6 replies to this topic

[triciad]

I am more of a "lurker" these days on the CML forum than a participant but I need some advice.  I have been a turtle since March 2005. 

 

Gleevec for 1 year (didn't hit the desired numbers).  Clinical trial on Sprycel for 2 1/2 years (pleural effusion issues).  Tasigna 800mg since October 2008 and reduced to 600mg just last year.

 

My lowest PCR ever in the last 11 years was .035.  I have fluctuated up and down for so many years that I've come to the conclusion that it's my "zero". 

 

Here are my results the last few years:  

2/14 - .11

3/14 - .095

4/14 - .12 (bone marrow biopsy - cyto negative)

6/14 - .13

7/14 - .068

9/14 - .05

12/14 - .048

3/15 - .047

6/15 - .035 (lowered dose to 600mg - side effects improved)

9/15 - .044

12/15 - .037

4/16 - .036

8/16 - .069

10/16 - .16

 

I just had a blood draw today for another mutation test.  I had one in 2012 that came back negative but my doctor said the lab they used back then may not have been reliable because all their mutation tests were coming back negative...which didn't seem accurate.  She noticed that I had a positive mutation result early on. 

 

I really don't stress these days since it has been over 11 years of fighting the good fight and I'm very happy with Tasigna and the few side effects I battle.  I just haven't seen this big of a jump in a short period of time. 

 

Do you think this is something I should be concerned about?  Should I ask to go back to 800mg?  I really don't want to increase my dose since 600mg is the recommended starting dose.  I also don't want to switch meds but I will if it is necessary.  I guess my remaining two options are Iclusig and Bosulif.  Can anyone provide feedback on their results and side effects?  Any advice would be greatly appreciated.

 

Blessings,

Tricia

 

[Lucas]

Hi, tricia. First of all, i would wait for the next result (maybe have another test in a month), because your result is within the margin of error of the PCR test. Second, i would check for possible interactions and adherence to the treatment (are you taking your pills everyday?). You said that you had a positive mutation early on treatment. it's important to know if it's a tasigna resintant mutation and, more important, to know what tki will suit the best for you (trey will say that at your level it's hard to find a mutation). Maybe that's just a little blip and soon you'll get back to where you were. fingers crossed. good luck!

[acl]

I am more of a "lurker" these days on the CML forum than a participant but I need some advice.  I have been a turtle since March 2005. 

 

Gleevec for 1 year (didn't hit the desired numbers).  Clinical trial on Sprycel for 2 1/2 years (pleural effusion issues).  Tasigna 800mg since October 2008 and reduced to 600mg just last year.

 

My lowest PCR ever in the last 11 years was .035.  I have fluctuated up and down for so many years that I've come to the conclusion that it's my "zero". 

 

Here are my results the last few years:  

2/14 - .11

3/14 - .095

4/14 - .12 (bone marrow biopsy - cyto negative)

6/14 - .13

7/14 - .068

9/14 - .05

12/14 - .048

3/15 - .047

6/15 - .035 (lowered dose to 600mg - side effects improved)

9/15 - .044

12/15 - .037

4/16 - .036

8/16 - .069

10/16 - .16

 

I just had a blood draw today for another mutation test.  I had one in 2012 that came back negative but my doctor said the lab they used back then may not have been reliable because all their mutation tests were coming back negative...which didn't seem accurate.  She noticed that I had a positive mutation result early on. 

 

I really don't stress these days since it has been over 11 years of fighting the good fight and I'm very happy with Tasigna and the few side effects I battle.  I just haven't seen this big of a jump in a short period of time. 

 

Do you think this is something I should be concerned about?  Should I ask to go back to 800mg?  I really don't want to increase my dose since 600mg is the recommended starting dose.  I also don't want to switch meds but I will if it is necessary.  I guess my remaining two options are Iclusig and Bosulif.  Can anyone provide feedback on their results and side effects?  Any advice would be greatly appreciated.

 

Blessings,

Tricia

Hi Tricia, I am a turtle like you. My lowest PCR in the last 29 months was 0.07%. I have fluctuated up and down.

 

acl

[Melanie]

Hi Tricia and fellow turtle. I too have seen a recent upwards trend. As previously said, you are in the margin of error and as long as you've been compliant with your dosage, then monitoring with another test in a month or two should be fine. Hopefully, your mutation test will come back negative. Blessings to you and let us know your results.

[Trey]

What was the earlier mutation?

[triciad]

Trey-

I will inquire about my earlier mutation when I get the results from this new one.  Hopefully soon!

 

Thank you all!

[RayT]

Hi, Tricia! Fellow turtle here. Dx'd in Jan 2014, finally hit PCRU in Jun of this year, but 0.07% & 0.04% since then. As long as you've got "0" left of the decimal point, you're winning the war. You've got zeros on both sides of the decimal, so you're so close that it really doesn't matter. Don't sweat the small stuff. :-)