So I went up from .0068 to .0097 last time I met with my onc he said that if I went up I Amy want to switch TKI and I am not sure I want to switch from gleevec . I think I read that I should worry about it if I stay below 1% but this seems close . What should I do ?
Increase in BCR-ABL1
Started by
Jerry.s
, Jun 14 2016 03:15 PM
30 replies to this topic
#2
kat73
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Posted 14 June 2016 - 04:05 PM
This is a statistically insignificant change. Wait and see if a trend is developing before switching TKI's. You are so far below 1% - you are in a deep remission (MR4) and have no worries at this time.
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.
#3
gerry
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Posted 14 June 2016 - 04:55 PM
That's the trouble when the report is so low - changes can look bigger then they really are. This is just noise, as kat says trends are what matters. People can bounce around a bit at these low levels.
#4
Jerry.s
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Posted 15 June 2016 - 04:52 AM
It's almost the two year mark is unfair for myself to want to be at undetective by now
#5
hannibellemo
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Posted 15 June 2016 - 06:28 AM
Jerry,
Not everyone reaches PCRU (undetected)! Nasty truth that bears repeating. You may have a better chance if you switch to a 2nd generation TKI but you have indicated you don't know if you want to do that, and anyway, there is no guarantee one way or the other.
The reality is you are doing just fine where you are, if your doctor disagrees get a new doctor who understands CML and its treatment.
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>
#6
Buzzm1
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Posted 15 June 2016 - 09:39 AM
Jerry.s, when you have a chance please post your PCR history, preferably in your Signature. I think there is confusion as to what scale your readings are reported in.
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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#7
kat73
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Posted 15 June 2016 - 10:10 AM
Jerry, Hannibellamo is correct. No matter what we do, some of us will never get to PCRU, but almost everyone can get into the "safe" range, and you are definitely there. Also, remember that many of us are turtles and it has taken 5 or more years to approach your numbers. And yes, turtles are getting to PCRU, as well. Your feelings of impatience are understandable, but let your head tell you otherwise.
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.
#8
Gail's
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Posted 16 June 2016 - 03:18 PM
Kat73, what is the safe range?
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#9
gerry
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Posted 16 June 2016 - 04:42 PM
Achieving CCyR is the main goal.
#10
Jerry.s
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Posted 16 June 2016 - 06:21 PM
BCR-ABL1/ABL1 1.87 on 10/2/2014
BCR-ABL1/ABL1 .642. on 12/3/2014
BCR-ABL1/ABL1 .016. on 3/12/2015
BCR-ABL1/ABL1 .011. on 5/9/2015
BCR-ABL1/ABL1 .012. on 8/13/2015
BCR-ABL1/ABL1 .0068. on 1/21/2016
BCR-ABL1/ABL1 .0097. on 6/2/2016
Ok everyone here is my history from DX to present. Last time my onc said if I went up again we would talk about switching or increasing the dose and I don't want to because I just got use to the side effect 6 months ago.
#11
gerry
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Posted 16 June 2016 - 06:51 PM
I would not even consider changing unless it stated making bigger jumps. It still appears as a bounce to me. Wait until your next test, remember it is a trend you need to worry about.
#12
kat73
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Posted 17 June 2016 - 09:22 AM
Gails - Gerry is right, CCyR is the goal. But I guess there is agreement that anything below (or maybe at or below) MR3 is "doing great." And MR3 is .1% IS. I believe at that level, CCyR is assured and the risk of progression to blast phase extremely unlikely. Please, Trey or anyone, correct me if I'm wrong.
Jerry.s - I agree with Gerry. Your trend, as you have helpfully laid out for us, is nicely, steadily and promptly downward. I would be mystified and alarmed if your onc wanted to switch drugs every time your PCR bounced an eensy amount like this. This happens all the time, and it is unnerving for us, but in the absence of a clear, sustained trend upward and exceeding a log difference, it is meaningless.
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.
#13
hannibellemo
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Posted 17 June 2016 - 12:25 PM
jerry.s,
You are doing great!!!! You may need to think about getting a new doctor, your's does not inspire confidence.
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
Buzzm1
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Posted 17 June 2016 - 01:34 PM
Jerry.s, ask your oncologist for a summary of your PCR status; specifically whether, or not, you have reached MR3 (0.1%). The numbers you posted above aren't being expressed as a percentage, leading to continuing confusion.
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
#15
chriskuo
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Posted 17 June 2016 - 02:13 PM
As Buzz mentioned, in addition to the ratio you are seeing, there should be a item in the test results labeled International Scale %.
This is used to determine the standardized log reduction.
If for some reason, the lab does not convert to International Scale, they should still report their version of log reduction.
#16
gerry
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Posted 17 June 2016 - 05:07 PM
Good pick up Buzz, I just assumed the results were being reported as IS results. I forget that there might still be labs in the US that use their own scale still.
Hopefully these results are IS and the % has just been left off.
Hopefully these results are IS and the % has just been left off.
#17
winespritzer
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Posted 17 June 2016 - 08:43 PM
Jerry,
It took me 2 yrs 3 mos to reach pcru.
Knew numbers were going down and that plus this board kept me going.
Just a turtle,
Winespritzer
It took me 2 yrs 3 mos to reach pcru.
Knew numbers were going down and that plus this board kept me going.
Just a turtle,
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
#18
Antilogical
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Posted 17 June 2016 - 10:17 PM
Jerry.s - I've had CML for 4+ years, and I've experienced little blips in my test results, too. My last test was Not Detected, but I try to be mentally prepared (though maybe a bit disappointed) to see a little bounce at any time. I always look at the last 3 tests - if it's generally downward or stable, then it's all good.
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
#19
Buzzm1
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Posted 17 June 2016 - 11:09 PM
BCR-ABL1/ABL1 1.87 on 10/2/2014
BCR-ABL1/ABL1 .642. on 12/3/2014
BCR-ABL1/ABL1 .016. on 3/12/2015
BCR-ABL1/ABL1 .011. on 5/9/2015
BCR-ABL1/ABL1 .012. on 8/13/2015
BCR-ABL1/ABL1 .0068. on 1/21/2016
BCR-ABL1/ABL1 .0097. on 6/2/2016
Ok everyone here is my history from DX to present. Last time my onc said if I went up again we would talk about switching or increasing the dose and I don't want to because I just got use to the side effect 6 months ago.
Jerry.s, noticed that since 08/2015 you are testing every 5 months; you might want to test again in early Sept. (3 months) to check the direction.
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
#20
chriskuo
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Posted 20 June 2016 - 03:15 AM
The label BCR-ABL1/ABL1 wpuld typically precede the normalized copy ratio, not the International Scale %, which is usually labeled separately as such.
For example, the ratio .0007 converts to IS .03%, which is about a 3.5 log reduction, so I don't think we know what Jerry.s IS log reduction is.
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