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Re: Blood test questions. Newly Diagnosed with CML Aug. 21/2019

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Hi, 

I'm in Canada. We can log in and look up our own blood test results after we have blood drawn. I don't know if you can do that in the UK.

I went in for an elective surgery May 13, 2019, and my surgeon informed me that my WBC were high.

So I was tested and got a diagnosis of CML.

My blood work for something else March, 2016 had a normal WBC. So I got CML sometime between 2016 and 2019.

5'6". 115 pounds. Female.

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My May 13 / 2019 blood test WBC count was 39.0. Because of my elective surgery complications I had 5 blood transfusions but WBC dropped to 24.0

My Aug 23 / 2019 blood test WCB count is back up at 57.0.

So too high since it's supposed to be 4.0 - 10.0 right.

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May 13 test - It only wrote "blast occasional" with no number.

BUT

Aug 23 test - My blasts are .3

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So, looking at my blood test...

This is where my question is because I don't know what phase I'm in yet. ‚ÄčI read certain blast counts written as percentages. Yet my test writes .3. No percentage on my form.

QUESTION: Does .3 blasts, actually mean my blasts are 30% then?

Because I read this in an article "In the blast phase, there are 20% or more blasts in the blood or bone marrow, and it is difficult to control the number of white blood cells."

As you can see in the above statement ^^^^ blasts are written in percentages.

And, I'm trying to figure out which phase I'm actually in before my next appointment which is Sept 30.

Am I in the 1. chronic 2. accelerated or 3. blast phase?

*Can anyone read blood test results? If so, is there any way I can upload them so you can see them?

The media browser says I am not authorized to upload anything. 

I am a science mind so like to have all of the information, if I can get it. 

Thankyou ahead of time.

Vancouvergirl

 

Hi Vancouvergirl,  welcome to the CML support forum.  I'm worried because you mentioned you've been recently diagnosed and that you're next appointment is at the end of the month but you didn't mention if you've started TKI therapy.  Have you started TKI (tyrosine kinase inhibitor) therapy?

Kirk

Hi Kurt,

My first introduction to a CML specialist appointment to go over general information about CML, was on Aug 21 / 2019.

This hemo specialist, informed me she got the blood work results back that indicated CML, in July. But she'd not met me before, so wanted to explain I had it, in person at my first hemo specialist appointment with her.

That happened at my first meeting with her Aug 21 / 2019.

She explained TKI therapy at the Aug appointment, and said I'd be staring TKI therapy, but she had to send me to this new specialist who can't see me until Sep. 30.

So I have to wait a month to start TKI treatment.

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I don't know that this is all being done in a timely fashion.

Simply because I am new to CML, and I don't know how fast CML progresses. Or if CML progression through the phases, is highly individual etc. 

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I did ask the assistant to the new specialist that called me to inform me of my first Sep 30 with them, if I was being seen fast enough, since I have to wait 1 more month for my next appointment.

The assistant said she can only assume, that once the new specialist was sent my blood work and saw the results, this she based her decision to make my appointment with her 1 month down the road on Sep 30, because I didn't need to see her sooner to start treatment.

But this is all "assumption" on the assistant's part. 

Because of these assumptions and my later appointment date to start treatment, I am here posting to try to get some information on blood work findings etc.

Thankyou.

Vancouvergirl

Hi,

Waiting until the end of the month for your appointment is not ideal, but in one way a little comforting. I suspect the blast count is 0.3%; if your blasts were 30% no-one would be waiting another 4 days let alone weeks before putting you on a TKI. However it should not be up to us to second guess that.  I don't know what pressure you could bring to bear, but if I was in your situation in UK I would be pressurising them to bring the appointment forward, not so much for your long term prognosis, but for your peace of mind.  

CML is highly individual. Like me however you seem to have been diagnosed at a comparatively low WBC. There are people on here and doing fine now whose WBC was in the tens of thousands at diagnosis. Many were diagnosed from an enlarged spleen which was trying to break down all those cells. Does your blood report have a FISH score? (if you look under "about CML" you can get an overview of the different tests.) There might also be a test called PCR or BCR-ABL. These give an indication of what proportion of your white cells have the abnormal gene. FISH is used at the early stages; BCR-ABL when the percentages get very low.

Let us know if you have either of those, and push the specialist.

Hi AlastairC,

Well, my personality wants to know things in order to understand how to problem solve, so as much as I'm not wired for anxiety etc, my utter impatience lol doesn't make the wait comforting. I'm the impatient type only because I like clarity, so I can see the best way to move forward for my body.

So you think .3 is 3%? Interesting. Okay I'll definitely post back when I find out.

And ahhh, so if blast cells were at 30%, you think no one would be waiting to see me. I'd have been pushed through. Gotcha. 

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YOU actually answered a question that has been on my mind.

When I googled forum threads behind my questions, I kept reading threads of people writing their WBC was at 70,000 etc. I'm like what are they measuring in the thousands, that I don't understand? Because my WBC high is 57. I thought I was missing some kind of test number that I didn't understand.

But you're saying WBC can get in the 10's of thousands. Okay thanks for that piece of information.

So like myself, you had a comparatively low WBC as well then.

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You asked: Does your blood report have a FISH score?

Me: Not that I can see. Where can I upload my test results? I have no problem with people looking at it. I cut my name out of it. 

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You wrote: FISH is used at the early stages; BCR-ABL when the percentages get very low.There might also be a test called PCR or BCR-ABL. These give an indication of what proportion of your white cells have the abnormal gene.

Me: I don't see those names or acronyms on my current tests.

BUT, I had to do more blood tests AFTER my Aug 21 appointment. And those results weren't posted to my health account that I login to, to read my results. Very unfortunately my new blood test results, bypassed what I can see in the system, and they were forwarded directly to the new hemo specialist I see on Sep 30. So maybe she did those tests, and she'll discuss those when I go to my Sep 30 appointment.

Thankyou for your input.

Vancouvergirl

 

Compared to my diagnosis experience seven years ago, yours is not being done in a timely fashion.  If I remember correctly, at my first oncology appoinment blood was taken, a bone marrow sample was extracted and a sonogram was done to check the size of my spleen.  My next appointment was about a week later and I had my medication a couple of days after that.

It's fairly easy to post images on the Leukemia & Lymphoma Society forums.  If you set up an account there, you could probably link them from this forum and you might also get some additional feedback from that group.

Here's the link to the LLS Community:  https://communityview.lls.org/

And here's a link to my LLS profile which has a couple of test result images:  https://communityview.lls.org/users/kirk

Hello
I think you are confused about your numbers. Your wbc is 57 it means 57 x 10^9 per litre or 57 x 10^3 per microlitre (cubic milimeter). In other terms it is 57000 per microlitre.
You mentioned some figures like 70000 it may be 70000 per microlitre or you can say 70 x 10^9 per litre.
Coming to your blast number it is 0.3 (i assumed it may be absolute number). It means out of 57 your blast cell is 0.3, so in percentage it will become 0.53%.
CML -chronic phase.
For complete diagnosis few more tests required like cytogenetics, PCR (BCR-ABL).

I’m sorry, but we don’t currently have the facility to upload pictures or test results.

It’s coming soon, though.

In the meantime you could use imgur.com to upload a photo and post the link here. 
 

David 

For those of us who are scientists or engineers, it is impossible to instruct us not to Google and search out information. It will help you at each appointment to insist upon being provided with a copy of the blood test reports and the laboratory reports.

At the time of diagnosis, my consultant would only indicate that I was "Fish positive for BCR-ABL". When I asked for a report, I was just told, "you will be 100%". I was given a Sokal risk score. A calculator appears here:

https://www.mdcalc.com/sokal-index-chronic-myelogenous-leukemia-cml

You will have your spleen size assessed perhaps by physical examination or by an ultrasound scan. Once you have the spleen report you will have enough information to assess your own Sokal score.

At three months, I received my first laboratory report. I was told that at this stage the Ph + (Fish) score trumps the BCR-ABL1:ABL1 ratio. I could then see that at diagnosis my fish was 92% and at three months it was 17%.

My consultant at diagnosis was very keen to get me onto TKIs on the evening after the consultation. I am surprised that they ask you to wait a month for the next appointment.

Hi RC Kirk, 

After reading a few members comments here, I am getting the feeling that my case is not being handled in a timely fashion. I am in Canada. We are lucky to have socialized medicine but due to cut backs, but wait times to see specialists, and to get certain procedures, are getting much too long for some things. I'm wondering if this area is feeling those effects as well. 

I sincerely appreciate you linking me Leukemia & Lymphoma Society forums https://communityview.lls.org/ and your LLS profile which has a couple of test result images.

Very kind of you. I've got some good starting points.

Thankyou so much.

VG

 

Hi nk_govani,

YES! I am confused about my numbers. Your post clears this up. So in fact, when people are saying 70,000, that is not high comparatively to me, since I'm actually 57,000 when using proper calculation methods. Okay, and I understand the rest of that explanation so thankyou. 

This I don't understand though. You wrote:> Coming to your blast number it is 0.3 (i assumed it may be absolute number). It means out of 57 your blast cell is 0.3, so in percentage it will become 0.53%.

Me: So by your conversion, 0.3 is 0,53%?

So if that is true then I am not near 30% blast cells which would put me in the blast phase. Hmmm...

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QUESTION. I just had another blood test by my ND. Not related but I got new numbers. 2 things...

1. Why would my WBC down from 57 to 47 In a week? That is the new WBC number as of yesterday.

2. So 47,000 then right?

3. In regards to the word "blast."

a) July 17 blood test wrote "blast occasional." 

b) Aug 23 blood test wrote, blast .3
 
c) Sep 4 blood test wrote "blast occasional."

QUESTION: What is the difference between seeing the world "blast followed by a number," like in b) and the words "blast occasional?"

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Thankyou for your input.

VG
 

Hi David Fitz,

Oh my gosh thankyou. Okay so here's a link that shows the last 3 blood tests of mine.

July 18 /  Aug 23 / and yesterday Sep 4.

I underlined in red, the WBC count changes  each month.

And I underlined where it says "Blast occasional" and "Blast .3." That confuses me.

1. I'd love an explanation on the Blast expressions plus anything else that anyone can come up with.

https://imgur.com/W68yYNU

I hope that image ^^^^ doesn't post to their gallery feed. I'm trying to figure it out. Though my name is not attached. 

Thankyou so much.

VG

Hi Nimbus 2,

You wrote: For those of us who are scientists or engineers, it is impossible to instruct us not to Google and search out information.

Me: Exactly!

You: It will help you at each appointment to insist upon being provided with a copy of the blood test reports and the laboratory reports.

Me: I just emailed myself to ask her at our appointment, to make sure she forwards me all blood tests and lab reports that don't hit my ehealth account. Thankyou for that information.

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This that you linked above is interesting. I need to know my myeloblast and spleen size (as you pointed out) to do it accurately.

https://www.mdcalc.com/sokal-index-chronic-myelogenous-leukemia-cml#next...

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Doesn't seem like they share much...at 3 months you received your first lab reports. 

We've not discussed Fish scores or BCR-ABL yet. Thankyou for linking those with an explanation as well.

You were put in TKI's quickly too. Hmh. Not so with me.

Thankyou very much as well. I appreciate it.

VG

My consultant tells me that four measures are of interest from the full blood count for the CML patient: WBC, haemoglobin, neutrophils and platelets. Of course, later you will have the Ph+ (Fish) result and the BCR-ABL1:ABL1 ratio.

You might be told that you are slightly anaemic when they look at your haemoglobin.

I know from a year ago that it is a difficult time when you have so little information at the time of diagnosis and everyday of waiting feels like a month. The more complicated genetic tests do take the laboratory a little time to perform. Where I am, the test for the BCR-ABL1:ABL1 ratio takes 4 to 6 weeks. The laboratory tests are performed in batches for economic reasons.

There can be some medical reasons for the delay in prescribing TKIs, e.g. pregnancy.

You will feel much better once you have some measures and you understand what is going on. Life starts to normalise quickly.

Hi Nimbus 2,

You wrote: My consultant tells me that four measures are of interest from the full blood count for the CML patient: WBC, haemoglobin, neutrophils and platelets.

Me: I linked my last 3 labs on a post above, and they show my WBC, haemoglobin, neutrophils and platelets. And they show other results as well.

Here they are again. https://imgur.com/W68yYNU

(Another member advised me I could use imgur.com.)

Do you read the blood of tests I linked above? I looked up the meanings of each word and read the explanations, but it doesn't tell me much beyond my ranges prove an infection or cancer. I guess that is all they confirm?

I guess the next appt on Sep 30 will include tests for Ph+ (Fish) result and the BCR-ABL1:ABL1 ratio.

The "wait" isn't difficult per se. My frustration comes from not having specific "understanding" on the test results that are already before me. I can see them and the corresponding words and I like to understand things in totality. Especially since I have access to some of these test results already.

I understand the basics in that my WBC count is high. The test writes normal range is between 4.0 - 10.0, and I'm at 47.4 as of 2 days ago. That's pretty basic and general. Thankfully a member broke down those numbers so I understand where the 10 thousand comes in. 47.4 would be 47,400 type thing. So as said above, I googled the meanings of the words like "neutrophils" and such but I'm sure there is more to my sequence of numbers that I don't understand. And I'd like to.

My approach to anything has always been "get the answers to ask the right questions." Get educated. And if I can go to veterans to ask questions and get answers, that shed light on more questions, that I can add to my list of questions I'm bringing into the Sep 30 appointment, then I will.

From this perspective, you've all positively contributed, to my current next appointment question list. I SINCERELY appreciate that.

Oh I'm not pregnant but hear what you're saying in regards to why they'd delay giving TKI's right off the bat.

So, do you have anything you might add after reading and comparing my last basic bloodwork results?

Thankyou very much for your input as well.

VG

 

Hi
Looking your numbers, the fluctuations in wbc is very normal as wbc whould not be constant for a month.
If you have no any other symptomatic infectious disease then it indicates possibility of CML chronic phase (other test like FISH, BCR-ABL must)
All numbers in your blood report shows absolute value so there is no significant difference between 0.3 and occasional bcoz 0.3 is very low number. You have approximately 0.5% blast cell. So dont anxious for blast crisis. At this time you should be on TKI. I hope this will help you.

Hi nk_godvani,

Okay and yes, I under stand everything you wrote.

I very much appreciate your clear explanation as well.

Thankyou.

VG

I'll post back more specifics in regards to my diagnosis, after my Sep 30 appointment, which is the 2nd CML related appointment I've had. I suspect they'll start me on TKI's then.