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"Undetected"

Started by scuba , Jun 22 2017 12:38 PM

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#1 scuba

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Posted 22 June 2017 - 12:38 PM

Finally - after being told that PCR < 0.01% is indistinguishable/same as PCRU or "undetected", I received my three month PCR test and it came back with the word "undetected". I was told I was PCRU before, but never in print direct from the lab as 'undetectable'.

 

The good news for everyone here who takes Sprycel - I achieved this milestone while taking only 20 mg.

I continue to take only 20mg and will test cessation again if I remain "undetected" through the end of this year. At that time I will stop / or lower my dose further to 10mg (will require special order) ... or perhaps 5mg to see how low a dose I can take and still maintain this response as I lead up to my second cessation attempt.

 

I see a scotch in my future tonight.


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"

#2 cmljax

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Posted 22 June 2017 - 01:48 PM

Congrats M. Like you, I'm not sure if there is really a difference, but the sound of undetected is a whole lot better.  Have an extra glass of scotch for me.


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

#3 scuba

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Posted 22 June 2017 - 02:20 PM

Congrats M. Like you, I'm not sure if there is really a difference, but the sound of undetected is a whole lot better.  Have an extra glass of scotch for me.

 

dram-whiskey.png

 

maybe more than one ... 


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"

#4 gerry

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Posted 22 June 2017 - 04:56 PM

Congratulations Scuba

#5 kat73

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Posted 22 June 2017 - 05:36 PM

Oh, Scuba, that's wonderful!  As I've said elsewhere, I once asked my onc about all this hair-splitting down there in DMR-land and what was good enough to be considered undetectable yadda yadda, and he pounced and hollered, "If it's undetectable, it will SAY undetectable!"  Period.  We all know that it depends on the sensitivity of the test itself and whether it's a crescent moon in a month with a J in it, etc., but the word is the word we all want to hear.  Yay.


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 scuba

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Posted 22 June 2017 - 09:55 PM

According to M.D. Anderson - my clock for cessation has started with this result. They actually told me that if I hold this result for two years, then they will discontinue Sprycel. Of course, I can discontinue any time I want, but then have to have a PCR check every month. Going in for a blood draw once a month is not my idea of a good time.

 

I am thinking about lowering my dose to 10mg next. 


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"

#7 AdamJ

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Posted 22 June 2017 - 10:10 PM

Congratulations Scuba, that is fantastic news and reinforces my desire to pursue a lower dose of Sprycel.  I am almost certain that 20 would be adequate for me, but I would see any reduction as an improvement. I plan to ask for a reduction to 70mg at my next appointment.

 

As a side note, is there anyone who lives in or around NYC who is working with an Onc that supports dosage reduction?  If so and it is not against policy to mention a name, please let me know either here or by PM.  Hopefully I will have luck with my current Onc, but it is good to have a backup plan ;)


3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU

#8 Melanie

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Posted 23 June 2017 - 12:31 AM

Congrats Scuba! Such great news and on such a low dose!

At MDA is undetectable beyond 4.5 log reduction?
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#9 M.A.

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Posted 23 June 2017 - 05:12 AM

Woo Hoo! Fantastic news Scuba!!!

 

Reading about your journey has helped so many of us... thank you for continuing to share it. I have my fingers crossed for you that the 'undetected' word keeps appearing in your blood test results!


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

#10 Cathy

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Posted 23 June 2017 - 08:10 AM

That is excellent news! Congratulations! I'm following your results since I've been on Sprycel for over 6 years I've been on 70 mg and have been wanting to lower it to help with side effects. Then out of the blue I got my first PE and just had a liter drained from my lung and waiting for the right side to diminish to go back on Sprycel. He wants me to change but I want to stay on Sprycel and just go lower dose! Waiting on my PCR I've been off my drugs 3 1/2 weeks when they drew the blood. I'm curious what my numbers will be they  have always jumped around. I've been MMR for about 9 months only but just bearly.

 

I feel absolutely amazing though I've been off Sprycel for a month I feel like I did 7 years ago! Before CML!! So I'm pushing to go back on 50 or maybe 20 and my onc is thinking about it and is agreeable now. So I'm pretty happy!

 

I will do my history I keep forgetting to do that.

 

Dx 2010- Gleevec 9 months stopped working

Tasigna pancreases after 4 pills

Sprycel  7 years up and down big time! 100 mg then 50 numbers went up then 70 mg past 1 year or so

 

Congrads.... I'll have a glass of wine to cheer you tonight!

 

Cathy


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 

#11 scuba

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Posted 23 June 2017 - 10:05 AM

Congrats Scuba! Such great news and on such a low dose!

At MDA is undetectable beyond 4.5 log reduction?

 

At MDA "undetectable" is undetectable - zero bcr-abl detected using Qt-PCR. If "any" bcr-abl is detected, but below the precision of the technique, it is reported as "< 0.01%". It is noteworthy that a formal cessation attempt is not conducted at M.D. Anderson unless a patient is "undetected" for two years. Informal cessation attempts are done, however, all of the time, whether for adverse event management or because patients like me wanted to try. 


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"

#12 Kali

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Posted 23 June 2017 - 03:15 PM

Awesome news Scuba! It is inspiring to follow your journey. Hope you soon are off the medication completely and with great success!

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%

#13 TeddyB

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Posted 24 June 2017 - 09:06 AM

Congrats scuba!!

I will raise a glass in your honor tonight :)


#14 campanula

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Posted 24 June 2017 - 10:33 AM

At MDA "undetectable" is undetectable - zero bcr-abl detected using Qt-PCR. If "any" bcr-abl is detected, but below the precision of the technique, it is reported as "< 0.01%". It is noteworthy that a formal cessation attempt is not conducted at M.D. Anderson unless a patient is "undetected" for two years.

Congratulations!  Seems this is the new "standard," as my doctor has been pitching the same line.  I'm not there (yet) but stories like yours are an inspiration.  Thanks for your insight and dedication to this forum.


Dx 2/16: PCR = 59.4%

BMB showed second translocation.

400 mg generic Imatinib

5/16:  PCR = 0.88%

8/16: PCR = 0.04%

11/16 PCR = 0.01%

2/17 PCR < 0.01%

2/17 BMB results:  all translocations gone.

6/17 PCR = 0.03%

9/17 PCR = 0.01%

1/18 PCR = 0.01%

 

 

#15 mdszj

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Posted 24 June 2017 - 05:40 PM

Awesome Scuba!!  I just checked in here and saw this thread.  Hope its not to late to hoist a couple to help celebrate - hey any excuse will do!!  Even tho there may not be much practical difference between undetectable and a small quantified value I can tell you that the word "undetectable" takes a big weight off but I guess you already know that at this point.


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

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