CML

Marwin's personal blog forum where he can basicly post anything he likes and keep us up to date on the status of his illness
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Christic
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https://www.facebook.com/warszawa.kuchnie.na.wymiar/
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Post by Christic »

idd also agree with rams! man u a really nice m8 marw dont pull yourself down !!!! we are all only some UT freaksssssssss


A fine friend you are :!: my austrian brother :)

:beer:
Van
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Joined: Tue Apr 29, 2003 1:13 am

Post by Van »

Marwin,

You are very special and dear to my heart. Don't be concerned you are by no means a freak.

Love ya lots,

Van
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Marwin
Posts: 1252
Joined: Sat Dec 15, 2007 10:50 am
Location: Rottenmann, Styria, Austria

Post by Marwin »

Ty all very much peeps, to be continued.......

Marwin
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}TCP{Snowbird
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Joined: Tue Nov 22, 2005 5:09 pm
Location: Germany

Post by }TCP{Snowbird »

Marwin, good luck in the future. I hope that you will find the solution to this soon. Like the others said, you are one of the good guys, and it hurts that much more. Where in Germany are you going?
I'm the mapper, he's the DJ

Fresh Prince: Will Smith
[Aura]HazeofSpace
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Joined: Tue Oct 13, 2009 7:07 am

Post by [Aura]HazeofSpace »

oah :( ich wünsch dir alles gute Marwin! drück dir die daumen und hoffe auf eine baldige besserung und genesung!
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Marwin
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Joined: Sat Dec 15, 2007 10:50 am
Location: Rottenmann, Styria, Austria

Post by Marwin »

}TCP{Snowbird wrote: Where in Germany are you going?
Sorry Frank, i dont know in which connection / which associate do you mean that?


Marwin

Thanks Haze, do u still an admin ???
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}TCP{Snowbird
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Location: Germany

Post by }TCP{Snowbird »

[Aura]HazeofSpace wrote:oah :( ich wünsch dir alles gute Marwin! drück dir die daumen und hoffe auf eine baldige besserung und genesung!
Haze wrote;
:( I wish to you, that every thing will get better, Marwin. Cross your fingers, and hope that everything gets better, and that you get healthy soon.
I'm the mapper, he's the DJ

Fresh Prince: Will Smith
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Marwin
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Joined: Sat Dec 15, 2007 10:50 am
Location: Rottenmann, Styria, Austria

Post by Marwin »

Very shocking news :(

Measure points of the bone marrow are all half years far away (all 6 months). Next measure point ll be in June 2011, so after this the next would be near to the christmas time.
I said i want to reach the measure point in June.
And the Docs said then to me....


June will be ok, but in December it will be to late!!

I was rly shocked.....
I mean WTF!!!!


Now i want to ask for what its to late?
For going transplant?
For changing to a new medicament?
Or for life?

I was so shocked that i wasnt able to ask anything at this moment.

WTF!

So the only one way is to transplant?




And there are still allways this trisomy 8 questions open!!!!!

Found this page out in the www, i mean how high is the chance that me english nub find this page, but it says something for me.........

Read not the "Clinics" and "Pahtologie" (you can if u want).
Read the "Genetics" and "To be noted" (red!).


http://atlasgeneticsoncology.org/Anomal ... D1017.html


and another important text.........


http://www.ncbi.nlm.nih.gov/pubmed/8913 ... t=Citation



From now on is time hunting me. :cry:



:cry:


Marwin
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menace
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Joined: Sun Nov 22, 2009 11:22 pm

Post by menace »

pfff hard to read what u wrote i wish u all the best. :<
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}TCP{Coco
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Joined: Sun Dec 17, 2006 3:05 am
Location: Germany
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Post by }TCP{Coco »

Hmm, maybe they just meant "too late to evaluate the progress within a year"? Because if you want to know the changes within a year, you can't measure in December when it was meant to be in June.

I really hope this is true, Marwin!
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Marwin
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Joined: Sat Dec 15, 2007 10:50 am
Location: Rottenmann, Styria, Austria

Post by Marwin »

Here is a cut-out of my doctor´s letter (scan).
The letter is in german sorry, it should show that i am not joking...

Image

and the karyotype of the t8 (47,XY,+8) in 8 metaphases

Image


Marwin
Mupp3t
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Joined: Mon Jan 26, 2009 5:58 pm

Post by Mupp3t »

abra cadabra ?
[Aura]HazeofSpace
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Joined: Tue Oct 13, 2009 7:07 am

Post by [Aura]HazeofSpace »

hey marwin! well im still active, admin a lil the aura page and our trackmania servers - maybe a bit less during last weeks, but im still here/there :)
seems like that letter of ur doc. doesnt sound that bad?! not rly used to the medical language but it sounds good to me atm...im sure its hard to answer or ask on such comment u got told - but hey - dont worry to ask them! think positiv and smile - im always sure that can solve alot! still keep my fingers crossed and wish the best for you!
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Marwin
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Joined: Sat Dec 15, 2007 10:50 am
Location: Rottenmann, Styria, Austria

Post by Marwin »

Sorry muppet for that abra kadabra..........


Maybe you get now a bit a sight of the situation, and beleave me its horrible to know nothing.......slepless nights......lots of fear.......


Marwin



Edith: To specific so i deleted it .........
Last edited by Marwin on Fri Apr 08, 2011 7:59 am, edited 1 time in total.
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}TCP{Coco
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Post by }TCP{Coco »

I completely understand why you can't sleep because of all this. Is there no way you could ask a doctor about it and describe your conclusions? Do you really think he'd still not give you an answer then or even lie to you?

To me it seems that the topic is far too complex to draw the correct conclusions without being an expert. So in the end, I think, you'll have to stick with what the doctos say. If you think it's not the whole truth, maybe try to get the opinions of more than one of them and compare what they say. There's not much more you can do, it seems.
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