www.tcpclan.net

I tried to ask him 2 times.

You know its the typical doctor to patient ratio.
He is well known renowed oncologist, and i am a nowbody.

So how can i tell him or ask him that?

Any suggestions?


Do you know the "braess`s paradox"?

In simple words: It means, if u want to reach with a action a bettering and if u do this action is all what u get a worseing.

He is absolutly sure he is right, but what when my thoughts are right, is then the transplant rly the right way?

He said the chance to survive over 4 years if i go transplant is 9:1.
That say the statistic.

But, which statistic is avaiable for constitutional mosaic trisomy 8 cases with CML???
Answer: There isnt none! I am the first PROBAND in my own study!
conclusio: I put me aware to an uncertain risk.

And where he will be if its will went worse?


...

Coco i do not beleave that he is lying, but maybe he overlook something?
In one doctor`s letter he wrote:
If the T8 will rising again then we should think about further therapeutic measures........and it raised.......and later it falled again. For me it shows that he have himself no idea, and thats maybe the reason why he dont want to speak with me about that............

For me its pitty that he do not even take the time to try a conversation.

Not even one try......




Marwin

Hmm, that's really sad. Maybe you're right and he can't give a reliable prognosis and therefore doesn't say anything. However, if you think your own considerations could be of importance, you probably should try writing it down clearly in a letter and give it to him. I wouldn't know what else to do to be honest.

}TCP{Coco wrote:Hmm, that's really sad. Maybe you're right and he can't give a reliable prognosis and therefore doesn't say anything. However, if you think your own considerations could be of importance, you probably should try writing it down clearly in a letter and give it to him. I wouldn't know what else to do to be honest.

Exactly my thoughts!




I deleted the other long thread, its to specific, sorry..........

Ok, so you're gonna write that letter?

Yes, but i dunno with which words atm.

Hey peeps!

I collected some Infos about my situation and will ask my doc on 28th this month about the T8. I dont wrote the letter Coco, i ask him directly. Its harder and costs more power, but i HAVE to do this. I want only reach certainty/certitude!

Look i found a other folder this time for adults!

Read on page 11 the association with T8 and leukemia. On page 14 you can see the non-disjunction error and how it developed.

http://www.rarechromo.org/information/C ... 20FTNW.pdf


There are some good internet hompages out there in the world, and one of it is for me really really a very important one.
Its the homepage of the National Center for Biotechnology Information U.S.
http://www.ncbi.nlm.nih.gov/guide/

It includes the pubMed.gov site http://www.ncbi.nlm.nih.gov/pubmed/. Its the U.S. National Library of Medicine National Institutes of Health.

There are listed cytogenetical individual cases like this child.
Its a case from Kennedy-Galton Centre, North West London Hospitals NHS Trust, Harrow, Middlesex, UK
http://www.ncbi.nlm.nih.gov/pubmed/11005148

If its true that CT8M is a multistep carcinogenesis process, then ll show this case how important it is to analysis first also the donor.
Its from Division of Hematology-Oncology and Abramson Cancer Center, Hospital of University of Pennsylvania, Philadelphia, Pennsylvania, USA
http://www.ncbi.nlm.nih.gov/pubmed/18819096


......and maybe one day i be listed in this page 2.


If i want to be 100% sure that i have this or not then i have to made a analysis of fibroblasts from my skin.

Thats definitely the hardest time in my life......


This time with unlucky regards


Marwin

That's some really complex stuff, Marwin. I hope the doctors can clear it up and you'll get the information you're looking for. At least, it's not that long to wait anymore till April 28th. To me it seems that you're pretty well prepared for the talk.

The story get unbelieveable dimensions.

The docs ignore the tiny probability that i could have constitutional trisomy 8.
If it is constitutional then i have a real chance to survive longer time only with medics, and if its accelerated then i get only till December.
That is nearly no different - HUH!!! (cynical).

The damn docs can only make pressure that i should make this damn transplant and dont hear my voice. I tried 5 times to 3 different docs to ask if its possible that i have the T8 constitutional.

The heartache araise to ......
....... i cant find words.


I stoped to take my life prolonging medic called "Sprycel (R)" with the active ingredient "dasatinib".

I give up to clear that shit up in Austria. I ll go to Germany to university hospital Düsseldorf so fast as i can. From there i had the first information that this tiny probability could also happen to me.

If u look to the folder and switch to page 3 then u can see on the left side the accelerated (bad and often) combination, and right the constitutional combination (not so bad and really not often).

http://www.uniklinik-duesseldorf.de/img ... df?id=6610

To get assurance they need only some substance from my skin and make then a fibroblasts analysis - nothing special.

Maybe i ll go to Germany - Düsseldorf over a weekend and can meet some members to enjoy some time together. What do you think?


I ll keep you up inform........


<3


Marwin

Oh boy, I missed out on a lot it seems.

I admire you tho marwin for sticking up for yourself like you do. People, Doctors etc can talk and try to take controll of other ppl`s life in many ways. People know best themselfs deep down, even tho it might not seem like it. But regardless how life is, Our choices should always be our own. Keep at it marwin , Trust yourself and your instincts . Do what you think is best, which it already seems like you do .

Best of luck and wishes :thumb:

*cheer from me & norway*

Just a short now as I'm very busy at the moment: To me it sounds like you're making the right decision. If the doctors in Düsseldorf can make that test, I'd also go for it rather than waiting till December and see what happens. Especially in respect to the decision about having the transplantation or not, it will be essential to know the facts.

When you come to Düsseldorf and I can make it somehow, I'll be there to visit you for sure. I just hope it's not before 1st of June, because I got no time till then.

See you soon, mate...

The story goes on peeps but i dont know in which direction.


I hope the story went in such direction like this song (heart and life goes on).

<3



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

Well, I hope it'll be the right one! Good luck, mate, and keep us updated!

1 update:

The research of the trisomy question will be cleared in Graz (Austria), so i dont have to go to germany.


Marwin

This story will end happy, but only if you believe!

You will see!!!


Marwin

Ok, that's good news I guess. Do you know the date when you'll have the results? I'll keep my fingers crossed!