CLL Support Association
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Your Venetoclax ramp up experience and TLS

I just started cycle 3 of an ibrutinib and venetoclax trial and I'm looking forward to adding venetoclax in the next cycle. Ibrutinib has worked great! (More energy, nodes and spleen basically normal, alc almost cut in half after 8 weeks). If you are in a similar trial will you share your TLS risk level and what the venetoclax ramp up was like for you? Thanks in advance! Jim

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Jim,

I'm not in any trial now but yours would be the one I'd pick.

I'm so happy for you.

Jeff

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HI,

That sounds great. I will definitely share my experience with you once I start. I was hoping I could keep my CLL in check by eating organic vegetables and fruits but it looks like I need treatment too. I'm glad to see many responses.

Keep in touch and let me know how it goes.

BC

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Hope all goes well BC. Please do.

Sue

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Thank you Sue.

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I was at moderate risk for TLS and had absolutely no problems at all with the Venetoclax ramp up. Just started feeling better and CBC normal at 4 weeks just on Venetoclax. Ramp up was managed as an outpatient. I wish you well.

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Thanks for your reply, I hope venetoclax is as uneventful as ibrutinib has been!

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I will share my experiences too when I start treatment. I will have the same treatment as you do. I hope things continue to go well for you and please keep up updated on your progress!

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Hi I'm on one of the early trials of Venetoclax (I also had it with 6 cycles of obinutuzimab) - I had a moderate TLS risk and as my trial started 2 years ago I had my ramp up done as an inpatient as they were being extra cautious then. I had no issues (other than the constant 2 hourly blood tests which were part of the protocol then), slight flushing at each dose rise - I blogged the experience at abtandme.com. Almost 2 full years on Venetoclax and MRD- from around 7 months. Still on 400mgs a day and feeling wonderful!

Best wishes

Deborah

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I read a lot of your blog a while back when I thought treatment was in the distant future but will go back to it now that it's reality! Thanks

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Hi Jim /Cll4me2

When I started on Venetoclax in June 2016, Dr. Furman used the criteria from Genentech & Abbvie to rate me as high risk for TLS. So I was hospitalized for 30 hours of each week during each the first two dose escalations. After that I did the escalations as an outpatient but had blood tests before the dose and 12 and 24 hours after the dose increase.

My nodes and spleen were large, and apparently that is the primary risk driver.

Since your nodes and spleen are down, but if your ALC (Absolute Lymphocyte Count) is still high (like most Ibrutinib patients in the first year). You may be rated moderate risk. (I know your said your ALC is cut in half, but half of a starting point like 300k might put you in the moderate bucket).

And if your ALC is considered low by the criteria, then you may be low risk.

Apparently after the initial scare from 2 patient deaths from TLS in the Phase 1-2 trials, there have been very few close calls, and those were detected by blood tests in time to deal with the TLS.

So you may find your clinical trial team to be more relaxed than mine was just one year ago, and able to accurately assess your risk and get you tested adequately.

Len

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Thanks for your reply Len, my pre-trial assessment was high. Alc dropped from about 240k to 130k after 8 weeks. 3 weeks to go and I'm hoping for moderate. But I'll be happy with whatever. Jim

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Jim,

I'm on the Clarity Trial in the UK. That is eight weeks of Ibrutinib then adding Venetoclax ramping it up over five weeks.

I was rated medium/high initially, but in the final analysis (bloods, ctscan and bmb) they moved me up to high risk.

Everything went well during ramp up (the risky time). For the 20mg and 50mg steps I was kept in overnight but wasn't necessary for the other three.

I was given rasburicase (might have spelt that wrong) and a lot of saline soln as a drip (first week, first litre in an hour, secon litre 90 mins). I think it was on the first or second week they told me my blood test at 8 hrs after the venetoclax showed ever so slight sign of TLS, however it was so low I would not notice anything and they did nit need to take action, just keep closely monitoring it.

I summary it went well.

best, rob

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Rob, Mine is similar, 12 week ibrutinib, ramp up venetoclax for 4 weeks. Prior to starting ibrutinib, I was high risk. Nodes, spleen, and alc are all down so we will see what they think during the pre ramp up tests. Thanks for your reply, that's what I wanted to know, what's a day like if you are rated high, medium, low.

Jim

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I'm on the Ibrutinib Venetoclax triàl and am now month eleven. Had no problems at all with the Venetoclax ramp up. Blood counts good . Another bone marrow at the end of October.

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