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PE is back....

So, to make a long story short. I had PE after 4 years on 100mg Sprycel. I had 2 thoracentesis (2 liters off) and stopped Sprycel for 2 months. My chest X-ray shows a residual PE after 2 weeks post thoracentesis. I was still cleared by my doctors to resume Sprycel 50mg and monitor the PE with chest X-rays. The residual PE was stable for 4 months but unfortunately the chest X-ray after 3 more months shows an increase (yesterday). This morning, an ultrasound showed a lot of liquid and I had another thoracentesis (1.6 liters off). I am off Sprycel for now and I should try to COMPLETELY resolve the PE before going back on TKIs. Maybe waiting more than 2 months on drug vacation? Also my last pcr was 0.0022%IS on 50mg. The next pcr is next week after 2 months without drug and 7 months at 50mg.

So, again, my fellow CMLers, any suggestions are welcome. I am at my second PE after 7 months of the previous.

When I resume Sprycel should it be lower, 20mg? Or is time to think about switching TKI? I would prefer to stay on Sprycel but.... If I take Gleevec or Tasigna, should I take half the normal dose?

 Thanks a lot.

Karinne

 

Hi Karinne, 

It sounds like you have had a tough time. To me, this sounds like you should switch - your PCR is excellent. Why not bosutinib? It seems to have a lower side effect profile than the others.

Or, with a PCR that low perhaps be bold and try treatment-free for a while more? Maybe nothing will happen.

David.

Bosutinib is popular amongst CML clinicians here in the UK due to its efficacy as well as its side effect profile. That is not to say it does not have the potential for serious side effects, but it seems they are less common than the other 2G TKIs - esp the Cardiovascular effects of nilotinib and ponatinib. It is as equally potent as the other TKIs so it deserves to be considered as a possible contender for a switch.

https://www.medicines.org.uk/emc/medicine/27795

https://www.bosulif.com

I have had a similar story to yours, Karinne.  I've had several PE's, and I've never had any obvious symptoms with them.  I could not stay off the Sprycel long enough to get COMPLETELY, 100% free of the effusions, as my PCR rose pretty rapidly each time.  I had a couple of PE's on 70 mg and again on 50 mg.  The last time I was able to eke out 11 weeks' holiday before returning, and the PE was ALMOST but not quite all gone.  This time I returned on 20 mg and have had 0.005% IS PCR's since about March.  The PE is still there but small and stable, although the last re-check showed just a smidge of an increase.  I am trying so hard to hang onto Sprycel because, despite the alleged low SE profile, there are tons of horror stories out there about bosutinib of continuing debilitating diarrhea and nausea that requires medication to manage.  I had all that on Gleevec 9 years ago - no thanks!  NOT returning to those problems.

But the real question is, for you and for me and others coming along this PE/Sprycel path:  Where are the rock-solid data that say you will become and remain pleural effusion-free if you switch from dasatinib to bosutinib?  The main off-target kinase inhibition with bosutinib are the SRC kinases, and these are conjectured to be responsible for fluid problems, like pleural effusions.  Trey, on the LLS forum, advises people with PE's on dasatinib to NOT switch to bosutinib (by his admission, he is not a doctor).  My own doctor is vague - says his switchers are by and large happy and don't have "problems with pleural effusions."  But when I ask if they have x-ray documentation that the PE's are gone and don't come back, he pretty much doesn't know, since that's someone else's lookout, not his.  (That's the way we do things here in the US health care system - exasperated sigh.  He does CML, someone else does SE's, but they don't know anything about CML, and nobody talks to each other, so they never learn. Next patient, please)

My pulmonolgist is OK with my walking around with an asymptomatic small effusion, so that's the way I'm handling it now.  I don't like the idea of getting 2 chest x-rays a year for the next 20-30 years, however.  It's just I will not switch to bosutinib until somebody can prove to me that it will improve my PE situation.  I agree with your plan to wait as long as you possibly can to let the PE clear completely.  When you go back (IF you go back?) I would try 20 mg.  If you decide to switch to bosutinib, please keep us posted as to how that works out!