Well, I have completed Round 3 and seem to be doing pretty well so far. I am not having the same side effects that I had last round, so maybe I am adjusting to the drugs, or maybe my body just doesn't care. Most of my blood numbers look good with the exception of one, my hemoglobin. I will explain that in more detail in the next paragraphs. I now get weekly blood tests up here and don't have to drive down to La Jolla every week, so that is a good thing. Round 4 is scheduled for August 3rd. End of short report.
Since last month, my hemoglobin has dropped over 6 points, from 14 to 8, which is not a good thing. The fear was that my autoimmune hemolytic anemia was back, but the tests to confirm that have all been negative, so we really don't know what is going on. The most likely cause would be because of the drugs, either the ABT or the Bendamustine, but that is just a guess. My blood test on Wednesday (the 7th) had my Hgb at 9.7, and on Thursday it was 8.7, this then triggered all the red flags. If it drops below 9 I have to be transfused. If it drops below 9 and it can't be raised by transfusions, I am off the trial. So on Thursday they requested a type and crossmatch for 2 units of red blood. This was done about 9:30, and I had resigned myself to the fact that it would take 24 hours to find compatible blood. My problem (besides not being able to break 80) is that I have antibodies in my blood that are difficult to match, that is why it takes a long time to find some blood I can use. Since I was already at the infusion center I told them to give me my Pentamadine, which is to protect me from pneumonia. This is about an hour process and I was done about 11:30. So I packed up all my stuff, and started walking down the hall and I heard someone calling my name. I thought I had forgotten something, but they told me that 'THEY HAVE THE BLOOD'. The nurses and I both thought it was a mistake. First they said they had the plasma, which is not what I needed. Then they said, no, it is blood. Then my nurse said to them, 'are you sure, he has a lot of antibodies and it is tough match' then they said, he has minimal antibodies, and it was an easy match. So I went back in the chair and for the next 4 hours received 2 units of blood. The next day, Friday, was the first test to see if the blood had helped me. It had, I went from 8.7 to 11.1, so now I was back on schedule. I got my Trial drug, and an infusion of Bendamustine and we were out of there by 12:30. I actually felt pretty good, and we went out to lunch and stopped by a nursery in Solana Beach, and stopped by Costco on the way home.
Before I left La Jolla they gave me the last dose of the trial drug to take on Saturday morning. So this morning, I had a hearty breakfast (you can't take it on an empty stomach) and took my medicine. I felt pretty good for about an hour, then the queasiness set in, so I popped a Zofran for the nausea. I felt OK for about 8 hours, then the Zofran wore off and I popped another one. I am not sure how long this cycle will last this time, but I hope it is shorter than last time (7 days).
I can deal with the side effects this time because I know they will eventually go away, but my main issue is why my hemoglobin is going down, when will that stop and/or how long this last transfusion will last. Thru a variety of tests they don't think my AIHA (autoimmune hemolytic anemia) is back, but they aren't sure why that is going down, when all my other numbers are looking so great. If it wasn't for that one issue I would once again be a 'poster boy'. I have another blood test next week, so we shall see how I am doing at that time, and what the next step will be. According to the good Dr. Kipps, I can continue on the trial if all I need (easy for him to say) is a transfusion every couple of weeks. So as long as we can keep the Hgb level above 9 I am good to go.
On a positive note, we had a great 4th in Seattle with all of my family who lives up there, and we added Jeff & Kristen, Donna's parents, her brother Bill, sister Nancy and her two kids, Jenny and Jeremy. A great time was had by all. Thanks Rebecca and Cherese for a great B&B.
