4 replies to this topic

[WoofWoof]

Not easy figuring where to start but....yesterday I had an appointment at Johns Hopkins hospital with Dr. Doug Smith (CML specialist) & Dr. Julia Beaver. To summarize: I started on Gleevec and then switched to Tasigna and have been PCRU for 9 months but my last test indicated a 2 log increase. I have been having other side effects as well.  Dr. Doug prescribed a BMB and Kinase Mutation testing (just as our Trey suggested). However, he is very concerned and suggested that based on the next test results I should be considering bone marrow transplant. At 64 years old, I'm sure I want to subject myself to that. The other options would be Sprycel or entering a clinical trial. But he said that since I have not responded well to the first two, any response to another medication would be temporary at best.

Has anyone else here been in the same predicament or offer any suggestions?

[Marnie]

Trey is the expert here, and I'm sure he'll jump in.  Sprycel works differently than Gleevec and Tasigna, so it may be premature to suggest that Sprycel won't work for you.  I'd sure give it a try before resorting to BMT.  Kinase mutation test will also be helpful to determine which med will work the best.  There is a chart that shows which meds work (and don't work) for which mutations.  I don't have the link at my fingertips, but can certainly dig it up for you if you need it.  Your doc should have the information available.  I'm surprised that your doc seems ready to jump to BMT before going with Sprycel.  There are other drugs in the pipeline, as well.  Don't know how easy it is to get into clinical trials at this point, but that would be worth pursuing, too.

Good luck,

Marnie

[hannibellemo]

I agree with Marnie, there are too many options yet for you to jump into thoughts of a BMT.

Is it the retest that shows a 2 log increase?  Or is that still the 1.4% you referred to earlier?

Good luck!

Pat

[Ludwigh]

Seems a bit hasty to me. I was on Gleevec for 14 months before PCR's starting to head north. I am on Sprycel now and doing well. I have Mutation A355g which is responsive to both 2nd gen TKI. I find it odd that your Onc is quick to discount sprycel after tasingna failure as Sprycel is much more powerful than the other, and works differently. If you have developed another mutation (if mutation is what caused you to switch in the first place) then more than likely it will respound to Sprycel (with the exception of a few rare mutations and T315I ). Even those mutations respond to the Ariad trial drug. You will want to consult with one of the top CML specialists in the country, Moshe Talpaz comes to mind.

There are CML's that have moved around on all 5 TKI's and are doing well. I think BMT/SCT should be reserved as the very last option.

Terry

[Trey]

I would ask Dr Smith if you have any high risk factors that led him to that conclusion.  If not, Sprycel might work just fine since it works in a couple different ways.  First, it binds the BCR-ABL in a completely different location than Gleevec or Tasigna (which both bind the same spot).  Secondly, unlike Gleevec of Tasigna, Sprycel works against both active and inactive BCR-ABL.  Also, Sprycel inhibits the SRC kinases, which neither Gleevec nor Tasigna inhibit.  For some, the leukemia uses the SRC kinases (especially LYN) as a back door to get around the Gleevec or Tasigna.  Since Gleevec and Tasigna are alike in many ways, Tasigna is more likely to fail than Sprycel if a person has already failed Gleevec.  So Sprycel is a very good option that should be tried first and should have a good probability of success.