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#61 M.A.

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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


#62 Buzzm1

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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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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


#63 kat73

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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.


#64 Buzzm1

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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/1IbwZuh2011

treated only with imatinib; MR4.5 DMR of at least 2 years duration;. median age 61, 62 men. 62 women
76 of 124 (61%) remained treatment free ... However 41 experienced a BCR-ABL RQ-PCR fluctuation without clear molecular relapse. In this so-called-fluctuation group of patients, 7 were found positive once, 6 twice, 12 patients between 3 and 5 times, 10 patients between 6 and 10 times and 6 patients more than 10 times confirming that BCR-ABL reappearance does not mean automatically clinical relapse.

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


#65 M.A.

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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


#66 Buzzm1

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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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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


#67 mdszj

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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


#68 Buzzm1

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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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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


#69 Buzzm1

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Posted 14 October 2017 - 06:43 PM

Gail's Cessation

 

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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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


#70 Buzzm1

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Posted 14 October 2017 - 06:52 PM

Lori's okay Cessation 

 

Cessation 11-03-2017

 

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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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


#71 kat73

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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.


#72 mdszj

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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


#73 Lori's okay

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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

 


#74 rcase13

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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)

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!


#75 tiredblood

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Posted 23 October 2017 - 04:40 PM

What would increase my anxiety would be to finally begin to feel better and then have to restart the TKI.

#76 gerry

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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.



#77 Gail's

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Posted 24 October 2017 - 12:13 PM

Many feel anxious about their bcr-abl numbers while on tkis. I was not that way, always felt confident that these powerful drugs would work, and if one didn't I'd try the next. Well, my anxiety about my levels reared its ugly head when I tried cessation. With each test got a little more stressed. I so hoped to stay off the drugs. Now that I'm going back on drugs, I'm sad I'll lose the energy and less pain while off tkis. Oh, well, life isn't always fun.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#78 DebDoodah22

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Posted 24 October 2017 - 04:58 PM

Gail
sorry for your stress. I hope 50 works out for you. l i have never experienced cessation, but the level of side effect relief when reduced to 50 mg was wonderful.
At first, i even experienced a lot of fatigue relief....that fatigue has crept back up somewhat, but is still so much better than when i was on 80.
People even remark how much better i look and the brain fog has abated substantially. I am pushing to reduce to 20 but unless side effects warrant doing otherwise, i will stay at 50 until at least February 2018, provided my response holds at .02 in August 2017, although it was .01 in May. 2017 MDA Scale.

#79 ROMO

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Posted 25 October 2017 - 03:52 PM

Gail. 
 
I also have stress. It's as bad as the CML.
The medicine worked good, I look the same
I almost have the same energy but my mined is
not healthy. It is sad. We are body and mind.
 
The odds of your progression have not increased.
You have a treatable infection. It's a drag but that's all it is.
I am actually a nicer guy now because I know the difference between
small things and big things.
Small things are day to day stuff. Big things are people we love.
You will go back to diseases control. You lost nothing.
Take some time and try again.
 
Romo

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
 

#80 Gail's

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Posted 26 October 2017 - 01:22 AM

Thanks for the king comments DebDoodah and ROMO. I just think it's funny that I was so focused on adjusting to the TKI when I first started taking it and was feeling miserable side effects. The numbers didn't worry me a lot. My worry over the numbers didn't start till I was off the drugs and really, really wanted to stay off. Guess there's going to be a little anxiety with CML, either over feeling bad or worrying about test results!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088




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