5 replies to this topic

[CallMeLucky]

Dr. Brian Druker, a CML expert from OHSU's Knight Cancer Institute and a key researcher responsible for the development of imatinib, gives his perspective about the progress that's been made in research and treatment.  He is encouraged that, in most cases, patients can have their disease well managed on existing therapies, while newer agents--some still in trials--will provide even more options for those who are resistant or are experiencing side effects.  Dr. Druker explains that he believes CML research can, and should, begin focusing on eradicating the disease altogther, and provides his suggestion about how he believes that might happen.

Link to Video: http://www.patientpo...-road-to-a-cure

[susanlathers]

I watched Dr. Druker's  video and have a question.  He stated that patients that are skipping/missing med doses are at risk for the CML becoming "resistant".  I have heard different, I don't know whether on this site or others.  I have NO doubt Dr. Druker knows what he is talking about but what happens to those who try to go off all TKI and relapse after a few months.  Do they risk becoming resistant to any TKI's? 

   Since I have been on Tasigna I find it very hard to be consistently med compliant.  As a result I bounce in and out of PCRU with mild fluctuations in numbers.  I guess I haven't taken this seriously for 3 reasons:     1.  I had heard stopping TKI's did not make the CML resistant to drugs

                                                                              2.  If one PCR test is positive I have been able to work harder at compliance and the next (1 mo later) will

                                                                                   be neg.  Granted I have only done this once.  I will see with next test in Jan. if that holds true

                                                                              2.  Many oncologist consider MMR a positive response one can feel confident about and that disease

                                                                                   progression can be prevented.

   So, if I am one of those who is not going to have a deep response to TKI (been 6 yrs of being very compliant about taking meds) what is wrong with bouncing back and forth between PCRU and MMR if missing a few doses regularly makes a better quality of life for me?

    Susan

[tiouki]

Hi susan,

I don't know exactly your case but I think that Dr. Drucker talks about people that are less compliant than you and/or who are not responding as good as you do (especially people on gleevec -slower to act-  at the beginning of their treatment = far from MMR).

I guess you should not worry too much if your PCR gets slightly positive since slightly positive is already very good and as you said the disease progression in prevented if you stay in MMR.

Good luck!

Pierre

[Trey]

You are doing a "pulsed therapy", but maybe in a haphazard way.  Most would recommend a more regular pattern of pulsing (if you could find an Onc to agree with it, which would be rare).  Pulsing might be acceptable for patients with continuous PCRU over a couple years, but has not been tested in a clinical trial.  You are dancing in and out of PCRU.  It seems unlikely to cause resistance due to low dosage, since no direct link has been shown.  You will know what works by what the PCRs show, and can adjust accordingly.

[kreuz]

Can i say that for current stage as long as you are working with the TKI drugs,...the cml can consider as a "controllable/manageable" disease ?? just simple like the diabetes, you cant cure it but can long term survive?

[CallMeLucky]

Yes, for a large majority of patients, CML will be a manageable chronic condition that should not effect your normal life span.