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still MMR but now tests detect "presence"

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#1 Janine


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Posted 24 October 2013 - 06:31 AM

Hi everyone,

It's been a while since I posted.  I have been MMR for 3 years, first on Gleevec then on Sprycel (had to drop Gleevec due to liver toxicity).  My doctor had finally agreed to having me stop the pills in 2014, but then, my last blood work stated "presence" even though the number was still below <0.01.  My doctor told me not to worry, that I was still MMR, but that in light of this increase, he no longer wanted me to stop the pills.  The problem is that my insurance sucks and I pay about $1,000 out of  pocket each month.  Granted I would rather be alive then take chances, but I am just wondering if this is more an issue of an over-sensitive test (false positive).  My question is whether the absence v. presence distinction means anything if I am still <0.01?  

Thanks for your feedback,


#2 scuba


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Posted 24 October 2013 - 03:07 PM

Janine - Readings below 0.01 are subject to all kinds of errors and "false positives". It is a very low level of disease detection. It is very likely that you have had no increase at all and the lab result is just noise. But it could be a real increase albeit a small one.

To be prudent, you could wait until next test and see if your level continues to rise or if you fall back into 'undetected'. Undetected, by the way, is CMR (complete molecular remission).

However - you could also do an experiment and stop taking your drug as you have planned and test again after six weeks to see if your result is the same. A low residual level (pcr < 0.1) which is MMR is emerging as a candidate for drug therapy interruption - not just CMR (PCR < 0.01).

CML is a slow disease when it is at this low level (with low blasts). The risk of dangerous disease advancement by stopping your drug is very low. In my view the risk is near zero when PCR's are below 0.01. Look at all of us who have drug interruptions for weeks and weeks (in my own case, I had a drug interruption for 3 months and not only was my PCR > 50%, my FISH was greater than 50%) with no issues whatsoever once our drug was re-introduced. In many cases disease remission resumed.

If you are comfortable with risk - then you could try the stop drug routine. But if you are uncomfortable and your doctor is not willing to guide you along, then you may have to just stay on the drug.

Hope this is useful


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein


Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.


2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"

#3 Trey


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Posted 24 October 2013 - 07:36 PM

The difference between CMR (PCRU) and what your lab calls "presence" (detected at minimal levels) can be extremely small.  Your recent PCR could also be a false positive, but I would not bet on that.  Repeat the PCR. 

This points out that PCRU is a continuum, not an absolute.  There is "barely PCRU", and "deeply PCRU", and everything in between.  It is well to be "deeply PCRU" before stopping drug therapy.  The problem is knowing when that is achieved.  The PCR showing presence should rightly cause a review of the plan to stop drug therapy.  I think too many go straight to drug cessation instead of going through drug reduction then on to cessation.  If it were me, I would try drug reduction on the path to cessation rather than direct complete cessation.  That also saves money for folks such as you as you could fill the prescription every other month. 

But your mileage may vary......

#4 pamsouth



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Posted 24 October 2013 - 10:30 PM

Scuba,  part of rational for standard dose is confusing to me. If you have to go off drug for 3 months then rerun to same drug at lower dose and are continuing to have good response. Than why don't they start us at lower dose for a period of time and increase if and when necessary?   Then to take are other counts down so low and suffer toxicity to other organs of which some May be permanent, let alone the quality if daily living.  I wonder where they come up with, you need to be at a certain response level in a certain time frame. When in fact most end taking a drug break and going on a lower dose anyhow. I might not die of cml but what is the difference if you die of toxicity due to the drug especially taking such high doses.   Kidney doc, says my kidneys are permanently damaged.  I have to be careful every drug and test I do, to slow down further damage. I recently had surgery on tooth doc said only take pain pills for 3 days, also some antibiotic  can damage kidneys. Not saying it is due to TKi as there is always the argument of which come first the chicken or the egg.  In another words there is always the argument that organ failure is due to Cml or other causes.



#5 chriskuo


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Posted 24 October 2013 - 11:26 PM

It is time to start checking for new insurance.  You should not have to pay more than $500-$600/month.

#6 Janine


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Posted 25 October 2013 - 02:09 AM

Thanks Michael, Trey and Chris for your answers.  Unfortunately I can't change insurance (tied to my employer and I can't opt-out -- I work abroad for the UN).  I have repeated the PCR, though the results are not in yet.  Assuming it hasn't gone up again, then I will talk to my Dr. about reducing.  Though I had always been under the impression that reducing was "more risky" as you could build resistance to the drug that way.  Do people reduce on Sprycel like they do on Gleevec?  Honestly I prefer stopping all together, but I will wait for a few more PCRs before I insist on it.

After my liver toxicity, I discontinued for three months (and had only at that point been MMR for a few months) and it didn't come back.  

I don't want to sound ungrateful -- these drugs saved my life-- I just feel like now all I am doing is lining the pockets of Bristol-Myers...

#7 hannibellemo


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Posted 25 October 2013 - 06:28 AM

Hi, Janine,

I went to Sprycel from Gleevec for the same reason as you, liver toxicity. I was on Sprycel for 2.5 years (MMR) when I developed pleural effusions. After those cleared up (almost 10 weeks) I went back to Sprycel at 50 mg. It took 15 months to reach MMR again (.02 IS). I would highly recommend reducing your dosage. When checking the costs I didn't see a price reduction on Sprycel through my insurance until the 50 mg. level. Retail on 50 mg. is $5,500. Wellmark pays $4,500 through their contract with the specialty pharmacy. As Trey says, your mileage may vary.

A couple of people have mentioned this - I assume you meant you've been CMR, not MMR, for a couple of years?

Good luck!




"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

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