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Introduction

Was looking for a section in the forum or the profile to introduce myself, but didn't find any - as you can sense I'm new in here..my apologies if this isn't the right section, please move my post.

My introduction in short: I'm in UK, 46 years old, was diagnosed 6 weeks ago in the accelerated phase, all classic symptoms present before diagnosis, tests show Philadelphia Chromosome positive.

As my white blood cells were obviously way too high, I received Hydroxycarbamide from the day of the first appointment on for a week - that was before the 100% confirmed diagnose 10 days later, because all symptoms were as "in the book".

When all other test were confirmed  (usual bloods, bone marrow) ,10 days later, the Hydroxycarbamide had lowered the white blood cells already (nice for my spleen) but as all tests were confirming CML I stopped Hydroxycarbamide and got my first pack of Imatinib which I take since then.

The intermediate check after 10 days Imatinib showed a good response so there's a good chance / the hope that it works well - Fingers crossed.

So far I can't offer much help to others as I'm quite new to this; but if someone has questions regarding UK, NHS, but also boating & live aboard things I can try to help with my experience :)

Hi there, and welcome to our little club that we'd all prefer not to be members of! Thanks for introducing yourself.

It sounds like you're responding well to your treatment - which is great. I was on the border of accelerated phase (depending on how you define it) 5 years ago, and doing well now.

I do have one question about boating: what's the best way to prevent sea-sickness? I spent 3 hours on a boat on the weekend just gone and 2:55 of those 3:00 leaning over the side of the boat feeling unwell!

David.

Nice meeting you David; yes, I read in the other thread you were switched to dasatinib - I'll see how I respond/what happens reg.side effects ;)
Great to hear you respond well and feeling good!

Regarding sea sickness - well that happens to everyone at some point; some in heavier seas, others from only a little bit of rocking....in many cases, it simply disappears after a day or so, even old salts and experienced seafarers get it sometimes :) Depending what boat you were on, it's mostly worst on the bow as more weird movement for the Vestibular system; better is in the middle of a boat, looking towards the horizon, as it's stable for the eyes.. From a medical perspective, a lot of people use Scopaid, a prescription medicine that contains oral scopalomine - your doctor would give you something, then try if it works without making you drowsy, otherwise you miss all the fun ;)

Update: after around 6 months on Imatinibmy bloodcounts are basically back to normal, BUT the Philadelphia Chromosome / BCR-ABL is still too high in percentage, so the Doc (the "European LeukemiaNet" Recommendations/Guidlines) advise that on Monday I switch to Dasatinib.

Curious about the side effects - let's see :/

 

PS: that's the link to the pdf of the LeukemiaNet" Recommendations: www.leukemia-net.org/content/leukemias/cml/recommendations/e8078/infobox...