5 replies to this topic

[mdszj]

All

I was dx w/ cml in July 2012 and am currently on 100 mg Sprycel.  I initially had a couple PCR tests that were not IS and did not get my first IS PCR until 8/27/12.  Here are my PCR dates and results of tests using IS figures:

1) 8/27/12 - 60.2% IS

2) 10/11/12 - 20.3% IS

3) 11/6/12 - 8.3% IS

4) 2/18/13 - 0.118% IS

All the above tests were done at Quest Lab. 

As background I should mention that I had immune throbmocytopenia (ITP) for over 20 years prior to getting cml (lucky me - 2 blood diseases!).  My normal platelet count was about 50 K, which never bothered me or hindered my lifestyle.

I should also mention for completeness that after a couple weeks on Sprycel my platelets tanked so I had to go off S until my platelets went up.  In the meantime I got a splenectomy, actually as treatment for the ITP, which made my platelets go up to about 150K.  I restarted on Sprycel on 9/25/12 at 50 mg, then went to 75 mg for 2 weeks, then went back to 100 mg S.  So now all is good in the platelet department and things are going good. 

My initial FISH test in June 2012 had the following results, looks like they tested 200 cells with the probe:

1) Negative for monosomy 5 and partial deletion of long arm of chromosome 5 including EGR1

2) Negative for monosomy 7 and partial deletion of chromosome 7 including D7S522

3) Negative for trisomy 8

4) Negative for deletion of D20S108 on chromosome 20 at q12

I never had a followup FISH test, but I am scheduled for one in June, along with another PCR plus some other minor stuff (CBC, LDH, metabolic panel, etc).  My hemo also said he wants to do a 1-year bone marrow test as well at that time.

My question is: does it matter that I did not get any additional FISH tests, in light of the fact that my latest PCR = 0.118%, i.e., lower than 1%?  Also, does my PCR indicate that I have achieved cytogenic response, or does that need to come from a 0% FISH result?

thx for any help on this.

Mike

[Trey]

The FISH is only one of 3 main tests.  At this point it is likely unnecessary since your PCR indicates you are below FISH detection limits (except that it has false positives that can occur).  Not having a history of FISH results is no big deal.  What matters is where you are right now.  You are likely CCyR which is below roughly 1% IS PCR.  Also very close to MMR which is .1% IS PCR.

Sprycel can be extra hard on platelets:

http://community.lls.org/message/96026

[mdszj]

thx Trey for the info.

Regarding the S and platelets: yes, I always thought that selection of Sprycel for me was kind of odd - from what I remember it has a little higher incidence of thrombocytopenia side effect compared to gleevec and tasigna. 

Ever since my initial dx and when all this stuff was going on, and when I went back on the Sprycel I was getting weekly CBCs all this time and they never really tanked like they did before I got my splenectomy.  So I am not sure whether this was due to the splenectomy or from the fact that I took a drug vacation and then went back on a reduced dose.

[mdszj]

Hello all,

I wanted to give an update on my PCR results and follow it up with a question.  In addition to the IS results I posted above, I also have had PCR tests from 2 other labs that did not use IS scale.  This post is to give results from one of the labs, which is at the Univ of Pennsylvania Hospital.  This is where the leukemia specialist my hemo consults with is located at.  My results from this lab at Univ of PA are:

1) 8/17/12 - 0.43052

2) 4/24/13 - 0.00128

There are no units with the results.  Here is what my email from Penn actually says:

Specimen Type: Blood Collection Date and Time: 04/24/2013 07:52

Ratio BCR/ABL1 to ABL1: 0.00128

RESULT: Positive

COMPARISON:

Log decrease from lab diagnostic median ratio: 3.2

Previous BCR/ABL1 to ABL1 RATIO: 0.43052 (8/17/2012)

Log change from patient's previous result: 2.5 (Decrease)

My question is, how does this match up with the IS results that I posted above?  I am not exactly sure how to interpret these results.  Does this mean I have gotten to MMR since the latest one on 4/24/13 is less than 0.1?   ANy help appreciated.

thx Mike

[Trey]

Let me first chide your Specialist Onc who has not done his job.  It is his responsibility to explain these things in an easy to understand format.  That did not happen for you, and you deserve better.

Your most recent PCR has been reported in a non-standard manner by your Specialist.  The result should have been converted to a percentage, but was not, so it does not compare with the other lab PCRs which have already been converted to percentages.  So the Specialist result is .00128 ratio which converted to a percentage is .128%, and the percentage is what should always be used.  MMR is .1% IS, but this result is not IS.  However, your report says your PCR is a 3.2 log reduction, so that is definitely MMR.  I can "eyeball" the Specialist results and say that these results are not very far from the IS.

The 8/17/12 PCR from your Specialist was also not converted, so it would actually be 44.052% compared to the 60.2% result done the same month by your regular Onc.  So these are close enough given that PCR results are fairly inaccurate at the higher levels. 

[mdszj]

Trey thanks, I did not realize that it had to be converted to % but it makes sense.