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Pleural Effusion/Stoppage Time/Remission

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Hi All,

I found out yesterday I have some mild to moderate pleural effusion and the probable course (waiting to hear from doctor) would be to stop the Sprycel (100mg/day).  For those of you who have experienced this how long was your stoppage time?  And then when you went back on the Sprycel was it at the full 100 mg?  And lastly, I have been on Sprycel for about 20  months and by BCR-ABL has been a bit all over the place - was down to .005 and then up to 2.8 and now back to .039 - has anyone achieved a zero after 20 months and on a 50mg or 20mg dose and gone into total remission?  Thanks in advance for the feedback!  And Scuba, I know you're going to ask - I take about 4,000 Vitamin D a day.  :)

 

Yes, you will stop the Sprycel and monitor the fluid.  If you can, you should stay off the Sprycel until the fluid is 100% gone; I say "can" because your PCR may show a slow (or quick) rise during the time off.  If you lose MMR (.1% IS) you will have to return to a TKI, most probably Sprycel (because it has been doing an excellent job for you at 20 months) but at a lower dosage.  The time it takes for the fluid to go away can vary widely, between a few weeks to several months.  When you go back on Sprycel you should use a lower dose - 50 or even 20 mg ought to keep (or return) you to your nice low PCR.  Many people are able to keep a repeat pleural effusion at bay at a lower dose; some can't.  I have minimal residual fluid left on 20 mg Sprycel, which gives me no symptoms and the pulmonologist is fine with it.  I have had a couple of undetectables, but for years now have bounced around 0.005% IS on 20 mg.  Try not to be too seduced by the concept of undetectable - the vast majority of us will never get there, but it has no bearing on longevity.

Great, thanks for the info.  So, how long have you been at the 20mg?  I'm just wondering, do people stay on this the rest of their lives, and that looks somewhat normal, even after not achieving zero?

Ironically - patients who develop pleural effusions (PE) on dasatnib have superior clinical CML outcomes

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6151348/

The science behind this indicates development of an overactive inflammatory response leading to the PE. The emerging protocol is simply to stop therapy until the PE resolves and then resume on a very low dose of dasatinib (20 mg). You are likely to have an even better response on the lower dose while keeping PE minimal or eliminated.

I took 20 mg dasatnib for years and eventually reduced to 20 mg every other day and then became undetected and am now drug free for the last 7 months as I test treatment free remission. Lower dose of dasatinib is best if lower dose works. The goal is to find the lowest dose which works for you. A PE is a definite sign you are very sensitive to dasatnib and as the article above points out - in a good way. I would not be surprised if 20 mg every other day would be sufficient for the longer term. You might just become "undetected" and eventually stop therapy (~50% chance of success).

What were the symptoms you noticed for pleural effusion? I have been on 100mg sprycel now for 2 months and have developed a bit of a cough for the last few weeks. Could there be a connection? 

Dry cough is one of the symptoms, but mine were just getting a bit winded when going for walks (not around the house but actual exercise walks) and going up stairs, and as it got slightly worse a feeling of a small ache in my lungs. Hope that helps! They’ve stopped my Sprycel for about 10 days, then I will have a chest X-ray. If it’s all clear I’m restarting meds at 50mg, the doctor wouldn’t agree to 20 as Scuba suggested. 

Ok thanks. Not sure I’m noticing any other symptoms besides the cough. Will speak to the doc about an X-ray 

Regina - I've been at 20 mg for several years (sorry, I'm not where my files are right now - I think it's 3 or 4?)  And yes, the idea for CMLers is to stay on a TKI for the rest of their lives.  In the protocols, the goal has never been to get to zero and most people will not be able to get there.  Zero isn't truly zero anyway - it's just the limit of the PCR's ability to find the CML.  The goal has always been MMR or 0.1% IS.  Stay there (or below) and that's the safe zone.  So far the studies show that about half of CMLers can eventually meet the requirements for trying TFR and that about half of them will be able to durably sustain TFR (staying below 0.1% IS).  Therefore, only about a quarter of CML patients will successfully experience TFR.