I was diagnosed with CML in November 2014. It is been a very long road. But today for the first time my report said not detected, 0.0000! I don't post often, but in the last four years I have been on this site almost every day. I want to thank you all for your support, your honesty, your kind words and your advice. I wish you all good health. Diane.
Not Detected - my two new favorite words
Started by
Damerault
, Oct 20 2017 09:33 AM
14 replies to this topic
#1
Damerault
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Posted 20 October 2017 - 09:33 AM
11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.
Remain on full dose Tasigna
Major p210 International Scale
05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000
Be well, Diane.
#2
Damerault
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Posted 20 October 2017 - 09:35 AM
Sorry, November 2013.
11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.
Remain on full dose Tasigna
Major p210 International Scale
05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000
Be well, Diane.
#3
scuba
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Posted 20 October 2017 - 09:37 AM
Dameraults numbers needs one more line - see below:
05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
10/20/2017 0.0000 UNDETECTED
Edited by scuba, 24 October 2017 - 11:02 PM.
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"
#4
Lori's okay
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Posted 20 October 2017 - 12:32 PM
Wonderful, wonderful, wonderful Diane!!! So glad for you and thanks for sharing the good news!!!!!
(Just curious what dose of Tasigna you've been taking?)
DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg
in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day
DATE/PCR
09-11/ 8.08 not IS
03-12/ 0.054 not IS
06-12/ 0.035 not IS
09-12/ PCRU, 01-13/ PCRU
4-13/ 0.042 IS
7-13/ 0.014 IS
11-13/ PCRU, 04-14/ PCRU
8-14/ 0.006 IS
PCRU: 12-14/ 05-15/ 10-15/ 02-16/
09-16/ 02-17/ 09-17/
10-17 tapered off
11-3-17 Stopped Tasigna
1-15-18 still PCRU
#5
kat73
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Posted 20 October 2017 - 12:35 PM
Welcome and congratulations, Diane! Scuba, FAN-tastic! And on 20 mg Sprycel. Wow.
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
cmljax
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Posted 20 October 2017 - 12:59 PM
Congrats Diane. Not many of us can tolerate Tasigna - I certainly couldn't at full or even 75% dose. Only since reduction to 300 mg and now 150 mg have I started to feel meaningfully better. You are certainly a candidate for dose reduction now if you want to reduce side effects.
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
#7
Buzzm1
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Posted 20 October 2017 - 01:33 PM
Great news! Congratulations Diane; I'm looking forward to you posting good news more often.
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
JohnFromChicago
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Posted 20 October 2017 - 04:11 PM
Congratulations, great news!
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%
#9
tiredblood
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Posted 20 October 2017 - 09:25 PM
Those are, indeed, two great words. Congratulations. Wonderful news! You and I were diagnosed the same month/year. I wish you good health too.
#10
hannibellemo
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Posted 21 October 2017 - 07:14 AM
Congratulations, Diane, wonderful news!
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>
#11
Damerault
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Posted 21 October 2017 - 08:45 PM
Wonderful, wonderful, wonderful Diane!!! So glad for you and thanks for sharing the good news!!!!!
(Just curious what dose of Tasigna you've been taking?)
I take 300 mg Tasigna twice a day.
11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.
Remain on full dose Tasigna
Major p210 International Scale
05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000
Be well, Diane.
#12
JackRyan8311
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Posted 23 October 2017 - 04:44 PM
Great news congratulations!!!
Diagnosed 9/15/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017
#13
rcase13
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Posted 23 October 2017 - 09:07 PM
Good stuff, I remember when my doctor called me at work to tell me I had reached PCRU. I got up and fast walked down the hall so no one could see me crying.
Wishing you and everyone more 0s!
Wishing you and everyone more 0s!
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg
Cancer Sucks!
#14
DebDoodah22
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Posted 24 October 2017 - 05:06 PM
Wonderful news Diane AND Scuba!!
#15
ROMO
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Posted 24 October 2017 - 07:15 PM
When a flower blooms in a meadow, spring is not far behind.
Romo
Sorry for the sappy stuff.
DX August 2016. WBC ~160K
PH+ Cells 36%
No Spleen enlargement
No Symptoms. Other counts ~Normal
BCR-ABL p210 (Detected)
BCR-ABL p190 (Not Detected)
Sprycel 100mg.
PCR 02/01/2017 0.146 IS
PCR 08/07/2017 0.022 IS
Next PCR: 12/XX/2017
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