The latest installment of my OSU Obin/Ibrutinib/Venetoclax trial adventures...
Last week was just a test week, so there was nothing new to report. However, today marked the beginning of cycle 2 of 14 of my clinical trial. As I said to Stephanie, my nurse at OSU, 1 down, 13 to go. Thankfully, Cycle 1 was uneventful except for the during the first obinutuzumab infusion and even that was very minor. My energy was very good throughout the month, and my life proceeded as usual.
Today they started me on ibrutinib (Imbruvica is the brand name), the second med out of 3, and the one the doc at Penn wanted to put me on exclusively back in March. It’s a once a day 3 pill regimen, and a monthly supply retails for about $8000. I’m very lucky to have a copay of only $10 a month (and the other meds are provided by the drug companies for free because they aren’t approved). If I had taken it as a single agent (one med therapy), I would have take it forever until it didn’t work, and the more I have read since I got my second opinion in March, the more it is obvious I would have likely relapsed pretty quickly given my high risk factors. During this trial, I take it for 13 months and then stop. The hope is this treatment will cure some people, and short of that provide a durable, med-free remission.
The pharmacist went over the potential list of ibrutinib’s side effects, which is pretty extensive. The ones they kept emphasizing again and again were bleeding and bruising, though I am move concerned about atrial fibrillation (which affects 10% of people). If you are that curious, you can google side effects ibrutinib. Just plan about 3 solid minutes to read them all. Long story short, I might be completely fine or I might feel pretty bad. As usual, I’m not planning on the worst result but I also must get this itchy rash under control. The last thing I need is to get and infection or bleed out thanks to scratching.
The numbers continue to move in the right direction (this week/2 weeks ago)
White BC (13.4/17.9)
Red BC (3.33/3.27)
Absolute Lymphocyte Count (10.18/11.8)
Thankfully, I’m allowed to get blood drawn locally and avoid the trip to Columbus when it’s just a test week. Last week was a test week as are the next three weeks. I don’t need to return until August 9. However, that’s when we start the third drug, Venetoclax, which is the one that really can do you in. I have to stay overnight (as an outpatient) for testing to make sure I don’t suffer from tumor lysis, which can happen if too many cancer cells flood the blood stream. They try to avoid this by keeping you very well targeting and by starting with the other two meds to take care of some of the tumor load.
Although it’s been the right decision for me, participating in a clinical trial that requires travel isn’t for the faint of heart. I’ve had one of my two flight segments canceled each of the three times I went to Columbus. This time, my flight out was cancelled, and I ended up getting to my room at 1 am. I was wound up and couldn’t sleep which wasn’t handy because I needed to be at the hospital by 7:15. I’m hoping my flights in August are a little less dramatic.
That’s it for now. Let me know if you have any questions.