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1 Year Mark - Not at MMR

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#1 mdh54165


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Posted 19 September 2017 - 03:46 PM

How concerning is this? My PCR results over the last year are below.

3 months - 5.75%
6 months - 0.30%
9 months - 0.18%
12 months - 0.2%

Should I start thinking about a clinical trial? Switching drugs?

Onc has suggested increasing my dosage. Currently taking 80mg sprycel and he wants to increase it back to 100 mg.

Thank you.

#2 kat73


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Posted 19 September 2017 - 04:18 PM

Yikes, no! You're doing great!  No statistical significance between 0.18 and 0.2.  Many, many successful people on this site did not make MMR at 12 months.  Many, many successful people here have had plateaus, followed in a few months with a return to a downward trend.  The very real problem associated with higher doses of Sprycel is pleural effusion, which more than a few people get (up to 30%).  My advice is to stay the course at 80 mg and check the PCR again in 3 months and maybe again 3 months later before upping the dosage.  You are probably not eligible for any clinical trial since you've just started and you're having a successful response.  You also don't want to run through all the CML drugs quickly, but rather keep them in reserve if you ever have problems with your current drug later. 

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.



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Posted 19 September 2017 - 05:36 PM

Low hanging fruit. The drug knocked out the easy stuff first.
The more elusive fruit will take more time. Mabey a long time.
It's the "Lowering Plateau." As your numbers go down they slow down.
This is because disease activity becomes tiny. It's in the molecular level now.
Tiny movements are not dangerous. Only a few bad guys left. But they are elusive.
Now you have to think about the drug and it's toxicity to your body as you will be 
taking it for a long time. Always work to take only what you need to stay healthy.

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

#4 r06ue1


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Posted 20 September 2017 - 05:59 AM

You are probably hitting the plateau, look at my sig and you'll understand.  


As long as you are not going above 1% you are fine, just be patient.  ;)



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

#5 Silvertabby



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Posted 23 September 2017 - 04:11 AM

Slow and steady wins the race. I was diagnosed in September, 2013. I was at 11 percent at 3 months. My numbers were around .3 and .2 from about March, 2014 until December, 2014. In March, 2015 it was .159 I had a bit of a scare in June, 2015 when the test came back at .58 but the blood sample was suboptimal so they didn't think it was accurate. I finally reached MMR in September, 2015 - 2 years after diagnosis. For the past 2 years I have been at a plateau around .015 with 3 sporadic pcru results. I know it can be discouraging when the test results are not what we had hoped, but try not to let it get you down. Praying your numbers continue there downward trend for you.
Dx - 9/2013. IS QRT-PCR - 26.5
Gleevec 400 - 10/2013 to present
CCyr - 3/2014
MMR - 9/2015
PCRU - 12/2015
.01525 - 3/2016
.024 - 5/2016
PCRU - 8/2016
.015 - 11/2016
.015 - 3/2017
.015 6/2017
PCRU - 9/2017

God is in control. I will trust Him.

#6 JoshLee



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Posted 28 September 2017 - 06:54 AM

Just wanted to chime in and say that it took me 4.5 years to hit MMR and another 2 to get to where I am now 0.03. I freaked out about every test worrying about the worst and it was scary, but I am still here. And for the first time EVER i waited for my Onc to call me instead of me calling him for results. It gets easier mentally to not "live and die" by these numbers.

#7 Jan0080


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Posted 28 September 2017 - 12:49 PM

I live close to my Onc. I have my blood drawn on a Monday and my quarterly visit is scheduled for the following Thursday or Friday. When we meet, we not only can discuss side effects but we have the latest results and can discuss those as well. I know that the "standard" is to have a blood draw and meet the Dr. at the same time but I want to talk about my hopeful progress rather than discuss the weather. Always have your blood drawn early in the week - accurate results require the blood to not sit around over a weekend.
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!

Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.

#8 cmljax


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Posted 29 September 2017 - 08:34 AM

Kat is dead on correct - no difference between last 3 results as there is a +/- .5 log margin of error on most PCR tests. Too early to increase dose.  Your onc should know that your goal is to get to MMR and then start thinking about dose reduction.

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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