I was diagnosed 18 months ago and my recent PCR qualitative test revealed nothing. No BCR ABL.
Is this possible?
The test was done within the 48 tob72 hour window.
PCR question
Started by
Kali
, Apr 22 2016 05:25 PM
17 replies to this topic
#1
Kali
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Posted 22 April 2016 - 05:25 PM
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#2
gerry
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Posted 22 April 2016 - 07:53 PM
Can depend how early you were diagnosed. What was your previous reading?
#3
Kali
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Posted 22 April 2016 - 08:38 PM
My previous reading 3 months ago was 0.0092
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#4
rcase13
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Posted 22 April 2016 - 08:48 PM
It's possible. I reached PCRU at 18 months. I was 0.01% for the last 4 tests.
Now let's just hope we can hold it that way!
Now let's just hope we can hold it that way!
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg
Cancer Sucks!
#5
Buzzm1
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Posted 22 April 2016 - 09:03 PM
I was diagnosed June 2014. My Pcr tests have gone well. In 3 months, 0.106. The rest of the numbers are 0.044, 0.066, 0.138, 0.135. All are IS.
My previous reading 3 months ago was 0.0092
Yes Kali, you have apparently reached undetectable. Congratulations! ... wishing you continued good luck.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
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#6
Kali
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Posted 22 April 2016 - 10:28 PM
Thanks for feedback. I am happy to know that PCRU can happen at this point. I didn't know if it was possible and didn't want to get my hopes up. Now I am encouraged! I hope it lasts too.
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#7
tiredblood
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Posted 23 April 2016 - 10:24 PM
Congrats, Kali. I'll be glad when researchers figure out why some reach PCRU earlier than others. When this happens, maybe an even more tailored treatment can be developed for patients. I've reached PCRU twice within three months (took a break for a BMB), but am reluctant to consider myself any more out of the woods than the turtles. I really think the turtles should not beat themselves up about a slower response. Does this mean I'm a fox (as in quick as a...) in the CML world? If so, I'm glad I can be one somewhere. 
#8
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Posted 24 April 2016 - 08:10 AM
I think CML is what it is rather we respond faster or slower. I will be happy too if they figure out more specifics on this disease. I know I need to keep hitting this disease hard with consistent medication at this point in time.
My doctor is willing to entertain cessation but not dose reduction if there is a time in the far future that I become a candidate to do that.
His concern with dose reduction is that the stem cells will find a way to outsmart the drug and ramp up again.
My doctor is willing to entertain cessation but not dose reduction if there is a time in the far future that I become a candidate to do that.
His concern with dose reduction is that the stem cells will find a way to outsmart the drug and ramp up again.
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#9
Trey
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Posted 24 April 2016 - 09:24 AM
Your Onc is out of date on the dose reduction issue. That story never made any sense, but has been abandoned by almost all Oncs who know what they are doing. I would stay at full dose for another year and then look at dose reduction. PCRU is not an endpoint, but rather a milestone along the way to "near zero".
You have done very well.
Edited by Trey, 24 April 2016 - 09:24 AM.
#10
Kali
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Posted 24 April 2016 - 12:18 PM
Thank you Trey for your explanation. It is frustrating because I left one onc who said I will be on full dose Sprycel the rest of my life no exceptions as long as he is my onc. So I found a new onc who is up to date on drugs in the pipeline with less side effects, is open to cessation and believes there will be a cure in my lifetime. (I am 61). Also says we live a normal lifespan.
He is so much more knowledgeable than the onc I had.
If I stay PCRU I will do what u suggest in a year and revisit the idea. Perhaps even get a second opinion from a CML specialist at that point.
One step at a time.Correct?
He is so much more knowledgeable than the onc I had.
If I stay PCRU I will do what u suggest in a year and revisit the idea. Perhaps even get a second opinion from a CML specialist at that point.
One step at a time.Correct?
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#11
gerry
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Posted 24 April 2016 - 04:46 PM
My doc originally was keep hitting it hard when I first started seeing him. He was also my second doc. I had conversations with him about reducing and stopping. After a year PCRU he let me lower my dose to 300mg. Side effects were better, but new ones were coming in for me. I started to get the brain fog and some joint pain. He agreed that I could stop after 25 months of PCRU. If you are happy with your doc keep having conversations with him. If he is open to stopping he may also come round to dose reduction.
#12
Kali
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Posted 24 April 2016 - 09:45 PM
Thank you, Gerry, for the suggestion. My onc said he works for me and anything I want him to research he will. So you may be right. As he sees that some of the CML specialists are doing dose reduction then he will hopefully be open to considering it in the future.
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#13
hannibellemo
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Posted 25 April 2016 - 02:32 PM
Kali,
Many of us are on reduced dosage due to side effects. I've been on 50mg. of Sprycel since 2012 due to pleural effusion. If what your onc said were true I'd most likely be in trouble by now. My rule of thumb is the least amount of drug necessary to keep CML at bay. 
Pat
"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>
#14
Kali
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Posted 25 April 2016 - 05:58 PM
Thanks for your reply. It is reassuring to hear about others doing so well on dose reduction. It makes the future more hopeful. It would be nice to reduce dosage to minimize long term side effects.
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#15
Kali
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Posted 18 June 2016 - 11:10 AM
I have a few more questions on this topic. Sorry it has taken me awhile to get back. I have been extremely busy and don't know is I am coming or going sometimes with the busyness!!
The Lab my onc uses is ARUP. Is that a good one?
The reason I ask is because since I came to him in October here is how the results go with timing:
10/7/2015 qualitative: Blood Collected on 10/7 at 3:45 pm and Resulted on 10/13 at 3:26 pm. Detected
10/7/2015 quantitative: Blood Collected on 10/7 at 3:45 pm and Resulted on 10/12 at 5:47 pm. Nothing detected The lab said the difference was likely due to test sensitivity.
I had my once redo the test:
10/20/2015 qualitative: Blood Collected on 10/20 at 11:47 am and Resulted on 10/23 at 3:47 pm. Detected.
10/20/2015 quantitative: Blood Collected on 10/20 at 11:47 am and Resulted on 10/25 at 10:15 pm. RTqPCR 0.0126%
1/4/2016 qualitative: Blood Collected on 1/4 at 11:20 am and Resulted on 1/7 at 7:19 pm. Detected
1/4/2016 quantitive: Blood Collected on 1/4 at 11:20 am and Resulted on 1/10 at 5:34 pm. RTqPCR 0.0092%
4/11/2016 qualitative:Blood Collected on 4/11 at 2:05 pm and Resulted on 4/15 at 6:31 pm. No evidence of major p210 type or minor p190 type
My question is if these tests are happening timely. When I started going to this once in Oct. 2015, my readings from the previous one were 0.1
I come up on my 2 year anniversary of diagnosis at the end of June.
I asked my current one to check on accuracy of my tests and communicated with the pathologist/hematologist at our hospital who looked everything over. He said they are fine, but ARUP is only doing BCR?ABL qualitative and reflex to quantitive.
He also said they usually send CML patients blood to Clarinet for P210 quantitive and FISH for BCR/ABL
I am totally confused. Is ARUP doing my blood work correctly or is Clarient doing this correctly?
I come up in a couple of weeks for my next visit and want to get all of this straightened out,
I love the idea about reduction of meds in another year if may numbers stay undetected, but I want to be confident in my Lab work before considering this idea.
Is there something I need to ask my current onc about the lab work to ensure it is at the right lab and being done correctly and timely?Or is this current path with ARUP going fine?
Please advise as this is frustrating, but maybe I am the one lacking understanding on this matter
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#16
Kali
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Posted 18 June 2016 - 11:15 AM
Please excuse the misspelled words on the previous post. I am trying to type this in a hurry 
I forgot to mention that the pathologist did say the very first test with ARUP was possibly not as accurate due to diminished sample.
But, he said all the other ones are fine.
But, if Clarinet just does qualitative and FISH, it doesn't seem that will meet my needs at this point with where I am at with numbers. Correct?
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#17
Kali
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Posted 18 June 2016 - 01:10 PM
Actually I double checked my notes from the head pathologist and he said Clarient does quantitative and Fish.
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#18
Trey
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Posted 18 June 2016 - 01:38 PM
ARUP is a major lab and a good one. Plus, with that many tests they would very likely be accurate. The trends also match. Qualitative (Qual) PCR is more sensitive than quantitative (Quant) so they often report positive longer than Quant PCRs. Your Quals were "detected" until the last one which was "undetected". The Quants are flatlined at near -4.5 to -5 log which should report as undetected in most labs.
All is great. PCRU.
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