Ibrutinib and pneumonia

[irish828]

On ibrutinib for 2-1/2 yrs with good response managing CLL. Depleted immune status continues after FCR 6 yrs ago. Had pneumonia for 10 mos and continue to have debilitating episodes of extreme fatigue, chills and sweats that are only addressed with heavy duty moxyfloxacin. Welcome any thoughts

[skunkbay53]

Did you also have plural effusion? Fluid under your lung? My husband was on Ibrutinib for 7 months got AFIB then the flu then pneumonia. When he was not getting better and having those symptoms you mentioned they found he had plural effusion under his left lung. They drained it and 3 months later the repeat lung Xray showed the fluid was back. They drained it again in August and he started Calaquance in early September. Went to our lung Dr and he heard the fluid back. Hematologist says is the Lymphoma causing the fluid build up so they started him on Rituxan infusions. He claims the Rituxan should clear the fluid up. We will find that out after two more infusions.

As the fluid would build up my husband would get more tired and fatigue that was getting worse as time went by. Hope that helps...

[irish828 in reply to skunkbay53]

so helpful. thank you

[IRN83]

I was on IB for 12 months and admitted to the hospital with pneumonia. Long story short it was an allergic reaction to the IB. Stopped Ibrutinib and the pneumonia went away. I am now on Venetoclax and Gazyva and doing welll.

[irish828 in reply to IRN83]

Thank you!

[Canuck901 in reply to IRN83]

What was dosage of ibruntnib ? Also hit age

[IRN83 in reply to Canuck901]

I was on a full dosage, but forgot what that was, 400mg /day? Not sure what you mean by hit age? I was on IB for 12 months. The first six months I had several common side effects. The second six months I was always sick. Finally admitted to the hospital with pneumonia after 12 months on IB. It was a blessing in disguise as they found kidney cancer in a CT Scan. This was my third CLL treatment, having had FCR and BR.

[Canuck901 in reply to IRN83]

How old were you when you started IB?

How did you tolerate the 1 pill, 2

Pill ? I assume you didn’t tolerate the full dose well

Glad to hear you are doing well on the Venetoclax

[IRN83 in reply to Canuck901]

I was 59-60 years old. I tolerated the full dose, for 6 months then not so well. It ravaged my IGG and ANC. The pneumitus (non virus pneumonia) that I had scarred my lungs.

[Canuck901 in reply to IRN83]

Wow 59-60

Is young . How was your ramp up ?

Did you do 1 -2 weeks on 1 pill than move up to 2 pills for. A few weeks ?

[IRN83 in reply to Canuck901]

I was 51 when first diagnosed with CLL. Started first chemo at 53.

IB ramp up went fine. I don’t remember what the ramp up dosage was. But it was the standard protocol. But I remember my WBC went sky high. Enough that my oncologist received phone calls, emails and text notifications when they got the first blood test results after starting Ibrutinib, which was to be expected. It did drop Quickly.

Interesting enough, the Venetoclax ramp up is much more complex and much more closely monitored than the IB. I had a lot of issues with the Venetoclax ramp up as well. iIt also put me in the hospital for two weeks (Sepsis and pneumonia). I almost didn’t get to complete the Venetoclax chemo either, because my playlets, hemoglobin and ANC dropped to very low levels. My oncologist decreases the dosage from 400mg/day to 100. It was only after they started the Gazyva infusions that my body responded well to the treatments.

My oncologist believes that the adverse effects of the Venetoclax was do to my having had three previous chemo treatments causing my bone marrow to be very sensitive to any treatment. So hopefully what happened to me won’t happen to you 😀

[Canuck901 in reply to IRN83]

Chemo definitely hits you hard . So your definitely correct about the oral drugs Ibruntnib And Venetoclax giving you severe adverse effects once you’ve had chemotherapy

. Our CLL specialist mentioned spleen shrinks fast but WBC will rise because your marrow and spleen have CLL cells flushed out of your system