CLL and pleural effusion: Any info on treatments... - CLL Support

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CLL and pleural effusion

Wanna2know profile image
9 Replies

Any info on treatments that not only treat CLL but clear continued accumulation of fluid. I am not in end stage and CLL numbers are not that high- the main symptom is the effusion, which needs repeated draining.

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Wanna2know profile image
Wanna2know
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9 Replies

healthunlocked.com/cllsupport

I only had draining. Had it 3 times in 3 months and then the Imbruvica started working and I didn't need it anymore. I had been in the hospital with pneumonia twice and took IV's in the hospital, then Vancomycin for 10 days when I got home. After the Vanco I started the Imbruvica and when I saw my Pulmonologist after a month at home, my lungs were fine.

Wanna2know profile image
Wanna2know in reply to

Was pleural effusion due to CLL or to the pneumonia? Did they analyze the fluid? How long have you had CLL? How long after diagnosis did you begin treatment? You are the first person to reply to my question. Much obliged and be well!!!

in reply to Wanna2know

They never told me what it was from. Yes, they analyzed the fluid and all 3 times it came back malignant cancer. I've had CLL for 3 years, before that I had Non Hodgkins Lymphoma but it was untreated for 12 years. I started treatment of Imbruvica a year and a half ago after being discharged from the hospital with CLL and pneumonia. Hope this information helps you. I know treatment is different for everyone and there are many treatment options out there now!!! Get well, and be well!

Wanna2know profile image
Wanna2know

Best of luck to you. Amazed you never treated NHL- do you now have both NHL and CLL? Is your treated directed to both?

Newdawn profile image
NewdawnAdministrator in reply to Wanna2know

CLL is a NHL. This explains;

‘CLL and SLL are cancers of the lymphatic system. They can develop when lymphocytes (a type of white blood cell that fights infection) grow out of control. CLL has ‘leukaemia’ in its name because it affects the blood. SLL is another form of the same disease and it mainly affects the lymph nodes (glands), which is why it is called a ‘lymphoma’. Both forms of the disease are low-grade (slow-growing) and are often grouped as non-Hodgkin lymphomas. CLL and SLL are treated in the same way.’

Regards,

Newdawn

thomelk profile image
thomelk

My husband has had pleural effusion drained twice in less than two months, both times tested and found to be chyle liquid (related to lymphoma). His CLL blood numbers are pretty good, after treatment with Gazyva, but his lymph nodes have remained huge, with constant shortness of breath and extreme fatigue. He will be hospitalized tomorrow to begin treatment on Venetoclax. Hoping this will reduce the nodes and prevent further need for drainage. He is 11q unmutated and has been treated with all the other options over the last 10 years.

kubie profile image
kubie in reply to thomelk

I also am also 11q and unmutated. Have large plural effusion, just started clinical trial with Ibrutinib and obinutuzumab. Short of breath and very fatigued. Not at all like me, have been watch and wait for 5 years, very active, played double tennis, road bike up hill -5 miles etc. alway has good cardio. Now need to rest after shower etc. Hope you are doing well.

barbkay17 profile image
barbkay17

I had Pleural Effusion While in hospital with Pneumonia. Was the 1st in world to trial a new drug which enabled Drs to drain the problem areas . Was lucky it worked otherwise an op would have been needed.

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