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Sprycel and Pleural Effusion

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Hello All,

This support line is very informative - thank you.

I am on 100mg of Dasatanib for close to 4 years and recently had a medium pleural effusion. I got the PE right after a bout with covid.

I had a thoracentesis and my oncologist now wants to switch me to 400mg of Imatanib. 

My side effects (outside of the pleural effusion) have been minimal and have been reading about reducing my dosage to stay on dasatanib.

My oncologist who is a specialist is fairly adamant about the switch. I said I would risk the chance of another PE to stay on dasatanib and try it out.

Any helpful thoughts/considerations to convince my oncologist to stay on dasatanib. If I can't convince her, should I change to a new oncologist - I do really like her though. Its quite a dilema.

Thanks for any thoughts - much appreciated it.

 

srent, you make no mention of your CML level.  Please enlighten us.

Buzz

 

Hi Buzz,

I am currently at .03% and stable. Never got to deep MMR but it reduced quickly in the first year and stayed below 0.1.

srent, four years is a long time to spend on a full dose of any TKI.  It is likely that you could have begun dosage reduction after a reasonable period of time at a low CML level, thereby avoiding the possibility of pleural effusion that high dosage Dasatinib/Sprycel is known to cause.  Contrary to popular belief, a CML patient doesn't need to reach undetected before lowering their dosage, just a low CML level..

At your stable CML level of 0.03 you shouldn't need to take the full dosage of any TKI.  Either Dasatinib/Sprycel 50mg or Imatinib 200mg should serve you well.  Typically when a sustained low CML level is reached, dosage no longer seems to matter, so if no adverse CML level effect from the lowered dosage is experienced don't hesitate to continue to lower your dosage.

Did your onc take you off of Dasatinib and for how long and has the pleural effusion been fully resolved?  Are you scheduled to test again prior to restart?

CML patients who restarted Dasatinib at a lowered dosage after a pleural effusion tend to do well.

Buzz

Thanks Buzz - very helpful.

The pulmonologist drained my right lung - 1.3 liters. We are going to wait until after the holidays to restart the treatment.

Sounds like I should get a 2nd opinion and it appears that its finding a doctor that you feel comfortable with and shares the same philosophy of keeping the CML at bay and weighing the side effects and potential long term impact of these drugs. I respect my current doctor and institution quite a bit and her philosophy is follow the standard protocols no matter what.

I kind of floated through the past 4 years popping the daily pill and grinning and bearing the side effects (mainly muscle and weight loss, constipation, fading of my skin color). I didnt even realize there was a debate on dosing and in the past week, have read a number of the research papers and articles.

Now, I probably need to make some more consequential decisions. Thanks again.

Hi, you will feel fine on Dasatinib,if you reduce to 20 mg ,100 mg is too toxic .Dont let your doctor bully you to change to Imatinib the side effects are so much worse on that ,I found anyway .Its your body take control ,.try 20 mg for for a while if BCR ABL starts to rise you can always go up to 50 mg ,but less is more with this drug.Your doc might not be a CML specialist so they don't keep up with the latest research .Good luck ,Denise.

Thanks Denise. Good thoughts. Will get the second opinion and take it from there. Will report back.

Totally agree with Denise.  The key is that you have time and options.  You can TRY 20 mg of dasatinib and see if it keeps your PCR down and your pleural effusion gone.  You can try this for a long time!  Or, first try imatinib very low (200 no more) and apply the same criteria.  See how you feel.  If the side effects get you down (again, after giving it a good long trial) then you can make a decision.  It's fortunately not a fork in the road and no going back situation!