CML

[vare]

Dear Martin,

You really are brave.
My best thoughts are with you now. I cross fingers for a steady progress in your condition.

Your friend,


Manuel AKA Vare

[}TCP{Carnage]

Caramba m8 that is some massive organs u have there :0

I am glad to hear things are going better now and from the sound of it u are definatly going in the right direction
Keep it up m8 .. i shall have some on your good health so to speak

[Marwin]

THANK YOU ALL to be here!

Marwin

[Ronny.]

holy shit, some huge organs. Thankfully it sounds they been able to shrink them. I hope things will be a little easier for you in the future and that evrything works out .

If u get any trouble with the doctors you can always call for the viking army up north (me and taz)
Then we will come down and knock some sence into them .

Wish you the best m8 .

[Marwin]

If u get any trouble with the doctors you can always call for the viking army up north (me and taz)

Yay the vikings r with me, so whats the worst that could be happen now?

I like the vikings sience i was a teenie, i like the setmind.

[}TCP{Killer]

soz for not being around , but gl with that m8.

[Marwin]

Hey Killer!

I am also not being around, so no sorry needed. Enjoyed allways to play with u man .

Times r changing and interests 2



Soooooooo..... the story goes on

I ll again start with what was:

The caregiving starts with a lot of medics (7 or something), but after 6 weeks there was only one i had to take. The name of it was gleevec

The docs said to me, that i can live with this medic for about years. I can remember me good of that sentense. I beleaved the docs, hmmmm.... what ll you other do in this situation,.... and the docs r the bros!

Well, the live teached me again the other way.

After a while the (few months) the malignant cells were again raised.
Again i had to made a "boonpunch" (dunno if i am right with this word).
It is the procedure where they took out the boone marrow.



.......and ahhh! dont wanna know how it works


After a while ( the researches r very complex and took between 14 days and 3weeks) it was around christmas last year i got a phone call.

Well, and if a doc make a phone call to you, then for sure NOT cause he/she had good informations.

The marrow reseach results wasnt funny. They found out that i have a T277N mutation and a trisomy8.
That means i have the philadelphia chrmosome mutation and then a mutation of the mutation.......whatever.
I was rly shocked, at the deepest point i went again to the docs and asked for a psychotherapeutic care.

I got a new medic since this.
Name: Sprycel


....to be continued

[}TCP{Coco]

Oh well, Marwin, that's shocking news indeed!

So if I got that right, your 22nd chromosome (the Philadelphia chromosome) is shortened and goes along with a part of chromosome no. 17 existing three times (instead of two times) in some or all of your body cells?

That's really heavy stuff! Can you tell what that means for you? Can you just take that new medicine and live a more or less normal life? Or what are the expectations?

Anyway, my best wishes for a normal life are with you, mate!

[Marwin]

This is very specific now, i know its boring for others, thats the reason why i shortened last post.


Right Coco, the 22nd is shortened but the other breakpoint is on chromosome 9.
On the pic u can see the changed parts.




I have: Ph1(9;22)(q34;q11) not as on the pic above the 11.2

Ph1 = philadelphia positive
9;22 = the chromosome number
34;11 = the sequence where they r broken.




Trisomy 8 is:

On the 8 chromosome is one DNA-strand too much.

Ignore the last 2 chromosome on the pic:



I hope everybody know that we have 23 chromosome pairs that means 46 chromosome, and the last pair build the gender. If u double the 3 strands on the pic u get 3 X on 8 (tripled).

Where i have it?

I have it in the bone marrow for sure!

I dunno if i have this in everyone cell in my body, it can be or even not, nobody knows, even the docs!

If I ll know it, then they have to research other cells as the marrow cells in a labor.
Its not necessary to research this, nothing would be changed, they couldn`t remove it if i would have it in the other cells 2.


About the T277N mutation i found nothing in the i-net, but it is a mutation from the marrow.
And its the reason why the first medic did the job only few months. The new one can handle this mutation and do the job really great from christmas till now.
But this medic have the problem that it ll work between one and 2 years, then the malignant cells ll go resistant.


I told this also the peeps at my work, and the elctrician of the company say to me "Magneto" since this

[youtube]http://www.youtube.com/watch?v=7hJ1scpqBG0[/youtube]


But real life it is a bit other, all these mutations r known and all these mutations r NOT good.


Marrow transplantation is near.



Ok ...... enough again ...... newest update from last Tuesday i ll write later.

[}TCP{Wolf]

ugh

[}TCP{Ramses]

Best wishes with the transplant Marwin

[Marwin]

woo! not so fast Rams!

I got 3 months more grace period.


Since last Tuesday I know that I am allways close to panzytopenia.

The 3 big groups in the blood are:

-The white blood count: leukozytes
-The red blood count: erythrozytes
-The blood platelets: thrombozytes

There r way more stuff in every group, its only a big overview

If u have too few leuko`s, then u have leukozytopenia
If u have too few red cells, then u have anemia
If u have too few thrombocytes, then u have thrombozytopenia,
and if u have all 3 then u have this above called panzytopenia.

And this pancytopenia ll be the reason why i have to make the transplantation in...... dunno when, but i think its not far away.

Sprycel is the medic i get now, its 2 or 3 years on the market, that means it is a very young medic.
The doc said to me on last Tuesday there is a newer one out now. We ll discuss it in the next days, if its something for me or not. He ll wait of the results from the last bone marrow researches from the bone punch.

Hmm found nothing about a new medic for CML out there or in the i-net, what i know is Sprycel the lastest and the newest one.


For myself i ask only one blood value, its the haemoglobin and counts to the red`s.

Normal it should be between 12.5 and 14
I was at 7.6 at the first time and went up to normal, but now it is again dropped to 10.4 (last week 10.9).

Why I ask to it first?
For docs the value say how the general condition is.
For me it says how tired and energyless i am at once and how dumb i am to the other.
And hell yeah it was better last months.

Why is that so?
Haemoglobin binds the oxygen from the air to the blood, and if u have enough of hemoglobin then u have enough oxygen to burn energy.
25% of that what we eat burns the brain and what should the brain burn without oxygen? Thats the reason why i went dumb and forgetfull if the value is bad.
Can u imagine if u read a simple sentence and if u r on the end u dont know what only one thing of the begin?
F.ck! Its horrible!

If the haemoblobine ll go under 10 then i have to stop working, and the dumbness is back.......

[}TCP{Coco]

That sounds very severe, Marwin. I can just say that I wish you the best of luck about all of this. I hope the new medic probably helps you.

[Marwin]

Thank you Coco.

Thats it, thats the whole story till now.

[}TCP{Skarijscout]

Dear Marwin,

i've read every single notice under this topic and i'm shaken.
Wish ya all the best, stay strong & get well :thumb: soon!

Yours Skar