Jump to content


Photo

How long does it take CML to develop?


  • Please log in to reply
1 reply to this topic

#1 M.A.

M.A.

    Advanced Member

  • Members
  • PipPipPip
  • 61 posts
  • LocationAustralia

Posted 31 January 2018 - 03:23 PM

Hi everyone

 

Someone on this forum (with initial WBC around 200 000) asked a few months ago if people had any idea when their CML might have started to develop. I can't add anything about the progression from 100 000 to 200 000 but meant to chime in with my own data in case it was useful but then didn't get around to it. So here it is...

 

Seven months before my diagnosis I had:

 

WBC 19 000 (normal range 3500-12 000)

neutrophils 11.56 (normal range 1.5-8)

basophils 1.96 (normal range 0-0.15)

monophils 1.96 (0-0.9)

 

The form clearly stated "This patient needs to be tested for CML" but unfortunately none of my doctors picked this up.

 

Seven months later when I was finally diagnosed it was:

WBC 89 400

neutrophils 63.3

basophils 3.5

monophils 2.68

 

However I also noticed that one and a half years before my diagnosis, even though my WBC was normal 7600, my basophils were 0.4 (normal 0.0-0.15) so I believe my CML process had started by then.

 

In fact it could have started even earlier because for ten years before diagnosis my basophils were between 0.03-0.07 and then at precisely two years before diagnosis they were right at the top of the upper band of normal.

 

So... 2 years for me I think.

 

One day, if we don't blow ourselves up first, we might see the advent of wearable technology that will detect these minor upward trends very early on. People could then get tested and then put on highly targeted drugs that knock the CML out in a week before it properly takes hold.

 

(*It was when I discovered that my two doctors had failed to notice the "this patient should be tested for CML" bit on the pathology results form that I decided to request back copies of my blood tests for the previous ten years and I have kept track of them all myself from that point on.)

 

 


CML diagnosed April 2016

Type One Diabetes diagnosed April 1980 (age 12)

 

BCR-ABL (IS)

46.77  April 2016

3.568  July 2016  

0.076  Oct 2016

0.016  Feb 2017

0.0079  April 2017

0.014  July 2017

0.019  Sept 2017

0.011  Nov 2017

0.019  Jan 2018

 

Sprycel

100mg April 29 - September 22

75mg  September 23 - October 28

50mg October 29 2016 to present


#2 campanula

campanula

    Advanced Member

  • Members
  • PipPipPip
  • 54 posts

Posted 31 January 2018 - 03:42 PM

Thank you for posting this, M.A.  It's good that you have such clear records over time; I hope it will be of value to researchers.  Interesting to note that your basophils were so high for so long.  I was diagnosed just two months before you were, and had experienced a lot of stress in my life for a few years before diagnosis, so I find your information helpful.  (I tend to think that I have inherited a defective immune system, as both my brother and father succumbed to blood cancers.)  I'm sorry your doctors dropped the ball and you weren't diagnosed earlier, but am happy to see that you have responded so quickly and deeply to treatment.


Dx 2/16: PCR = 59.4%

BMB showed second translocation.

400 mg generic Imatinib

5/16:  PCR = 0.88%

8/16: PCR = 0.04%

11/16 PCR = 0.01%

2/17 PCR < 0.01%

2/17 BMB results:  all translocations gone.

6/17 PCR = 0.03%

9/17 PCR = 0.01%

1/18 PCR = 0.01%

 

 





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users