Last week I had my month 18 checkup and PCR. I received the results this morning. I was happy to see that my PCR reduced from 0.15 to 0.11. After my 15 month my onc suggested I might get another BMB. I only had one standard BMB done at diagnosis. She didn't seem too worried though when I told her I rather not have one and want to wait to see my next PCR. I was thinking if this PCR was < .10 (MMR) I would not bother with a BMB. I'm not quite MMR so now I'm kind of on the fence about what to do. Im not super worried about it but I also want to be proactive about it if it's something I should do.
18 Month PCR Results (to BMB or not to BMB?)
Started by
JohnFromChicago
, May 01 2017 11:09 AM
3 replies to this topic
#1
JohnFromChicago
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Posted 01 May 2017 - 11:09 AM
Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg
0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01%
#2
r06ue1
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Posted 01 May 2017 - 12:04 PM
What kind of test are they wanting to do, Mutation Analysis, FISH? FISH won't net any results since you are below 1%. I wouldn't get one unless my PCR went up one log.
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
#3
Buzzm1
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Posted 01 May 2017 - 12:51 PM
An earlier post by Trey http://community.lls...-pcru/?p=193155
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
#4
JohnFromChicago
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Posted 03 May 2017 - 11:33 AM
Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg
0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01%
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