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Loss of Response?


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#1 kavis

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Posted 26 October 2015 - 09:57 PM

Team:

 

I just passed my 9 month checkpoint, here are my numbers:

 

Diagnosis - 76%

3 month - 1.7%

6 month - 0.01%

9 month - 0.41%

 

My onc is making me redo the test to see what's what, he said it's possible 6 or 9 month were off, but he's also concerned at such a large leap (%) if it's accurate.

 

Anyone experience this?  I know lots of people jump around but mine seems to have made 2 big jumps (down then up) already.  I'm on 300mg Tasigna.  He's also ordering mutation tests for this next round.

 

Little bit worried, I know I have options but based on trend I was hoping for PCRU, instead I'm facing potential loss of response.


Male, Dx Jan '15 in Chronic Phase at age 35

Tasigna 600mg

 

PCR highlights:

1/10/15 - 74.8%

April '15 - 1.7%

Oct '15 - 0.48%

Mar '16 - 0.24%

Apr '16 - 0.08%

July '16 - 0.09%

Oct '16 - 0.06%

Jan '17 - 0.0684%

April '17 - 0.08233%

July '17 - 0.034407%

Oct '17 - 0.043

Jan '18 - 0.028

 


#2 chriskuo

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Posted 27 October 2015 - 02:07 AM

Are you taking 300mg daily or twice daily?  The standard dose is 300mg twice daily.



#3 kavis

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Posted 27 October 2015 - 07:02 AM

Yes, 300mg twice daily, standard dose


Male, Dx Jan '15 in Chronic Phase at age 35

Tasigna 600mg

 

PCR highlights:

1/10/15 - 74.8%

April '15 - 1.7%

Oct '15 - 0.48%

Mar '16 - 0.24%

Apr '16 - 0.08%

July '16 - 0.09%

Oct '16 - 0.06%

Jan '17 - 0.0684%

April '17 - 0.08233%

July '17 - 0.034407%

Oct '17 - 0.043

Jan '18 - 0.028

 


#4 Lucas

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Posted 27 October 2015 - 09:56 AM

kavis, my feelings are that you should wait for the new result. you must watch de trend and not a particular result. you had a big drop from from 3 to 6 months - more than two logs - and maybe that six month result was a failed result. good luck!



#5 kat73

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Posted 27 October 2015 - 10:59 AM

kavis - It's really, really early days for you.  Please don't worry!  I had one or two big jumps back and forth like that, but ultimately the trend has been downward.  But we're talkin' 6 YEARS, not months!  There are a lot of reasons for one or the other test to have been different, and remember that it's a snapshot, not an immutable number, and subject to imprecision as well.  At this time, you just want to stay somewhere to the right of that decimal point!  Try to get your mind off it all while you wait for the retake. And let us know.


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.


#6 JPD

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Posted 27 October 2015 - 12:09 PM

you also need to be aware of the control cells (blah blah blah whatever, have Trey explain further).  If there is a low amount of aforementioned control cells, the test is not as accurate. 

 

Id give my right testie to be at .41%... but I understand the fear of the jump.  As someone just recently told me - have a nice cool beverage and don't sweat it. 


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#7 rcase13

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Posted 27 October 2015 - 02:30 PM

I think CML is a cruel government study on how people handle stress. I have obviously failed. I am also on Tasigna and my numbers took a smaller jump up and it freaked me out to no end. I'm convinced I will die tomorrow.

 

Some how we have to just keep calm and carry on. Let me know if you figure out how do that. Meanwhile somehow despite being sure I will croak tomorrow I have to keep working like nothing is wrong.

 

But this forum does help. Its always nice to know others are in the same sh$t pot I am.


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!


#8 kat73

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Posted 27 October 2015 - 03:06 PM

rcase - You most assuredly got an LOL out of me just now.  Great description: "a cruel government study on how people handle stress" - ain't that the truth.  There is such a vast wasteland of unknowns - we're all guinea pigs.  I guess we'll have to keep checking in for the next twenty years to find out anything at all.


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 Trey

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Posted 27 October 2015 - 06:46 PM

The 6 month result is likely inaccurate.  Unlikely you had that big a drop in that timeframe.



#10 tiredblood

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Posted 27 October 2015 - 07:00 PM

I think CML is a cruel government study on how people handle stress. I have obviously failed. I am also on Tasigna and my numbers took a smaller jump up and it freaked me out to no end. I'm convinced I will die tomorrow.

 

Some how we have to just keep calm and carry on. Let me know if you figure out how do that. Meanwhile somehow despite being sure I will croak tomorrow I have to keep working like nothing is wrong.

 

But this forum does help. Its always nice to know others are in the same sh$t pot I am.

I love your post, rcase13.  You made me smile.



#11 kavis

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Posted 27 October 2015 - 07:01 PM

Thanks folks...it's definitely a roller coaster, nice to know I have riders with me


Male, Dx Jan '15 in Chronic Phase at age 35

Tasigna 600mg

 

PCR highlights:

1/10/15 - 74.8%

April '15 - 1.7%

Oct '15 - 0.48%

Mar '16 - 0.24%

Apr '16 - 0.08%

July '16 - 0.09%

Oct '16 - 0.06%

Jan '17 - 0.0684%

April '17 - 0.08233%

July '17 - 0.034407%

Oct '17 - 0.043

Jan '18 - 0.028

 


#12 soundoff

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Posted 28 October 2015 - 01:38 AM

Personally I'm glad international scale wasn't around when I was getting PCR results early on.
Once I hit FISH negative it was log reductions we watched. But with the new scale everyone hangs on these numbers. It took me years to get to MMR. 5 year's to get PCRU.

#13 kavis

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Posted 01 November 2015 - 08:50 AM

Ok, retested and came back at 0.31 - so here are my numbers

 

January - 76%

April - 1.7%

July - 0.01%

October 12th - 0.42%

October 26th - 0.31%

 

Mutation analysis is not back yet, but my doc is thinking it's very probable that July test was just wrong.  If you eliminate that test the rest of the numbers make sense?  

 

Waiting on mutation and supposed to go back first week of December, continuing the usual does of Tasigna till then, we'll see.


Male, Dx Jan '15 in Chronic Phase at age 35

Tasigna 600mg

 

PCR highlights:

1/10/15 - 74.8%

April '15 - 1.7%

Oct '15 - 0.48%

Mar '16 - 0.24%

Apr '16 - 0.08%

July '16 - 0.09%

Oct '16 - 0.06%

Jan '17 - 0.0684%

April '17 - 0.08233%

July '17 - 0.034407%

Oct '17 - 0.043

Jan '18 - 0.028

 


#14 rcase13

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Posted 01 November 2015 - 09:28 AM

Is it possible for a stem cell to suddenly get excited and start pumping more and calm back down or burn out?

Who knows... frustrating. I am glad your on the way back down. Keep us updated so we can better understand these scary episodes.

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!


#15 kavis

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Posted 23 January 2016 - 01:22 PM

Update on PCR results:

 

January - 76%

April - 1.7%

July - 0.01%

October 12th - 0.42%

October 26th - 0.31%

December 7th - 0.18%

January 18th - 0.24% (1-year test)

 

Seems like two things:  the test in July was BS, and I have basically plateaued.  Onc says it's nothing abnormal, so pushing off until April to see what happens next.  


Male, Dx Jan '15 in Chronic Phase at age 35

Tasigna 600mg

 

PCR highlights:

1/10/15 - 74.8%

April '15 - 1.7%

Oct '15 - 0.48%

Mar '16 - 0.24%

Apr '16 - 0.08%

July '16 - 0.09%

Oct '16 - 0.06%

Jan '17 - 0.0684%

April '17 - 0.08233%

July '17 - 0.034407%

Oct '17 - 0.043

Jan '18 - 0.028

 


#16 Trey

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Posted 23 January 2016 - 02:59 PM

Agree.



#17 Cool Hand Leuk

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Posted 24 January 2016 - 01:00 PM

welcome to the plateau, I have been here for at least 9 months , I feel like "me and all these other dice bouncing around in a cup" . when my results started to flatten out is stopped all supplements. and now I have resumed the 7000IU of vitamin D3 to see if it helps. My hematologist is also doing a mutation test to see if that has happened. I feel fine most days so really I am thankful for that.

#18 kat73

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Posted 24 January 2016 - 03:55 PM

kavis - Thanks for getting back to us.  Your numbers make perfect sense, and you're on target for hitting MMR (0.1) at 18 months, or about the time of your next testing.  That's where the NCCN guidelines want you.  I didn't hit that until 22 months, but nobody suggested a mutation test.  I think it's your garden variety plateau, where the low-hanging fruit CML cells have been killed off, and there's a pause while the TKI is working hard on the ones higher up, which are harder to get (or rather, take more time).  Your trend is downward, which is great news and the main thing. 


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 xGunner

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Posted 26 January 2016 - 09:33 PM

I had one set of test results that were not done correctly, and showed 0% . The sample had sat around for awhile, and the test results did not mean anything. I also got the test results back for a different person one time.

 

We like to see zeros, but early on the number may bounce around a bit. Be optimistic, but realistic.

 

We assume everything is done correctly, but verify that the test results make sense.






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