KML Turkiye Mainpage | Links | Site Map | Contact Us
| Usage Terms
Facebook || TR | EN
Uye Olun
Giris Yapin
 About Me
 About 22 9
 About CML
 Symptoms and Diagnosis
 Treatment Options
 CML Complications
 Follow Up On The Results
 Neutropenia and
 Thrombocythemia
 Preparing for the
 Appointment
 Patient Stories
 Events
 Frequently Asked Questions
 Patient Registration System
 Survey
 CML Recent
 ELN Recommendations
 CML Horizon '14

Last Blogs (Members Only) Sorry, not found.

Last Blogs (Public)
 Ercan006 - 2018-06-14
 ozguntansoker - 2016-04-15
 ozguntansoker - 2016-03-18
 Prensi - 2016-03-16
 ozguntansoker - 2015-12-29

Survey Poll
Are you a CML patient?
Yes
No


Would you say kmlturkiye.com is illuminating and useful?
Yes
No


You've heard about kmlturkiye.com from...
Google
Facebook
A Friend
Other


Poll Results

Visitor count
285.367

(since 07.Dec.2011)

It is only fair for the question “What is 229?” to pop in one's mind after noticing on the site. But these are the numbers you will see on my site as you surf through the other pages.

CML, basically the forming of pH(+), develops from the collision of the 22nd and 9th chromosomes of the 23 chromosomes found in our body.

You will find scientific explanations about CML throughout the site but you should definitely hear if from me as well.

Humans beings have 46 chromosomes of which 22 are the autosome chromosomes. Inside a human cell there is also one pair of sexual chromosomes and that makes a total of 46. Females have two of the same kind of sex chromosome (XX), while males have two distinct sex chromosomes (XY). During fertilization, 23 chromosomes in the mother's egg combine with the 23 chromosomes from the father's sperm. And these 46 chromosomes play a determining role in human life.
(http://en.wikipedia.org/wiki/Chromosome)

These chromosomes are on the move inside our body and they can either collide with or break away from each other. In CML patients, the chromosomes numbered 22 and 9 translocate, similar to a person without CML, however in this translocation, parts of two chromosomes (the 9th and 22nd by conventional karyotypic numbering) switch places. As a result, part of the BCR ("breakpoint cluster region") gene from chromosome 22 is fused with the ABL gene on chromosome 9. After this abnormal "fusion" a gene called BCR-ABL is formed. This BCR-ABL gene is also the name of the blood test which is mandatory for CML patients. Blood is tested for traces of this gene.

This chromosomal abnormality is named the Philadelphia chromosome, because it was first discovered and described by scientists from Philadelphia, Pennsylvania, which is the largest city of the easternmost state of the mainland and the 6th in all USA. Thus it was named The Philadelphia chromosome, which is detected in 95% of all CML patients.

Janet D. Rowley was a leading member of the scientist team. I'd like to present you a little documentary about her and her crew.
(www.youtube.com/watch?v=gIANU4-fb-w)

The gene developed in CML is a faulty one, meaning it's not normally found in our bodies but develops subsequently. And once its developed it's not known to behave. It starts to send signals from where it dwells. Of course, it's now a chromosome which should work. And these signals are interpreted as a “Reproduce!” command by our white blood cells. Therefore the white blood cells start reproducing, in other words multiplying.

However, these blood cells normally step forward and increase in numbers only when there's a threat to the immune system of the body and they take their orders from the bone marrow. The bone marrow is in charge of the blood therefore bone marrow tests are done on CML patients for answering the following questions. Is the bone marrow working properly? Are the Hemoglobin (red blood cells), leukocytes (white blood cells) and thrombocytes (makes the blood clot) working properly? Is there any other diseases or abnormalities?

And since these "reproduce" orders come from the subsequently developed gene instead of the bone marrow itself, they are erronous. Therefore these faulty signals cause the white blood cells to unnecessarily develop. And in the end emerges the ever-multiplying, unnecessary, no-use-to-the-body and non-defending white blood cells.

Therefore during the diagnosis phase of CML, although the leukocytes are pretty high, the blood test results come out normal because there is nothing wrong with the bone marrow.

Should the signals sent out by this gene are somehow not interrupted then depending on factors like age and build, in 5-6 years time these leukocytes invade the body and leave no room for the normal leukocytes, hemoglobines and thrombocytes, leaving them unable to increase in numbers thus ruining the resistance and immune system of the body.

There is an important and also a funny, so to speak, situation here. And that is the normal white blood cells in the body CANNOT launch an attack on the faulty gene and the faulty white blood cells caused by it.

Since this gene is formed by the chromosomes in the body, the normal white blood cells consider them as their own instead of total strangers and unfortunately cannot attack them. And the only way to get rid of that gene is bone marrow transfusion. The fresh blood pumped into the body by the new marrow launches a full scale attack on the old blood cells including the abnormal gene and replaces all the cells inside the body.

The outcome; regardless of the type, all blood cells good or evil are replaced by new ones.

But bone marrow transfusion isn't an option for CML patients anymore unless there's a dire need. Because without the need for a bone marrow some prescription drugs (such as Cleevec which I'm taking) merely target the faulty gene, bcr-alb aka The Philadelphia Chromosome, and shut it close like a manhole cover, intercepting the wrong signal and of course stopping the unnecessary development. My drug is considered to be a "Hit-the-Target" one. "Do not touch any other cells, organs or any other stuff."

One pill a day and puff the signal goes. Simple as this. Diabetes and hypertension are types of diseases which can be survived with drugs. None of these require a bone marrow transfusion. CML drugs are raising the odds for survival up to 95%. It's a miracle! Well, of course these drugs have some side effects and that is the main reason for me to set up this site. Being able to share those side effects. For the diagnosis phase or the emotional whiplash of the diagnosis phase or the phases after those.

I think after all the pages I've written I can honestly say that, as a CML patient I do not regard CML as some for of leukemia but a gene disorder. Leukemia is defined as blood cancer in every single resource out there. So CML is something chronical, meaning it will always be there, in which there is an absolute chromosome anomaly in the Myeloid series, yup. And that is how it is a blood cancer thingy. Basically it's a blood cancer caused by a chromosome anomaly. Giving you the details about this disease is nothing but a downer indeed. For everyone about to take an interest in this site, I have a gene disorder and that causes hyper development of my leukocytes and the cure is a pill which I'm taking on a daily basis.

Yup, that is my disease.

I believe everyone now has a rather clear idea of what 22.9 is after reading this much.

And the reason those numbers were picked to be the logo of my site was www.nationalcmlsociety.org which I'm constantly in contact. Sites like that can be found in almost any country. Well, Turkey lacked one but now they have it. They have contacted me after an e-mail I sent to them.

Is it okay to declare 22.9 as World CML day? That's what I asked.

Turns out in some countries that was already the case but there were some other countries which they have failed to reach out. And one of them was Turkey.

“What should we do?” I asked. Let's have an observance here as well.

Apparently first thing we need was a web site.

Some people will have a day for my illness and I'm not gonna be one of them? That is impossible!

So I called on the cavalry that is Evren.
Of course she rose up to the occasion.
And voila! In only 10 days we had a site up and running.
Thanks a lot Evren M. Abalı.

And there was the 229 situation.
Mertkan, to the rescue!
Of course he would.
Thanks to Mertkan D. Yılmazer

Then, we had to have the english version of our site to make it international!
I asked Mr. Sinop. Thanks to him, he didn't refuse, despite his fully occupied time...
So we've succeded, on 22.09.2012, International CML Awareness Day.
Thanks to Sinto Sinop.

Worked their charm and it's a done deal.

Yes, 22.9 is CML Day in some countries. Sharing stuff and symposiums. And I hope I could be of any help with www.kmlturkiye.com / www.cmlturkey.com. I will do my best to keep you all updated on the progress at those via my webbie. This is not an official site but by no means a obstacle on your path to obtaining information on new developments either. And I want it so bad to have it recognized as a special day in Turkey. That will mean a stronger flow of information.Translating it into English will take a little while but you will be able to receive news and updates in the meantime.

By the way, I'm the only one working on the site so in case there are some glitches please bear in mind that I'm the only one working on the site.

The Organisations We're Member of:
Dance with Cancer Society:
Kanserle Dans Derneği
CML Advocates Network:
CML Advocates Network
 
This site is being served by a diagnosed CML patient. KMLTurkiye.com is serving the purpose to share the processes, treatment and side effects between diagnosed CML patients and their relatives. KMLTurkiye.com is not intended for medical advice in any way. Each treatment applied to CML patients are strictly personal and always should be advised to their own doctors by themselves.
All rights reserved to Özgün Tansöker Danacı.
  designed by Özgün and developed by RejaVu Rejavu
KMLTurkiye Logo KMLTurkiye Logo