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Pleural effusion

Dear group.

Please will you give me your advice in the following problem I'm facing now.

After being diagnosed in sept. 2001 and being treated with Hydrea, interferon and 11 years Gleevec,
my dr. advised me mid 2013 to change to Nilotinib because my PCR was rising (just a bit). And of course I had side effects
with the Gleevec. Nilotinib and Dasatinib should be easier to handle and maybe better working.
It turned out, I had prolonged QT-interval, so Nilotinib was not an option.
I started dasatinib but the QT-interval rose from 450 to 500 in a week so had to stop. After that I have been proscribed Bosutinib.
My PCR became PCRU in a few weeks, and the diarrea was not nice but good to handle.
Unfortunately after a few months I had to take a break, because my liver protested. But after a break I could restart Bosutinib
and my PCR became again PCRU.

In oct. 2014 I became ill. Extremely tired and not enough breath. It turned out, I had pleural effusion.
At first it seemed a pneumonia, but after this and all other possibilities were ruled out, it had to be the Bosutinib.

I changed back to Gleevec, but the pleural effusion worsened. Only after I stopped Gleevec i felt better and the PE reduced.
Four weeks later I restarted Glivec and in no time I was lying back in bed tired, no breath. Because i felt so bad, I stopped
the Gleevec and after one day I felt much better. I lost a lot of water without diuretics.

They advise me now to undergo a pleurodesis. I myself prefer to take again a break till the PE is cured and after that restart the Bosutinib.
Maybe before the break a period of Bosutinib, because I'm afraid in the mean time my PCR will have increased considerably.
I have PE since oct. so one or two months longer don't matter. ;o)

My Haematologist has said, she will not subscribe Bosutinib for me now. Maybe after the pleurodesis.

Has anyone of you also experienced this problem, and what shall I do?

Kind regards

Ria

Hi Ria,

I think it is quite a difficult question to answer---- 'what shall I do?' but I will try to help you make your decision if I can.

1. how many month have you been on a treatment break?

2. When did you last have a PCR result? Was it positive for Bcr-Abl?

3. If so is it stable and not really increasing or is it slowly increasing?

If your answers to 2 & 3 show that you are again showing a rise in Bcr-Abl % then if I were you I think I would seriously consider having the procedure to get rid of the remaining pleural effusion so that you can restart TKI therapy- with your prefered drug, i.e bosutinib- as soon as possible.

From what you say this is what your doctor has suggested- that you do your best to get rid of the PE that is obviously causing the problem no matter what TKI you take. Her suggestion must be based on the clinical situation you find yourself in and again...

The risk of taking 'a few' more months without treatment to allow your lungs to clear themselves of the PE may be high or low...depending on what your PCR results are showing. If your doctor will allow you to wait without the intervention to deal with the PE then you should ask for more frequent PCRs to make sure the risk of losing your molecular response is minimised.

I am not too sure what I would do.... but I would certainly want to see more PCR testing.

I hope this is helpful and you are able to make a decision that is right for you- without putting molecular response at risk.

Sandy

Pleurodesis is done in cases of severe recurrent pleural effusions (outpourings of fluid around the lungs) to prevent the reaccumulation of the fluid. During pleurodesis, an irritant is instilled inside the pleural space in order to create inflammation that tacks the two pleura together. This procedure thereby permanently obliterates the space between the pleura and prevents the reaccumulation of fluid.