4 replies to this topic

[tiouki]

Hi all,

I was diagnosed almost 2 years ago, and even though i was not very active on the forum during last year, i cannot resist the pleasure to share some good news with you.

Like some of you, my PCR had increased, so all the stress of the first months came back. I knew that most of the time numbers are fluctuating a bit but since the MMR had been lost i got nervous. Finally it was 0.054% IS last week so it keeps going down, slowly.

Here are my numbers :

diagnosed : 62% (with high WBC and Sokal score)

2.5 months : 1.6%

5 months :    0.27%

9 months :    0.16%

12 months :  0.15% (frustration begins...)

15 months :  0.075%

18 months :  0.15% (stress!)

21 months : 0.054%

Very glad to be treated with this drug, i'm having no side effects, and i live a very normal young adult life.

Good luck to all of you!
Cheers
Pierre

[Trey]

That PCR plateau (as I call it) occurs fairly often at the 12 - 18 month point with TKI drugs.  The reason is the drug initially kills off the low level (and easy to kill) leukemic WBCs so the initial drop is precipitous.  After a while the drug is trying to kill off the higher level and harder to kill leukemic cells, so the PCRs can enter a plateau phase for a while and may bounce up and down slightly.  The high level leukemic stem cells also try to stop the process by kicking into higher gear, but they can only do this for a certain period of time. These higher level leukemic cells can take some time to get under control.  Then a next stair-step downward often occurs.  I have seen this occur often.  For some the plateau can be short, and for others it can be quite long.  And after the 2 year point assuming MMR or better is achieved the likelihood of losing response is greatly reduced, although not zero.

[Ray99]

My PCR records are very similar to yours.  They came down very fast and then flatten out, hovering just above 0.1%.  My 15 month PCR test is coming next week. 

Your great results give me some hope that mine will do the same, go below MMR level.

As Trey said, he has seen this trend happened to several people.  I just hope to add one zero after the decimal point.

[TeddyB]

Glad to see your pcr dropped on the last test tiouki

Ray: Waiting for my 15month pcr myself, will get it in a few weeks, let us know how it goes.

[Tedsey]

From one dx with high WBC and high Sokol score to another, CONGRATULATIONS!  Always hoping the best for you!  Thanks for sharing your results.

Tedsey