6 replies to this topic

[akjones]

I've been on Gleevec for 13 months.Started at 59% BCR-ABL, at 11 months I was 1.97% at 13 months I'm at 1.26%. I have done very well on Gleevec, very minor side effects: hand cramps, nausea, GI problems solved by giving up any alcohol. Actually training for a marathon right now.

My doc is starting to think he needs to change me to next drug. I'm torn, realize I'm behind schedule getting to 3 log, but seem to be still going in right direction. My math tells me I should get there in about 6 months. Worried about all new side effects. Any advice is welcome.

Andy 

[CallMeLucky]

Hi Andy,

I don't have much in the way of advice because I feel like I am in a similar situation.  I'm moving along well on Gleevec (about 9 months now), have about a 1 log reduction so far.  Side effects are there, mostly fatigue, some weaker muscles and occasional stomach ache.  On one hand I feel I am doing fine and should just keep riding it out.  But then I hear of someone diagnosed around the same time as me on Tasigna or Sprycel and they are already undetectable by PCR and claim to have hardly any side effects and then I start thinking maybe I should be talking to my doctor about switching.  On the other hand, I also hear of people on the newer drugs and they have plenty of side effects, still have fatigue, and some have had a pretty tough time with more serious side effects like pleural effusions.  So I just don't know.  I have an appt next week and based on my test results I plan to ask "do you still think Gleevec is the best drug for me at this time?"

[Trey]

Assuming your PCRs are on International Scale and showing nearly a 2 log reduction, that is about equal to CCyR, which is the standard goal for 12 months.  (Maybe you even have a negative BMB or FISH to show CCyR.)  So it would be a bit of a coin toss to switch.  Trading side effects while training might not be the optimal timing.  You could wait until the 18 month point to decide.  But if it were me, I would consider switching at some point if you are leveling off in PCRs.

[akjones]

I evaluated my progress by plotting the BCR-ABL results using a log plot. Actually very interesting it gives me what my target should be at my next test (to remain on track) and I can calculate when I should reach MMR. What it tells me is that is should be at log -0.3 or so at my upcoming test, which is about 0.4%. Response should follow this log-linear relationship and it does! Basically a chemistry experiment with your own body (I am a chemical engineer).  If anyone would like help doing this let me know. Maybe someone could write an APP for this?

[Trey]

However, do not be surprised if the curve flattens out as the response deepens, which is the normal expectation.

[Marnie]

Hi, Andy.. .

Not here to give advice. . .you have to make your own decisions.  But hearing about other people's experiences might help you to make the decision that's right for you.

I was on Gleevec for almost 1.5 years.  My numbers flattened out and PCRu seemed very elusive to me.  I had moderate side-effects from G, hand & foot cramps and the typical GI issues.  I'm quite active and athletic (ran Grandma's Marathon in Duluth many years ago).  I switched to Sprycel 2 months ago.  Side effects have been pretty much zero.  I feel a lot better on Sprycel.  Haven't had a PCR test done yet. . .doc wants to wait for another 2 months to let Sprycel do its thing.

For me, Sprycel is easier to take. . .you can take it with or without food, and has far fewer side effects.  As I said, I feel great.  And historically, Sprycel has better results than Gleevec (though Gleevec has a much longer history).

Good luck with your decision.

Marnie