OSU Trial Cycle 3, Week 2

[thompsonellen]

Hi everyone,

I just got back from OSU for my second venetoclax escalation, which once again required an inpatient stay. It was a repeat of exactly what happened last week. I checked in at the clinic on Monday and then after that, checked in as an inpatient. They stuck an IV in me, and pumped 150 ml of fluid into me every hour. The next day, I took 50 mg of venetoclax, up from 20 mg the week before. The next morning, two sleepless nights and numerous blood draws later, they declared me fit to leave the hospital.

On the plus side of the ledger, my numbers are great. While my absolute and percentage of lymphocytes is still high (75-80% depending on the blood draw v. 90% just a few weeks ago), my white blood cell count was actually normal for one of the blood drags – exactly 11 v. 97 when I started just 10 weeks ago, and my absolute neutrophil count (the infection fighting white blood cells), while still low, are up to 13.6% vs. 6% just 10 weeks ago. Swollen lymph nodes are now undetectable, except for the ones in the groin area. I had huge lymph nodes pretty much everywhere, so this is a huge improvement. While my red blood cell count and hemoglobin are still low (3.1 and 9), they are moving in the right direction, and every other number is fine, with the exception of LDH, which is still a little high as my liver is working hard to move all the components of the destroyed cancer cells out of my body.

While I have generally been strong and I have 29 out of 30 good days, I do have that occasional bad day, and this month it hit when I was in the hospital. No sleep (think waking up every hour in the hospital, or more), low blood sugar, an inedible lunch and two failed attempts to put an IV in to do the final blood draws were too much, and I just lost. I gave up on the IV, took a nap and felt a lot better. They still had trouble doing the blood draws (3 attempts to get the one last night to draw blood) but I handled it better.

Other than my one arm that is bruised up from all the blood draw poking, I am fine and very happy to be back in Philly, done with inpatient visits and not facing any needles for 6 days.

As always, let me know if you have any questions, and thanks for your support.

Ellen

[MsLockYourPosts Passed Volunteer]

Sorry about you having to have all the pokes! You'd think, as hydrated as they had you, that you would have been a fairly easy stick. I'm glad the numbers are looking better. Ignore all percents, especially while in treatment with things changing so much. It was when following my numbers weekly while starting Gazyva that the uselessness of the percents (thank you Chris for the many posts about it) suddenly clicked. The percents will always add up to 100, so if treatment is knocking your lymphocytes down the other numbers in the differential will go up to maintain the 100%. it is the absolute number, especially the ALC and ANC that are significant.

[thompsonellen in reply to MsLockYourPosts]

In my case, I normally have fabulous veins, but my whole body swelled up with the hydration so my veins are actually less pronounced to me at least. Thanks for reminding me to look at absolute numbers. They look great.

[Justasheet1]

Big hugs your way. There's a remission in your future.

Jeff

[casanova]

Sorry to hear of the wobble whilst in hospital, but you are definitely a glass half full person so upwards and onwards. Wishing you well.

Maureen

[Peggy4]

I can understand your 'wobble'. Glad you're feeling better.

Peggy