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Pleural Effusion

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Hello Everyone,

Searching for some information and as always really appreciate the knowledge and help from this group.

I have been dealing with a pleural effusion for three and a half years. Over this time I have had numerous thoracentesis performed at the hospital, pleural catheters implanted on both the right and left sides ( not at the same time ).  I know the pleural effusion was caused by Sprycel. The oncologist was resistant to changing to another TKI and when he did agree he placed me on Gleevec. This resulted in a severe full body edema along with the pleural effusion  and back on Sprycel .  Dosage of Sprycel stated at 100 to- 80 - to 70 - 50 and finally to 20mg. I was undetectable for 18 months on 20 mg Sprycel, numbers went up on Gleevec.

Changed oncologists who recommended Tasigna October 2017. I immediately became undectable at 150 mg Tasigna.  I drain daily at home and the fluid levels have decreased from 1000ml  daily to between 300 and 500 ml daily.  I had an appointment with a pulmonogist ( had pneumonia in Feb and double lung infection in May ) to see if anything else is brewing concerning my lungs. She recommended a Cardiac Thoracic review to see if I would benefit from a  pleurodesis which would possibly allow me to remove the catheter.

The cardiac doctor stated that the procedure may not work, or be effective more than 50%. One doctor previously said that because the fluid build up is caused by Sprycel, they doubted that pleurodesis would work at all.

I do not have any problem using the catheter to drain at home as it much less invasive than thoracentesis and no x-rays are needed.

Question, because I had such a severe reaction to Gleevec, if at some point I have a pleurodesis performed, is it possible that fluid will accumulate in other areas instead of the pleural sac ? I've asked several doctors about this and no one seems to have an answer. 

 

Hello, 

Am I right in saying that you haven't taken Sprycel in 18 months or so, now? I was under the impression that pleural effusion caused by Sprycel would clear up once the drug is withdrawn.

Have you investigated any other medical reasons that may have a causative link to PE? Have you seen a repository specialist?

David.

Hello David,

I switched to Tasigna in October 2017 - eight months now.  The fluid level is decreasing slowly.  I see my oncologist, nephrologist, cardiologist, cardiac - thoracic surgeon, pulmonologist, on a regular basis. Not familiar with the term repository specialist. All agree that the pleural effusion was caused by Sprycel. Perhaps if I was switched to another TKI earlier, the pleural effusion would not be as severe.  The doctors do not see a positive outcome from having a  pleurodesis performed. I just had a CT scan of my lungs - negative for any type complication and will have spirometry, lung volume, and diffusion capacity test done mid July and then will check back with my oncologist.

Hi again. A pulmonologist would be a respiratory specialist alright.

Sorry I can't be of any help. It must be very frustrating since the reasons sprycel causes pleural effusion isn't well udnerstood and in most cases drug discontinuation appears to fix the problem.

David.

 

 

Hi Chevy 

have you considered emailing one of the CML specialistws about your issues ? Or asking your doctor to email on your behalf?  I know for example that Dr Shah in San Francisco was very involved in the research that brought Sprycel to market . Just thinking one of them may have come across a similar situation before and can offer some guidance. So sorry to hear that it’s been so prolonged. 

Best wishes louise 

 

Hello Louise,

I've been researching information on recurrent pleural effusions since my first thoracentesis. Not much information is available but I did find this article from February 2017.

Science Direct
Volume 17 Issue 2 Pages 78-82

Jorge E.Cortes1Carlos A.Jimenez2Michael J.Mauro3AlexGeyer4JavierPinilla-Ibarz5B. DouglasSmith6

Pleural Effusion in Dasatinib-Treated Patients With Chronic Myeloid Leukemia in Chronic Phase: Identification and Management

Currently, there is a scarcity of general guidelines for the management of dasatinib-associated pleural effusion, and no prospective trials of intervention strategies for dasatinib-associated pleural effusion are in progress or planned.

I'll keep working with and questioning my team of doctors and hoping that my fluid levels will continue to drop.

Appreciate your response.

Hi there I spoke by a phone to a CML patient near us who had had Complications and had been to see Dr Shah in SF. She said he spent nearly 2 hours with her and she said the reassurance afterwards was incredible. The first thing he did was reduce her Sprycel dose. 

I wonder since you found the paper from Dr Cortes if you could just email him and explain your situation? The worst is he doesn’t response but I think from a kindness and medical interest point of view he will be interested in helping you. 

Keep in touch so we know how you continue to do. 

Louise