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Recently diagnosed


Hi all. I’m Vania from Indonesia.

My boyfriend was just diagnosed with Ph+ CML a month ago and we’re still trying to get Gleevec, the only TKI available here in the country.

He’s been coughing for like 4months now, and it wasn’t getting any better, high fever, fatigue (quite extreme), accelerated heart rate and so on.

He even got pericardial effusion (only within a month his heart got 1.5x normal size), and that was the beginning of the finding of CML.

He got anemic also, Hb was around 8, erythrocyte was around 3.14.

I was quite terrified at first, with this whole new stuff and us getting married next October. I just hope he will get so, so much better than now then. I was broken seeing him weak and all like this. Hopefully we will start the medication today.

In that darkness, thanks to this website and forum, I found hope to fight this. Although I’m not from UK, but here I found so many useful things to cope up with the disease.

Nice to know you all. Wishing us all the best to fight CML.


Hi Vania,  Welcome to CML Support!

Has he been able to start treatment with the imatinib?

Hopefully he will respond well and have minimal side effects.




Hi Kirk,

he’s been taking Gleevec 3 days now, and got a bit fullness in his upper stomach (perhaps it is the side effect ?)

And i saw some progression in his body, like face became a bit red (before was really pale). Its such a good news!

but I’m a bit concerned about the fatigue and coughing. he’s been coughing for like 4 months even before he was diagnosed with CML, and the cough didn’t get any better until now (the doctor tried antibiotics and so on but still couldn’t suppress the cough). And the fatigue, will it get better with medication? Or is there any supplement that can help? he will be going abroad for work soon, and i doubt he can pass the whole week with this fatigue.


Hi Vania,

My first thought when I read about his upper stomach fullness was that he may have an enlarged spleen due to the CML.  It should probably get better as his blood returns to a more normal state.  I'm not sure how long it takes though.  I was asymptomatic when diagnosed.

That's good that he's getting some color back.  Hopefully the fatigue will lessen as he responds to the Gleevec and the anemia gets better.

Is he taking allopurinol?  My doctor prescribed it for me for a couple of weeks when I began taking Gleevec.

If he's had symptoms for some time, it will probably take a while for his body to recover.


Hi Vania,

When he starts imatinib, his body will still be fighting the CML, but also getting used to the imatinib and side effects. Like Kirk I was diagnosed by chance before it had really progressed, and actually felt worse for the first few weeks after I started taking the pills. Side effects in the stomach are quite common, but most of us have dealt with them OK.If there are specific things which are bad ask on here and someone will have an idea what to do. The most important thing is to make sure he takes the pills every day. For most people the side effects die down to a manageable level in 4-6 weeks.

Hope that helps


Hi Alastair and Kirk,

big thanks to your explanation! It really helps a lot.

No, he didn’t get any allopurinol right now. He got it when taking hydroxyurea, and he really felt the gout in his toes.

But today we found out that his hemoglobin was really low (7.7). I was really confused because his face got redder than when his hemoglobin was 8.8. So now the doctor told him to stop medication for a week.

So here is the story. Before taking imatinib, he got hydroxyurea 4 times a day. After 5 days taking hydroxyurea, he was starting to get pale and we checked his hemoglobin dropped to 8.8 and leucocyte dropped to 9 (from 108), so the doctor told him to stop to increase the hemoglobin. And we tossed aside the hydroxyurea until now. He just took it while waiting to get imatinib.

1 week after, he started taking imatinib. 3 days drinking it (which is today), his hemoglobin dropped to 7.7, erythrocyte dropped to 2.7 (from 3.14), leucocyte dropped to 4.4. And he’s going to get blood transfusion tonight and tomorrow.

Hope he get it well and get starting to take the imatinib again.