 Hello 
How are you doing?
I wanted to dedicate this section to myself and my CML diagnostics process. On the sites I’ve dug through before, according to the info I’ve gathered from various doctors and CML symposiums I’ve attended abroad I just found myself to be a little more investigative than others. So instead of keeping all this to myself I’ve decided to share with CML patients and their loved ones.
First I’d like to start with my diagnostics process during May 2008.
I went to the hospital for my annual and routine blood tests with no complaints at all. No fatigue or bruises on my legs or swelled spleen or anything else or bleedings at all. The test results showed a leukocyte count (White Blood Cells) of 24,000. All the other blood tests came out normal. My physician back then who is also my current doctor as well told me what the possible outcome after these result could be. And with his pinky he added CML, Chronic myelogenous leukemia, which was nothing to be scared of cause I’d take a pill on a daily basis and forget about the illness.
Well, I went with my sister and she burst into tears. And I told her “What the heck sis, you’ve killed me already? Just pray it's CML.”
We immediately started the advanced tests like peripheral smear with some other stuff along with a bone marrow sample. On my first test I was pretty convinced that they took out my butt as a whole, but turned out it was just a huge needle which went deep until the bone to get the cleanest sample.
Yes, I admit the first one was hard.
The outcome; CML.
Yay! I was just happy all the other possibilities were eliminated.
As a result, I’d just take a pill and live on. Otherwise I had just 5 or 6 years left to live.
Ok, let’s go get the pill and life goes on.
Of course that’s now how it happened.
I ignored the recommendations of my doctor and found myself tangled with the prospectus and the internet.
The outcome, I’ll pass the pill and live my remaining 5 or 6 years.
For 48 hours the Gleevec and I stared at each other. I’ll wash it down with a big glass of water in between meals. Yep, it’s easy to take it but how will my humble body react to this? Cause you know, there are a lot of side effects listed.
Think dammit think!
I couldn’t decide so I’ve booked myself with every hematologist I could reach in Istanbul. Visited 5 more physicians beside mine. Sent my results to a few relatives living out of town. Result, all responses are the same except one. Then I should be on the right track. I’ll take that pill.
*(The “except one” response was a bone marrow transfusion advice for fully healing. They said a donor should be found but later on I learned that "after bone marrow transfusion the chances of survival was 75% whereas the odds are up to %95 with Gleevec. A bone marrow transfusion on a patient doing just fine with medication is also considered a crime because you just risk the life of the patient unnecessarily".)
Back to the doctor who diagnosed my CML. Without hesitation or shame I told him about all the doctors and responses. He asked with whom I was to go on and I told him it would be him. He didn’t ask me but I said it anyway. “Because I trust you.”
*(The answer I got from my doctor about the donor thing was really interesting. “CML is not a disease with surprises. If such need arises, which I highly suspect, your test results will be sent to the bone marrow bank.”)
In the first phase the coherence between me and my sister was checked. Just because she’s my sister. And the outcome was zero coherence. The highest rate in siblings is 25%. If my sister was not a match then another relative was highly unlikely. Parents are 50% match (naturally but they are not used. So it had to be the marrow bank.) Anyway, naturally I dismissed that conversation immediately. Along with that physician. I had my medicine, how lucky is that?
June 19, 2008, 16:40, after a late lunch I took my pill. Drank the water and started waiting.
Well, nothing happened? That’s amazing, my “life” will go on exactly as it was. And the day after that, and the day after that, and the day after that.
After one week, I had swelling around my eyes. Called my doctor and he said that "ok, they are side effects". Well, ok, I can live with that.
Show me what else you got up your sleeve Gleevec! Hah!
After a week and a half a little fatigue and small red spots under my knees occurred. Oooh, there are allergies. Called my doctor and he recommended me another medicine for 2 weeks for medicine along with fresh air and exercise for the fatigue. Another check!
Three weeks later while I was stretching in bed something happened. And that’s how I painfully learned what a cramp was. During the morning stiffness I had cramps in my legs and my neck (most hurtful one). Is it even possible to have a spasm like that? Like someone was squeezing my muscles from the inside without tightening the grip even just for a while. Somehow I muddled through that and got up and while I was changing yet another cramp in my shoulder. “Oh God” I yelled, “My lifespan was only 3 weeks but this is real short!”
Called my doctor and he told me there was nothing to be scared of because it was affecting my muscles. But I had this thing while I was putting on my stretch shirt! “Well then don’t wear stretch shirts” he said. Ok, I can take it out of my life too.
The most crucial of the spasms was in my heart. I thought I was having a heart attack but turns out it was the normal convulsion of the heart muscles.
Yup, struggled through my first 3 months just like this and it was test time again. Results look promising. Leukocytes were down to 9500. My doctor categorized this as a miracle though that was not the important one. So there are more important things than leukocyte count. I had to work on that Ph(-) thingie.
So how were the genetic results? NO Ph (+) chromosome found. NO this and NO that, I want to see all NO's on my results chart!
Took a nice deep breath, super. That’s good. But still having some side effects. I need to get over these somehow. Read Özgün, my girl!
First of all those cramps are important. How to get rid of those? Me doctor told me to take magnesium and calcium so I’ve started on a routine dairy intake. Then a little exercise and I added those to the mixture. I had to drink 3 liters of water a day so that was already done. Hey, they’re fading away. Yeah, I get them every once in a while but it’s not like the end of the world anymore.
My eyes are still swollen and there’s nothing I can do about that right now. This is Ok too.
Into the fourth month I started to feel terrible heartburns. Ok, now I’m done for. I’m gonna lose my stomach. My doctor gave me the stomach medicine I could use and I used it for 2 weeks. My stomach became right as rain. My dear old stomach was saved!
Alright Gleevec mate, is that all? These are your side effects?
As a sleep loving person I feel the need for an 8-hour-sleep but as long as I didn’t disrupt my routines I could live real comfy. That was nice too. CML? What the hell is it? I’m just popping a pill that’s all. Convulsions? Yeah of course I get those and during winter there’s an ongoing rush of colds but none of them is a life stopping event. Eyes? Yup, still swollen. (I wish it was the lips instead of the eyes but I guess it wasn’t meant to be )
The fifth month was the pinnacle of my researches and the information I had about CML. I wanted to meet a few CML patients and I did find them. I had a friend whose dad had the disease, in fact because his dad switched medication she gave me the remaining Gleevecs. “Oh God, I’m not alone” I said.
But questions never ceased to zerg. Her dad’s not using Gleevec anymore. Why? Why, oh why? I thought Gleevec was the best medicine around, the pill of the century, and “hit the target” as they call it. So maybe I could have too have a change of medication. But I didn’t’t want that because Gleevec had become almost like a part of me. It was like “We’re goin’ on a vacation? Got my pill and I’m locked and loaded, let’s go.”
This situation arose the curious in me and started asking “My dear CML, what or who the hell are you really?”
Between that came my sixth month and it was test time again. Oke doke, bone marrow sample again.
The first time I saw the results I felt like it was some kind of stock market index. Red signs everywhere and yet another disappointment. Well, actually they said this was normal too. Leukocytes down to 5.9 and hemoglobin down to 11.5 which is considered a threshold. Others were only different buy a few points more or less. Thrombocytes were in normal range. That’s what Gleevec does. Until it gets you acquainted (or it settles down to be nice and comfy ) it plays with those values. Other genetic results were all NO this and NO that. This is it then! No need to read anything else, just NO this and NO that.
In my seventh month I had made five friends with CML, all in similar ages, situations and results. That was comforting because that’s when I realized “You won’t freak out if you’re not alone.”
So let’s get together and help the other CML patients.
Actually they were pretty prepared and with the addition of “moi” last few missing things were covered and we started our very own organization. But when all the workload started to weigh heavily on me and my other two friends I just shut it down. The founders were all CML patients so all their energies were channeled to their daily business. This organization stuff required special time and effort. We shut down the operation without doing anything. But I’ve altered the idea in my mind. Maybe if I just act on my own, I mean without any commitments to or bonds with anybody I could do some stuff on my own time. If I just reach more CML patients, patients like me who were freaking out in the first phase, and maybe release them of the “fear of dying.” I said and I said and I said.
In the meantime that organization thing made me experience some other cool stuff along with that thought. On June 28, 2009 I and a few more members went to Lisboa, Portugal to attend the CML conference. We attended conferences for three days. Countless CML patients I had met. Males and females that are older, younger, taller, shorter than me.
I had the disease only for a year and been using Gleevec for just a year but they were ten years ahead of me both age and experience wise. And I said, “Ok, they are my reference points. I’ll follow their footsteps. If they are well, that means I’ll be well too and I have to be a reference point for others so that people coming after me will know they’ll be OK too.”
After I got back, I became that CML patient who only visits her doctor once in every 3 months and not disrupting any routine in her life without doing nothing the doctor told her not to. O accepted this and even began to like my disease. Why? Well, you get the flu and become the hostage of the bed for seven days or you hernia and become unable to move but I have CML and take merely one pill a day.
After the first year my tests became pretty much routine along with a bone marrow sample in every 6 months. My family was more sad that I was but I’m giving them the greatest gift of all by merely taking good care of myself. CML debates are the centerpiece of our family dinners and we’re never holding ourselves back for talking about it. I had established a sterile life for myself but slowly but surely I’m breaking the shell and I stopped worrying.
Always been a positive thinker but now I’m also trying to be a positive doer
Around this time it’s gonna be three years since my CML was diagnosed and I started using Gleevec. Only side effects left are a little fatigue every once in a while and rare cramps. For me the main reason for this are being positive, my family and my friends who love me more that anything. Not to mention the 3 liters of waters, 8 hours of sleep and eating healthy. This fight is not only mine, it’s also my friends’ and my family’s. I support them as much as they support me.
I’ve prepared this site with their encouragement. My goal is merely to say “Don’t be scared of the CML diagnosis, just get some info.”
And to the folks close to the patients; yes, we need you. We are OK as long as you are OK.
Sevgiler,
Ozgun Tansoker
www.kmlturkiye.com/ozguntansoker
www.cmlturkey.com/ozguntansoker
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