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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Marwin
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Post by Marwin »

3rd time i try answering here! Yesterday and one day before i allways fallen asleep. Still fighting against tiredness :-(

Ty Wolf, thats interessting stuff!

This virus stuff is evolutionarly in child´s shoes same as transplantation of cord blood. But such stuff is definite the future.
How dangerous this new things can also be showed the antibody
TGN1412 .


There are 5 steps/phases to get a medic market ready (phase 0 to 4), and are allways made by clinical studies/trials. B4 to reach the first phase all the medics was testet about 10 years on animals or in vitro/in vivo (prehospital study).
Phase 0: 0 to 10 peeps (microdosing)
Phase 1: 10 to 20 peeps (tolerance and safeness of the medic - FIM "First in Man")
Phase 2: 20 to 200 peeps (validation/verification/checkup of results/effect). Divided into 2a (Proof of Concept), and 2b (Dose Finding)
Phase 3: 200 to 1000 - 10,000 peeps (3a pivotal study, after market authorization go into 3b studies)
Phase 4: above 1000 to 10,000 peeps (some admission boards command/demand such studies for verification of extremly rarely side effects, or to marketing purposes)


Ok, enough babbeld :-P

Fact is that i have to make the bone marrow transplatation in fall (or earlier), and its my only chance to get healed. Whatever the docs mean with it (cause my definiton of the word "to be healed" can be different to the docs definition - state till now - have to make some important questions next visit).

This month is my last one of working. After the transplantation i can not resume this cause its too "dirty". I ll get a retraining to something/anything, but thats a other story.

A other fact is that after transplantation there is a timeframe, where a risk of relapse is existing. If i have a relapse then the story come to a fast end, cause a second transplantation is impossible. If that happens they can only the life extend for unknown time.
This timeframe is about 2 years. After 2 years the relapse danger should be banned.

Here is a stream that is very important 4 me! She got the bone marrow like me from the brother, and after 1 and a half year diagnosis: relapse.

They wanted to made a vid about her recovery, but it came the other way - the movie changed to attendance? till to the end.

I am sorry, its non english and i found not a subtitle version, and it take one hour to watch it.

Best i like is part 6/6, where the friends of Suasanne telling what life is (loosing in daily rutine things 1:10 , or what is rly important in life 2:10), and that last part shows also at the end that life goes on.


Marwin


Edith: Forgot the link:

Here the first one of 6.

[youtube]http://www.youtube.com/watch?v=wwnpJVzIyF0[/youtube]
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}TCP{Coco
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Post by }TCP{Coco »

Oh well. I can only say I wish you the very best success with the transplantation then. 2 years is a long time when you don't know exactly what the result is. I hope you'll have the power to live a life as normal as possible. My best wishes are with you mate!
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Marwin
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Post by Marwin »

}TCP{Coco wrote:Oh well. I can only say I wish you the very best success with the transplantation then. I hope you'll have the power to live a life as normal as possible. My best wishes are with you mate!
Thank you Coco!

Marwin
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Apollo
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Post by Apollo »

Chin up m8.
Get some nice rest and I hope to see yah online sometime.
All the best from me m8.
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Marwin
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Post by Marwin »

One year passed, on 06.03
}TCP{Ramses
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Post by }TCP{Ramses »

Wow that was quick, seems like yesterday when you started this topic :shock:
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Marwin
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Post by Marwin »

Last blood analysis was the result that the cells with the mutation are again raising. :-C

It was only a blood check not a bone marrow check, but the chance that the result in the bone marrow would be otherwise is rly small.

....

Would be a great christmas present if i could see this movie on IMAX or 3D cinema, if i have the power to do this...

[youtube]http://www.youtube.com/watch?v=6_I70KACh4o&NR=1[/youtube]
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menace
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Post by menace »

....
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}TCP{Coco
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Post by }TCP{Coco »

I'm really sorry to hear that, Marwin. :-( I hope you can make it and watch Tron in the cinema. I'm looking forward to this as well...
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}TCP{Trønec.
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Post by }TCP{Trønec. »

Sorry to hear Marwin... I also hope you'll be able to see that movie, and I also hope that won't be the only movie you'll be able to see afterwards.

<3 Tronec
Resistance is futile.


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}TCP{Ramses
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Post by }TCP{Ramses »

Ow frustrating set back Marwin, sorry to hear that m8 :?
Van
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Post by Van »

I am sorry to hear this Marwin. How are you feeling now? Are you tired most of the time? What are the doctor(s) planning now? Hope you feel like seeing Tron.....I saw the previews Friday and if you liked the first one I am sure you will enjoy this one.

Thinking of you,

Van
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Marwin
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Post by Marwin »

At first, thanks for the replies!

The damn thing is i feel me good now (if i compare to other with leukemia) and look good (not so white in the face as in the past), but there allways good days and bad ones. But if the bad cells are rly again raising .... :?

I cant rly handle the doziness (the point where i have to go sleep), but i dont need so much sleep as last year or in the past.



What will the docs do?, ..........thats a good question.
Its a bit more complex with the mutation as "normal cml". Its so specific that my Doc will present my situation in November at the big CML meeting with other CML experts, and talk with em what they would do.


....

Marwin
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Apollo
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Post by Apollo »

Wow new Tron movie. Didnt even know about that.
Hope the doctors can help you out m8.
Keep us posted in the up coming weeks, its good to hear from you.
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Marwin
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Post by Marwin »

Hey peeps,
sorry to annoy u all again. I just read on leukemie-online.de that 2 peeps with cml have to make a stem cell transplantation, one is in progress, and one raised up the values that he try the third line therapy or make the sct in few weeks.

And moreover i got a letter from the tax office, that i have to explain why i was 2009 so long ill ........... LOL

WTF!!!

Waht a bad dark week..........
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