Very worried about Mom: Hello everyone - wish... - CLL Support

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Very worried about Mom

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Hello everyone - wish you all a healthy path.My Mother was admitted to the hospital Monday morning and we found out she had urinary infection that went to her kidney and then blood. She had stopped taking venetoclax since Sunday. They are giving her antibiotics but her blood counts are out of whack. Rbc are all low and her wbc is slightly high. So I have a couple of questions. Her doctor said to immediately stop the venetoclax (which she did before he told us). How long can a person go without venetoclax treatment? From what her infection doctor said - the blood counts are typical when fighting infection, but they still aren't returning to at least some normalcy. Also, I've read that venetoclax side effects are actually 'serious infection'. Is that outdated information or still stands?

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Justasheet1 profile image
Justasheet1

Lee,

I’m not a doctor or on Venetoclax but will share a recent experience.

I caught a virus and became septic in 3 days. They stopped my meds and treated me for neutropenia and sepsis as my wbc and neutrophils tanked.

It took a week after recovery for my counts to rebound and to start back on my meds.

I was told that this reaction is fairly common and they were right.

If your mom has been on Venetoclax for at least several months I would suspect a brief pause won’t affect her much.

The biggest issue now is the infection. As the great father of FCR treatment and then head of MD Anderson leukemia division, Dr. Michael Keating, used to say, “The biggest problem to worry about is the one right in front of you.”

Jeff

in reply to Justasheet1

Thank you Jeff - really appreciate it! Another thing - how could venetoclax suppress immunity/cause infection if they keep blood counts upto par?

in reply to Justasheet1

Also - what do they treat neutropenia with?

HopeME profile image
HopeME in reply to

All treatments are a balancing act. They kill the cancer cells but also can harm the normal functioning of a patient’s immune system and suppress healthy white blood cells that can make us vulnerable to infections. Some of us tolerate treatments like Venetoclax easily while others do not. Stopping and starting Venetoclax or reducing dosage is a common strategy after infection with this powerful drug.

Neutropenia can be treated with shots of a growth factor that stimulate neutrophils and by backing off of treatment (V in your mother’s case). It’s a manageable condition if treatment is sought quickly which sounds like what is happening in your mother’s case.

I’m hoping your mother recovers and returns to the comfort of her home quickly.

Best,

Mark

in reply to HopeME

Thank you Mark!

AussieNeil profile image
AussieNeilPartnerFounder Admin in reply to

All treatments for CLL can also cause cytopenias - lowered blood counts. That includes healthy B cells (so a big reduction while in treatment in the ability to produce immunoglobulins/antibodies in response to infections and vaccinations), along with neutropenia. Venetoclax can also slightly affect T cells.

Neutropenia can be treated by holding (as is being done) or reducing the treatment dose. G-CSF injections (filgrastim, neulasta, etc.), can also be given subcutaneously into the abdomen skin to boost neutrophil production. It can take anywhere from a day to a week or more for neutrophils to recover.

Neil

in reply to AussieNeil

Thanks Neil!

Shepherd777 profile image
Shepherd777 in reply to Justasheet1

Loved Dr. Keating. Someone ought to put together a booklet of his wisdom, remarks and sense of humor.

Justasheet1 profile image
Justasheet1 in reply to Shepherd777

Shep,

I agree with you. He always had a way of imparting his knowledge without worrying you.

Jeff

Justasheet1 profile image
Justasheet1

Lee,

Neil and Mark answered your questions way better than I could.

Once the infection has resolved, she should recover quickly if she was doing well on the Venetoclax previously in my uneducated opinion.

Jeff

Justasheet1 profile image
Justasheet1

Also, if you lock your post to this community only, you may get more responses to your post.

mdsp7 profile image
mdsp7

Your caring makes a huge difference to your mom. When I had a blood infection, both of my daughters came from far away to make me feel supported. I was very grateful and I think it kept me from panicking, which helped me help the doctors figure out where the infection originated and what to do to help me. Best wishes!

in reply to mdsp7

Thank you - Glad you overcame your infection and I wish you prolonged health!

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