6 replies to this topic

[Beckster]

Hi, I'm Becky  28, from  Indianapolis, IN and I was recently diagnosed with CML on June 20th.   Last week when I had my 2nd follow up with my hematologist, he told me  that I have the presence of P190 which qualifies me as high risk due to  studies showing that patients with this variance have decreased chances  of responding to TKI. Does anyone have this variation?  What was your  course of treatment?  I'm currently taking 600 mg of Gleevec and seeing  my hematologist every two weeks, however, we have been communicating  through email more frequently due to his concern for it being high risk.

My  doctor recommended a second opinion since he has not worked with any  patients with these characteristics.  I have done some research and will  be going to Mayo Clinic in Rochester within the next month or so to get  a full diagnostic.  The only information my doctor was able to give me  was this article (link below) which does not have a very positive  outcome.  Anything anyone can tell me about this would be a huge help.

http://bloodjournal....14/11/2232.long

Becky

[JoshLee]

Hi Becky,

      I don't know much about this, but I would email Dr. Brian Druker. His email is: drukerb@ohsu.edu He is one of the CML greats. I have emailed him a few times and even though he is not my doctore, he has always gotten back to me. Also, there is a very knowledgeable person on this board named Trey and I am sure he will respond and may be able to give you a little something to go off of. I am 27 and was diagnosed last December. Good luck with the trip to Mayo. -Josh

[Trey]

P190 is also called the e1a2 form of the Philadelphia Chromosome, which is the mutant chromosome that causes CML.  There are others here who have e1a2 and are responding to drug treatment.  The e1a2 is the third most common version of the Philadelphia Chromosome  that causes CML.  But it is more rare.  By itself it does not mean that your case is "high risk", since e1a2 will often respond well to CML drugs.  Response to drug treatment is the key, and you will only know that over time.  But that is true for all of us.  The e1a2 can also be associated with a form of Acute Lymphoblastic  Leukemia (ALL) that is called "Philadelphia Chromosome positive ALL", so you will want to ensure a propoer diagnosis, which is a good reason for  going to Mayo for further review.

Some questions for your Onc and Mayo Specialist would be:

1) Is e1a2 the only form of Philadelphia Chromosome that you have?  If you also have b2a2 or b3a2 (also called e13a2 and e14a2) then that is not as unusual.

2) If you have multiple forms of the Philadelphia Chromosome, what are the proportions?  If e1a2 is very small in proportion, then that is not so unusual.

3) Do you have any other "high risk" factors such as high blast count, other chromosome mutations, etc?  That would make you "high risk", but the e1a2 alone in small proportion to b2a2 or b3a2 would not necessarily be high risk.

4) Did your Onc do a test called a "Flow Cytometry Test" to further define what is going on with your blood cells?  If not, you should ask to have it done; I would want the info available for the Mayo viist.

5) Should you start with Sprycel rather than Gleevec?  (I would)

Gleevec  and the other CML drugs will often work for e1a2.  You may want to read  the following (it is technical, but you should be able to get the main  points):

http://bloodjournal....ull/114/11/2232

If you want to read more, here is some info:

http://community.lls...age/36755#36755

http://community.lls.org/thread/3349

[LivingWellWithCML]

Trey,

On point 4) ... what exactly does Flow Cytometry show/prove/rule-out, and is it run strictly on bone marrow *aspirate*?  Just wondering how one should interpret the results of that test in conjunction with Q-PCR.

[Trey]

Flow Cytometry for leukemia is done on marrow fluid.  The test shows cellular information, and is useful for more difficult cases (not needed for most of us).  It shows whether there are unusually high levels of certain cell types, which can reveal clues when related to other information.  For example, high levels of certain types of lymphocytes at diagnosis (instead of the normally high neutrophil levels in CML) combined with e1a2 might suggest looking into a Ph+ ALL diagnosis.

[Tedsey]

Dear Becky,

I was not diagnosed with p190, but it showed up six months later on my PCR with a new onc and new lab.  If I remember correctly, it wasn't until I was on Sprycel before my PCR showed it was undetectable.  But it was always pretty low compared to b2a2.  So far, it has been over a year and it remains undetectable on all my PCRs.

I was also told I was high risk due to this and other factors.  Gloom and doom from the oncs.  But so far so good.

All the best,

Tedsey

[JEANNETTE1403989250]

hi BEKY

I HAVE CML 190 FROM SEPTEMBER 2008.

I TOOK GLIVAK  16 MOUNTHES AN TILL NOW I TAKE SPRUCIL.

I KNOW THAT   MAYBE FEW PEAPLE HAVE 190P

PLEASE CONTACT ME

JEANNET.