16 replies to this topic

[mariebow]

Got a call from my nurse from the doctors office with the results of bmb,bma and she told me that I was in remission.  I was happy but wanted to see the results myself to look at it before I got too happy. received the letter today and it stated"   Fluorescence in FISH studies were performed using the BCR/ABL  1 Dual Color,dual  fusion probe set.  (Abbot) This probe set is used to detect the 9:22 translocation, A Fish probe for 9q34(ASS1).centromeric to ABL1, is included in the probe cocktail to evaluate deletion of the 9q34 region.

    In the present study a total of 500 interphase nuclei were manuall scored for all probes.  Additional cells wre scored in order to increase test sensitivity in the detection of minimal residual disease. There was no molecular cytogeetic evidence of a 9:22 translocation or a 9q34 deletion.

  Interphase FISH was performed to screen for the loci indicated above and does not detect other chromosomal abnormalities.

  Additional studies:  Cytogenetics, CG13-013207,Molecular,MOL13-009304,BCR/AB;              CSI Laboratories

   Results; nuc ish(ASS1,ABL1,BCR)x2(500)

Probes     BCR/ABL1 with ASS(9:22)  #Abnormal Nuclei   

5 of Sample 0.00

Abnormal Range>1%

the note on my report says in cytogenic remission, has low level residual disease.                 I would appreciate feedback from anyone. Thanks

[Trey]

That is a negative FISH which is CCyR.  But your previous threads showed you had already attained a 3 log reduction, so you were already  MMR several months ago.

http://community.lls.org/thread/18580

I wish I could say your nurse knows what she is talking about by declaring you are now "in remission", and that your Onc had done the right test, but both would be inaccurate.  So I will only say that both did and said dumb things.  There is no reason to have a FISH done after CCyR is attained, let alone after MMR.  Sorry to say these were not very smart moves by your Onc and his trusty side-kick nurse.  And I am also sorry to have to declare such people to be dummies.  That should not be necessary.  It is a good thing our drugs work so well, since we are often treated by people who lack sufficient skills and/or knowledge.

But the good news is that you have done very well, and we celebrate that with you.  So congrats on doing so well. 

[Susan61]

Hi Marie:  I am so bad with all the intricate terms, even after all this time.  I see the Zero's, and thats good enough for me. Now that you got into a cytogenetic response, they should just be doing the PCR testing through your blood, and no more BMB.

  CONGRATULATIONS!!!  Enjoy your great news.

Susan

[mariebow]

Trey you always so straightforwardl  I know you know this stuff.  I am glad that there are learned people  here. Thanks

[mariebow]

Oh wow Susan now that is good to hear.   Thanks

[mariebow]

I admit I know more about CML today than a year ago, but there is still things I do not know.  So CCYR is the best phase you can be in in leukemia. 

[Susan61]

Hi Marie:  Like I say Trey can break things down the best on these things, but CCYR is the first phase that you get to where all your numbers come back to normal.  They call it remission, but actually its a response.  CCYR is not the best response, its the beginning of getting to the best response which is PCRU> Then if you read everyone else's posts you can see they are trying to get to a PCRU status.  Thats where they absolutely see no cancer cells after checking millions of more cells in your blood. A PCR test is more accurate than a FISH.  For instance I had no trouble getting to the CCYR after starting my Gleevec, but there was still a trace of cancer cells there until I got to PCRU where they cannot detect any cells anymore.  It does not mean we do not still have cancer cells there that could stir up again, but when you get to PCRU the chance of that happening is not common.  Try not to absorb too much if you do not understand it all.  You got to the first stage, and that is very important.  I know people who have lived with CML for many years, and never got to PCRU, but they are stable and the disease is not progressing.  Thats why I say now that you got to a CCYR , they should just be doing a routine blood work every 3 months, and then every 6 months get a routine blood test along with a PCR test.That should give them all the information they need.  I have only been doing PCR testing since 2001 or 2002, no more BMB.  The only time they should do a BMB on you is if they see your losing your response, and they think there could be a mutation that your TKI is not working anymore.

   I can only explain it the way I just did.  I cannot get into all the numbers and breakdown of how it all works, and thats why I say Trey can do that for you.

  I am satisfied just knowing the basics of how it all works which is what I just tryed to explain to you. I hope I did not confuse you, and made it a bit clearer for you to understand.  I am sure someone can add more to what I just said.

Susan

[mariebow]

You made it very very clear thank you.

[mariebow]

I am putting this into my important papers so that I can go back to it.

[GerryL]

Hi Marie,

As per Trey's comments re one of your earlier posts which showed you had achieved MMR which is the next milestone after CCyR.

Not sure why your nurse is giving you information on a milestone which you have well and truly passed.

[mariebow]

I am realizing now, that they are not very well learned in CML.   I thought I knew enough about my diagnosis to being informed of my treatment, but I did not.  Thinking seriously about changing docs,

[GerryL]

Hi Marie,

For the majority of us, we are going to be spending years with our doc, you need to be with someone who knows what they are doing and who you are happy with.

[Susan61]

Hi Marie:  I just read Gerry's response about a prior post from Trey that you were at a MMR status.  See I missed that,and thats why I say follow Trey and others who know more.  I thought you had only gotten to CCYR.  Your doing even better than what I had said.  You should not have any problems at this point.

    I do not get on here as much as I used to, so that I can follow things better.

[mariebow]

Yes this is true GerryL going through a needless bmb is bad  and stressful enough, not even mentioning quality care. Thanks

[mariebow]

Thanks Susan and everyone I am glad that I found this site, 

[LivingWellWithCML]

And even better news is that CCyR is the most significant prognostic indicator of progression-free survival, so when one reaches and maintains a stable CCyR, then that patient will likely do fine over the long haul.  A deep molecular response (MMR or better) is icing on the cake, but some patients who reach CCyR fairly quickly could take years to reach a solid MMR and still be healthy and doing just fine.  Definitely celebrate the swift response you've had to treatment!

[mariebow]

Thanks Dan   all this is good to know.