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After 11 yrs, PCR positive now for b3a2...what does this mean?

Started by DebR , Dec 19 2017 03:24 PM

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8 replies to this topic

#1 DebR

New Member

Members
3 posts

Posted 19 December 2017 - 03:24 PM

Hi. I'm new to the group... trying not to feel scared... I've been in treatment for CML since Dec. 2006, and have been doing great. Took Gleevec for 6 years, and then was switched to Sprycel in 2012 (because my new doc insisted on getting the PCR test to "no detection" result). For 11 years, when there is a positive reading on my PCR test, it's always been for the b2a2 transcript (BCR-ABL).

Last month my test read "no detection" for that transcript BUT read positive for the b3a2 transcript. What was most concerning, though, was that my doctor couldn't explain that. His response was, "Yeah, that's kind of confusing." Without going into more detail, I'm wondering:

Has this happened to anyone else?
Does anyone know what this might mean?
What other treatments have members found success with after Gleevec and Sprycel?

Thanks so VERY much for any information anyone has.

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#2 scuba

Advanced Member

Members
1,044 posts

LocationHouston, Texas

Posted 19 December 2017 - 04:22 PM

I would not be concerned much at this stage. The "detection" of b3a2 could very likely be a blip and disappear at next test. It could also be a lab error.

Ask your doctor to test again and verify it's real. Chances are it doesn't mean anything.

Additional information:

https://www.ncbi.nlm...les/PMC3238477/

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"

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#3 Buzzm1

Advanced Member

Members
972 posts

LocationSilicon Valley

Posted 19 December 2017 - 06:13 PM

DebR, in that you are still on Sprycel 100mg it's likely an error and nothing to worry about.

Has your onc ever suggested that you lower your dosage or attempt cessation?

Eleven years is a long time to be on a full dose of a toxic drug especially when you have been undetected for a substantial period.

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

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

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#4 DebR

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Members
3 posts

Posted 19 December 2017 - 06:16 PM

Thanks, scuba. I did just have another blood draw last week to run the PCR test again. Just don't have the results yet... My current doctor has also talked recently about switching to Synribo if the test values go up. I've read the discussions about that drug here on the board, and they confirm my feeling that it is NOT something I want to take.

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#5 DebR

New Member

Members
3 posts

Posted 19 December 2017 - 06:27 PM

Buzzm1, I found out I had CML while living in Guatemala (had a great doc there) and never tested undetected while on Gleevec, which is why my first doc here in the States wanted to switch me to Sprycel. It took over a year to get an undetected result. Since then, I'll have 2 or 3 results in a row of undetected, and then I'll have 1 or 2 under 0.1%, so it's never been suggested that the dose be lowered. (Tests are every 3-4 months.)

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#6 Buzzm1

Advanced Member

Members
972 posts

LocationSilicon Valley

Posted 19 December 2017 - 06:34 PM

Buzzm1, I found out I had CML while living in Guatemala (had a great doc there) and never tested undetected while on Gleevec, which is why my first doc here in the States wanted to switch me to Sprycel. It took over a year to get an undetected result. Since then, I'll have 2 or 3 results in a row of undetected, and then I'll have 1 or 2 under 0.1%, so it's never been suggested that the dose be lowered. (Tests are every 3-4 months.)

Thanks for that additional info DebR; please consider adding your CML history into your Signature ... click on the link below for instructions on doing so ...

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

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

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#7 Trey

Advanced Member

PS Beta Group
1,705 posts

LocationSan Antonio, Texas

Posted 20 December 2017 - 09:40 AM

You are doing very well, so focus on that.

Don't let them give you Synribo. A very bad idea for someone who is doing very well.

I have both B2A2 and B3A2, and have done very well for 12 years. This occurs in less than 5% of CML patients. Many patients never know which one they have. A couple possibilities for your case: 1) maybe you always had both but you did not know it (maybe your lab changed methods and they now report it, or Onc never noticed it, or you were never told) or 2) a lab error occurred and it doesn't really exist.

If you always had both types but never knew it, sometimes one or the other will pop up into detectability. Since you hover around undetectable, that is the likely scenario.

By the way, if someone has both types, the final PCR result must add the two together.

See what your next PCR says and let us know.

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#8 kat73

Advanced Member

Members
884 posts

LocationWashington, DC area

Posted 20 December 2017 - 11:16 AM

Trey - I have this too - no one has ever mentioned it, and I keep forgetting to ask. I'm assuming the lab automatically reports the two results as added together, when reported out? Gosh, if not, I'm in a world of hurt, as I never see the results, am only told a number by onc's email. The lab does the adding together, right?

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.