You are here

New to CML

Hi there, 

My husband was recently diagnosed with CML in the Chronic phase. He has been on imatanib and Allopurinol for 3 weeks. At each weekly blood test result his WBC result has been dropping considerably (it was 479 at diagnosis and today it was 14.2), his Platelet number has dropped and now middle of the normal range and his RBC number is a little low but we’re told it’s not worryingly low. The consultant says she is pleased with how he things are going.

Today I asked the consultant whether these encouraging test results were a signal that he is responding well to the TKI and she explained that the BCR test result was the important indicator. But we won’t get that for another 2 months!

Are the blood tests an indicator that everything is under control, or is there still a risk of progression? Is the Allopurinol balancing the blood results, or the TKI?

Im finding it so hard not to worry about every little thing!!

Any advice on how to manage our way through these early days and how best to understand things would be helpful to hear!


Hi there,

Sorry to hear of his diagnosis. You’ve probably scoured this forum and read many posts by new CML diagnosis to date so without repeating myself too much I’ll just say your husband is responding well.

He had a very high white cell count mine was considered very high at 330, I had a spleen the size of a rugby ball too (that took about 6 weeks to return to normal)

Some of us started on hydrea to bring the white cell count down before commencing TKI. It sounds like your husband was lucky to start straight on TKI. It took me about 3 weeks to fall to exactly 14.2 myself so that’s a coincidence. The alipuronol he will only take for the 1st month this drug helps prevent gout (cause by uric acid) buildup. This is normal protocol.

It took about 1 month for all panels to be really good.

It’s good that he’s panels are looking more like they should and this will be considered a complete haematological response when they are all within range. (This being the easiest of all milestones to reach and is pretty much a given on TKI)

He would have had a baseline PCR test to measure his level of BCR-ABL at around diagnosis this can range from 10 - 300%. This number is insignificant what is significant is that after 3 months of TKI therapy is that it drops to <10% (or there abouts). The trend of drops is the most significant rather than reaching any given milestone. For example if his baseline was 100% and he fell to 90% that would be a bad response but if he started at 100% and fell to 15% (not quite 10% but almost) this is the real first goal and evidence TKIs are working.

It is a very nerve wracking time in the early days and your mind if you let it will tell you all sorts of grim things. Ignore them, 95% of people respond to TKI and live a full and “normal” life.

I won’t overload you with too much info but the responses in short are

Complete Haematological Response (which he is on target for)

<10% BCR at 3 months

< 1% BCR at 6 -12 months (once here CML is beaten) called a complete cytogenic response meaning the bone marrow is back in action amd is the most important milestone.

<=0.1% BCR at 12 - anytime MMR major molecular response. This took me 30months to achieve so don’t get too hung up on the time points although your doc might lol (this is the one the docs will aim for and just means that response has been great and one day if you fall lower in response MMR4 and below one day he may be able to give up treatment) however only 50% achieve this so it’s likely he’ll be on meds for life.

It’s hard not to panic as it has the dreaded C word attached to it. Lucky for him it’s the C that he can live with for the remainder of his life with daily popping of a pill which will more than likely be a normal one. Everything is going to be fine. You won’t believe it for sometime but you both will. Hang in there.


Thank you Alex, for your reply - very reassuring!

My husband was on the chemo drug you mention for 1 week before moving to Imatanib...

I am reading lots and I’m particularly pleased to have found this forum. Mostly the info I’m reading seems to go into detail from the c. 3mth point and explains the different remission levels but while we head towards that I wanted to understand if everything was going as expected, which it sounds as if it is! 

Thanks again for taking time to reply!

No problem at all. The fact his panels are looking good is great news and to some extent is a part of the overall picture. Once you get to month 3 you’ll know to what extent he’s responding to Imatinib. If he’s not responding too good to that after 3 months it will prob be a wait and see kinda thing if he’s close to <10% then all is good.

I am sure he’ll respond just fine (most do) and if for some reason it’s not so good you have another 5 TKI options or time so don’t panic if that’s the case but I am sure like most of us it’ll be just fine.

For me my journey went quickly then my response slowed right down from <1% CCYR to 0.077 MMR (that part took 2 years) in other words fast at first then to a sudden stop then another fairly big drop: as I said the trend is really the most important. Some people have taken decades to get to MMR and they did just fine.


My husband was diagnosed with cml last year.The first days are difficult,we were very tensed till we got the first pcr result after starting medication.Drink lots of water and try to relax.
His rbc and hb are still low,I think they take time to recover ,his doctor didn't seem worried.The blood counts will slowly stabilize.

Hi Alex,

hope you don’t mind me contacting you again - we had this weeks blood test results back and his RBC and Platelets are both in normal range but his WBC has gone back up from 14.2 to 24. We’re waiting for the consultant to call us so we can ask whether this is something to worry about but I wondered if you knew of the WBC fluctuating?


Hi Kirst,

Sorry for the late reply I have just seen this.

Its good that RBC and platelets are in the normal range. I believe white cell can be a bit stubborn for instance I started Hydrea and my cell count actually went up after a week on it but then its started to drop again. This could well be the same thing.

It's hard not to panic. Do you know his blast cell count was at diagnosis mine was suprisingly 1%. I believe chronic phase is 1 > 15% or their abouts.

And the hardest part is all the faffing and waiting for docs to pull thier fingers out.

Hope you get some clarity let us know how you get on.


Hi Al,

Thanks for replying! The consultant called us as promised and said it wasn’t something to worry about given his count is still low. But they have moved him back to bi-weekly blood tests (they had moved him to monthly).

we still haven’t been told his starting PCR despite asking. They keep saying it’s not on the system yet. But we will keep asking!!

These early days and weeks are hard! Thanks for taking the time to reply to me!

That’s great news.

Over the course of the 3 years I have been diagnosed with CML (and the 3 years I was likely undiagnosed I might add) I have learned only to worry if my consultant worries. Mine is always super cool and I’ve been told he’s a man that doesn’t mince his words.

I am sure the white count will fall and if it doesn’t it’ll be investigated and more than likely a treatment dose or change is the worst case that I can see personally.

I completely understand how hard this is for you all I couldn’t believe what was happening to me at diagnosis and was in a constant state of fear for a very long time. Over the years and once things become predictable again you’ll learn to relax.

Either of you don’t beat yourself up for feeling a particular way this takes time to process but I am sure like all of us those fears will dissipate quickly and sudden.

That’ll happen when he’s CCYR <1% BCR and then MMR. I am a different person since achieving both and I am sure he will be too.

Keep us posted and reach out anytime - I don’t like any kind of suffering!