I am joining because I have a question. 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.
Now I am considering a new onc, because he is up on a lot of the new drugs, ideas, etc. with cml.
He does not know if the lab they use is IS. Also the turnaround for results of PCR is 10 days. Are these two issues a concern? I am used to PCR results in 4 days. Otherwise, this is a well respected group of oncs. Any input is appreciated.
PCR question
Started by
Kali
, Sep 13 2015 12:55 PM
12 replies to this topic
#1
Kali
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Posted 13 September 2015 - 12:55 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
chriskuo
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Posted 13 September 2015 - 06:36 PM
A respected CML doctor should know whether the lab is IS.
What was the sequence of your PCR results? Do you have a confirmed CCR?
What is the reason you are considering changing oncs? Depending on the issue, it may not be the right time to change,
Maybe what you need is a second opinion from a highly trained specialist in an academic center.
#3
Trey
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Posted 13 September 2015 - 07:44 PM
Kali,
You have done very well. I don't think there is any reason to avoid switching Oncs if that is what you really want to do. For you it is more of a personal decision, and I would not be concerned about the PCR testing processes. Either choice would be valid.
#4
Kali
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Posted 13 September 2015 - 08:53 PM
I don't know if I am ccyr. All I know is that my blood work was normal in 3 weeks and I was 0.106 at 3 months. All my PCR tests are 3 months apart except the last two were six weeks apart. Had a bmb at diagnosis, a fish test, a flow cymetry and some other tests. WBC was 35,000 and platelets 600. PCR 147. The Philadelphia chromosome wasn't in my biopsy but everything showed I do have this. Current onc is good but says they aren't looking for a cure anymore. It is chronic and I will be on this med rest of my life with no changes unless I run into problems. New onc is much more aware of many things happening in this field and open to all of this. Also partners with his patients in everything and will research anything I want him to.
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%
#5
Kali
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Posted 13 September 2015 - 09:33 PM
Trey,
Are you saying the ten days to receive the PCR results is okay? I want to be sure they are testing it quickly and not letting it sit too long. I know their labs are accredited and meet stringent criteria. Thank you for your response.
Are you saying the ten days to receive the PCR results is okay? I want to be sure they are testing it quickly and not letting it sit too long. I know their labs are accredited and meet stringent criteria. Thank you for your response.
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%
#6
Kali
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Posted 14 September 2015 - 05:20 AM
I forgot to add my blasts were 1.5. So back to the ccyr question, I am unclear how to answer that. My current onc says the meds are working.
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
hannibellemo
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Posted 14 September 2015 - 06:39 AM
Kali,
1.0% is CCyR, you are, for all practical purposes, MMR at 1.06%. Congratulations.
I would question why the onc you want to switch to doesn't know if results at the lab he/she uses are IS. How does he/she tell patients what their results are and how they are doing?
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>
#8
Trey
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Posted 14 September 2015 - 08:43 AM
The time from PCR blood draw to having the results (turnaround time) can vary widely. This does not mean the test was not done in a timely manner, just that the paperwork takes longer to get back to the patient. Mine always takes about 3 weeks, even though the blood sample is PCR'd within one day. If the lab is a good one I do not see this as a significant issue. The main issue is to NOT do the blood draw on Friday, and I would also avoid Thursday. I get mine on Wednesday morning since my lab only does PCRs each Thursday afternoon.
Pat explained the CCyR issue, so you are well past CCyR and at MMR which is a 3 log reduction on the standardized IS scale. One thing to point out is that you started with a very low leukemia count, so you were diagnosed very early. You said your BMB was negative, so technically you were CCyR at diagnosis. So you have experienced a 1 log drop in the 3 months since diagnosis. In this way the IS scale is not that useful to you since you do not fit the standardized model.
Your rationale for switching Oncs is not based on treatment need, just on personal interests in looking forward. You can get that information here, but otherwise I can understand the desire to have that in an Onc.
#9
kat73
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Posted 14 September 2015 - 11:08 AM
Trey - What do you make of the remark of Kali's onc that "they are not looking for a cure anymore"? I've been worried about that, myself.
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.
#10
rcase13
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Posted 14 September 2015 - 01:47 PM
No profit in a cure.
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!
#11
Kali
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Posted 14 September 2015 - 03:08 PM
Thank you to all you responded to my questions. I really appreciate the input.
To Trey, even if my onc said my fish test at diagnosis showed 75 percent was leukemia, I started with a low count at diagnosis since it wasn't in my Bmb? What you said is highly encouraging to me.
To the question about cure, the new onc said he strongly believes they will cure cml in my lifetime and I just turned 60. He also mentioned some drugs in the clinical pipeline that will hopefully be out in the next few years that have less side effects than what we currently can experience with these drugs. All of this is very encouraging!!
To Trey, even if my onc said my fish test at diagnosis showed 75 percent was leukemia, I started with a low count at diagnosis since it wasn't in my Bmb? What you said is highly encouraging to me.
To the question about cure, the new onc said he strongly believes they will cure cml in my lifetime and I just turned 60. He also mentioned some drugs in the clinical pipeline that will hopefully be out in the next few years that have less side effects than what we currently can experience with these drugs. All of this is very encouraging!!
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%
#12
Trey
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Posted 14 September 2015 - 04:34 PM
It should be encouraging. You can learn much of that information here.
For instance:
http://community.lls...ects/?hl=abl001
There are a dizzying array of claims about things which can help treat or cure CML, from food extracts to new drugs. One of our members (cousineg http://community.lls...27746-cousineg/) does a nice job listing everything he finds. He does not filter them, so reader beware.
http://www.cmleukemi...le-for-cml.html
#13
Kali
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Posted 14 September 2015 - 05:11 PM
Thank you! I am very happy I joined this forum. These resources are great!
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%
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