6 replies to this topic

[jenz]

After nine months of being on Tasigna I have 0.0007 left of leukemia in my body which is the latest PCR result.  I discussed this with my doctor and thinks this is a phenomenal response which I agree I have hardly any leukemia left. But by human nature I wanted to be PCRU or CMR instead of remaining where I am at as I want this stuff as much out of my body as possible.  So I discussed this with my doctor and she said she thought I am hitting the point that I will stop decreasing but says who really knows. I could continue to decrease but only time will tell.  But she did strongly state she did not think I would ever get to PCRU or CMR because I had never been on interferon.  The only patients she had seen reach PCRU were those that were treated with interferon and then a TKI.  I realized the few people I know who have reached CMR on Tasigna also had interferon so maybe she is right.

I'm posting this question, has anyone reached CMR or PCRU that has NOT been treated with interferon ever?

[rct]

Many times many.   You might want to look into seeing doctor(s) that have treated more CML.

rct

[CallMeLucky]

Your doctor seems very out of touch.  As was stated in the other post, many many people have achieved PCRU on Tasigna alone.  Given your response in 9 months it is likely you will get there soon as well.

The bigger question is whether PCRU makes a difference or if CMR is real/definable.

PCR testing is not accurate or sensitive enough to determine if you have no leukemia cells in your body.  When you get to PCRU it just means you have gone below the detectable limit of the test, I have been there twice so far and both times my follow up PCR has gone back to detectable.  I'm basically bobbing up and down like a float in water.  PCRU is just a line in the sand that defines the limits of the test it does not mean that leukemia is eradicated.  I will give you that PCRU is a great feeling.  With PCRU you can speculate that maybe there are no more leukemia cells in the body in contrast to when you get a positive result and you know there are still some there.  But then you also have to accept the fact that there can be some false positive results in the test.  So you can never really know for certain based on the testing that is available today.

The fact is you are doing amazingly well and as Trey would say, thankfully the bulk of it has nothing to do with your doctor's abilities - the drug is doing all the work.  As long as it does you're probably fine sticking with this doctor as you will probably be the patient that enlightens him/her to the fact that people can get to PCRU without Interferon.  But if for some reason you ever started having trouble with response you may want to get another opinion.

For now congratulations on doing so well.

[Trey]

Your Onc is giving you nonsense.  Interferon has nothing to do with it.  Almost everyone who is responding to TKI drugs will have a long term continual (maybe not straight line, maybe plateau for a while) lowering of leukemic counts.  Some who were in the original Gleevec trials took ten years to get to PCRU. 

[pamsouth]

Hum, that is a new thought for me, maybe the Interferon kills the CML stem cells then the TKI kill the nuclei bcr/abl 9/22 translational know at the Philadelphia Chromosome. 

Hum, yest I can see it, the Interferon does the job on the ancient mother stem cell and the TKI does the job on her child.

Bam they are both gone, Cured, Yes!

PamSouth

[valiantchong]

Hi,

Actually there are multiple of researches going to to kills of STEM cells and MRD (minimum residual disease), The example multipetide vaccine, HDACi, Hegdehog  inhibitor and etc... However presently these trial are not effective for everyone yet since everyone is different. Some takes longer years for TKIs to kills STEM cells base on STEM cells exhaustion theory where there is tri-phasics response to the leukemic cells, the prediction of the thrid phase which hypothesize on TKIs killing the residual STEM cells, in this phase one will achieve PRCU, where present PCR could not detect these residual. In this theory the good healthy STEM cells will outlived and were push out the leukemic stem cells base on the evolution mathematical model.

How true is this model, will soon to be proven or may not be proven and it does not apply to everyone.. Those who Stop TKIs for 5 yrs in the STIM trial may still have some leukemic stem cells which is undetectable by PCR. Yet we hope if these patient be able to stop TKIs for longer years may be 20 years, then this theory will be taken as true by more and more doctors... but so far the records is only 5 yrs and only apply for may be less than 5% of the whole CML population

[valiantchong]

http://www.scienceda...20405131417.htm

Additional research on stem cell...