6 replies to this topic

[czkeidel@aol.com]

I have cml -- and was diagnosed in September 2010 (so I am about 13 months post diagnosis)

I have two questions:

(1)  At six months after diagnosis, PCR showed a "log decrease from the median ratio of 2.0" and  said that "log change from my previous result is 1.6" -- the ratio BCR/ABL1 to ABL1: 0.09196 (which I understand shows better than expected decrease of bad cells)

I am confused that when reading online about PCR test results and log decreases -which figure (median or individual) is the one referred to when people talk about the log reduction progress

(2) At one year, my PCR results revealed a "statistically significant" difference from 6 month findings but in undesired direction (meaning that the amount of bad cells detected did not go down or stay the same but went up) - not sure how to phrase that in terms of log reduction but guess it means there was a log increase??  - it is still in a positive territory for someone at 12 months,  according to my doctor -- although he recommended re-doing the PCR to see if the finding reflects a lab error.  My question is - if the results are accurate -- what could that mean??  I take gleevec 400 mg and never miss a dose - so could this be a sign of other mutations involved -- is it common for numbers to fluctuate?

Thank you for your help.

Carole

[Pin]

Hey Carole,

Firstly - Welcome!

Secondly, I'm sure other people can answer this better than me - but I'll give it a go. In answer to your questions - I think most people use their own log change to guide their progress, but I believe it is also acceptable to look at your progress compared with median progress, which I assume is on the international scale. In either case, at six months you were doing very well, a 3 log reduction is what we aim for, which indicates a major molecular response.

For your second question, it's difficult to see what is happening without any actual numbers. I think that repeating the test is the best approach as I do believe sometimes they can be inaccurate. Let us know the outcome of your second test.

Hope this helps in some way!

Cheers,

Pin.

[Trey]

I answered this in your other posting.  This was moved here by the LLS admin folks.

[czkeidel@aol.com]

To fellow CMLers and Trey

I wrote about 2 weeks ago (see above) about an increase in my PCR results -- another blood test was done and the increase is "real" says my doctor and indicative of gleevec resistance  My #'s went from 3+ log  in June after nine months of treatment  to a 2 ;log at my October follow-up -- confirmed by two blood tests - I am going to have a bone marrow test next week -- and if I understand it correctly, doctor is looking at whether there are other "genetic mutations" --he has already decided to switch my meds from gleevec to sprycel - we talked on the phone and it was hard to grasp all of the infromation - so I wonder if someone can help me understand what possibilities account for gleevec resistance? what are the other genetic mutations associated etc.? Is it common to have other mutations show up after you have reached MMR and have had positive response to gleevec?   Any feedback or sharing of similar experiences is appreciated.  I thought I was in great shape.  Only have d nuisance side effects from gleevec and concerned about what side effects might emerge with sprycel.   Thank you 

Carole

[Sneezy12]

What are the numbers? Frank

[Trey]

Maybe this shows the beginning of a loss of response, and maybe not.  Loss of response is technically loss of CCyR.  The BMB will show if you are still in CCyR if it is zero.  Looking for genetic mutations means chromosome mutations -- the Philadelphia Chromosome is a genetic mutation (translocation).  It is not likely there are other genetic mutations.  Maybe you have a kinase mutation, but a Kinase Mutation Test is needed to discover that, which is a blood test.  But at your levels of CCyR it is unlikely that a kinase mutation would show up due to lack of test sensitivity.  Overall, the BMB is not a bad idea, but a better idea is another PCR in a couple months.  You have had several 2 log PCRs and one 3 log PCR; it is possible that the 3 log PCR was not so accurate (older sample, lab errors, etc) and the other PCRs were fresher samples.  Just pointing out that there are other possibilities here.

Also, you posted the more information about PCR results in another thread (Sneezy's question):

http://community.lls.org/thread/12261

I don't see anything that is conclusive about a loss of response, although it is possible that one is starting.  It could be Gleevec resistance, but may just be PCR inconsistency, because even though the last two were similar, that does NOT mean the 3 log PCR was accurate, since there was only one in that range out of the last four PCRs.  So you could just be at a response plateau.

But there is no need to stick with Gleevec in the face of any potential or actual loss of response, or even a response plateau.  I would switch drugs.  But if you really want to stay with Gleevec, you could also increase dosage. 

[czkeidel@aol.com]

Thank you for responding so quickly-- and helping to make sense of things -  - Scheduled for bone marrow test on Monday and the Kinase Mutation Test has been ordered --   Will talk to doc about these other possibilities -  since I am in positive territory (2 log) - waiting and watching PCR seems reasonable, as I don't want to change meds if I don't really need to.  Appreciate having a place to talk about these issues - thank you again for your support.