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CML counts going up on Sprycell

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Good Morning Members

I was diagnosed with the Philadelphia Syndrome of CML last December, my numbers were extremely high and they were falling so great and then this last visit a yellow flag thrown, the numbers are increasing again. I take 100 mg Sprycell at 6 am daily. Has anyone experienced this and what am i going to experience.

How much was your pcr level and how much iis it now?

I believe those levels were down to .030 and in 4 weeks up to 2.45, I am still new to the terms and levels but this sounds right.

Are you informed for the drugs and food interactions? Did you eat something that you should 't? Have you taken a drug that you shouldn't?

The only food i avoid is grapefruit not aware of any other items to avoid.

 

Did you talk with your doctor? Maybe you have to try another tki! Maybe sprycel is not for you!

I have switched from 100mg Dasatinib to Nilotinib. There are a couple of threads in the forum where people have switched from Dasatinib even though tolerating it well.

I would definitely get a retest. It could be a lab error but if confirmed then mutstion testing to decide which tki to switch to is probably the next logical step.

My first result (3month) on Nilotinib was promising and numbers are trending down again.

It is rare but Dasatinib does not work for everyone. You can still find a good tki. Hope this helps and take care.

Wendi,

Your numbers are suspect. I think it may be lab error or misreporting of some kind.

Ask for an immediate re-test. Also - at 2.45 (if it were real), you would see CML cells under the microscope, which is revealed during a FISH test. ASK for a FISH test in addition to a PCR test.

FISH = counts actual CML cells under the microscope. Out of 200 cells counted, how many are CML - which yields a percentage of 0 - 100%. At diagnosis most people have 100%. During treatment most patients have FISH fall to zero.

PCR = an approximation of bcr-abl protein transcripts (molecular) compared to a standard gene (abl typically) expressed as a percentage. Essentially it is a measure of CML activity at the molecular level and only truly useful after FISH falls to zero. bcr-abl is what CML cells produce. Once cml cells fall below a threshold, the PCR test no longer can detect bcr-abl protein (i.e. PCR < ~0.01%).

Get a re-test and then report here. We can better guide you once we know if your 'status' is confirmed. I suspect lab error. It happens. And it's unfortunate when it does because of the anxiety it produces.

Thank you all retest is scheduled with a new Bone Marrow Biopsy this month.