Hi my name is Lisa. I have a lot of questions about cml. I am on imatinib for 18 days and have no side effects. My fear it’s not working because of no side effects. I am 49 and mine was found when my wbc was 21,000 so Dr sent me to hematologist. It never got over 21,000 in fact lowered to 15,000. I had a bmb and Oncologist says that is what I have.. worry that the drugs won’t work? Looking for support...
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Just diagnosed with cml
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Hi Lisa, the fact your body is dealing with imatinib without any side effects does not mean it is not working. It just means you are one of the lucky ones who don't get side effects.
You are in very early days.At that WBC are you on allopurinol or something else to reduce the count? I'd suggest reading the newly diagnosed section under "About CML" above, and getting a template for the questions to ask at your next appointment (under "Patient Info"). Ask all those questions and bring the results back to us and we'll help explain. This is not a simple condition, but there are people on this forum who have dealt with most things CL can throw at them.
I started imatinib 13 years ago and am fine. Imatinib does not work for a a fairly small proportion of patients, but there are no at least 4 other options and one of them will most likely work if imatinib doesn't.
If you have to get a blood cancer you took a good option. Most of us will have a normal life expectancy. When I read about Imatinb 13 years ago one report said that they couldn't give an survival % as not enough people had died while taking it to enable the researchers to do the statistics properly. I found that quite encouraging.
Thank you so much for your fast response. I don’t know enough about CML so I found this group to help me. I know I am way over thinking all of this. My Oncologist said I am very early with wbc only being 21,000 and dropping to 15,000. He put me on the imatinib 400 mg. I may have bone pain, but was having that before due to being a CNA for years. I have been reading post about BCR and all kinds of funky blood test but have no idea what it means or numbers. My first appointment is this coming Friday so I am sure I will get to know what those test mean... Reading these post make me feel a lot better! I have read other websites saying I can’t eat fresh fruits and vegetables. One site said I can’t eat what I want. I don’t know what to believe anymore.
One of my questions is you said my WBC is low. When I went to Dr for routine physical my WBC was 15,000, platelets were 560 so she retested and WBC was 21,000. So she retested and WBC was 18,000. Platelets up to 670. Now 3 years I have been going through higher WBC, and Higher platelets. So she sent me to hematologist. He wanted to do a BMB so that’s what he did. When results came back it was CML he said he was surprised because WBC was down to 15,000. I didn’t ask much questions because all I could hear is Leukemia. He said I will take a pill once a day and do fine. I talk to people and there’s are high like 200,000. I am trying to understand all of this and I am sure I will have questions. So why is it my WBC is so low? Note 4 days after started pill I went to ER didn’t feel right. Did blood work my WBC was 21,000 again, my platelets were almost normal.
Hi Lisa
Welcome to our little club. A club no one wants to be part of but here we are.
Before I get into the details it appears you’ve caught CML early with a wbc of 15. I was diagnosed with a wbc of 300 and some I’ve seen have been 600! So you are very early on.
You’ll be in chronic phase which means the disease is slow and that’s the phase you’ll stay in once you start daily medication. This all sounds very scary in the early days and rightfully so. But the reality believe it or not is that in the coming months you’ll be able to put most of it aside.
Once you learn the lingo and get to grips with the blood panels and levels of testing and response you’ll get more relaxed with it. The unknown is always very scary. I cried like a girl for many weeks 🤣.
In short you’ll have your BCR-ABL measured over the coming months. This is the cancer gene responsible for CML. Once you start meds it’ll block this gene and also restore normal blood counts. Their are several significant milestones to meet and these are the things that cause the most anxiety. But seeing as you’ve caught yearly I suspect your numbers will drop quickly.
Surprisingly of all this is that your full blood count will return to normal in weeks not months. Then they’ll monitor BCR-ABL every 3 - 6 months for life. (Just to keep an eye on it)
Digest that first and once that happens BCR-ABL the thing that’s blocked by our meds will start to fall normally from a baseline of 100%. In reality this starting number can be anything from 10% - 300%. This starting number is insignificant what is significant is that it drops for the duration of your meds. The first milestone is to be <10% at 3 months and <1% (CCYR) at 6-12 months then 12-anytime thereafter to reach <0.1% (MMR).
Once you reach CCYR it means your bone marrow is normal and functioning and basically means CML is well under control. This is the most important one to hit. The next MMR means Majour Moleculer Response and that’s the one you’ll here the docs harp on about the most. It took me 30months to get here so don’t freak out if things happen in there own time.
I know that’s a lot to digest and I am repeating a lot of the info on this great forum but sometimes it’s nice to have someone spell it out in a message.
The reality is you’re scared but you’ll soon see lucky for the vast majority this is nothing more than a chronic illness.
All the best to you. Any questions PM me day or Night and I’ll answer best I can.
Alex
Thanks Alex,
it truly is a life altering thing. When I heard cml all I could think of is how long do I have. I cried for 2 weeks. I got online met some cml people and have less anxiety.. That was the biggest concern is why is my wbc so low compared to others? Thank u so much it helps having others going through the same thing.
Yes it does change a lot. And a lot of those changes believe it or not are not bad changes. Having CML for the vast majority is the best C if you get any. And if it didn’t have the C attached to it it would be soooo much easier to accept. Hang in there it DOES get better.
Alex
Hi Lisa
Your WBC and platelet levels are not necessarily unusual, though most people have higher WBC and maybe normal or close to normal platelets at diagnosis. In my own case, when I was diagnosed in 2009 my WBC was barely above normal (it was about 11,000) but my platelets were three to four times normal: it was the platelets that were flagged for further investigation, not WBC. I therefore didn't go on alupurinol to reduce my WBC - instead I was told to take low dose aspirin to reduce the risk of clotting! Not for long however because imatinib brought that back to normal in a very short period of time. It wasn't necessarily early diagnosis in my case - when they reviewed blood results from two years before, there were signs in there that something may not be quite right but I hadn't quite tipped out of the normal ranges.
Once my bone marrow biopsy and aspirate had been properly examined when being diagnosed in 2009, however, they told me I had an unusual translocation. Translocation refers to the swapping of part of chromosome 9 with part of 22, leading to the BCR/ABL gene and protein which drives CML. Precisely where the breaks and joins in the DNA happen can make a difference to how you present at diagnosis. I know mine is rare - and may be the reason for my somewhat unusual presentation - but the point is, not all translocations are the same and biologically we are all different too, so react in different ways. Imatinib worked amazingly well for me - I had side effects but relatively minor and nothing I couldn't manage - and as others have said, there are many very effective drugs for CML now. I was quite anxious at first but that quickly subsided as things got better. I am fortunate to be able to say I am now off all drugs, and have been since May 2015, and have been undetectable for a long time, both before and after I stopped imatinib.
Best
Richard
Thanks Richard,
highest my platelets ever got was 670, which btw when I got my BMB the platelets had dropped to 520. WBC highest was 21,000 and dropped to 15,000. My blood work 3 yrs ago showed something not right also. My PA had sent me to the hematologist 2 yrs ago and he did a ultrasound and said my liver was a little bigger. Liver Dr did all kinds of test and said they were all normal except I had a little stenosis. She said a lot of Americans have because of fast food. So I didn’t go back to hematologist figured it was not necessary, and he was very rude. So when they sent me again I got a different oncologist. He is a better fit for me.
Hi Lisa,
Don't freakout about low WBC, it's actually a good sign, means that you got it early. Indeed as Alex said, most CMLers get a DX on high numbers, but I also found out with relatively low WBC, 36.000. My platelets were around your numbers as well. After about a month, everything was in normal ranges.
It's gonna take a while to get used to medication, but also to the idea. During my first couple of weeks, I was out of breath and I thought my heart was going to jump out my chest. My sister had a good analogy for what I was feeling: imagine you drive a car really fast, and you suddenly hit the brakes, your body reacts violently to the deceleration.
In retrospect, it could be my body adjusting to the pills, but it could also be sheer stress. I'll never know.
Better days are ahead, give yourself sometime to get there!
Koralia
Hello Lisa and I'm sorry for your diagnosis.
Obviously you caught it too early!!I was diagnosed in March 2020 and also had low WBC. It was 20,000 and my platelets were 305,000. I'm taking tasigna and I'm ok! After about 10 days, my numbers were normal.
Of course I was very anxious with the diagnosis and I still get anxious sometimes but I get used to it.Give yourself time!!
Faidra