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Results from Testing 3 months after Diagnosis

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#1 LouiseS



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Posted 09 January 2018 - 03:39 PM

I wanted to share my husband's testing three months on from diagnosis. I am sorry I haven't set up a signature yet and would appreciate advice on how to do this.

We were really happy with his results as was his doctor. He has been on 100 mg of Sprycel since first week in October. Almost no side effects apart from a very occasional headache if he didn't drink enough water that day and he is getting some spots on his chin. One weekend only feeling hoarse and hearing affected as well. But otherwise feeling now how he did 6 months before diagnosis.

At diagnosis his wbc was at 239.6 , his spleen was extended and his ABR was at 89.427 IS. This week's results show that having fallen to 0.743 (IS) All his other results show everything is where it should be or almost there. Platlets are at 176 on a range of 150-400 k/ul.

His doctor is hoping that he will reach 0.1 in 3 months when he is next tested.

I was really keen that he reduce his Sprycel dosage asap but is it best to wait another 3 months and hope he can reach MMR before reducing, as long as he continues to tolerate Sprycel as well as he has done so far?

Finally thank you to Trey, Scuba and Buzz and everyone else who has answered my questions or just allowed their stories to be told here. Finding this forum has provided so much knowledge but also so much comfort, esp in the early dark days when he was first diagnosed. I am so thankful and grateful.

#2 Buzzm1


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Posted 09 January 2018 - 03:49 PM

Louise, your husband is doing great.


to add his history/status into your signature

upper far right, click on the drop down menu after your name..

select My Settings ..

on left-side, select Signature

scroll down, enter history/status info, Save Changes

thanks for participating.

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


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

#3 Lucas


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Posted 09 January 2018 - 03:58 PM

great result! 2 logs in 3 months is awesome!

#4 Trey


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Posted 09 January 2018 - 05:23 PM

His doctor is hoping that he will reach 0.1 in 3 months when he is next tested.


That is very optimistic.  Most do not achieve .1% (which is MMR) within 6 months.  12 months is more reasonable, and hope for better.

Edited by Trey, 09 January 2018 - 09:48 PM.

#5 scuba


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Posted 09 January 2018 - 05:24 PM



Your husband is doing great. He should continue to experience a sharp drop in PCR below 0.1% likely by next test. 


Cutting dose now is certainly an option. It may or may not slow his response. He might very well continue to see his PCR drop significantly even on a much lower dose (as I experienced). Staying the course for another 3 months and then verify PCR below 0.1% is a good plan. Cutting dose to 50 mg and "test" cutting dose still enabled him to have significant PCR drop is also a viable plan. It is a question of how comfortable he is in doing so. I would not go below 50 mg until after PCR < 0.1% - then dropping to 20 mg is even possible.

Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein


Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.


2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"

#6 kat73


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Posted 10 January 2018 - 11:26 AM

Louise - My doctor would disagree with cutting dosage unless side effects warrant it, and then only if sufficient control of the CML has been established. 

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 cmljax


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Posted 11 January 2018 - 10:43 AM


Look at my signature.  Due to multiple side effects, my oncologist permitted 3 dose reduction during my first year of therapy.  The first was after I reached MMR.  He would not have allowed any dose reduction had I not had these multiple side effects.  Different oncologists have different approaches to dose reduction.  My unprofessional opinion is close to Scuba's  and was significantly influenced by him.  I believe that we should be on the lowest possible dose that allows us to maintain acceptable response (probably .01% IS or better).  We are incredibly fortunate that TKI's exist, but they have potentially significant other adverse effects that can be reduced in the short and long term by dose titration. 


As everyone else has said, your husband is doing great.  As long as the adverse side effects are minimal, I'd give the 100 mg dose more time to get him to at least .1% before discussing dose reduction with his oncologist.  Good luck to him and bless you for being his caretaker. 

Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative

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