Extreme fatigue with Rituximab and Venetoclax 24-month regimen

[RamsesII]

Hello everybody and best wishes for a healthy, happy and peaceful year.

I am male, 73, diagnosed with CLL 11 years ago. IGHV mutated and no TP53 mutation or 17p deletion.

I am currently on the Rituximab and Venetoclax 24-month regimen scheduled to be completed in mid-August. After ramp up I am continuously on the 400 mg daily dose. All my test results are now within normal range with the exception of IgG 404 mg/dL, IgA 33 mg/dL and IgM <15 mg/dL. At the same time, I am very weak physically to the extent that any manual work of a few minutes makes me feel exhausted.

My hematologist says that I do not need any IgG injections and hopes that my fatigue will gradually go away and Ig values will improve after completion of the treatment.

Has anyone had a similar experience and what did it feel like once the Venetoclax treatment was completed?

All replies will be greatly appreciated.

Ramses

[lankisterguy Volunteer]

Hi RamsesII'

-

It appears that you have had AIHA (haemolytic anemia) in the past. Has your hematologist or GP started stepping through a differential diagnosis for your fatigue and lack of stamina?

my.clevelandclinic.org/heal....

en.wikipedia.org/wiki/Diffe...

You and your team should not assume that the CLL treatment is the only possible cause.

-

I would question the optimistic prediction that your IGG, IGA and IGM will improve after you complete treatment. I believe that is rare for CLL patients - mine has not improved after 6 rounds of treatment on 5 different drugs.

But if you are not having frequent infections, and your current fatigue is not caused by an infection ( e.g.: CMV - cytomegalovirus , EBV - aka mononucleosis, etc.) and you don't have a persistent low grade fever, I don't think most CLL expert doctors would suggest IVIG

-

Len

[81ue]

I completed V and R. Last V was 11/2022. Fatigue symptoms made me tired by noon, and ending my day about 3-4pm. I was disappointed that the fatigue didn't instantly go away that week I stopped. This month I do feel a lot better, and fatigue is slightly there in the evening, and I'm not even thinking about it anymore. What I'm thinking about instead is starting more vigorous exercise (like longer and brisk walks).

[RamsesII in reply to 81ue]

Thank you very much for sharing your experience. It's helpful to know how fellow patients have fared under similar conditions, although of course everyone of us is a different case.

[MrMidnight]

Hi RamsesII. I think that for some of us CLLers fatigue is just inescapable. I have been severely fatigued through three different treatments (ie Chlorambucil/Obinituzumab; Zanubrutinib; and now Venetoclax monotherapy).

Having said that, it did improve after two years of Zanubrutinib to the extent I could go for a 3.5km walk each day. Now on Venetoclax, 2km is about my limit for any single outing (with 4km the most I can walk in a day, including incidental walking around the house and garden).

I also get completely exhausted by 10 minutes of simple exertion (such as raking leaves as I did yesterday).

I can only deal with it by reminding myself I am very lucky to be alive given I have 17p and eight years ago I had very few options (if any).

[RamsesII in reply to MrMidnight]

Thank you very much for sharing your experience. It's helpful to know how fellow patients have fared under similar conditions, although of course everyone of us is a different case.

[MrMidnight]

Absolutely. I was the most fatigued of any of the 50 patients in my clinical trial for Zanubrutinib (2016-20). Other patients were doing spin classes at the gym while I could barely get out the door for the first year.

I felt disappointed but philosophical given I could still do many of the things I like doing (writing / reading etc).

However, I'm certainly better than I was that first dismal year.