Restarting Venetoclax?: I started on Ibrutinib... - CLL Support

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Restarting Venetoclax?

Dym230109 profile image
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I started on Ibrutinib early June 2000 and was then taken off Ibrutinib for October/November as there was a concern that the Ibrutinib was irritating my lungs. I was put back on Ibrutinib in December and then had 5 x 2 night stays in hospital as they ramped up my Venetoclax to 400mg. I was then on combined Ibrutinib and Venetoclax in January 2021. As my Platelets count and then Neutophils count dropped dramatically, since early February I have been off ALL drugs.

Fortunately, my Lymph Nodes have not, as yet, returned and while having a lack of energy, I feel okay.

Question is, if my consultant decides in the next few weeks to start me on Venetoclax again, is there a chance I will have to spend again the 5 x 2 nights in hospital as they ramp up the dosage. Thanks.

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Dym230109 profile image
Dym230109
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Smith123456 profile image
Smith123456

if your lymph nodes are basically empty from prior use i don't see why. Hard to get extensive tumor lysis if you have low tumor load

Dym230109 profile image
Dym230109 in reply toSmith123456

Thanks for that very useful comment.

SofiaDeo profile image
SofiaDeo

Likely it would depend on your ALC & lymph node size, you should have labwork again before restart. They hospitalize based on risk for TLS. You may not need it. If they do recommend it, please consider the inconvenience. Severe TLS can damage organs without any symptoms.

As a (not quite the same) example, I was high risk TLS. The first 4 weeks of Venclexta ramp up protocol recommends pre, post & 24 hour blood draws every week as an outpatient. This was modified in my situation.....I lost over 95% of my blood tumor load in addition to my spleen emptying the first 2 weeks. So glad I was in hospital, I was in 4 nights Week 1 instead of the planned 2. I am told this is unusual, losing tumor that quickly, esp with 17p del. I had an extended week 3....first it was on hold a few days for Grade 4 neutropenia 0.3. My ALC doubled in those few days & I was extremely symptomatic, felt weak/ill during the day & profuse night sweats again. My Grade 4 was either transient, or a result of a late morning lab with lots of hydration already in me. Then I got stuck on Week 3 dosing a few weeks due to drug refill not arriving (the US weather situation). Moving forward, my doc agreed to weekly/every other blood tests, I am no longer "high risk" for TLS. If my weekly lab indicates I need more frequent monitoring/dose reduction, I'll do it if it comes up.

LeoPa profile image
LeoPa

Was that supposed to be 2020 as opposed to 2000?

Dym230109 profile image
Dym230109 in reply toLeoPa

Sorry, started on Ibrutinib in June 2020.

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