeman I’d imagine there aren’t too many criminals who’d be messing with him:
http://www.worldsgreatestshave.com/profile.php?id=336835

Also, because of our new arrival due in September, I’ve postponed my assault on Mount Kilimanjaro until August 2008 (doing it for the Anthony Nolan Trust). As I won’t be fundraising for this event until later this year, I’ve got to get some training in….there’s not too many better ways than to join a few mates and “Conquer a Corbett” for MacMillan Cancer Charity. If you have a spare quid, please sponsor us for our climb up Beinn Luibhean: but remember I’ll be asking again for support for my Kili trip :)
http://www.justgiving.com/conqueracorbett

9 comments:

Rosanna =) said...

Hi Matt,

Congrats to you and Karen on the baby!! Super exciting news for a sometimes not so exciting time. I hope your upcoming results will get better OR that they will allow you to go on the new drug. Is it Nilotinib (AMN107) that you are talking about? My husband Matt just started this drug on Monday. Gleevec was working but causing some crazy side effects that could lead to muscle damage (ie. heart failure) so he had to stop.
Wishing you and Kas all the best from Canada!!

Anonymous said...

Well palyed Matt - good to hear the news. We had better come and visit you sooner rather than later. Chris and Emma.

Emily Lingard said...

Hi hon! WELL DONE...even though ive said it loads already down the phone at you!! Glad to know somethings still in working order!!

See you Wednesday...got a little something for you and Karen and never posted it so will give it to you then x

the smithys said...

Hi Matt

Huge congratulations to you both! As Rosanna said, super-exciting news!

Sounds like you are still playing a waiting game re your treatment which is a bit frustrating, but you have options, that's the main thing. But something amazing on the horizon to keep your spirits up!

Regards, Alison + Rachel

rob said...

Many congrats on the baby front, having just gone onto Imatinib my eife and I where advised NOT to try for a baby, so would be interested in reading the article you mentione on men on gleevec being able to concieve normally.

we had planned that either way I would look to come off the gleevec in 6-9 months to try for another baby....

best of luck

rob - http://cmlblog.spaces.live.com

Anonymous said...

Hi Matt,
First, congratulations on your big news! I imagine your baby will be an active one but hopefully will not give your wife too hard a time before he or she is born!

Sorry to hear about your PCR, but hopefully it will stay where it is and not increase. Why does the drug company determine whether or not you can try dasatanib? Isn't it out of trials now? I'm sure your fitness and good eating is helping, and it will certainly help if you have to undergo a BMT, so don't give that up! I'm still trying to get back into shape . . . being a bit lazy these days but with the nicer weather trying to get out more.

Sending good thoughts for your health and for the little one on the way!

All the best,

Shira

Shira Weisbach
Oakland, CA
United States

Wootto said...

Hey Matty,

Congratulations. That is fantastic news. You guys must be so excited.

Sorry to hear about the PCR results. That is a tough call. I hope you get better news soon.

Good luck on the climb.

Cheers
Wootto

Anonymous said...

Easter Prayer

God, give us eyes to see
the beauty of the spring,
And to behold Your majesty
in every living thing.
And may we see in lacy leaves
And every budding flower..
The Hand that rules the universe
with gentleness and power.
And may this Easter grandeur
that spring lavishly imparts
Awaken faded flowers of faith
lying dormant in our heart.
Give us ears to hear, dear God,
the springtime song of birds
with messages more meaningful
than man’s often empty words.
Telling harried human beings
who are lost in dark despair
‘Be like us and do not worry
for God has you in His care.’
(Author Unknown)

Thinking of you this Easter…
PRAYERS LOVE TRUST FAITH
-JESUS -

God Bless,
Stacy
www.caringbridge.org/visit/stacydvorak

Stacy Dvorak
Shakopee, MN
United States

Anonymous said...

Hello Matty & Karen,

Fantastic news about the baby. Matty, make sure he learns all the fundamentals - A nice Aussie drawl in his voice, A good passing and kicking game and most importantly hope he is endowed with the "Gift" that the good Lord bestowed upon his Father.
Dont know about K 2 mate. You do know it is a touch higher than Billy Goat Hill, dont you?
Kaz, make sure you look after the next Wally Lewis in your tummy. The Kangaroos are relying on you!
Take care Matt,

Simon.