4 replies to this topic

[Antilogical]

The Mother-of-All-Stem-Cells is back.

My PCR results have been UNDETECTED since 12/2012.  A BMB in Feb. confirmed I was negative.  As a result, my dose of Gleevec was cut by half in March, as my labs are below normal and I need a knee replacement - now scheduled for June.

Almost as an afterthought, I got a PCR test 2 weeks ago.  POSITIVE.  Again.

Quantitative real-time PCR analysis for the BCR/ABL fusion transcript is

POSITIVE at a relative level of 0.00462% K562 expression [BCR/ABL major (CML) breakpoint region].

SHE-DEVIL!

[Susan61]

Hi:  How low were your labs that they cut you back on the Gleevec?  I would get the knee replacement done, and then maybe you can up your dose again on the Gleevec.  You do not have to be PCRU to stay stable, like we have said there are so many people who have not gotten to PCRU yet, and doing very well.  Take care of the knee for now.

I am sure you will get a lot more responses to your post.

[Antilogical]

Thanks for the response.  I guess I just got "cocky", thinking that all was well and I could get on with my life.  Not so.  I know that this is not an emergency - I'm just taken aback.  The plan is for me to get my knee fixed (on 6/10), then I will go back to the standard dose of 400mg of Gleevec.  I hate it when reality sets in.....

[GerryL]

We've always got to assume that the CML is floating around in the blood somewhere, even when your tests come back at undetectable. The current testing process isn't able to go low enough to say someone is definitely cured.

Wishing you all the best with your knee operation and hopefully once you restart the 400mg you'll be quickly back at your undetectable status.

[Trey]

I did not lower my dosage to 200mg until 3 years continuous PCRU.  I think that was about right.  The leukemic cells must be driven down far below PCRU to be under tight control.  At PCRU the 1 million remaining leukemic cells are still fairly numerous.