6 replies to this topic

[akjones]

Seems like I'm stuck again. I was on Gleevec for about 12 months, got down to 2% for BCR/ABL but stopped improving. Switched over to Tasigna for 6 months now and now I'm stalling out at just under 1% (0.73% last test). My Doc is starting to talk bone marrow transplant, seems to me that he is jumping the gun (big time!) and that there are a variety of alternatives to consider before going this route. Seems like there are three options: 1. Stay the course and see if I make some progress (6 months on Tasigna doesn't seem enough time to start making conclusions), 2. Up my Tasigna dose from 2x150 mg twice a day to 2x200 mg twice a day, 3. Swap over to Sprycel.

I've been doing great on Tasigna other than the slow progress, excellent blood work, minimal side effects and I have been feeling much better than on Gleevec (I ran a 1:22 1/2 marathon 2 weeks ago). So my preference is option 1 or 2. Looking to talk some more with my doctor and changing doctor's if I don't get some more creative thinking. Just looking for a sanity check, anyone else going through this issue?

[CallMeLucky]

I think you're being very sane and your doctor appears to be jumping the gun.  I don't get how you stall in 6 months if you went from 2% to .73%.  How is that stalling?  I would need to see numbers prgressing before considering such an aggressive option.  Perhaps a mutation test is in order or something like that.

[akjones]

Thanks, for the feedback.

Test were 2% In March (last before switch to Tasigna), 0.97% in July and 0.73% in October.

[LivingWellWithCML]

Well first off, a 1:22 1/2 marathon?  Holy Blazing CMLer, Batman!  That is an unbelievable time -- congratulations.  I've been on Gleevec for 6.5 months and I've managed to get my 10K time down to 44:20, which I thought was pretty fast until I saw your post. :-)

I think that if you were a patient with the CML specialist that I'm seeing, he would say 'stay the course', especially if you're keeping the CCyR.  If the PCR starts trending up, then he'd start to look at a TKI change.  It doesn't sound like you're remotely close to be even thinking about BMT as an option.

Oh, he'd also want to know when your next race is.

[Taylor]

It'd stick with the Tasigna for now.  It's not a stall, it looks like a downward trend to me.  Even if it says slow progress, I say great job and keep it up!

[Susan61]

Stick with what your doing.  You  are in a CCyr, therefore, you can wait to see how you do.  I see so many doctors rushing to the BMT.  You have a very good handle on how your doing.  Just watch your numbers, and if you have to switch to the Sprycel then go that route first.  A lot of people are doing very good on the Sprycel, and the mutation test would be first before a BMT.

Susan

[scuba]

AK - Consider switching to Sprycel.  You may not even need full dose.

Tasigna is very similar to Gleevec in how it works.  The significant difference is that it binds more tightly to the same ATP socket that Gleevec binds.  Sprycel works differently and usually provides relief when Gleevec and Tasigna come up short.  I could not get my counts down significantly on Gleevec.  I was asked to switch to Tasigna and decided on Sprycel instead because it works differently than either Gleevec or Tasigna.  My counts started to drop significantly once I went on Sprycel (and only 20mg.).