I was back at OSU Monday night so I could make my 7:30 am Tuesday appointment. This week, we escalated from 50 to 100 mg of venetoclax.
Thankfully, they let me be an outpatient again, and it was rather uneventful. They took the standard vitals, drew blood and put an IV in. About two hours later, the cleared me to take the bigger dose and I sat there for 8 hours. I had a couple of visitors who are in the same trial, thanks to a fellow forum member who sent them my way, which helped pass the time. At the end of the day, blood was taken, the results came back, they declared me fine and let me go back to the hotel.
I made a reservation at Z Cucina di Spirito, which is ranked by Trip Advisor as the best restaurant in Columbus, and walked the 1.5 miles from my hotel hoping to clear out some of the IV fluid. Dinner was great, and so was Jeni’s ice cream (a Columbus establishment where they serve super premium ice cream like goat cheese sour cherry and sweet corn blackberry which sound gross, but were both great).
The next day, they needed to do blood work again within a two-hour window. I arrived at 7:30 am, they drew blood sometime after the magical time of 7:41 am. An hour later, I was free to leave.
In case you were wondering, unlike last week, I wasn’t stuck each time they needed to draw blood. They take it out of the IV (and they kept the IV in Tuesday night-they wrap it up so it’s not too in the way, and sent me home with rubber gloves and tape to cover it up so I could shower).
Blood work wise, everything is moving in the right direction. I actually had one WBC that was 11 (normal), although the percentage of lymphocytes is still too high. Platelets continue to be above normal. Hemoglobin and RBC are still low, but moving in the right direction. Lymph nodes are greatly reduced, but some are still there.
I am mostly side effect free, though my eyelids are purplish thanks to lots of broken capillaries, and I am now bruising more easily. The 8-month rash is improving nicely, though it is still itchy, and I have a secondary rash of little tiny bumps on one arm.
My energy level is back to 98%, and while I’m still waking up in the middle of the night itchy, my life is no way compromised by tiredness or fatigue.
I’m back for two more Mondays for exactly the same routine as they raise venetoclax to 200 and then 400 mg. The following week, I return for Round 4, week 1 and then I only need to go monthly!
That’s it for now. Thanks for your support and let me know if you have any questions.
Ellen
