7 replies to this topic

[luvmybees24]

Ok I don't even know what tests I had done. I have had CML for 3 mths and I think it was a PCR? It is to check for leukemic cells. I will get the results tomorrow I think. He said if it comes back ok I will continue on my dosage of Tasigna until the bone marrow biopsy in May where they will evaluate it again. I said "Well what if it's not good?" and he said "We will discuss it then" and then patted me on the shoulder. So what HAPPENS if these still show leukemic cells? I'm scared. My actual oncologist appt isn't until March 16 but I can go pick up the blood results from my general dr. when they come in.

[Marnie]

Hy, bees . . .you want to see a downward trend in your PCR test results.  People's PCR numbers vary a lot.  Some people are rabbits while others, like myself, seem to be turtles.  The trend, over at least 3 tests will give you a pretty good idea of how well you are doing with your med.  Be sure to get copies of all of your test results to bring home.  That way, as you learn more about the disease, you can track your own progress, and not have to rely on what your doctor tells you in order to know if you are doing o.k.  It takes awhile to learn everything, but you will get there.  Good luck!  Try not to be scared.  CML is (for most people) controllable, though it is certainly stressful to wait on test results.

Marnie

P.S.  Just wondering if you are a bee keeper.  My brother-in-law has hives.  We always look forward to honey and candles as a Christmas gift!

[luvmybees24]

Hee hee no. The name comes from a nickname my friends and I called each other when we were like 24. We called each other "B" and it's just an easy username for me to remember. My brother does process honey though and his neighbor has the bees.

[CallMeLucky]

At three months you should have a CBC, FISH, and PCR test.  The CBC should hopefully show your blood counts are in normal ranges.

The FISH test looks at a sample of blood cells, usually between 200 and 500 and looks for the Philadelphia chromosome.  The test results come back as a ratio of PH+ cells to non-PH+ cells.  The lower this number the better and it should be an improvement upon the one they did at diagnosis, assuming they did one.  If they did not do a FISH at dx, but they did a bone marrow biopsy, you can compare the ratio of PH+ cells in the BMB to the ratio from the FISH and get a good idea of improvement.  Most people at Dx are in the upper 90% range to 100%.  After three months on TKI drug you would like to see that number coming down.

As for the PCR test, it really isn't a good test to be looking at this early on.  Your doctor should be looking at cytogenetic tests (FISH) at this point to determine how well you are responding.  In general you always want to see your PCR number going down from the benchmark that was established at your diagnosis.

If your tests come back "bad" then you need to assess what that means.  Hopefully they did a FISH because without it, its hard to determine what bad really means.  A PCR can jump around early on when there are a lot of leukemia cells in the blood, I would not want to base decisions on PCR alone - note that NCCN guidelines call for the use of FISH testing until they start coming back 100% negative.

So bad can be somewhat subjective.  No improvement could be seen as "bad" but it also depends what you are looking at.  No improvement in blood counts is pretty bad and suggests maybe the drug isn't working, that would require attention now and a possible drug change or change in dosage.  If blood counts are normal at 3 months, then you achieved the 3 mo milestone and any other improvement is bonus.  You need to keep perspective between what is "bad" and what "not good" or "not great".  A negative FISH at 3 months would be "Great" a FISH that still shows a relatively high PH+ count at 3 months is not "Great", but its also not necessarily "Bad".  It is still very early on so I recommend you pare your expectations.  At 3 months if your blood counts are normal you are good.  Any other improvement is very good.

Best of luck, let us know how it turns out.

[PhilB]

Lucky is spot on as usual.  There is no such thing as a 'bad' PCR at 3 months - it's either 'good' or 'too soon to tell'  One thing you can almost guarantee is that it WILL still show evidence of CML.  A negative PCR at 3 months would be so quick as to be almost unheard of (apart from Trey of course, but he's statistically insignificant).  A negative PCR at 3 months would generally be more likely to be the result of a dodgy test than a prodigious response.  In reality any drop at all would be good news and no drop wouldn't be 'bad'.

On a different note, I have some cultural confusion with Marnie's metaphors.  Are rabbits famous for being quick on that side of the pond?  Over here it's hares that are quick whilst rabbits are famous for something quite, quite different!

[CallMeLucky]

I think we don't tend to draw much of a distinction between a rabbit and a hare.  Of course that may a bit presumptuous of me to speak for all Americans, so I will clarify that in my experience most people I know would generally think of them as being so similar as to not draw the distinction.  Technically you are right, hares are faster than rabbits, especially the chubby house pets.

http://www.diffen.co.../Hare_vs_Rabbit

[PhilB]

In your link they missed the most important difference of all - taste!  Hares (at least the European Hare) have a rich, gamey, dark meat whereas rabbits are pale and very delicately flavoured.

The comments in your link talk about 'March Hares' which are famous for 'their boxing' behaviour.  I love the fact that for years everyone thought this behaviour was rival males fighting for dominance, whilst in reality it was female hares responding to unwanted male attention by giving them a good thumping.

Sorry Luvmybees, this is a digressing long way from your original question, but hopefully gives you something to take your mind off waiting for results!