I completed the second day of the trial, and I couldn’t be happier about my decision.
Day 2 was “Groundhog Day,” i.e. a repeat of day 1 in all ways except we ramped up to 900 mg from 100 mg of obinutuzumab infusion. I had maybe 5 minutes of slight stomach and lower back pain, but that was it. I was told that this is what I can expect from the future “obin” infusions, too.
My counts also went White Blood Cells plummeted just in one day of the baby dose. My other counts took a hit, but this is to be expected because they have highly hydrated me to try to minimize the risk to my liver which has to process all the cell destruction.
White Blood Count 32, down from 92 (normal high)
Red Blood Count 2.99 down from 3.39 (normal low 3.8)
Hemoglobin 8.8, down form 9.7 (normal low 11.7)
Platelets 137, down from 179 (normal low 150)
Absolute Lymphocytes (the bad WBCs) 21, down from 83
Neutrophil Segmented (the good WBCs that fight infection) 23, up from 8
I also have noticeable progress with my rash which isn’t itchy and looks a lot less “angry.” This might be the result of the steroids and Benadryl they give you prophylactically, but I’ll take it. I really was getting to the edge of what I could take with that. My face noticeably changed shape in the last day. It’s more heart shaped and less round because the lymph nodes have reduced. My eyes aren’t running all the time and while my nose is still slightly stuffed, it’s 75% better.
I was the success story today. Unfortunately, someone else had to drop out of a clinical trial. The nurses were bummed, and I’m glad I was able to provide a bright spot.
They only had to watch me for one hour post treatment, so I was out the door by 4 pm. I had planned to stay overnight an extra day this time around, just in case, but I will easily be able to handle flying back. I’m on a 7:15 am plane, and it will be nice to be home. They say I should expect to feel tired on Friday, but that’s OK. At least I know it might be coming.
As far as restrictions, I don’t have any major ones. No grapefruits or oranges. No St. John’s Wort or any homeopathic remedies. If my platelets are low, I can skate, but they don’t want me taking risks that might cause a fall and induce internal bleeding. That’s it.
So far, so good. Let's hope I tolerate the other meds as well, but even if I don’t, this drug isn’t FDA approved to treat people who haven’t had other treatments, so it’s a win either way. The next drug is what they would have given me at Penn (ibrutinib) and I'm fairly confident I'll be able to handle that, too,
Thanks for reading, and let me know if you have any questions.
PS I will be putting this on a blog for family and friends. Please let me know if you all think it makes sense to cross post here and if you think this is useful for the community.