Jump to content


Photo

Cessation - Relapse - Restart - Regained MMR - Recovery/PCRU

Started by Buzzm1 , Apr 12 2017 11:37 AM

  • Please log in to reply
104 replies to this topic

#1 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 12 April 2017 - 11:37 AM

Discussion Forum Previous Successful Cessations

ChrisC, gerry. story, mikefromillinois, VickiW, 

 

Over the past months a number of us have ceased taking our TKI, whether forced to by a medical condition, or voluntarily in an effort to get off of the TKI.  I am compiling information related to this to help show the rate of success, along with the rate of recovery.  The information contained therein is dependent on your input; for the benefit of all, please participate.  Thank you.

 

Cessation .................. Relapse .............  Restart ................. MMR ................... PCRU

09-27-2016 cleocans .. 11-xx-2016 0.33 ... 01-xx-2017 S 100mg                               05-16-2017

10-01-2016 JLS extensive problems while on TKI; even worse with cessation (read his posts)

10-17-2016 Buzzm1 as of 10-17-2017 still TFR

10-30-2016 mscl ................................... 01-25-2017 S 20mg voluntary restart

11-08-2016 Frogiegirl . 02-01-2017 0.78 .. 03-16-2017 S 100mg . 05-19-2017 0.02 .. 06-19-2017

11-15-2016 mdszj as of 01-08-2018 still TFR 

01-10-2017 kat73* .... 03-17-2017 0.47 .. 03-23-2017 S 50mg ... 05-04-2017 0.05 .. 06-12-2017 <0.01

04-07-2017 Floa7 ...... 06-30-2017 0.30 .. 07-01-2017 T 600mg

07-20-2017 janne ...... 12-11-2017 0.09 .. 12-18-2017 T 150mg

08-10-2017 Gail's ...... 11-xx-2017

10-06-2017 kat73** .... 12-xx-2017

11-03-2017 Lori's okay .. as of 01-15-2018 TFR

 

* on 70 mg Sprycel <0.01 IS

** on 50mg Sprycel <0.01 IS

 

Cessation is the date the TKI was stopped.

Relapse is the date of loss of MMR along with PCR.

Date of Confirmation of relapse and PCR if applicable

Restart is the date TKI is restarted along with dosage.

Regained MMR is the date MMR is regained along with PCR.

Recovery is date of PCRU 


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

#2 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 12 April 2017 - 03:31 PM

Buzzm - OK, I'll do that, sure.  I'll fill in the blanks when I get my next PCR and/or regain MMR.  It'll be in May.


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.

#3 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 13 April 2017 - 11:58 AM

Mike and Gerry,  congratulations on your successful cessations; however, the above table only includes those who have undergone cessation since 09-01-2016, a recent period of time for which I can fairly accurately include all cessations among active forum members.  Sorry.


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 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 13 April 2017 - 01:30 PM

OK Buzzm, here are my stats so far:

Cessation 1-10-17 (at time of cessation, was on 70 mg Sprycel and latest PCR was <0.01% IS)

Relapse 3-17-17 PCR 0.47% IS

Restart 3-23-17 on 50 mg Sprycel (next PCR will be in May)


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.

#5 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 13 April 2017 - 01:40 PM

OK Buzzm, here are my stats so far:

Cessation 1-10-17 (at time of cessation, was on 70 mg Sprycel and latest PCR was <0.01% IS)

Relapse 3-17-17 PCR 0.47% IS

Restart 3-23-17 on 50 mg Sprycel (next PCR will be in May)

thanks Kat ...


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 mdszj

mdszj

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 17 April 2017 - 04:37 PM

Hi Buzz, you have a great idea.  I am curious to see what the stats end up being.  I just had a blood draw a week or 2 ago and am expecting the lab results from quest any time now.  I will fill it in as soon as I get these results.  Hopefully still undetectable after 5 months... more later!


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

#7 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 21 April 2017 - 08:20 AM

Well here is my update 32 days on sprycel 100mg after trying cessation. 4.1472 on March 13 started sprycel March 16th bcr abl on 4/18/17 0.1392. But now my blood work is all over the place. I'm always in normal range. I want to reduce. The side affects are not tolerable. I mean obviously I'm alive, but quite miserable.... any advice on my blood work would be appreciated :D

Attached Files


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

#8 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 21 April 2017 - 10:41 AM

Frogiegirl - I don't see anything alarming in your labwork, but I defer to others smarter than I.  If your "reds" are a little low, wouldn't it be understandable that, having started up a TKI after being off, it's kind of like in the very beginning when there was a little myelosuppression going on as the good guys crank up the production of healthy replacement cells?  Even if these numbers never made it back to strict normal, they're very close and shouldn't cause you any problems.  But they will probably go back.

 

I am going to watch your progress carefully, since I was very heartened to see how fast you zoomed back into MMR-land - only one month!  But, that was at full dose - 100 mg Sprycel, right?  I went back on 50 mg, so it will be interesting to see if I get that nice response on less drug.

 

I know you've been PCRU and that's the goal.  You'll get there, I'm sure.  I had a nice doctor for something else fairly recently who said to me (when I was doubtful of ever "getting back" after an extremely long time in treatment, with setbacks) "Hey, you healed up before, you will this time, too."  It became my mantra, because it felt logical.  (I know - nothing is very logical with CML!)


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.

#9 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 21 April 2017 - 01:04 PM

Frogiegirl 

 

11-08-2016 cessation attempt 

 

Cessation 11-08-2016

Detected 01-05-2017 0.06

Relapse 02-01-2017 0.78

Confirmation 03-03-2017 3.26

Interim 03-13-2017 4.15

Restart 03-16-2017 S 100mg

Interim 04-18-2017 0.14

MMR 05-19-2017 0.0213

PCRU 06-19-2017*

 

*06-23-2017 reduced to Sprycel 70mg due to low hemoglobin

 

edited to add: 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

#10 mdszj

mdszj

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 30 April 2017 - 05:44 PM

Buzzm1

 

I recently got my pcr results, so as of 4/10/17 I am still undetectable (0.000% IS), so still hanging in.


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

#11 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 30 April 2017 - 06:03 PM

Buzzm1

 

I recently got my pcr results, so as of 4/10/17 I am still undetectable (0.000% IS), so still hanging in.

mdszj, at five months undetected there is only a very low percentage chance that you won't remain in remission. 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

#12 mdszj

mdszj

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 03 May 2017 - 02:25 PM

Buzzm1 that is good to hear, I also looked at your link, looks like according to the DADI study about half of people who stop dasatinib can expect to stay non detectable. 

 

Have a good day!!


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

#13 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 03 May 2017 - 08:22 PM

Of those who attempt cessation, the basic odds are roughly:

1 year undetected   <40%

2 years undetected <50%

3 years undetected <60%

after more than three years undetectable the odds improve only slightly with each additional year

 

initial rate of response to the TKI in reaching undetectable is a factor

at least one study showed that age is a factor;  the older you are, the better your odds; likely has to do with reduced rate of blood-cell production.

A percentage fail cessation regardless of how long they have been undetectable, or rate of initial response.

 

Of those who lose MMR, over 50% do so within two months; 85% of those who lose MMR do so within four months; 95% of those who lose MMR do so within six months.

 

Upon restart of the TKI MMR and undetectable status are typically regained quickly; initial rate of response is a factor

 

If you can't attempt cessation at least try to achieve the lowest dose possible for the long term.

 

Discussion Forum Cessation Study - 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

#14 Floa7

Floa7

    Advanced Member

  • Members
  • PipPipPip
  • 53 posts
  • Locationindiana

Posted 07 May 2017 - 03:24 PM

My son and I both have CML for 5 years. He stopped his Sprycel 70 mg and was back on it after three months off.

 

I stopped taking Tasigna 600 mg 4/72017 I go for blood work tomorrow, Wish me luck with good results.


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

#15 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 07 May 2017 - 04:49 PM

My son and I both have CML for 5 years. He stopped his Sprycel 70 mg and was back on it after three months off.

 

I stopped taking Tasigna 600 mg 4/72017 I go for blood work tomorrow, Wish me luck with good results.

Wishing you luck on tomorrow's test Floa7.  When you have a chance, for the benefit of others, post your CML history in your Signature.  Thanks in advance.


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

#16 story

story

    Advanced Member

  • Members
  • PipPipPip
  • 34 posts

Posted 09 May 2017 - 11:29 AM

Story, Cessation 6/22/2015 in LAST, still PCRU


#17 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 09 May 2017 - 05:41 PM

Discussion Forum Previous Successful Cessations

ChrisC, gerry. story, mikefromillinois, VickiW


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

#18 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 15 May 2017 - 03:08 PM

Buzzm - Here is my latest PCR to add to your data:  On 5/4/17 it was 0.05% IS.  That would have been 6 weeks after re-starting Sprycel and it was at the new, reduced dose of 50 mg.  I'm chuffed.


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.

#19 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 15 May 2017 - 03:44 PM

Buzzm - Here is my latest PCR to add to your data:  On 5/4/17 it was 0.05% IS.  That would have been 6 weeks after re-starting Sprycel and it was at the new, reduced dose of 50 mg.  I'm chuffed.

Congratulations on regaining MMR so quickly Kat; I'm chuffed right along with you although I had to look up the definition of chuffed to find out what it meant; you must be British. http://bit.ly/2ql792c


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

#20 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 15 May 2017 - 04:43 PM

kat73 cessation of Sprycel 70mg while at <0.01

 

Cessation ​01-10-2017 <0.01

Detected 02-xx-2017 0.02

Relapse 03-17-2017 0.47

Restart 03-23-2017 S 50mg

MMR 05-04-2017 0.05

Interim 06-12-2017 <0.01 return to initial value

PCRU

 

kat73 cessation of Sprycel 50mg while at <0.01

 

Cessation ​10-06-2017 <0.01

Detected 11-xx-2017 0.03

Relapse 12-xx-2017 2.06

Restart 01-xx-2018

 

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

Back to Chronic Myeloid Leukemia


1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users

    Blood Cancer Discussion Boards
  1. → Chronic Myeloid Leukemia
  2. Privacy Policy
  3. Discussion Board Guidelines ·