OSU Trial Cycle 3, Week 3 Update

[thompsonellen]

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

[db601]

Great update! Continued good luck! Thank you. Diana

[Newdawn Administrator]

Sounding good Ellen and I'm impressed at you walking 1.5 miles to the restaurant after treatment. That ice cream looks like it was worth the effort though!

Hope it all continues as well with a truly successful outcome for you.

Newdawn

[thompsonellen in reply to Newdawn]

It was a push, but my recovery from sitting around with the IV was much faster this week than last, so I will repeat it if I can.

[Peggy4]

Glad to hear that you're doing ok. That ice cream looks lovely-worth the walk!

Peggy

[thompsonellen in reply to Peggy4]

I was!

[Hidden]

Great news, thanks for updating.

Best wishes for future good outcomes

Diane

X

[nvp815]

I look forward to your updates Ellen. They always brighten my day as I hear of your progress. Today I am so surprised to see the similarities in our current status although our treatments are totally different. I just began Rituxan this week. My WBCs are improving nicely, my platelets are elevated at 455,000, my hemoglobin is lagging at 8.4. I also have broken capillaries - mine are around my nose as opposed to my eyelids. My lymph nodes are also greatly reduced with a couple stubborn ones remaining. Also have the itchy rash on my arms. My energy is still in the dumps but three straight days of steroids have left me unable to sleep at night so I think that explains that!! I look forward to comparing our progress as we continue on in different treatment plans. After Rituxan, I will be moving to an ibrutinib vs. acalabrutinib trial. We will just call this our own little research project.

All the best Ellen.

Nan

[thompsonellen in reply to nvp815]

I'm sorry you have the same side effects, but it is a comfort to know I'm not alone. That's so odd you have the elevated platelets and mine hover just above normal, and we both have broken capillaries. I think either arm of that trial will be beneficial. I had no side effects on ibrutinib after the first week, and acalabrutinib is supposed to be even easier on the system. Look forward to hearing that your energy is back after you get off the steroids!

Ellen

[SandiC]

Thanks so much for your updates Ellen. I look forward to them and am trying to follow you all. Glad you energy is up there and hope the rashes and itchiness leave you soon. You are getting close to the finish line as far as the many visits to OSU.

Best to you,

Sandi

[GratefulOne]

Great news Ellen!

[lexie]

Thanks for continuing your updates, I enjoy reading them. Glad you included a good restaurant because each time I go to OSU I wonder about that but end up eating a packed lunch from home.

[thompsonellen in reply to lexie]

I'm eating my way through the top 10 rated Trip Advisor restaurants Columbus. I should probably blog about that. Might be more useful than my posts!