Just got my 3mos tests back, and I'm happy to report that Gleevec is doing its job!!! My PCR test is at 3%... that was the first time it was done. I had a FISH test done at diagnosis, and one was done this time, but it took longer to come back. At dx, the FISH number was 91.4%... now it is at 7.8%. The onc explained that they will be doing the PCR test from now on, so the 3% is the baseline number.... She said they want it below 10%, and it was!!! Thankfully I'm remaining side effect free from Gleevec and continuing with all my Crossfit and running (and work).... it was a happy day today!!!
Happy 3mos report!
Started by
mn911girl
, Mar 23 2016 10:19 PM
9 replies to this topic
#1
mn911girl
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Posted 23 March 2016 - 10:19 PM
DX 12/9/15, Gleevec 400mg, PCR at 3% on 3/20/16.... continuing to be happy, healthy, and a workout fiend!!!!!
#2
IGotCML
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Posted 23 March 2016 - 10:57 PM
Great news!
#4
scuba
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Posted 24 March 2016 - 06:37 AM
You're trend is excellent! Only 3 months - fantastic. Tell your doctor you want one more FISH test. You want confirmation that FISH = zero. That should happen by next test and is the most important milestone. FISH = zero = CCyr = complete cytogenetic remission. After that - PCR testing is all you will need. Your PCR by that time should be around 1% or even lower. When it gets to 0.1%, mission accomplished. Normal is CCyR at 18 months. You're achieving that way ahead of time. Your prognosis for progression free survival is sky high.
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"
#5
kat73
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Posted 24 March 2016 - 10:34 AM
mn911girl - I am amazed and delighted that you have no side effects from Gleevec! That's unusual. Congratulations on being a swift and dramatic responder - that bodes well. Yay!
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.
#6
r06ue1
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Posted 24 March 2016 - 01:48 PM
Grats!
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
#7
Buzzm1
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Posted 24 March 2016 - 02:23 PM
It's all good news!
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
#8
trailcml
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Posted 24 March 2016 - 03:27 PM
That's really good news and the fact that you're continuing to do crossfit and running. I'm convinced running helped me manage the side effects of fatigue & allowed me to keep my sanity.
Diagnosed Age: 45
Diagnosed Date: Feb-19-2015
Drug/dose: Imatinib 300mg (reduced from 400mg on 1/31/2017)
Drug/dose: Imatinib 200mg (reduced from 300mg on 11/15/2017)
0 Month PCR = 20%
3 Month PCR = 0.3%
6 Month PCR = 0.03%
9 Month PCR = 0.019%
12 Month PCR = 0.0095%
15 Month PCR = 0.0104%
18 Month PCR = 0.0095%
21 Month PCR = 0.0038%
4/5/2017 PCR = 0.0057%
8/23/2017 PCR = 0.0096%
12/13/2017 PCR = 0.0114%
#9
tiredblood
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Posted 24 March 2016 - 11:04 PM
Congrats! I'm so happy for you.
#10
Melanie
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Posted 27 March 2016 - 10:37 PM
That's great news and congrats!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
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