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Moving treatment-free remission into mainstream clinical practice in CML


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#1 Buzzm1

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Posted 12 July 2016 - 11:08 AM

Moving treatment-free remission into mainstream clinical practice in CML http://bit.ly/29BHfOo

 

Abstract

 
The dramatic success of tyrosine kinase inhibitors (TKIs) has led to the widespread perception that chronic myeloid leukemia (CML) has become another chronic disease, where lifelong commitment to pharmacologic control is the paradigm. Recent trials demonstrate that some CML patients who have achieved stable deep molecular response can safely cease their therapy without relapsing (treatment free remission [TFR]). Furthermore, those who are unsuccessful in their cessation attempt can safely re-establish remission after restarting their TKI therapy. Based on the accumulated data on TFR, we propose that it is now time to change our approach for the many CML patients who have achieved a stable deep molecular response on long-term TKI therapy. Perhaps half of these patients could successfully achieve TFR if offered the opportunity. For many of these patients ongoing therapy is impairing quality of life and imposing a heavy financial burden while arguably achieving nothing. This recommendation is based on the evident safety of cessation attempts and TFR in the clinical trial setting. We acknowledge that there are potential risks associated with cessation attempts in wider clinical practice, but this should not deter us. Instead we need to establish criteria for safe and appropriate TKI cessation. Clinical trials will enable us to define the best strategies to achieve TFR, but clinicians need guidance today about how to approach this issue with their patients. We outline circumstances in which it would be in the patient's best interest to continue TKI, as well as criteria for a safe TFR attempt.
 

 


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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#2 kat73

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Posted 12 July 2016 - 12:50 PM

Thanks, Buzz.  Really helpful and comprehensive.  I had never heard of the DADI study and that would be the most relevant to me.  One thing I wonder about - when they talk about "resistant" to a TKI, do they mean not meeting the optimal level (as in time, like a turtle) or do they mean a failure to reach CCyR or MMR at all?  (I'm asking this in the context of their describing "resistance" as being a possible disqualifier for a trial for TFR - yellow or red box, i.e.)


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

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Posted 12 July 2016 - 01:31 PM

kat73, in Stop Studies 

 

Select patients with CML may safely discontinue dasatinib http://goo.gl/4r2D6G

Dasatinib Discontinuation trial  (DADI) http://bit.ly/1Sc5e9V November 9, 2015
All 63 patients (42 male, 21 female) had been treated with imatinib before the start of the dasatinib treatments.
Median age, 59.5
from an initial 63 with confirmed deep molecular response for at least 1 year
after 6 months, 31 (49%) treatment free
after 20 months, 30 (47.6%) still treatment free
 
resistance refers to those patients requiring a longer time to reach, or maintain, a deep molecular response.
 
Definition and treatment of resistance to tyrosine kinase inhibitors in chronic myeloid leukemia http://bit.ly/29GJe5z

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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#4 Buzzm1

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Posted 14 July 2016 - 04:30 PM

The reality is, the best that most of us can hope for, is being on a low as possible "maintenance dose" for the rest of our lives, or at least until a cure is found.  For those who have a reasonable chance of achieving TFR, not taking the chance, when the known associated risks in doing so are almost negligible, constitutes an acceptance of status quo. 


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#5 Buzzm1

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Posted 08 August 2016 - 01:24 PM

Cessation of TKI Treatment in Patients with CML May be Beneficial, Says Expert

 

So, if a patient is treated with imatinib (almost 94% of patients on this trial were on first-line imatinib), we identified a cutoff of about 6 years. If, after 6 years of Imatinib treatment, patients are taken off of therapy, about two-thirds of them can do that successfully and, in our analysis, they did not relapse by the sixth month time point after stopping. That was the primary analysis time point. 

 

Read more at: http://www.targetedo...h.aumHZogT.dpuf

 

that would be me ... 


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#6 kat73

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Posted 08 August 2016 - 01:51 PM

Wow, Buzz, if this pans out longterm, what terrific news.  But what was their definition of "relapse" in this study?  Loss of MMR?


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.


#7 kat73

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Posted 08 August 2016 - 02:01 PM

OK, just read the study results.  So, relapse is defined as loss of MMR.  Also, at 24 months the success rate is 51%, which is pretty much in line with other stop studies.  Still, this one is good because of the great number and variety of participants and the criterion of only MR4 to join.  (Yeah, I know, "only" - I wish!)


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.


#8 Buzzm1

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Posted 08 August 2016 - 02:03 PM

Wow, Buzz, if this pans out longterm, what terrific news.  But what was their definition of "relapse" in this study?  Loss of MMR?

Yes kat73, relapse in the Euro-SKI study, Part 3, was loss of MMR ... found this note in http://wb.md/28Ai4UM which is part of Stop Studies

 

In terms of duration of treatment, the rate of molecular relapse-free survival at 6 months was 65.5% in patients treated with imatinib for at least 5.8 years and 42.6% for those treated with the drug for 5.8 years or less.

 

for those taking higher efficacy second-line TKIs, the duration of treatment to generate similar statistics could prove to be substantially less


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#9 kat73

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Posted 08 August 2016 - 04:16 PM

Just gotta get to MR4 and stay there for a couple of years and then . . . I'm outta here!  Hope it happens.


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.


#10 DebDoodah22

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Posted 14 August 2016 - 12:59 PM

http://www.ncbi.nlm....pubmed/27488943

Here is the long url for the nih DADI publication.

#11 Trey

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Posted 10 October 2016 - 03:39 PM

The 6 year STIM1 trial update on cessation was just released.

 

100 CML patients who had a sustained PCRU (UMRD) for at least 2 years started the STIM study.  Only 16 maintained continuous PCRU all six years.  Another 23 never lost MMR but lost PCRU.  So 39 remained treatment free for all six years. 

 

Depending on how you view the stats, you could either say:

1) 39% succeeded if you count not losing MMR as the metric for success

2) 16% succeeded if you count continuous PCRU as the metric for success

 

http://www.cancernet...on-remains-safe



#12 gerry

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Posted 10 October 2016 - 05:15 PM

I am aware of a TFRer having to now return to a TKI after 3 years of cessation. They had blips all the way through, but have now lost MMR. They don't regret being off the TKI for those 3 years and are looking to stop again if/when they reach the appropriate point. :-)

#13 Buzzm1

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Posted 10 October 2016 - 05:33 PM

The 6 year STIM1 trial update on cessation was just released.

 

100 CML patients who had a sustained PCRU (UMRD) for at least 2 years started the STIM study.  Only 16 maintained continuous PCRU all six years.  Another 23 never lost MMR but lost PCRU.  So 39 remained treatment free for all six years. 

 

Depending on how you view the stats, you could either say:

1) 39% succeeded if you count not losing MMR as the metric for success

2) 16% succeeded if you count continuous PCRU as the metric for success

 

http://www.cancernet...on-remains-safe

Trey, thanks for the update; added it to 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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#14 r06ue1

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Posted 11 October 2016 - 05:57 AM

The 6 year STIM1 trial update on cessation was just released.

 

100 CML patients who had a sustained PCRU (UMRD) for at least 2 years started the STIM study.  Only 16 maintained continuous PCRU all six years.  Another 23 never lost MMR but lost PCRU.  So 39 remained treatment free for all six years. 

 

Depending on how you view the stats, you could either say:

1) 39% succeeded if you count not losing MMR as the metric for success

2) 16% succeeded if you count continuous PCRU as the metric for success

 

http://www.cancernet...on-remains-safe

 

Yeah, sort of figured this, the longer they go, the more people drop off.  The CML stem cells simply are not dying and our bodies immune systems are not able to target them.  Just need to wait for the trials in the UK and other places with the stem cell targeting therapies and immunotherapy to truly be cured of this disease.


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


#15 gerry

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Posted 12 October 2016 - 05:50 AM

The 6 year STIM1 trial update on cessation was just released.

 

100 CML patients who had a sustained PCRU (UMRD) for at least 2 years started the STIM study.  Only 16 maintained continuous PCRU all six years.  Another 23 never lost MMR but lost PCRU.  So 39 remained treatment free for all six years. 

 

Depending on how you view the stats, you could either say:

1) 39% succeeded if you count not losing MMR as the metric for success

2) 16% succeeded if you count continuous PCRU as the metric for success

 

http://www.cancernet...on-remains-safe

I was a bit slack and only just read this now - still shows for most people that if you can get past the first six months and not lose MMR that you can continue to be treatment free.



#16 SandyG353

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Posted 27 October 2016 - 12:39 PM

Hi Everyone.

If my daughter's numbers are still 000 , her oncologist will have her cease taking Gleevec.  She has been in  molecular remission for 7 and a half years.  The doctor was against doing this years ago, but told her if she wanted to be in a trial,  Hackensack Hospital in New Jersey was doing the trial to stop Gleevec.  Her oncologist gave her some kind of test with which he was happy with the results.I believe the test showed that she would not have any resistance to any other drug  used for CML.  This was a precaution to make sure that if she went off Gleevec, that drug or another would put her back in remission if she failed to maintain molecular remission.  He stated that if her numbers are still at 000 in November, he will have her stop the Gleevec and monitor her.  He stated that he has been to many conferences on the topic  and feels that it would be the right thing to do for her.  The only concern we have is that the hospital changed labs and the last test she had showed a slight elevation of the 000.  That could be lab error or due to change in labs.  It didn't concern him.  He will base his decision on the November blood test. .



#17 r06ue1

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Posted 27 October 2016 - 12:52 PM

As long as she doesn't lose MMR, she should be fine.  Just make sure they do the testing monthly.  

 

If she does fail the trial, get back to undetected and then try dosage reduction instead, 200 mg should be enough to keep her at zero.


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


#18 SandyG353

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Posted 28 October 2016 - 02:53 PM

I always wondered why her oncologist and Dr. Druker both never felt that my daughter could drop the doseage of Gleevec to 200.  For a period of time she had real bad eyebleeds that lasted for at least a week and came back after a few days.  Dr. Druker had her oncologist do a special test to see how she was absorbing the Gleevec.  Based on the results that showed it to be normal, the two oncologists stated that she should remain on 400.



#19 gerry

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Posted 28 October 2016 - 06:50 PM

I have been off Gleevec for 3 years now, still showing negative for blood tests. If your daughter can get through the first six months without losing MMR then there is every chance for her to remain treatment free for a long time. :-)

#20 gerry

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Posted 29 October 2016 - 01:04 AM

I always wondered why her oncologist and Dr. Druker both never felt that my daughter could drop the doseage of Gleevec to 200. For a period of time she had real bad eyebleeds that lasted for at least a week and came back after a few days. Dr. Druker had her oncologist do a special test to see how she was absorbing the Gleevec. Based on the results that showed it to be normal, the two oncologists stated that she should remain on 400.

https://www.ncbi.nlm...2/#!po=0.359712
https://www.ncbi.nlm...2/#!po=0.359712
Some articles on tests for levels of TKI in the plasma.




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