Have any surveys been done on people that have gone undetected for over 2 years on any other drug besides Gleevec? I am talking about other drugs Sprycel or Tasigna.
undetected
Started by
Floa7
, Mar 23 2017 12:34 PM
9 replies to this topic
#1
Floa7
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Posted 23 March 2017 - 12:34 PM
1 2012 CML detected Started Gleevec 400 mg
In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto
2 2015 Tasigna 600 mg/day
I have been PCRU for 2 years and stopped Tasigna 4 7 2017
5 8 2017 results 0.008
5 30 2017 results 0.028
6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1
My son
11 2011 CML detected Started Gleevec 400 mg
He went 2 1/2 years on gleevec and lost PCRU
Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0
He went back onto Sprycel and now is PCRU again
3 16 2017 results 0.008
6 1 2017 results 0.002
#2
mscl
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Posted 23 March 2017 - 01:59 PM
I've been undetectable for well over two years. Dx was 5 years ago, on Sprycel the whole time. Started on 100 mg, went to 70, then 50 and now 20mg. I have even had two brief breaks off Sprycel due to pleural effusions about 1.5 years ago and off again briefly this winter for severe skin rash. Hoping I will still be undetectable at next month's check up.
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#3
Trey
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Posted 23 March 2017 - 04:06 PM
Have any surveys been done on people that have gone undetected for over 2 years on any other drug besides Gleevec? I am talking about other drugs Sprycel or Tasigna.
You would need to be more specific.
#4
Floa7
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Posted 23 March 2017 - 04:15 PM
You would need to be more specific.
I guess I blew that....I was talking about surveys for completely stopping the TKI after 2 years of being undetectable besides Gleevec.
1 2012 CML detected Started Gleevec 400 mg
In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto
2 2015 Tasigna 600 mg/day
I have been PCRU for 2 years and stopped Tasigna 4 7 2017
5 8 2017 results 0.008
5 30 2017 results 0.028
6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1
My son
11 2011 CML detected Started Gleevec 400 mg
He went 2 1/2 years on gleevec and lost PCRU
Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0
He went back onto Sprycel and now is PCRU again
3 16 2017 results 0.008
6 1 2017 results 0.002
#5
Buzzm1
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Posted 23 March 2017 - 06:55 PM
I guess I blew that....I was talking about surveys for completely stopping the TKI after 2 years of being undetectable besides Gleevec.
peruse the Stop Studies ...
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
#6
Trey
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Posted 24 March 2017 - 08:24 AM
Generally, the limited data available shows the highest cessation success rates are for those who have taken Tasigna, secondly for those who took Sprycel, then for Gleevec. But due to the small numbers in the studies the success rates are not very accurate and vary quite a bit.
#7
Floa7
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Posted 24 March 2017 - 03:33 PM
Thanks Buzz and Trey for the info. My onc hadn't stopped TKI with a patient before, and onc had told me 6 months ago about stopping this after 2 years of undetectable. She is going to check with someone higher up and get back to me about me stopping the Tasigna.
Thanks again Guys
1 2012 CML detected Started Gleevec 400 mg
In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto
2 2015 Tasigna 600 mg/day
I have been PCRU for 2 years and stopped Tasigna 4 7 2017
5 8 2017 results 0.008
5 30 2017 results 0.028
6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1
My son
11 2011 CML detected Started Gleevec 400 mg
He went 2 1/2 years on gleevec and lost PCRU
Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0
He went back onto Sprycel and now is PCRU again
3 16 2017 results 0.008
6 1 2017 results 0.002
#8
Jan0080
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Posted 29 March 2017 - 05:07 AM
I continue to have great progress with my PCR reduction,
My PCR was 77.9 at the start. After 30 days on Sprycel 100 it was 28.5. Monday was day 79 of 100 mg Sprycel and my PCR was down to 1.4!!! I am hoping that I get a dose reduction to 80 or 70 mg. Thank goodness there are some amazing miracle drugs available.
My PCR was 77.9 at the start. After 30 days on Sprycel 100 it was 28.5. Monday was day 79 of 100 mg Sprycel and my PCR was down to 1.4!!! I am hoping that I get a dose reduction to 80 or 70 mg. Thank goodness there are some amazing miracle drugs available.
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
#9
hannibellemo
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Posted 29 March 2017 - 07:58 AM
Congratulations, Jan, and welcome to the group!
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>
#10
Melanie
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Posted 29 March 2017 - 10:36 AM
That's wonderful progress! Very happy for you and another reason I'm also so grateful for these miracle drugs too!
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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