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Pleural Effusion

Hi all,

I'm currently 54 yrs old. I initially took Imatinib then Ponatinib but both of them didn't work.
Right now I'm taking Sprycel (100mg) for about 2yrs now but my doctor suspended it for 3 weeks due to pleural effusion.Now im taking prednisone. My doctor is supposed to lower the dosage once I'm back with the medication.Hoping it will works so please pray for me and wish me luck.
Currently my PCR is 0.06 and BCR-ABL at 0.04
Now I'm worried that my BCR will go up again since I was advised to stop my medication. Stress strike again.
This condition is making me more anxious as the day goes by. I also lost my job due to this condition because of the on and off side effects.

i want to ask you guys,is there someone here who had fleural effusion? what should i do to prevent this aside from taking medicines?

im glad all of you are okay.

only inspiring answers pls.

Hi

From your posting it would appear that your response to imatinib was poor and that you were then put directly on to ponatinib which is a last line drug and also which shows up some nasty vascular side effects in some patients. I presume that you dont have any new mutations of the disease ? Normally if a first line treatment does not work then you might increase the dose or you would be offered a second line treatment of either nilotinib or otherwise dasatinib.

It appears that about 1 in 5 of those who take dasatinib experience pleural effusions and if you had any history of pulmonary disease then this might not be the drug for you.Has your specialist considered offering you nilotinib-it has disadvantages of needing to fast before dosing and it can exaggerate any cardio vascular issues that one might have;it can be tough on the heart but it might be effective.

Has your specialist considered putting you on 20 mg daily of Dasatinib rather than 100 mg; some patients on this forum have found that a lower dose may be as effective but produce fewer side effects.

I wish you well

John

Thinking, especially considering your low PCR level, that your onc/hema would be amenable to lowering your Sprycel dose to 50mg,    Lowering your dosage is key in dealing with pleural effusion issues.  Lowering dosage is typically done in pleural effusion cases on restart; should be a standard procedure; check with your onc/hema.  At 50mg only a few patients continue to experience pleural effusions.  Make sure your pleural effusion issue is completely resolved (X-Ray) before restart.  You'll regain your prior status fairly quickly after restart.