7 replies to this topic

[tiredblood]

Trey, you've seen my labs and Scuba, you've explained focusing on JAK2 both via PM.  I know I need a BMB to get a complete picture.  Doctor says I may have polycythemia vera or myelofibrosis and not sure if I have CML, that is IIUC.

 

When I read about PV and myelofibrosis, it seems to me that both usually exist with Ph- negative leukemia or both can lead to AML, although I did find one article that spoke of a patient who had Ph+CML and another MPD.

 

So, since a BMB isn't in the immediate future, but may come within months, what are the possibilities?  Let's say the PCR of 123.210% was accurate, what are the possibilities?  Inaccurate?  This is making me really anxious.

[KathyinCT]

I'm a 71 yo female with PH+CML, dx'd 12/2/14 from a BMB late October '14 at Yale/Smilow Cancer Center.  In addition, they discovered I have Stage 3 myelofibrosis.  I've been PH- since I was dx'd and treated for essential thrombocythemia since I was 46.  I'm also JAK2+.

 

For the past 4 years, I had been treated for ET, JAK2+ with Pegasys, a once weekly interferon injection (but had to stop before taking Gleevec 12/6/14).  So, I'm just taking 400mg. Gleevec, and  yet, the platelets are remaining stable to-date (high 400K), and I am CMR.  JAK2 has increased from 5% to 10% without the Pegasys.    

[tiredblood]

So, are you saying that you have two separate conditions; CML and ET?

[Trey]

TB,

You were diagnosed with only a PCR.  No BMB and no FISH.  That is poor procedure and I have expressed my concern several times to several people here about the risks of using such an approach. 

 

You reached PCRU very quickly (a few months) from what apparently was a very high diagnostic PCR (123% IS) at diagnosis.  That raises some questions about the diagnosis. 

 

A person can have more than one blood disorder.  Kathy provided an excellent example. 

 

A BMB would still be a good idea, even though you could have CML but not show positive any longer due to taking the TKI drug.  But the more important issue would be to look for other abnormalities.

[KathyinCT]

So, are you saying that you have two separate conditions; CML and ET?

Three, actually, and only one, CML, is PH+ ... the other two are PH- (myelofibrosis, stage 3 was also diagnosed with the BMB last October).  

[tiredblood]

Three, actually, and only one, CML, is PH+ ... the other two are PH- (myelofibrosis, stage 3 was also diagnosed with the BMB last October).  

Thanks, KathyinCT.  That answers my question.

[tiredblood]

TB,

You were diagnosed with only a PCR.  No BMB and no FISH.  That is poor procedure and I have expressed my concern several times to several people here about the risks of using such an approach. 

 

You reached PCRU very quickly (a few months) from what apparently was a very high diagnostic PCR (123% IS) at diagnosis.  That raises some questions about the diagnosis. 

 

A person can have more than one blood disorder.  Kathy provided an excellent example. 

 

A BMB would still be a good idea, even though you could have CML but not show positive any longer due to taking the TKI drug.  But the more important issue would be to look for other abnormalities.

My question was what are all the "other abnormalities" possibilities.  If patients could order up a BMB on their own, I would have had one long ago.

[Trey]

You asked: "what are all the "other abnormalities" possibilities".

 

The list is nearly endless.  There are chromosome deletions, additions, 2 and 3 way translocations, partial deletions, inversions, other blood diseases, and since there are 23 pairs of chromosomes the potential permutations are enormous.  Whether there is anything there to find is unknown.  But there is a reason why proper procedure should be followed at diagnosis.