You are here

Possibly Cml?! What do you think?

I got referred to a Hematologist last year cause i had high platelets. When I went to the Hematologist everything was normal except my iron. So I had to go back every 3 or 4 months for bloodwork. They done blood work to check a few things the firat time I went. This last Monday i went back and my wbc was 11,000 which she said was elevated. She told me that she thought they had already done a Bcr-abl screen but she said they hadnt and she was gonna do it when I go back in 4 months for bloodwork. She said over looking back since 2013 my wbc has always been slightly elevated. She said she wouldve sent me for bloodwork for the screen monday but she was concerned about it...I called their office a couple of days after bloodwork this week amd her nirse called me back and i told her that my lef leg had beem hurting off and on since 2019 and she said that she didnt think it would have anything to do with this that it would've showed up active in bloodwork?! What do you guys think?!

Hi, do you have any other symptoms ,weight loss ,extreme fatigue  ,bad night sweats ,swollen stomach on your left side ,hair thinning ,I had all this but put it down to the menopause ,it was a hell of a shock when they said CML .Maybe you should say how worried you are and ask for a BCR ABL sooner .I know people can have raised WBC but it's certainly not always CML.Hope this helps a bit .Good Luck ,Denise.

I'm supposed to go this week for iron infusions and gonna see if i can speak to my doctor while im there about the screening. I think 4 months is too long to wait, now since she mentioned it, its got me worried and thats all i think about.

These past few days ive been having some sharp pains here amd there in my back or side, thinking of asking when i go for my iron infusion this week if they can check my bloodwork.

Is the pain on the left side? If so this could indicate an enlarged spleen.

You should definitely ask for blood test to rule out Ph+CML - it is not difficult to perform a FISH test (testing up to 200 cells) which would detect the presence of the Philadelphia chromosome positive cells. If that is negative, but you're are still worried, a Qualitative PCR test would show the presence of the abnormal fusion gene BCR-ABL1.

Sandy

Yes its on the left side. I went last week for bloodwork, ive been going every 3 to 4 months since last March. My dr told me monday that she wasnt concerned because nothing in my blood work made her think i had leukemia but she wanted to do the test to say she did it. My wbc the last time i went was normal, Monday it was 11,000. I called them today about the pain and the nurse said i needed to see my primary dr that it didnt sound like a symptom of anything related to leukemia. But, i go tomorrow morning for an iron infusion and gonna see if they'll check my bloodwork again. You mentioned the fish test, shes got me down to do it in June when i go back for a checkup.

She told me that my wbc has been normal and up and down since 2013

What exactly does up and down mean in numbers?

There are different medical scales so tell us your country of testing too.

Cml is extremely rare and pretty unmistakable in its upward trajectory. Blood markers would show it clearly, over months rather than years (acute leukemia is much much quicker)

My own case:
Nov wbc bloods normal
Mar wbc 50,000
Jun wbc 330,000

Normal range using this scale 5,000 - 7,000
For comparison 10,000 might indicate the body is fighting off an infection. 20,000 (without some blood cancer) you'd likely be hospitalised with scepteceamia and unable to move.

Im in the United States. Up and down in numbers over the years meaning sometimes they was elevated, sometimes they was normal. When i had my last checkup last year they was normal, 2 weeks ago they was 11,000.

Thanks for the response Amanda. 

Do keep an eye on your wbc count and let me know what normal range is considered where you are (it is usually shown in medical reports). If your scale is the same as mine,  11,000 is on the high side of normal but not in CML territory. Likely fighting off an infection, viral or bacterial.

If they are regularly up at this level, its likely something is going on but very unlikely that its CML. 

My guess, assuming that you are female, is an inflamatory or auto-immune issue. I have no medical training, this guess is from the fact that women are more prone to such things, and it can take ages to that a diagnosis and diet and lifestyle in the US can aggravate these issues. 

Keep researching and actively taking charge of your health issues. We are here for you if it turns out to be CML.  

11,000 is the high end on wbc. I have to go Wednesday and they're gonna recheck my bloodwork, I asked them to because I've been having a weird pain in my back or side that comes and goes for about a week or longer now. If im not wrong, when I started going to the Hematologist she done a test for auto immune diseases, she thought she had done the Bcr-abl but didnt, she's gonna do that. She said sometimes you can have it and not show symptoms till later on. I'm curious now since my wbc is elevated and now im having pains that ive never had before and the er done a ct scan on my back and couldn't find anything, if my pain is my spleen? I get bloodwork Wednesday...

It would be unusual to have pain in your spleen at this low a level of wbc, from CML at least

Bcr-abl tests are incredibly costly, they would not be done without good suspecion, unless you insist and pay for it.

Auto immune disorders are very difficult to diagnose (unlike cml, which is pretty easy to diagnose once you check for it). ANA is a test that can be helpful for auto immune diagnosis.

My doctor said shes doing the Bcr-abl screening when i come back for lab work, she said she thought they had already done it, so we shall see.

Also, last March when I first started going to the Hematologist, she done the Ana test and a few others and thought she done the Bcr-abl, but she she said she got to looking for it and couldn't find it, so she's gonna do it when I come in for bloodwork.

When I started out in 2016 my platelets were elevated. I had to go to hematologist as well.  2020 my WBC was elevated, but not to elevated. Finally The hematologist/Oncologist did a bone marrow biopsy, and it came back as CML, scary! My WBC got as high as 21,000 and dropped to 18,000 my platelets got as high as 670, and dropped back down to 520... So it was a fluke that they even did the biopsy I had other things wacky in my blood work like baso, lymph’s, Mchc.. I was definitely not thinking it was CML. 
everyone is different I spent countless night’s googling what it could be and all came back as leukemia. I met a lady who had the same things going on we got  bone marrow biopsy the same time, and the same day we found out we had CML. I hope you do not have this, but if u do it is treatable. Prayers!

Thread continued from: 
WBC level at diagnoses