I agree... Druker is a beacon... a champion... a gem...
Great to see you are still doing well Mike!
Posted 26 July 2017 - 05:09 PM
I agree... Druker is a beacon... a champion... a gem...
Great to see you are still doing well Mike!
CML diagnosed April 2016
Type One Diabetes diagnosed April 1980 (age 12)
BCR-ABL (IS)
46.77 April 2016
3.568 July 2016
0.076 Oct 2016
0.016 Feb 2017
0.0079 April 2017
0.014 July 2017
0.019 Sept 2017
0.011 Nov 2017
0.019 Jan 2018
Sprycel
100mg April 29 - September 22
75mg September 23 - October 28
50mg October 29 2016 to present
Posted 12 September 2017 - 09:10 PM
My 07-18-2017 BCR-ABL test after 9 months cessation was positive (0.0012).
My 08-29-2017 BCR-ABL retest after six weeks was again positive 0.001(but no increase).
My onc wants me to test on a monthly basis but I am not inclined to do so ...
I'm leaning towards returning to quarterly PCR testing but may test again prior to my annual physical
in late October.
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
Posted 13 September 2017 - 12:31 PM
Buzzm - Great news. I remember reading that many post-transplant CML survivors continue to test weakly positive in this range, for years, without treatment, and to no ill effect.
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.
Posted 13 September 2017 - 01:07 PM
Buzzm - Great news. I remember reading that many post-transplant CML survivors continue to test weakly positive in this range, for years, without treatment, and to no ill effect.
Thanks Kat ... for reference from Stop Studies
STIM2 http://bit.ly/1IbwZuh 2011
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
Posted 13 September 2017 - 10:40 PM
Fantastic news that the BCR ABL is still only just barely detectable Buzz! What an incredibly low level it is at.
Forge on and I hope it remains that way or better...
Thank you for continuing to post your data too
CML diagnosed April 2016
Type One Diabetes diagnosed April 1980 (age 12)
BCR-ABL (IS)
46.77 April 2016
3.568 July 2016
0.076 Oct 2016
0.016 Feb 2017
0.0079 April 2017
0.014 July 2017
0.019 Sept 2017
0.011 Nov 2017
0.019 Jan 2018
Sprycel
100mg April 29 - September 22
75mg September 23 - October 28
50mg October 29 2016 to present
Posted 13 September 2017 - 11:25 PM
Fantastic news that the BCR ABL is still only just barely detectable Buzz! What an incredibly low level it is at.
Forge on and I hope it remains that way or better...
Thank you for continuing to post your data too
Thanks M.A. ... always good to hear from you.
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
Posted 18 September 2017 - 06:37 PM
Undetectable as of 9/11/17
dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16
Posted 18 September 2017 - 06:43 PM
Undetectable as of 9/11/17
Great news mdszj! Congratulations!
http://community.lls...ypcru/?p=196277
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
Posted 14 October 2017 - 06:43 PM
Cessation 08-10-2017 0.001
Detected 09-xx-2017 0.006
Detected 10-xx-2017 0.088
Relapse 11-xx-2017
Restart
Discussion Forum Cessation Study
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
Posted 14 October 2017 - 06:52 PM
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
Posted 16 October 2017 - 10:45 AM
Super news, mdscj!
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.
Posted 16 October 2017 - 03:49 PM
thx Kat! good luck!!
dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16
Posted 23 October 2017 - 08:01 AM
In Dr. Mauro's 27 September 2017 presentation "What's on the Horizon for Chronic Myeloid Leukemia?" he shared this in slide #31, which appears to be new NCCN guidelines to be published soon and covers guidelines on who should stop, how to monitor, and when to restart. Please correct me if I'm wrong.
Find slides and audio at http://www.lls.org/p...yeloid-leukemia
Criteria for consideration of treatment free remission (TKI cessation) : the rules as noted by the National Comprehensive Cancer Network (NCCN) Age ≥18 years. Chronic phase CML. No prior history of accelerated or blast phase CML. On approved TKI therapy (imatinib, dasatinib, nilotinib, bosutinib, or ponatinib) for at least three years. Prior evidence of quantifiable BCR-ABL1 transcript. Stable molecular response (MR4; ≤0.01% IS) for ≥2 years, as documented on at least four tests, performed at least three months apart. No history of resistance to any TKI. Access to a reliable QPCR test with a sensitivity of detection of ≥4.5 logs that reports results on the IS and provides results within 2 weeks. Monthly molecular monitoring for the first six months following discontinuation, bimonthly during months 7-24, and quarterly thereafter (indefinitely) for patients who remain in MMR (MR3; ≤0.1% IS). Consultation with a CML Specialty Center to review the appropriateness for TKI discontinuation and potential risks and benefits of treatment discontinuation, including TKI withdrawal syndrome. Prompt resumption of TKI, with a monthly molecular monitoring for the first six months following resumption of TKI and every 3 months thereafter is recommended indefinitely for patients with a loss of MMR. For those who fail to achieve MMR after six months of TKI resumption, BCR-ABL1 kinase domain mutation testing should be performed, and monthly molecular monitoring should be continued for another six months. Reporting of the following to a member of the NCCN CML panel is strongly encouraged: -Any significant adverse event believed to be related to treatment discontinuation. -Progression to accelerated or blast phase CML at any time.
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
Posted 23 October 2017 - 03:03 PM
Crazy if the above guidelines is true it means I think I qualify for stopping. Wow so nervous. I spoke with my doctor about stopping and he said he would rather keep going a little longer but he would support my decision to stop now if I wanted to.
One of the big issue for me is anxiety. For those that have stopped did it increase or decrease your anxiety?
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Posted 23 October 2017 - 04:40 PM
Posted 23 October 2017 - 11:34 PM
I had no issues when I stopped, but I know of TFRers who still have anxiety even though they've been TFR for six or seven years. I had a blip at the last test, but I was more annoyed about my cholesterol result then the blip.
Posted 24 October 2017 - 12:13 PM
Posted 24 October 2017 - 04:58 PM
Posted 25 October 2017 - 03:52 PM
Posted 26 October 2017 - 01:22 AM
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