31 replies to this topic

[CML Steve]

Hi everyone! Dx in early 2009. PCRU after 6 months. Been there until most recent test which was 0.032. Anyone else been PCRU for years to have it pop up again? Not sure what to think. Follow up test in 3 months. Thanks, best to you all!!

[Buzzm1]

Hi everyone! Dx in early 2009. PCRU after 6 months. Been there until most recent test which was 0.032. Anyone else been PCRU for years to have it pop up again? Not sure what to think. Follow up test in 3 months. Thanks, best to you all!!

Stephen Klaus, are you still on a TKI?

 

those that have stopped taking TKI's often experience loss of PCRU, without losing MMR

 

i.e. ... STIM2 http://bit.ly/1IbwZuh 2011

treated only with imatinib; DMR of at least 2 years duration

76 of 124 (61%) remained treatment free ... However 41 experienced a BCR-ABL RQ-PCR fluctuation without clear molecular relapse. In this so-called-fluctuation group of patients, 7 were found positive once, 6 twice, 12 patients between 3 and 5 times, 10 patients between 6 and 10 times and 6 patients more than 10 times confirming that BCR-ABL reappearance does not mean automatically clinical relapse. (clinical relapse is defined as loss of MMR)

 

wait for the next test for confirmation

[CML Steve]

Thanks, yes been on 400 G ever since

[scuba]

Hi everyone! Dx in early 2009. PCRU after 6 months. Been there until most recent test which was 0.032. Anyone else been PCRU for years to have it pop up again? Not sure what to think. Follow up test in 3 months. Thanks, best to you all!!

 

Being PCRU for such a long time on 400mg Gleevec and then to see a significant jump could mean either you are losing response (new CML clone has emerged*) or the test is not correct (they mixed your sample with someone else's). I think the latter is more likely.

 

Consider having  re-test taken now (not in three months) in order to verify the latest test. There is a good chance the new test will come back as PCRU and the current test is erroneous. If the new test confirms loss of PCRU, consider switching drugs to a low dose alternative.

 

But I do believe this is a testing snafu and not something more serious.

[missjoy]

Hi everyone! Dx in early 2009. PCRU after 6 months. Been there until most recent test which was 0.032. Anyone else been PCRU for years to have it pop up again? Not sure what to think. Follow up test in 3 months. Thanks, best to you all!!

I wonder if eosinophils and basophils are somewhat related to the bar abl. I noticed when bcr abl are undetectable, both eosinophils and basophils are zero. When bcr abl is slightly positive, eosinophils and basophils are not zero still within normal range though. Not sure it is just an isolated case.

Has anyone noticed this?

[rcase13]

I just reached PCRU today. Yeah Me!

 

My numbers were:

 

Absolute Eosinophils 0.20 10*3/uL (After MMR my Eosinophils have always been between 0.10 and 0.30)

Absolute Basophils 0.10 10*3/uL (After MMR my Basophils have always been between 0.00 and 0.10)

[scuba]

 

I just reached PCRU today. Yeah Me!

 

My numbers were:

 

Absolute Eosinophils 0.20 10*3/uL (After MMR my Eosinophils have always been between 0.10 and 0.30)

Absolute Basophils 0.10 10*3/uL (After MMR my Basophils have always been between 0.00 and 0.10)

 

 

Yeah you!!

[Buzzm1]

 

I just reached PCRU today. Yeah Me!

 

My numbers were:

 

Absolute Eosinophils 0.20 10*3/uL (After MMR my Eosinophils have always been between 0.10 and 0.30)

Absolute Basophils 0.10 10*3/uL (After MMR my Basophils have always been between 0.00 and 0.10)

 

 

Congratulations on your PCRU rcase13!!

[gerry]

Congratulations rcase13. :-)

[gerry]

I know of it popping up for someone after 9 years pcru at low levels over two tests, it returned to pcru at the following test. Plus as the others have said can just be an incorrect test result. Like scuba I would get the test redone sooner just to ease my mind.

[Melanie]

 

I just reached PCRU today. Yeah Me!

 

My numbers were:

 

Absolute Eosinophils 0.20 10*3/uL (After MMR my Eosinophils have always been between 0.10 and 0.30)

Absolute Basophils 0.10 10*3/uL (After MMR my Basophils have always been between 0.00 and 0.10)

 

Congrats to you! Happy dance!

[missjoy]

Thank rcase for check your numbers. Congratulations! By the way, is PCRU equal a 0.001% or 0.0001%. I am confused.

[missjoy]

I heard an oncologist say patients who do not reach PCRU but slightly positive could stop TKI as well. I was surprised to hear that. Has anyone heard or read anything regarding that?

[Buzzm1]

Thank rcase for check your numbers. Congratulations! By the way, is PCRU equal a 0.001% or 0.0001%. I am confused.

PCRU is undetectable: nada, nothing, zero, zilch, nil

[Trey]

Hi everyone! Dx in early 2009. PCRU after 6 months. Been there until most recent test which was 0.032. Anyone else been PCRU for years to have it pop up again? Not sure what to think. Follow up test in 3 months. Thanks, best to you all!!

 

Still very low so not nearly a loss of response issue.  Could be a lab issue.  Retest and see what happens. 

[CML Steve]

Thanks all. First real surprise since starting treatment 7 years ago. Appreciate the comments and support!!

[CallMeLucky]

Do you mind me asking what lab out of curiosity?

While I have not been pcru consistently as long as you I have had runs of pcru only to have it pop up. My last run was 18 months and then it just jumped up to where you.

[rcase13]

Thank rcase for check your numbers. Congratulations! By the way, is PCRU equal a 0.001% or 0.0001%. I am confused.

I am not really sure. He said 400,000 transcripts and no bcr-abl found. All I heard was undetectable and I shut off after that.

After 7 years PCRU I would think that would be cured. How does a stem cell sit there silent for 7 years and then just wake up. I will never understand this disease? Hopefully the Gleevec will do it's job and get you back to PCRU quickly. So you can get back to living without thinking about CML.

[Buzzm1]

I heard an oncologist say patients who do not reach PCRU but slightly positive could stop TKI as well. I was surprised to hear that. Has anyone heard or read anything regarding that?

missjoy, ideally all labs would test and report PCR BCR-ABL to MR5 I.S. .001; it then would require a two log increase to lose MMR ( defined as relapse); 

if you had a very low PCR reading for a long enough time, the odds of successfully stopping TKI could be in your favor.

 

Scuba has tried it, beginning with an MD Anderson PCR reading of .01,  which they allege to be equivalent to I.S. .003

(MD Anderson has their own scale)

[scuba]

missjoy, ideally all labs would test and report PCR BCR-ABL to MR5 I.S. .001; it then would require a two log increase to lose MMR ( defined as relapse); 

if you had a very low PCR reading for a long enough time, the odds of successfully stopping TKI could be in your favor.

 

Scuba has tried it, beginning with an MD Anderson PCR reading of .01,  which they allege to be equivalent to I.S. .003

(MD Anderson has their own scale)

 

My levels were less than 0.01 (M.D. Anderson scale) and I remained below this level for six months (two testing cycles) before attempting cessation. I was able to stay off Sprycel (20mg) for nine months before re-starting. Although I didn't have to restart, the fact my PCR went above 0.01 and went as high as 0.08 suggested to me that CML was slowly growing back although not in a straight line increase. I maintained zero blasts during this time (see vitamin D thread) which led my oncologist to suggest I keep going (i.e. with cessation) to see if my levels would drop back naturally (indicating a renewed immune response). I was still below the MMR threshold (0.28 M.D. Anderson scale). But, I decided to resume my 20mg sprycel to test that indeed my PCR would drop back.

 

And It did - quickly.

 

After just two months, my levels went below 0.01% again where it remains currently. I will try cessation again - but probably one month on and one month off. Or maybe just not take the drug during the summer so I can tan better. I feel I can go months without TKI before a measurable increase occurs.

 

I have a theory that continued TKI use suppresses the blood making system (including stem cells) - more for some patients than others, but definitely suppresses mine. When stopping a TKI, perhaps more leukemic stem cells come out of hibernation and begin to divide re-populate the CML cell line - then by re-starting my TKI they (dividing LSC's) get nailed. Maybe this can accelerate the LSC depletion? Just a wild guess on my part, but seems reasonable. Any way, a day without a TKI is a great day. I was intrigued how quickly my PCR dropped back below 0.01% after re-start on my low dose Sprycel.