Jump to content


Photo

Maintaining major molecular response


  • Please log in to reply
24 replies to this topic

#1 tiredblood

tiredblood

    Advanced Member

  • Members
  • PipPipPip
  • 474 posts

Posted 27 September 2014 - 08:56 PM

0.000%  I was going to post the text of the report on here, but  I can't seem to even when I allow access to my clipboard.  My burning scalp issued has resolved.  This past incidence was the worst it has ever been.  Thank you all for your helpful suggestions.



#2 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 27 September 2014 - 09:36 PM

Actually CMR (Complete Molecular Response), and very good news.



#3 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 28 September 2014 - 09:34 AM

Glad your scalp issues are healed. Congrats on your results!

#4 SUE

SUE

    Advanced Member

  • Members
  • PipPipPip
  • 109 posts
  • LocationChicago

Posted 28 September 2014 - 09:49 AM

Congratulations!


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#5 Darlene_Jack

Darlene_Jack

    Advanced Member

  • Members
  • PipPipPip
  • 62 posts
  • LocationSusanville ca

Posted 28 September 2014 - 12:27 PM

Very good news. Congratulations. Gives me hope n I thank you for that
One breath at a time

Darlene jack...

#6 tiredblood

tiredblood

    Advanced Member

  • Members
  • PipPipPip
  • 474 posts

Posted 29 September 2014 - 08:48 PM

On this most recent PCR report, it states, "the P190 and P210 BCR-ABL1 fusion transcripts are not detected.  Reverse transcription real-time PCR is performed for the P190 and P210 BCR-ABL1 transcripts associated with the t(9;22) chromosomal translocation.

 

On previous reports, P190 was not mentioned. Would this mean that the doctor checked for some additional issue?  Or perhaps, he just clicked on a nearby box mistakenly when he placed the lab order.



#7 soundoff

soundoff

    Advanced Member

  • Members
  • PipPipPip
  • 129 posts

Posted 29 September 2014 - 11:11 PM

Congratulations!

Maybe one day I will join the illusive "undetectable" club. For now I'll take "unquantifiable" ;)

Soundoff

#8 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 30 September 2014 - 05:45 PM

P210 includes the b2a2 and b3a2 breakpoints and P190 is the e1a2 breakpoint for the Philadelphia Chromosome.  The PCR report simply states that all 3 are negative.  This is because most PCRs for CML test for only these 3 breakpoints.  Rarely the PCR only tests for the P210 variety since these comprise over 95% of all cases of CML.  Maybe previous PCRs did not test for P190 -- not sure.  There are other very rare forms of the Philadelphia Chromosome which regular PCRs cannot detect.  This has led to calling that type of CML "Philadelphia Chromosome negative CML" since standard PCRs do not detect those very rare breakpoint variants.

 

You can read more about the genetics of CML here (on Trey's Blog Special Topics page):

http://treyscml.blog...ics-on-cml.html


Edited by Trey, 30 September 2014 - 05:46 PM.


#9 jlegakis

jlegakis

    Advanced Member

  • Members
  • PipPipPip
  • 42 posts

Posted 11 February 2015 - 11:32 PM

I heard recently that undetectable is the ultimate goal, but what if you`re   at 1% or even a bit higher on your Bcr/ ABL? Some of us NEVER attain undetectable, so is their prognosis less positive? I am at 6 % after  1 year and it seems that in 3 mos . I could be below 0% , but doesn`t slow and steady win the race?



#10 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 14 February 2015 - 05:13 PM

If the PCR uses International Standard, a 2 log reduction is 1% (which is also roughly CCyR).  So it is something just north of that, not far from CCyR.

 

If you want something more precise, knock yourself out:
http://www.antimicro...alculations.htm



#11 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 14 February 2015 - 05:19 PM

I heard recently that undetectable is the ultimate goal, but what if you`re   at 1% or even a bit higher on your Bcr/ ABL? Some of us NEVER attain undetectable, so is their prognosis less positive? I am at 6 % after  1 year and it seems that in 3 mos . I could be below 0% , but doesn`t slow and steady win the race?

 

With CML there are a series of goals.  The most often used are CCyR (zero FISH or BMB, roughly 2 log reduction), MMR (3 log reduction), and CMR (zero PCR, roughly 4.5 log reduction).  At PCR undetectable (PCRU) there are still about 1 million leukemic cells in the body.  After initial PCRU the patient can continue to decrease the leukemic cell count down "toward" zero (zero leukemic cells in the body = cure).  So the real ultimate goal might be true zero.  Whether we can attain true zero is debatable.

 

Regarding prognosis, achieving and maintaining CCyR is very important.  Achieving and maintaining MMR is better, and PCRU is even better.  But if someone could stabilize at CCyR for a lifetime, that would be just fine. 


Edited by Trey, 14 February 2015 - 05:22 PM.


#12 JPD

JPD

    Advanced Member

  • Members
  • PipPipPip
  • 258 posts

Posted 14 February 2015 - 07:20 PM

My Onc said that there is "growing opinion" among "the experts" (his words) that maintaining anything under 1.0% is fine and dandy.  We'd all like to get to 00.0000, but his words lead me to believe that once we get underneath that one percent, if we can maintain it, then we're just fine.

 

Ill ask him more about it next time I see him.

 

 

Trey: if everyone gets to, say, 1.0% or .01% is thier particluar "log reduction" the same?  I get confused between the percentages and the reductions.


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%


#13 Antilogical

Antilogical

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • LocationPittsburgh, PA

Posted 14 February 2015 - 08:50 PM

JPD - I think your onc & my onc must be attending the same CML seminars!


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#14 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 14 February 2015 - 11:20 PM

If a person could maintain even a 1 log reduction (10% PCR) they could survive for a normal lifetime.  The problem is that unless we achieve deeper responses they are not normally durable.  That is why deeper is better, because deeper is more durable. 



#15 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 15 February 2015 - 04:06 AM

Unless there have been more studies since I threw my research hat away and got on with life, as I understand it the relationship between depth and durability is a little more complex.  "Deeper responses are more durable" is true up to a point, but if you look at what happens when you reach a level then it gets a bit more complicated.

If you ware just thinking in terms of 'U' shaped responses where someone gets down to a level and then loses response and goes back up again, then these are indeed less likely to happen the lower you get on the down stroke of the U.  For most people, however, the choice isn't between a U shape and a I shape (go straight down until you're off the bottom of the chart).  More common is the 'L' shape where you go down then stabilise.  The first half of the L looks like the first half of the U so when you get to the levelling off point you don't know for certain whether you are a U or an L -  and it is therefore fair to say that the deeper you are at this point, the higher the probability that you are going to stay down there.  Once you are down at the bottom though you hit the issue that narrow Us are much more common than wide ones - so the longer you stay down there the much more likely it is that you are actually an 'L' person and not a 'U' person.

Translating this into numbers, the usual rule of thumb on the depth or your 'L' is that MMR (3 logs or 0.1%) is virtually indistinguishable from PCRU in terms of risk of losing response so if you bottom out at that level or below and stay there for any time at all you can basically say you are in the lowest risk category.

If you don't make MMR and bottom out at CCyR (roughly 2 logs) then whilst the initial risk of being a 'U' is quite a bit higher,  once you've maintained it for 2 years the odds become pretty huge that you are actually a shallow 'L' person rather than a very wide 'U' one.



#16 patcanfield

patcanfield

    Member

  • Members
  • PipPip
  • 15 posts

Posted 28 February 2015 - 01:27 PM

i had lab work at mda feb 2 -2015 all blood work looked good but i don't understand realtime BCR,PB it says BCR-ABL Quantitative PCR PB      Negative then down below it reads Low Positive is < 0.01   BCR_ABL to ABL Transcripts High Positive is > 100.00 BCR-ABL to ABL transcripts                                                                                                                                                                                               REAL TIME BCR INTERP PB  t (9;22); BCR_ABL1 Translocation Assay by quantitative RT-PCR: No BCR-ABL1 fusion is detected by quantitative real-time   last mo i had my 3rd bone marrow and it said i was in remission and i asked dr. and he said it was in remission in mr bone marrow but not my blood, so what does this pcr and BCR-ABL mean. .



#17 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 28 February 2015 - 10:00 PM

Your PCR is zero.  The other stuff just explains how a PCR is done, and it is NOT your individual results.  You are PCRU.  In both your marrow and blood they cannot detect leukemia.  You have CML, but you are beyond its grasp.



#18 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 28 February 2015 - 10:06 PM

In your bone marrow sample, there were no cells with the Philadelphia chromosome (9:22) detected.  The Philadelphia chromosme is a telltale sign of CML.  So in the marrow sample, your chromosomes all looked normal.  You reached a Complete Cytogenic Response (i.e. CCR or CCyR). 

 

A PCR (Polymerase Chain Reaction) is a machine that detects the BCR-ABL1 fusion protein (the other telltale sign of CML) in blood withdrawn from a vein (called PB or periferal blood).  BCR and ABL1 are proteins found in blood, but they shouldn't be fused together.  RT-PCR (Real Time PCR) is the most common machine labs have to detect how much BCR-ABL1 is floating around in your blood. 

 

From what you report, it appears the RT-PCR they ran came back 0 (or negative) Feb 2nd.  I have never seen "then down below it reads Low Positive is < 0.01   BCR_ABL to ABL Transcripts High Positive is > 100.00 BCR-ABL to ABL transcripts", but I have seen tests that mention the RT-PCR sensitivity limit of assay (test) is <0.001 leukemic cell in 100,000.  Maybe your lab reports the range it considers a low or high PCR like a white blood count our something.  I have never seen this though. 

 

Last month, your PCR may have been above 0, so your doctor told you the CML was still detectable in your blood.  There is no remission in CML.  There is only detectable and undetectable.  Even PCRU, CMR, PCR zero, negative, call it what you will, does not mean absolutely no leukemic cells.  The test (PCR) is not sensitive enough to detect anything lower than <0.001 (which is so low, it is essentially like zero anyway).



#19 patcanfield

patcanfield

    Member

  • Members
  • PipPip
  • 15 posts

Posted 01 March 2015 - 12:07 AM

 Thanks so much to Trey and Tedsey, i am so excited



#20 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 01 March 2015 - 12:26 AM

Great news patcanfield! And it's great we have people with the background to decipher all of this!
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




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users