8 replies to this topic

[Cliffee]

Hello to Everyone,

I was diognosed with CML in July of 2011. It was out of the blue and a complete shock for me and my family. Iam 44 years old and have been healthy in every way up until this.

I was started on Gleevac 400mg and have been on it ever since. My blood count was 156k at diag. IT was at 5.5k after two weeks of Gleevac.

The thing that is starting to scare me is my PCRU levels.

At 3 months I was 20%, 6 months 2.4, 7 months 1.1 and I just found out that my 9 months has risen to 1.4. I was expecting it to continue to head down, not up.

Just when I was starting to feel like things are ok this comes out and slaps me one.

Is this a sign that I'm resistent?

BTW: my fish at 5 months was 3.8. and I was CHronic at that point.

I have seen Dr. Druker two months back and my doc is the head of Hemo at Mayo clinic. I have  an appt with him next Monday.

Any help would be monst appreciated.

Best Regards,

Cliff

[tiouki]

Hello Cliff!

A variation from 1.1% to 1.4% is not significant, but you may want to check this again soon (within the next month and not wait for the 12th month) to see if this is just a random bump in your numbers or if gleevec actually starts not to work.

You also may want to talk about it to your doctor , he will tell you what to do.

If in 1 months the numbers have increased again then you will probably have a mutation test (to see why your CML has gotten resistant) and switch to sprycel or tasigna which are very effective drugs and well tolerated so in any case no worries. Plus it is likely that the numbers will keep going down at the next test

One detail to finish : actually the test name is called PCR with no "U", the "U" means Undetectable, which means that you have reached a 0% PCR

Good luck !

Pierre

[Cliffee]

Thanks.

Do my PCR numbers seem kind of slow to begin with for Gleevac?

[valiantchong]

Hi.

Per today standard, it is not slow, I think if on the 12 month you goal is to achieve CCR meaning < 0.9% you be on schedule. The goal to achieve MMR in 18 month. and 2 years PCRU is considered below 5% of CML population.

Just wait and see next 2 month you will know. You also could talk to your doctor to change 2nd generation TKI like Sprycel or Tasigna if you decide to do it. The second generation is much more potent than Gleevec. However you will need to fast for one hour before taking Tasigna.

[CallMeLucky]

It appears you are doing very well.  It is not uncommon to plateau a bit.  That doesn't mean you will be stuck there, but you have dropped pretty quick and things will eventualy start to level off and the descend rate will lessen.  There is no difference in the last two PCR tests.  PCRs get less accurate the lower you go.  All this means is that you have started to level off a bit.  Since you are ahead of milestones in the aggregate it would be surprising if your doctor is concerned about this.  I suspect he will say wait until the next PCR.  With PCR you have to look at consecutive trends not a single test result.  So while it is always good to see numbers going down, the fact you stayed flat at this point is not cause for alarm.  Next PCR will tell a better picture.  Did they do another FISH on you this time around?  What was the result of that?

[PhilB]

In terms of PCR accuracy all 3 of your last tests are basically flat so there is certainly no evidence of a rising trend.  As Lucky says, you came down very nicely to get to your present levels, and temporary plateaus are not at all uncommon.  Hopefully you will see a further nice drop in your 12 month PCR, and if not then a drug switch is certainly worth considering at that stage.  At this point I wouldn't be pushing for a further PCR any sooner, but you might think about asking your onc if he thinks it's worth doing another peripheral blood FISH to set your mind at rest (if he hasn't already done one).  At your current levels the best tests to look at are FISH and / or BMB cytology rather than PCR.

[Cliffee]

Thanks for all the replies. This is a very nice place and you are all very helpfull.

Dr. Druker replied last night and wasn't concerned about it either. His main concern was Zero Phili Chromo's at 12 months. He too said its not uncommon at all to plateau for a while and then have things continue downward again.

I guess I'm just nervous like most at this stage.

I will see my Dr. here at Mayo on Monday and see what he says. From the helpfull advise here and Dr. Druker I would imagine he will probably say the same thing and thats fine.

I hope I can continue on Gleevac. Since day one, I have had absolutely no side effects other than a little puffiness around the eyes. It would be scary to switch.

Have a Nice day!

[Trey]

Dr Druker is talking about zero BMB cytogenetics or zero FISH at 12 months as a goal, not PCR being zero.

[Happycat]

This will definitely date me, but one good way to think of "normal" variation in pcr numbers is to imagine a needle playing on an old record. The needle bounced up and down a bit as it moved in and out of the grooves. Your pcr numbers normally bounce up and down like that, too. Small bumps are to be expected.

Traci