6 replies to this topic

[August1]

Hi everyone,

I am considering a TKI change and wanted to get feedback. I am currently on 100 mg Sprycel. I reached CCyR at about 14 months and, at my last appointment, my PCR was 0.3% and trending toward MMR. In addition to the constant rashes and fatigue, one of the big things I've noticed with Sprycel is that I get a lot more bacterial infections than I had previously. In the 6 months I've been on Sprycel my ANC has dropped from 3.6 to 1.4 (reference range 1.4 - 7.0). Now I seem to get a lot more sore throats, ear infections, etc., and it seems to be increasing as my counts lower. Overall it's manageable, but annoying.

My oncologist asked me if I was to assume that if I was to take Sprycel for the next 10 years would I have a good quality of life? That really got me thinking. He recommended I give Tasigna a try to see if the side effects are more manageable, but I know Tasigna has it's own set of issues including hair loss. I'm losing mine the natural way as it is and certainly wouldn't want to help the process along any.

If any of you have made this change I'd appreciate your feedback. Thanks!

Bill

[hannibellemo]

Bill,

That's a tough one. What about taking a lower dose of Sprycel, first and seeing, #1 if your PCR trend continues down and #2 it doesn't have such a neutropenic effect on you?  1.4 ANC isn't so low that it should be effecting you that way, though. You should have plenty of 1st line defense at that level. Generally you might see problems below 1 and definitely below .5.

I've been on 50mg. Sprycel since my pleural effusion. I went from .02 to 1.4% waiting for the PE to resolve and within a year at 50mg. I was back to .02. Something to consider, anyway, Bill. Better to try and tame the devil you know (IMHO) then start from the beginning again.

Good luck!

Pat

[scuba]

Bill,

I was on 70mg Sprycel in the beginning and my Neutrophil count dropped to as low as 0.1 (dangerous). My dose was dropped to 20mg (where I am now) and I trended close to PCRU (2.5 months ago - so do for another test soon) at that dose (I also take Curcumin). My Neutrophils hover any where from 1.4 to 2.5 over the last two years. No sore throats or any other infection that I notice.

You might consider dropping dose to 70mg and test again in 3 months and see if your PCR continues to drop. At 0.3 while at CCyR you have room to experiment. If you have no side affects other than the mild Neutropenia, it's not worth switching. You are getting a good response with Sprycel.

[Marnie]

Bill, I can only offer the same advice.  I was on 100 mg Sprycel until 2 pleural effusions.  I'm now down to 50 mg and bouncing in and out of PCRu.  My rash, which was pretty awful on my scalp, neck, and ears, is much better. . .only one itchy ear. 

Perhaps you should talk to your onc about reducing dosage and see how that goes. 

Good luck,

Marnie

[Trey]

There is no clear right or wrong answer.  If you want to try Tasigna, then it might be better, or it may not be.  Only trying it would tell the real story.  You can always go back to Sprycel.

[jmoorhou]

I was doing great on Gleevec until I had a tooth extracted (don't think it was related to CML), and a dentist put me on a week's worth of Amoxicillin, which completely "blew out" my system, and caused all sorts of problems.

The trick with Gleevec is to take very little other medication.  I was fine when I took only Ativan to get to sleep with some neurontin.  There are side effects (including some bone and joint pain) If you have any arthritis, you might only be able to do  Yoga (CML is my second major disease, I had polio when I was a kid, and I think the Gleevec is affected my "polio" ankle.....so it's worse for me...I'm 61...) they are manageable.  I take Spironolactone for the pleural effusion.  It's a very old diuretic that also has helped my potassium levels.

[August1]

Hey everyone,

Thanks for the feedback. Much appreciated. I agree that there's not a clear answer on this. I have a CBC/CMP next week and will see how the ANC looks. I'll also wait until my next PCR and see if I've reached MMR. If my counts look good and I continue to have a good response I'll probably stick with Sprycel for now and see if dose reduction would be an option in the future. If the ANC continues to drop, and if my PCR is still being stubborn, I may try the Tasigna. For now though, I'm definitely more comfortable with the devil I know than embarking on yet another experiment into TKI side-effect profiles.

Take care!

Bill