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Need advice...please!! The yoyo game - out of MMR

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#1 Mayra



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Posted 11 June 2015 - 05:12 PM

It's been a few months since I last posted.  My dilemma is I've been a slow responder since I started Sprycel almost 2 1/2 years ago.

I was diagnosed 12/12. 

The following are my test results:

Current and Previous Test

2/18/2013 6.29

5/6/2013 6.49

6/26/2013 0.4602

9/18/2013 0.2056

12/3/2013 0.2906

6/18/2014  0.1395

9/10/2014 0.1546

12/8/2014 0.0974

3/9/2015 0.0690

6/5/2015 0.1593

So as you can see my numbers have been declining, stalling, raising, and then declining again.   My doctor wants to wait 6 weeks retest and then if I'm still going up change meds.  My gut tells me to change now. 

I would appreciate everyone advice.  I know it's a numbers game but, I'm a little freaked out.    The only explanation to the rise in numbers is I spent two days without my meds because of a colonoscopy.  Anyone had this happen and get back to MMR?  What do you guys think?

#2 Tedsey


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Posted 11 June 2015 - 06:50 PM

It does not look like you are a slow responder.  Don't get caught up, (if you are), in the race to 0.  I think reaching MMR in 2 years is reasonable.   I experienced numbers going up and down and not moving for a while.  I even went up a log once and then back down to 0 (I do not consistently stay at 0).  Losing MMR recently must be very upsetting.  But only time will tell if it is anything.  I know, the wait will be hard, but I would agree with your doctor.  It is hard to wrap your head around it because CML seems to come fast and furious, but it is a chronic disease and moves slower than other leukemias.  I think a six week wait is reasonable (and, again, I understand it will be very difficult).  I don't think missing 2 days of meds would have had this effect, but there are more knowledgeable people here who could way in.  Hope everything in the other department came out clean.


Hang in there,


#3 Trey


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Posted 11 June 2015 - 09:32 PM

It would be reasonable to wait 6 weeks and re-test.  I would do that. 

#4 kat73


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Posted 12 June 2015 - 09:20 AM

I agree with Tedsey and Trey.  You are essentially at MMR.  I, too, reached that a little late - at about 22 months - but have gone on to go lower, slowly.  I think you tend to freak out about the slight upticks a little less as the years go by, but, yeah, I haven't figured out a way to not let it spoil my day when the numbers go slightly up.  But after that day, I willfully just don't think about it anymore.  I trust to the logic and the science and put the worry away so it doesn't ruin anything more than a day.  When you retest in six weeks you are just as likely to have a good result as not.  And if it's not what you want, it isn't going to be a huge increase - it can't be, with your history.  You can then with your doctor decide what to do next.  And there are plenty of options.  There will always be something that can be done.

Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

#5 August1


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Posted 12 June 2015 - 09:57 AM


I am on Sprycel and it took me about two years to reach MMR so I can relate to the worry around the numbers. It seems like you've been pretty consistently bouncing around MMR. It's also interesting to note that both of your upticks are only about .09% difference (in 2013 v. 2015). So the differences in the readings are small but now in 2015 your overall trend is in the right direction. So this may just be the way you respond to Sprycel. Or it could be something related to lab processing or even in your routine. For example, did you change the day of the blood draw, change labs, etc.? Retesting should be a good idea. I am sure you'll get good results. 


Take care, 

#6 JPD


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Posted 12 June 2015 - 04:58 PM

I would wait and see.  You are still MMR - and your result is within the margin of error (I think).  Take the pills, live your life. 

January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%

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