10 replies to this topic

[amurray]

Hi, Gotta question about FISH results. I had negative FISH in Oct.  which made me happy to say the least. In April, my following result was 3% which is low but I do not like the fact that it went from negative to positive. I am on sprycel and take it faithfully. Anyone have any thoughts on this??  Thanks, Amanda

[PhilB]

You'll want Trey for a proper answer, but I seem to recall that FISH has a false positve rate of around 5% so probably not time to panic yet.  If memory serves the FISH dyes the BCR and the ABL separately, one red the other yellow, then looks for an orange to indicate the two are together.  That may mean a BCR ABL, or it may just mean a BCR and an ABL that happen to be next to each other.  Do you have PCR results from the same samples?

Phil

[Trey]

I also would like to know if you have been having PCR testing done as well.  Some FISH tests are more accurate than others.  I would also repeat the FISH test sooner than normal.

[amurray]

In October my pcr was .003, i think that was drawn the same day as the negative FISH. They did not do a pcr with the one in April when the positive FISH came back. I feel like i am being abit dramatic  with the worrying butif the FISH is accurate then it is still growing and that I do not like a bit. I try to stay on top of evrything with cml because I have two beautiful babies I must stay healthy for. It is a blessing to have such wonderful people to ask  queestions to Thanks Phil and Trey, God  Bless You. Thanks  Amanda

[CallMeLucky]

Were both samples on peripheral blood or were either on Bone Marrow?

You should question why a PCR was not done this time around.  Given the fact your last FISH was negative, the assumption would have been that this FISH would be negative too, making the need for PCR greater, you need to understand why it wasn't done.  If it were me, I would request a re-test for FISH and PCR. Better to be safe and the fact is you should have had a PCR.

[Trey]

In that case your Onc should want to do a PCR very soon to see if the PCR shows a sign of reversal.  The FISH testing should have been stopped with the PCR as low as it was.

[amurray]

Both were done with blood. i know the FISH should have been stopped. My thoughts are that with the FISH positive as long as it  is accurate then the pcr would have gone up a good amount. I was suppose to go back in 6 months, kinda long it seems, but i requested to go at the 3 month mark in July. Do you think that is soon enough?

[CallMeLucky]

I don't agree the FISH should have been stopped.  Both tests should have been performed.  Given the fact the FISH was positive and no PCR was done, I would go back now (not today, but in the next couple of weeks) and get the test repeated.  I'm not telling you to do this, I'm just saying if it were me, that is what I would do.  I don't think there is anything to worry about, Phil was correct about the 5% false positive on the FISH, but that is why the PCR would have been go to see.  Chances are the repeat FISH would be negative and all will be good.

[amurray]

Thanks, I think I will to put my mind at ease and If anything is going on then I would like to take care sooner than later.

[Trey]

Your FISH went negative in October (CCyR) and the PCR was low, so the FISH can be stopped when CCyR is reached.  FISH is less accurate at low levels -- some FISH have 5% error rate, some 2%, and some less than 1%, so it depends on which one your Onc used.

If it were me, I would have a new PCR done now.

[amurray]

Thanks Trey, although it could be a mistake, I play on the safe side. i sent messages to my onc requesting a new appointment sometime in the next few weeks  as well as requesting a pcr done. I have learned that I am my best advocate,I am not fighting as much for me to be healthy as much as for my babies to have  a healthy mommy. CML is  a strange disease and although it can be chronic and completely controlable I never let it escape me that it can be life-threatening.