15 mo results still no MMR

Justine - I think you have a tough decision to make. Scuba has given you great advice re Sprycel, but you also seem to be doing well on Gleevec from a side effects standpoint.  Tasigna is also an option - it is also more potent than Gleevec and has been effective for me on low dose.  I started at 600 mg/day and reduced 3 times to 450, then 300 then 150 mg/day in my first year due to multiple AE's.  During these dose reductions, I reached and have maintained <.003% PCR IS.  Tasigna can be tougher on the cardiovascular system than either Sprycel or Gleevec and Sprycel can be tougher on the pulmonary system.  Also with Tasigna, you must avoid food for at least 2 hours after eating and at least 1 hour after a dose is taken.  The side effects of all three primary TKI's tend to diminish with time and with lower dose.

Since you have not had 18 months of treatment yet, if it were me, I would retest in 6 - 8 weeks and see what happens to your trend.  If it goes down again, and particularly if it gets closer to or reaches .1%, you can stay the course with Gleevec for a while longer.  If not, then you can make an informed decision as to Sprycel or Tasigna after discussion with your doc and a full consideration of the side effects profile.  

Good luck - we'll be thinking about you and praying for you 

Thank you Scuba, Cmljax, Mike. These sound like good options to pursue. I like my oncologist very much but we are a small town with a small cancer center, and I have wondered if I should try to get an appointment with Dr. Druker who is only a day's drive from us. One never wants to be an "interesting case," but he might have a recommendation. Thanks.

Isla,

Below are links to 50 mg suggested starting dose:

https://www.ncbi.nlm.nih.gov/pubmed/29723397

https://www.cancertherapyadvisor.com/chronic-myeloid-leukemia/chronic-le...

note the date of the first linked article - this is new information. My own oncologist did part of the research. He no longer starts patients at 100 mg.

Also - I'm looking for the reference on low dose Sprycel being more effective than higher dose due to Adverse effects on immune system for some patients. Essentially - although Sprycel kills CML cells it also suppresses the immune systems natural ability to also check cancer (NK cells). Lower dose enables our immune system to keep up the fight and with Sprycel at lower dose creates a better environment for CML attack (i.e. immune system + Sprycel). Seems to be working for me (PCRU at 20 mg).

When my dose was lowered to 20 mg, my response took off and my blood counts improved. Patients who experience adverse events at higher dose Sprycel are more likely to benefit greatly from low dose Sprycel. As counter-intuitive as it sounds, lowering the dose may actually improve response. The key is to learn what the individuals threshold response is when starting therapy. Some people need more drug to cross the threshold. But I suspect many do not and are over prescribed with unnecessary excess drug.

Thanks MJP - that's the one.

By the way - Dr. Cortes at M.D. Anderson verified he has seen this as well. They need more study to 'prove' out this theory - but I don't need a clinical study to inform me on this important early finding. It just makes too much sense (once you get passed the more is better intuition). Sprycel suppresses the blood system (including immune system) in sensitive people. Lowering dose seems to give the best of both worlds - attack on CML chemically and preserving the NK immune response to also attack.

Thanks for those articles and input :)

The idea of lower dose Dasatinib being more effective than higher dose is certainly tantalising. I'm just balancing that idea with seeing two patients on the US site (CallMeLucky and MikeFromIllinois) go into treatment-free remission after being at 100mg Sprycel for a number of years and wondering if I too could have soon been eligible for TFR if I'd stuck with 100mg. I'm convinced it was not the path for me though as the side effects were intolerable. I've got a low body mass index - 52kg and height 5'2.

I just watched Doctor Stephanie Rea's conference presentation which was posted by RC Kirk on this forum last week. I highly recommend it. She stresses the importance, once good response has been achieved, of "determining patient personal optimal low dose". It gives lots of detail, such as in DASISON five year follow up for patients whose Sprycel dose was reduced after achieving MR4.5, lowering dose to either 50mg or 80mg meant that 9 out of 15 patients retained MR4.5 and 5 blipped up to MR. And for patients who'd achieve MMR (but less than MR4.5) and reduced dose, lowering dose to 50mg or 80mg, 15 out of 26 went on to MR4.5, 9 stayed at MMR and 2 lost MMR (0.1-<10%).

"TKIs save lives: now it's time to address overtreatment"

https://vimeo.com/272187639

Here is another article I found very interesting:

Elderly Patients With Chronic Myeloid Leukemia Benefit From a Dasatinib Dose as Low as 20 mg

https://www.sciencedirect.com/science/article/pii/S2152265017300149

I will keep people updated on the outcome of whatever I decide to do with my dose. We are all different. Some need higher dose. Some do well (or better) on lower dose. It's great being able to read up on everyone's experiences as we sometimes get a good feel for things before the published literature has caught up.

Maddie, thought I would bring your post from May 12, 2021 forward:

May. Undetectable

March. .0187. 3.72

feb. .029. 3.55

had surgery and stop drugs for week

Nov. .055. 4.26

sept. .0126. 3.9

aug. 1.111. 1.95

june. 37.1. .43

dr is dropping me to 40 mg. Till august and then maybe. Just 20