6 replies to this topic

[thomaskk]

It is about my Dx !

I was Dx on Nov 19th 2013 ( Age 44 )

WBC : 24000, Plt : 1.1 Million , Baso 3.5 , HB 14.7 etc , No Spleen enlargement , No blast

1.   BMB : NO PH + cells, , Hypercelluar  Marrow , Myeloid series predominate reveal normal pattern of maturation , Eosinophils ( 14.00%) , Basophils ( 4.0%) , Megakaryocytes seen, adequate in normal size ., Lymphocytes are normal morphology , No increase in RE activity , Iron stores 3+  ( Kindly help me to understand this !!, PH negative CML or poor Sample ? what is RE activity ? kindly explain the findings  )

2. Dr thought I am having some other MPN till the FISH come with 56 % tarns location . BCR/ABL t ( 9:22)(q34:q11 ) ( Is this normal ? )

3. My 3rd Month PCR

           BCR -ABL1 / ABl1 % Ratio  ; 1.536

           BCR -ABL/ABL  IS % Ratio : 0.860 ...............................................................................( This must be international ratio ? )

4.   FISH : 0 Ph cells

Regards

Thomas

[Trey]

Since you were diagnosed with such early disease it is theoretically possible the BMB cytogenetics could be zero, but the FISH was 56% (I assume at diagnosis?).  I can understand one or the other, but not both at the same time.  The FISH should have been zero or very low to match the negative BMB test result.  Maybe a blind Cytogeneticist read the BMB sample?  Seems like a lab error of some type.  Later tests also confirm CML.  You are already CCyR.

The RE should probably be ME, Myeloid to Erythroid ratio, which is ratio of granulocyte WBC to RBC.  Yours was normal.  Most would be elevated at diagnosis.  Again shows early diagnosis.

[GerryL]

Hi Thomas,

I had two BMBs done at different places, the last by my current doc - they both showed negative for CML. But FISH and PCR tests indicated CML. I was diagnosed very early. I'm doing really well and my last test was PCRU whilst off Gleevec for three months.

I know it is difficult when you've been in control of most of the things happening in your life, but try to relax and let Gleevec do its thing.

[thomaskk]

Thanks . I think we have many things in common.  Do you mind sharing your pcr journey with me ?

I am happy to know that you doing very well.  Congratulations

Thomas

[thomaskk]

Thanks.

It is true that my FISH at Dx was 56%. But the PCR after one week on Gleevec was 11.67 %

Thomas

[PhilB]

Do you have a twin brother who had a BMB on the same day?  The FISH and subsequent PCR results confirm you definitely have .  If the actual position was really 50% positive then the odds of a 20 cell cytology all being normal are less than 1 in a million. 

Unless there is another Mr kk somewhere in your area who has just been wrongly diagnosed with CML, but feeling very happy about their immediate PCRU, then it has to be an error in conducting or reporting a test.  I suppose it could have been a 5.6% FISH with the decimal point reported wrongly as at that level you would have a one in three chance of a negative cytology.  The problem with that is that the disease level would have been too low to have caused your elevated counts.

Trey's blind cytogeneticist is definitely looking like the prime suspect.

[thomaskk]

Thanks a lot. I am totally  confused with the numbers . The medical team were so sure that I am having PV till they got JAK 2 negative in their hand and then confirmed ET. But with the  "56%" FISH they were forced to declare CML.

But my perpetual confusion is : if the CML load was such low at Dx how come I managed to reach only CCYR with .860 % IS in three months ! I should have reached at least MMR

Enjoy your weekend

Thomas