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pcr results very different between (2) I.S labs


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#1 thatguy

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Posted 30 January 2016 - 01:36 PM

How's it going everybody? I'm 29, living in Las Vegas, diagnosed in 10 months ago with Cp cml. I was initiated on 400 MG of gleevec, which I was consistently responding positively to, but not quick enough to likely meet goals, even though my adherence was paranoia level perfect. As of December, my pcr result came in at 1.7% i.s, using my normal lab. I switched to Tasigna 300 MG 2x daily, and was on it for a week prior to a consult for bmt/sct evaluation at city of hope in ca, where new labs were drawn. That pcr produced a 4.5% result. Am I right to be freaking out, or ? Thanks
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#2 Lucas

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Posted 30 January 2016 - 03:44 PM

thatguy, don't freak out yet. i had many problems with labs in 2 years. i remember had a pcr of 0.5% IS and, 15 days later, had a 7% from another lab. them, 2 months later, i had 2.6% IS from one lab and had another pcr from another lab that was 6.05%IS.

First of all: you have to know if the 4.5% was on IS. Second: pcrs have a half log error margin, i.e., your results are within that margin. Try to have another pcr from the same lab in a month time. good luck. 



#3 thatguy

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Posted 30 January 2016 - 03:52 PM

Thank you sir, I appreciate you sharing your experience...I would expect that C.O.H would be I.S, as their lab work, while I was there, was performed in super high volume it seemed, calling patients up by 3's, every minute or so...I would hate to be falsely optimistic and assume they aren't, too. Lol
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#4 Lucas

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Posted 30 January 2016 - 04:39 PM

cheers, thatguy! we need to follow the trend. you changed labs, so let's wait for the next pcr to follow the trend. i changed to nilotinib from gleevec when i had a pcr of 6% at 8 months. within 3 months on tasigna i had ccyr and my laste reliable pcr was 0.0081%. now i'm waiting for my next pcr. fingers crossed!!!

 

try to read this

 
http://www.cmlsupport.org.uk/sites/default/files/qrt-pcr-primer.pdf


#5 thatguy

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Posted 30 January 2016 - 05:00 PM

That's awesome man, great to hear! Congratulations, I'm sure life feels 100x easier to deal with in general! Keep that good news coming!
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#6 Trey

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Posted 30 January 2016 - 11:45 PM

Not sure why you were consulting with BMT folks.  I would stay away from them.  They think BMTs are fine because that is what they do.  Avoid unless absolutely necessary.

 

You have not been on Tasigna long enough to have a useful PCR result.  Wait a few months and see what happens.



#7 thatguy

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Posted 31 January 2016 - 11:37 AM

Thanks, Trey. I was referred by my normal doc just for evaluation, as far as I've been informed. The doctor that I saw there, expressly stated that his opinion was that medicine would likely be successful for me. At any rate they preformed a mutational analysis while I was there, and those results are pending. ..thank you for the reply. And thanks for all that you have put forward on the disease, I found your blog a few weeks ago in one my nightly Q&A cml sessions, prior to this forum. It's tremendous the amount on knowledge you've gathered. Thank you very much for that.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#8 kat73

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Posted 31 January 2016 - 01:34 PM

Thatguy - This is a long-shot thought, but I know that I got tripped up in reading my first PCR reports way back 6-1/2 years ago, when I was "new."  Before labs went to IS, and even during a sort of transition time as well, the value was reported without multiplying it by the thousand (hundred?  I forget) that it was supposed to be.  Therefore, I would get "12%" but it really meant "1.2" and then later on, ".12%" was really "0.012%"  It rocked my world, a world that was already so confusing, as I tried to relearn high school science and figure out which was bigger, a gene or a chromosome.  It didn't help that the oncologist waved my questions away, and just said, "you're doing very well.  Come back in a couple of months."  Years later, new oncologist along with new lab and the new IS system, I would occasionally look back at my old tests and try to re-calculate into IS, but it was a fool's errand (with me being the fool - my math skills are worse than my science ones.)  But I offer it up as a possibility - it may be the way your result was REPORTED, rather than the value itself. 


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.


#9 thatguy

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Posted 31 January 2016 - 01:53 PM

Thanks, Kat. I'm in the same boat with my math skills. Haha. Both values that I received were expressed as absolute percentages, one verbal (the recent 4.5% from c.o.h) and the other, lower, verified in print from my normal- Quest. You may very well be correct but my doctor always rehashes the printed values...? I'm waiting on results from a retest this past Tuesday from Quest, and the mutation screening. I guess at that point I'll know whether panic/mania is actually justified. (Haha) :(
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)




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