With Waldenstrom, what side effects did you have with ibrutinib?

I am sorry your husband is experiencing pleural effusion while taking Ibrutinib. I was on Ibrutinib for just over two years and did not experience p.e. I strongly recommend the IWMF Lifeline list - https://iwmf.com/wp-content/uploads/2022/12/IWMF_LIFELINE-1-1.pdf
You can communicate with one of the Ibrutinib contacts and the Pleural Effusion contact person. They have personal experience along with communications with other IWMF members.
If you need further assistance with the above link, I would be happy to direct you. ( I am a support group co-leader for the I.W.M.F. - International Waldenstrom’s Macroglobulinemia Foundation.)
Please keep us posted and know that we care and support you.

Thank you for sharing the IWMF lifeline list . I hope to get some clues

I am thankful you are willing to follow up with the IWMF experienced Lifeline patients. Please keep us posted.

Sure !!
Thanks again

@vasu11, you may also be interested in these related discussions:
- Is anyone taking Ibrutinib (Imbruvica)?
https://connect.mayoclinic.org/discussion/is-anyone-taking-ibrutinib-for-marginal-zone-lymphoma/
- Waldenström's Macroglobulinemia
https://connect.mayoclinic.org/discussion/waldenstrms-macroglobulinemia/
How is your husband doing?

@colleenyoung
Thanks for sharing the link .
Hubby has WM , on Ibrutinib since 3 years . Blood works are good ,but now pleural effusion is occuring . So was keen to know that anyone having WM ,on Ibrutinib had PE ??

@vasu11, pleural effusion is talked about in several cancer-related groups, not specific to WM. For example here:
- Anyone had Pleural Effusion with lung cancer? How was it treated?
https://connect.mayoclinic.org/discussion/pleural-effusion/
Have they removed the fluid around your husband's lungs (thoracentesis. a procedure to remove fluid or air from around the lungs)?

@colleenyoung
PE was noticed in
May 23 .One Thoracoscopy & then thoracentesis after 2 months was done . Apart from PE , other parameters & bloodworks are good .Is on 280 mg Ibrutinib.
Was curious to know if any WM patient had this ?

@colleenyoung PE fluid test did not show anything unusual

Are there any Waldenstroms patients on an immunotherapy first line inhibitor (e.g. Ibrutinib) who have experienced a sudden decrease in hemoglobin and increase in igm paraprotein after having Covid? If so, did bloodscores recover? How long did it take? Patient is a 64 old male who still feels fit and wonders how long is reasonable before agreeing to an alternative treatment option such as chemotherapy?