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#1 snowbear

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Posted 26 February 2016 - 12:35 PM

I just got my BCR-ABL results :  2.483%

 

In early December, it was 2.501%

 

Not quite 3 months in between, but still...shouldn't I have made better progress?  I'm nearly 15 months in and still above 1%.  I know of others who were diagnosed and started Gleevec within days of me and even with a higher starting % and they've hit MMR.  

 

Not very encouraged right now. :(



#2 kat73

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Posted 26 February 2016 - 03:09 PM

Snowbear - A couple of things.  It isn't where you want to be, but it's still a low number.  My first two years they didn't have International Standard, and I've tried a billion ways to Sunday trying to go back and re-math my old numbers to see where I was.  I haven't been successful, but I think I was not far off from you at 15 months.  I may not have gotten to the other side of the decimal point until almost 22 months.  And now (6-1/2 yrs later) I've gotten one undetectable and one almost.  So, you may just be a turtle.  The second thing is, the gold standard still is CCyR and not MMR.  Just because a lot of the cars are whizzing past in the other lanes doesn't change what the speed limit sign says, and if you're going that then it only SEEMS like you "should" be going faster.  Do you have CCyR?  If so, then I believe the experts still think that means zero chance of progression.  Not tons of fun, but safe.  Don't pay any attention to those other cars!


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.


#3 snowbear

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Posted 26 February 2016 - 03:17 PM

I lost CCyr in December (if I really had it at all).  I had one 0% FISH, but my BCR was around 8% at the time which didn't seem right.  



#4 Trey

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Posted 26 February 2016 - 07:36 PM

Maybe you should have FISH done again to check for CCyR status.  You could also consider another drug switch.



#5 kat73

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Posted 27 February 2016 - 01:15 PM

Yes, get a FISH and report back, Snowbear!  I noticed on my two reports that it doesn't have to be absolute 0.0 to count as a "negative FISH."  One of mine was true 0 and one was 0.2% and was marked "negative."  The definition was listed as < 1% nuclei.


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.


#6 Melanie

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Posted 27 February 2016 - 04:50 PM

So sorry you're feeling frustrated Snowbear. As Kat mentioned, CCyR is the high bar to reach. You say you lost it in Dec, but not by much. Surprised they didn't repeat the fish. If it's any consolation to you, I lost CCyR after 9 months. We're hoping for negative on the next one. Typically, they stop doing fish after you reach CCyR, but they kept testing me. Maybe, had they not tested, I would never even know I lost it, since my PCR stayed stable. My Onc says they see this happen once in a while and not to stress. As for the time line, it took me almost 4 years to get to my first CCyR. I'm very close to MMR now and hoping my test next month shows negative fish and MMR. That would be about my 5 year mark and ready to do a happy dance. Hang in there Snowbear! Keep us updated!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#7 gerry

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Posted 27 February 2016 - 05:58 PM

So sorry you're feeling frustrated Snowbear. As Kat mentioned, CCyR is the high bar to reach. You say you lost it in Dec, but not by much. Surprised they didn't repeat the fish. If it's any consolation to you, I lost CCyR after 9 months. We're hoping for negative on the next one. Typically, they stop doing fish after you reach CCyR, but they kept testing me. Maybe, had they not tested, I would never even know I lost it, since my PCR stayed stable. My Onc says they see this happen once in a while and not to stress. As for the time line, it took me almost 4 years to get to my first CCyR. I'm very close to MMR now and hoping my test next month shows negative fish and MMR. That would be about my 5 year mark and ready to do a happy dance. Hang in there Snowbear! Keep us updated!

Let us know when you hit it, we'll all be on the dance floor joining in your happy dance.  :)






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