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50mg of Sprycel

I have a question for everyone out there on Sprycel. I was on 100mg for 6+ years have been 0.000 for years. Reduced to 70mg still stayed at 0.000. Went to 50mg about 3-4 months ago and last week came back at 0.007. This is the 1st increase in 5-7 years. I feel so much better on 50 mg, but my Dr. here in Atlanta wants to know if I want to go back up 70mg??  

My question is... has anyone else experienced this after reducing the dose? Diagnosed at 48 and started with 400 mg of gleevec, now 66 and on sprycel for the past 8 years. I think I was one of the 1st to go on gleevec.... the Dr. couldn't believe it when it went to 0!!

Thanks,

Tom

 

 

 

Tom,

0.007 is indistinguishable with "undetected" both statistically and in absolute terms. You should continue with your current dose and test again in six weeks to see if there is a trend upward. Chances are very high that you will have a "zero" again or remain the same. Often labs change methods of reporting where they put a "7" in the third decimal place to indicate un-quantifiable detection. Could easily be noise or contamination.

You are actually a candidate to go off drug and test treatment free remission - i.e. zero drug. You should consider it and test if you remain in the noise.

Alternately, you could drop your dose to 20 mg which might actually have a better impact as it lessens normal immune cell suppression. Your doctor should be aware of new research showing that lower dose may actually work better for some patients rather than higher dose. It's more of a bell curve than straight line.

 

Tom, I'm 100% with Scuba that you don't want to to go back up to 70mg. I have seen this happen on the forum where a lab has a new and shiny piece of equipment which is more sensitive than the one they have been perfectly happy with for years. At that level your result is an effective zero - there was a report a few months ago that some of the general population who are not diagnosed with CML have BCR-ABL levels higher then yours! For info I am 9 months in to trying for Treatment Free Remission after 12 years on Glivec/Imatinib. 4 months after stopping the pills I got a 0.03%, which was the highest for over 5 years. Stayed off the pills and got a 0.013% 2 months later. Next test is next week.

Scuba and Alastair, thank you for your reply and all the info. I talked with my Dr and we are going to stay at 50mg and re test in 6-8 weeks. Hopefully the counts will come back to 000. It took me over a year to get my dr. to reduce the dose to 70 then to 50 so I'm not sure if I will ever get her to reduce to 20mg.

I feel so much better on 50mg I'd love to try 20. I guess I will wait and see what my next test looks like then go from there.

Thank you.

Tom

Tom, good call. As long as you don't have an upward drift in the next couple of test results, I think as Scuba says it is perfectly feasible to try 20mg. If you're results are stable below 0.01% for say the rest of this year, it is worth a discusion with your doc early in 2020.