7 replies to this topic

[blueheron]

Hello all, I was dx cml july 2013, put on sprycel 100mg. good hem response, but 3 mo pcr missed 10 percent milestone - was 47% Now 6 month  pcr about the same but at least it didn't go up.  Waiting to hear back from onc. Nerve wracked! Tell me something good! MANY thanks - Blueheron

[Trey]

It would be more useful to have a FISH test or another BMB cytogenetics test.  Those are better indicators than PCR during early treatment.  Have you had a FISH test or a recent BMB?

[blueheron]

Hi Trey, thanks for getting back.  I think the tests were FISH tests. I'm really hoping to stay on Sprycel because I'm tolerating it for now, give it a little more time to work, but I know about the milestones and that it's not a good indicator to not hit them. Still waiting to hear back from my oncologist, he's consulting with a CML expert about my case. Anyway fingers crossed, and glad I found the LLS forums. Am I right in thinking the likely options for now are: 1 stay on Sprycel same dose, or 2 up the dose, or 3 switch to Ponatinib?

Thanks, Blueheron

[Trey]

If the 47% was a FISH, then you dropped from 100% at diagnosis to 47% at 3 and 6 months.  You are almost at the 9 month point anyway so another FISH should be done soon to confirm status.  I would do that before doing anything else.  These tests are not as accurate as one might think, so re-testing is often a good idea.

If your next FISH test shows no improvement and you need to change drugs, you could try any of the other drugs such as Tasigna, Bosutinib, Iclusig (Ponatinib), or even Gleevec.  Also, if your next FISH does not improve you should have a Kinase Mutation Test done to see if you have a kinase mutation, and this would suggest which drug might work best against that specific mutation. 

[blueheron]

Just got some new numbers - FISH is 1.6%, PCR is 19%. We're going to repeat the PCR with a different lab, just gave sample today, will know in a few days. So some very good news about the FISH result!

[johnny99]

Hi there!

At my 6 months and 9 months test I also had low FISH but high PCR, but I had to lower my dose due to low blood counts. Have you been on 100mg sprycel uninterrupted, without missing a single dose?

[blueheron]

Hi Johnny,

I haven't missed a dose since starting Sprycel last July. I wonder if it's some absorbtion issue.

[Trey]

You are close to CCyR in under one year so you are doing fine.  This is a good example of why we should not use raw PCR numbers above CCyR for determining response to drug therapy.  PCR is fairly inaccurate above CCyR, so FISH and BMB are better indicators than PCR until CCyR is achieved.