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PCR monster jumped out at me

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#1 dchicago



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Posted 21 January 2018 - 03:40 PM

and I'm scared and losing sleep on it...


Long story short: Reduced Gleevec dosage from 400mg to 300mg about 9 months ago.  Still undetected at the end of Oct 2017.  Here comes Jan., my PCR jumped to 0.33% IS  :o .  From undetected to losing MMR in about 10 weeks!?


Some more details: Dx Dec 2013.  Started 400mg Gleevec.  Very quickly, went in and out of undetected between Jun-Dec 2014.  Then, undetected for more than 2 years and convinced Dr to reduced dosage to 300mg in March 2017.  June 2017 got 0.0002% IS.  Dr wanted to get back to 400mg immediately, but I held off.  Retested in July and Oct 2017; both came back negative while staying on 300mg.  Just got the Jan 2018 report of 0.33%!!  Again, Dr wants me to go back to 400mg.  I will definitely go for a retest as soon as I can, but in the mean time, not sure if I want to go back to 400mg or to stick with 300mg.


My white cell count and red cell count had always been a little below normal since treatment.  Co-incidentally, I got a completely normal CBC in Jan.  Not sure if it is a bad or good indication of the dosage reduction.


The logical side of me is convinced the PCR jump is a lab error; however, the emotional side is keeping me awake at night.  What if the test is right?  No longer MMR?  What if PCR doesn't come back down if I delay getting back on 400mg?


Last time when I asked for a retest, she told me I have to wait a month between each PCR test.  Not sure if it is more of an insurance issue than a medical guideline.  Either way, it's going to be a long month...


#2 Pin


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Posted 21 January 2018 - 10:28 PM

That sounds wrong to me - can you convince them to redo the test sooner than a month?

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.


2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14

#3 r06ue1


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Posted 22 January 2018 - 06:35 AM

If it were me, I'd go back to 400 mg just to be on the safe side and wait for the results of the retest, likely a lab error.

08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%



Taking Imatinib 400 mg

#4 kat73


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Posted 22 January 2018 - 11:23 AM

dchicago - First, I will tell you that I feel for you, and know what you're going through.  You will find the coping mechanisms you need to get through the wait, because you must.  Even if you decided to just stay asleep for a month, the time will pass and the test will come and you will have an answer.  Anything you can do to distract your mind will be helpful.


I don't know what side effects you were dealing with at 400, but if they were bearable, I think I agree that it might give you peace of mind to go back on 400 until you get the next PCR.  Here's my thinking:  The most anxiety-producing fact is the bad number - is it real or is it a fluke?  If it truly means a loss of response to the Gleevec, then 400 won't make any difference and you'll "flunk" the re-test anyway.  Then you'll know:  No sense going for 600 or 800 of a drug that isn't working for me but is causing me problems; it's time to change drugs.  On the other hand, if the .3 was a fluke, and you have a much better number after a month of 400, you'll know:  It may have been a fluke, or it could mean I need 400, so I should stay here awhile and then re-try reducing to 300 in the future.  Or I could still try a new drug, anyway. 


I may be missing some important points (like, maybe you've already tried other drugs), but I hope this helps.  You will get back to us?

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 dchicago



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Posted 22 January 2018 - 10:40 PM

Thanks for your replies and support.


The main reason I don't want to go back to 400mg before the retest is that I don't want to add another variable to the equation.  If I'm still detectable on my next test, I would know 300mg is not enough for me.  I will definitely have to stick with 400mg or consider switching drug.  However, if my next test is undetectable after I'm back on 400mg, I won't be sure if the 0.33% test was wrong or 400mg is working well for me.


Confirmed with Dr about the 1 month wait between tests.  She didn't object when I suggested staying on 300mg until the retest.  The lab takes about 2 weeks to report the result.  The good thing about this is that it has been more than 2 weeks since my last blood draw.  I only have to wait another 2 weeks to get tested.  I probably will get back on 400mg right after that.  However, I would have to wait another 2 weeks before knowing the result.  I know, kat73.  I will have to find a way to deal with the wait. 


Thanks again for listening and your support.

#6 jmoorhou


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Posted 22 January 2018 - 11:06 PM

Dchicago, I don't think it's that black/white an issue. You just need to increase to 400 every day or every other day for awhile.. Same thing happened to me, I went downto 200 mg gleevec for four months, got the spleen pain back..went back to 400 quickly....my bar/abl did rise...but went back down after I increased dosage. Hope this helps.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

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