4 replies to this topic

[Jerry.s]

Hello everyone 

 

I was DX September 2014 and i would hope to be undetected by now but I still haven't achieved  getting under 1% my Onc doesn't want me to worry at this point unless I go up.  I know there is a better success rate if i hit 1% goal within 24 months of DX and thats pretty much long gone. I was on gleevec until August 2016 and now i am on Sprycel and I still haven't gone under 1%.  I am wondering if i should start looking for a specialist ?  My Onc said he didn't think so at this time, he said he wants me to be on spycel for a full year before we decide to change to another TKI unless my numbers change drastically. 

 

I want to know anyone opinion on this matter specially those of you who call themselves turtles good and bad experiences ?

 

 

BCR-ABL1/ABL1  1.87    on  10/2/2014

BCR-ABL1/ABL1  .642.   on 12/3/2014

BCR-ABL1/ABL1   .016.    on 3/12/2015

BCR-ABL1/ABL1  .011.   on 5/9/2015

BCR-ABL1/ABL1  .012.  on 8/13/2015

BCR-ABL1/ABL1  .0068.  on 1/21/2016

BCR-ABL1/ABL1  .0097.  on 6/2/2016

Missing on for September

BCR-ABL1/ABL1  .0021   on 11/4/16  IS scale .22%

BCR-ABL1/ABL1  .0027   on 1/30/2017  IS scale .20%

 

Sorry I do not have the IS scale for all of the test 

 

 

[Trey]

You had a personal 2 log reduction within 8 months which is CCyR, and would correspond to the 1% IS goal you discussed.  I assume your PCR results are all raw numbers (not percentages) but I don't know why any lab would report that way any more.  If these are indeed raw numbers, then you have stalled out just short of MMR.  But the numbers are going in the right direction statistically.  Some patients just take longer to reach MMR and beyond, but that does not necessarily mean a poorer outcome.  I would personally stick with the Sprycel for a while longer and see what happens.  A Specialist cannot do anything for you except change drugs again.  If you want to try that after a few more months your current Onc can do that. 

[Jerry.s]

Thanks Trey I guess as long as I don't go up significantly I am ok ?

[gerry]

http://m.asheducatio...book;2014/1/234
In the TKI era, MCyR remains a significant milestone, but is perhaps considered "in transit" to CCyR. CCyR has been deemed and stands firmly as a response milestone affording critical protection against transforming disease. During the IRIS trial, early landmark analyses of imatinib-treated patients confirmed a shorter survival free of progression to accelerated or blastic phase CML for patients not achieving a CCyR both at 12 and 18 months of therapy.3 Subsequent later analyses confirmed the protection against disease progression offered by CCyR and that risk of competing events rose for those achieving CCyR later in treatment.

[Trey]

Thanks Trey I guess as long as I don't go up significantly I am ok ?

Right.  I would expect your PCRs will continue to trend downward.