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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 I was under the impression that pleural effusion caused by Sprycel would clear up once the drug is withdrawn.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 

 

chevyflame,

I hope you are still using this site because I would really like to talk to you. So far, you and I are the only people I know who have had ongoing issues with pleural effusion. Mine does not seem as severe but I have been draining about 150 ml of fluid daily since January. I thought it was going down this past two months but the last week it kicked back up again.

I have a 9 year history with Sprycel developing my first effusion 2.5 years after starting on 100mg. That resolved and my dose was reduced to 50mg. 6 years go by and I develop another in Oct. 2018. After two thoracentesis I saw an interventional pulmonologist at Mayo. They have never seen a case like me - if Mayo has never seen it, that makes me nervous. 

I've attached a link to my posts on this on the LLS site if you are interested. 

https://communityview.lls.org/statuses/5175

https://communityview.lls.org/statuses/5443

https://communityview.lls.org/statuses/5953

I hope you are doing better and have found some resolution. I commented on your posts on the old LLS site and I had to laugh when I read them since I now find myself in similar shoes!

Hi Hannibellemo,

Nice to hear from you. You're right about the pleural effusions affecting only a very small percentage of those with  CML. It's not a club I would invite anyone into. My pleural effusion stopped in January of this year and my catheter was removed. No one knows why.  The pleural effusions have been replaced by chronic heart failure and fluid build up in my lungs. I would much rather deal with the pleural effusions since the only treatment for this condition is taking diuretics which is a tightrope act because I have stage 3 kidney disease. I'm also on home oxygen which helps maintain some balance.  I've been in the ER four times this year related to breathing issues.

On the plus side, I'm still in MMR, trying to be enrolled in a pulmonary rehabilitation program to be as proactive as possible.

Please let me know what questions you have and I'll be happy to discuss.

Hi, chevyflame, thanks for posting! I've been dealing with a pleural effusion, 2nd time in 6 years, and a couple of people pm'ed me on the LLS site to remind me of your posts on the old LLS site. I had my catheter placed last December and although my drainage is less on 20 mg. of Sprycel it is still there, about 150 mg. daily. To make matters more exciting the tip that the cap clicks into on my PleurX catheter broke off last month! How did you keep yours for 3 years? I still have something left that allows the cap to remain fairly stable, though I have no idea what it is!

I'm wondering what TKI you are on now? When your drainage was at its worst, and it was much more significant than mine, were you still on Sprycel? Indeed, I wasn't sure you were ever taken off Sprycel to allow your effusion to resolve, it wasn't clear to me in your post on the old site. The first time I had the effusion was in 2011 and I was off Sprycel 100 mg. for 12 weeks. This time I had been taking 50 mg. for 6 years and I was only off for 8 weeks and the effusion did not resolve in that time. My case was presented to the Myeloproliferative Board at Mayo and they felt that since I responded to Sprycel so well I just try to take it at a lower dose. I have continued to respond well on 20 mg. I chose the catheter because I did not want to continue with outpatient thoracenteses on a regular basis.

However, I just e-mailed my Mayo onc that I think I'm ready to switch to bosutinib at a reduced dose of 300 mg. I will never know if changing may resolve the effusion issue until I try. The rub is that I had liver toxicity issues with Gleevec and raised liver enzymes is a common adverse effect with bosutinib. It's always something.

I am very sorry to hear that your effusions have been replaced by other, more serious issues. Do your physicians think they are related? Have you seen any improvement since January? I wish you the very best!

I gave CML Support permission to share my e-mail address with you. If you are ok with it, can we continue our conversation through e-mail. I'm not sure we'll be of much interest to most of the posters on here. wink

If not I would suggest the private messaging on the LLS discussion board. It's completely up to you if you would or would not prefer to try either. Looking forward to hearing from you.

Pat

 

 

Gosh, Pat and Chevyflame, it's not boring to ME!  I think what's going on with you is very enlightening for the rest of us and would do a lot of good.  Completely understand if you want to take it private, but come back and post every once and awhile, OK?

Hello chevyflame, I'm just realizing your post is from 2018, I'm new to this support group and I've read this post, I hope all is well with you. And I like you am searching for information. 

I'm going through much the same with long term pleural effusion caused by sprycel. 

Your story interests me because yours is the only one I've read, so far, that mentions Pleurodesis,.and this is what my Pulmonary Procedures doctors are suggesting to me. And like you mention, they cannot tell if it would work or not. Seems like a big chance to take, glueing my lung to my rib cage and not being sure that it will be successful.

Another option they're telling me is called Coil Embolization of the Thorasic Duct, which they suggest I might try first, but they are less confident that would work.

I've also read the story of Hannibellemo and her procedure, which I'm going to bring up to my doctors on Tuesday 8-02-22, and see if they have any thoughts on that. 

Anyways I'm interested how it has turned out for you, And by all certainty my prayers are with you, and of us, as we go through this journey.

I do hope your are doing well. Thank you.   

 

Good Morning,

 

My husband passed away on February 10, 2021 due to the cardio-toxic side effects of the medications used to treat chronic myloid leukemia.

 

 I wish you the best. Keep questioning and researching and hopefully you will be able to stay on top of this disease. 

 

His leukemia was caused by exposure to toxic water while stationed at Camp Lejeune so my grief is mixed with anger. It's still hard to understand how this toxic water was on base for drinking, showering, cooking from 1953 until 1987.

Stay strong

                                                                                                   

 

 

Hi,

So sorry for your loss,stay strong and take care .

I am so sorry to hear this, and offer my heartfelt condolences to you.  Thank you for writing to us all and telling us.  I remember ChevyFlame from "the old days" on the LLS site and always benefited from and appreciated his posts.  It has been a lot of years.  I, too, have pleural effusion from Sprycel, which I stay on anyway (at 20 mg), hoping that nothing worse happens, long-term.  I remember the news stories about Camp Lejune.  It feels, sometimes, like we're all guinea pigs in an ongoing experiment called life on Earth.

Thank you for the message. Glad to hear that you are doing well at the 20mg dose. I hope that continues for many years.

 

There is a bill currently in front of the Senate which covers more benefits for those contaminated by the toxic water and of course, it's been changed, added to and has had way too much political angling. If it ever passes it will be so beneficial to those who were sickened by the chemicals in the water and most importantly, they will no longer have to prove to the VA beyond a shadow of a doubt that these chemicals did indeed cause their illness. 

My husband enlisted in the Marine Corps in 1967, and because he had taught himself to type well was assigned to the legal office. I was so happy that he would not be going to VietNam and still have a hard time understanding that he was poisoned on an American Marine Corps base.

Your reference to being guinea pigs in an experiment reminded me of the Twilight Zone episode where the earth was inside a snow dome being played with by an alien youngster. Makes as much sense as the harsh reality.

Be well and stay strong

I remember that episode, too!  Kind of Swiftian, as well.

Thank you cousineg2, I have an appoint with pulmonary Tuesday 8-2, and planning to discuss options I've come across, this gives me some time to check the info you've sent. 

I'm 2 years into this CML and 9 months into PE with the catheter and draining daily at home. 

I found this website maybe 3 weeks ago, I love it, So much info, and knowing I'm not the only one going through this makes me feel not so alone. I'll post my story, and any results we come up with after the appointment,

Thank you, I'm continuing to read posts.