Venetoclax first day- nothing happening?

[jt882]

Hi- My father just started venetoclax in the hospital. How do we know if it is working? His WBC count went up from yesterday and all of his kidney numbers are fine. It seems like nothing happened.

[lankisterguy Volunteer]

Hi jt882,

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When I started Venetoclax in 2016, nearly nothing happened the first week. When I increased to 50 mg in the 2nd week my ALC / Lymph# reduced by 50%. During week #3 at 100mg my lymph nodes shrank suddenly and my ALC went up a little, and then started a steady decline to normal by week 4 at 200mg. I had no physical symptoms or side effects during all 5 weeks. The doctors watched my blood minerals (potassium, phosphate, calcium, uric acid) to detect any sudden crash / change that would predict a TLS (Tumor Lysis Syndrome) event. That never happened for me.

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I have heard of other folks that had earlier and later sudden changes at 25 mg. or 200mg. but most seem to have a steady decline over the 5 weeks.

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You should talk to his doctor or medical team to have them explain what they observe from many other patients and reassure you and your dad that they are alert to the appropriate indicators of good efficacy and avoiding TLS.

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Len

[jt882 in reply to lankisterguy]

Thank you so much for your response! I will definitely ask his medical team as well - but your response was very helpful.

[Poodle2]

I'm sure you will see changes to his blood numbers very soon. It is a very powerful drug. Make sure he really drinks at least 2l a day.

[jt882 in reply to Poodle2]

Thank you- yes we will. We are "rule followers" so in this instance it's a great thing to be!

[jacjar1]

sometimes after full dosage it works all too well. that happened to me had to get shot to increase WBC and reduce down to 3 pills a day. it is powerful and does work.

[jt882 in reply to jacjar1]

thank you so much for sharing

[bettyba]

Hello I have been on the drug for over a year - with very few issues. I had a notisable change within a matter of weeks, lymph nodes dramatically reduced. I had a few side effects: aching bones, saw teeth, itchy skin and fatigue. I still experience chronic fatigue but I have MS as well. The other side effects sorted themselves out very quickly. I am so grateful I got this drug. All the best during your treatment x

[jt882]

thank you 💗