CLL Support Association
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Cycle 3, Day 1 and 2 of Obin, Ibrutinib, Venetoclax Trial

Cycle 3, Day 1 and 2 of Obin, Ibrutinib, Venetoclax Trial

I'm back from Columbus again.

Cycle 3 is when they start administering the third drug, venetoclax, to the trial participants. They required those of us deemed high risk to be treated as an inpatient to avoid tumor lysis, a condition that occurs when too many cancer cells are killed at once, which causes your blood stream to fill with their component parts (e.g. phosphorus) and can cause fatal kidney damage. There were a couple of fatalities during Phase I of the trial, so as much as I hate spending time in the hospital, I do appreciate they didn't want to take any chances.

They had me check in on Monday and as hospital rooms go, you couldn't ask for anything more state-of-the-art, or nicer. The room featured nearly floor to ceiling windows (as you'll see in the post's photo which doesn't do justice to the room), was huge and well appointed. I especially appreciated there was a shower and accommodations to use it every day. The staff was uniformly wonderful. This was quite a contrast to my stay at Bryn Mawr Hospital where the staff was uneven, and the room was depressingly tiny and dark.

After they checked me in, they super hydrated me (think many liters of IV fluid a day) and I had a visit from the nephrologist to discuss what would happen if something went wrong. They had me take the pills on Tuesday morning. They checked my blood four times during the next 24 hours and fortunately, everything was uneventful. With the exception of the affects of getting no sleep for two days thanks to all of the poking, prodding and voiding, I am totally fine with the exception that I am definitely brushing and bleeding a little more easily, thanks to my platelets dropping below normal.

My report would be incomplete if I didn't fill you in on the past month. I got to take three weeks of travel to OSU off, and only had blood work drawn locally, so it didn't make sense to report anything. Long story short, I feel great! I have 100% of my energy back, and other than the ever persistent rash (which is getting better), I have no signs of being sick.

It's also fun to report that in the middle of all this, my two year old but fast growing company (which remarkably doubled year over year despite my CLL diagnosis) managed to make the Philadelphia Business Journal's list of Best Places to Work in Philadelphia (5th largest city in the US, about 2 hours from New York City). You get on this list based on the results of an employee engagement survey. We'll find out where we rank on August 26, but a lot of companies applied, so I'm just thrilled to be on the list, even if we are in last place.

Thanks it for now. As always, thanks for your support.

PS 2 cycles down, 12 to go!

4 Replies

Thanks for sharing. Very interested in your post. I'm 2+ years on ibrutinib. LynnB


Good news Ellen. Hope all continues to go well for you.



Sounds like things are going well. Continued prayers 🙏🏻


So glad you are feeling great... keep it going! Thinking of you all!


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