Back from NIH and the meeting with my medical team. I had the wonderful experience of sharing some time with my blood brother George and my blood sister Fran. I remember one time years ago we were laughing so hard in the clinic lobby. We were laughing about cancer. Yes, we have a sick sense of humor. It has gotten us through all these years together as survivors.
Good news! No more CT scans or bone marrow biopsies in this clinical trial for me. I am going on six years with ibrutinib.
Well another boring normal blood report. My platelets are in the normal range but at the lowest it has been. These numbers fluctuate with infections.
My white blood count is 9.7 (3.98-10.04 K/uL) is normal. Lymphocytes Absolute: 1.34 (1.18-3.74 K/uL) is normal.
There are two arms of this clinical trial: Arm A for elderly (65 and older) and Arm B for 17p deleted. Even though I am technically “elderly” now, I am in the Arm B – the poor prognosis arm, the difficult cases. There are 35 of us in the B arm and eight are out of the study because of relapsing. Most have moved on to venetoclax prescribed by their home doctor and are doing well. Those patients come to NIH for follow-ups and NIH acts as a consultant. The rest are either in alternative clinical trials. One relapsed on venetoclax and had an unsuccessful CAR-T procedure at Seattle Cancer Care.
We had to sign another clinic consent form because five ibrutinib users throughout the United States have had issues with arrhythmia, which is irregular heartbeats. I do not have scientific evidence, but most of the patients I know about who have this side effect have had prior heart issues before going on the drug.
I had an appointment with my cardiologist a couple days after I returned from NIH to see if I needed to be on blood pressure medicine due to the side effect of increasing high blood pressure. I made the appointment three months ago. I thought that was one of my side effects, since my blood pressure has been increasing the past year. Surprise! My blood pressure at NIH was 123/51. In the second NIH reading the diastolic number (bottom) went up a little. My cardiologist looked at all my readings from the past month and my blood pressure is normal. He said I must have fixed myself. Diet and exercise is the key. Here is the humor in that statement: Because I have had a bum knee, I have not exercised the past couple of months and gained several pounds. As a post-menopausal woman, I can look at a slice of bread and it appears on my hips, if I don’t exercise. Go figure!
So, I am good. I just keep on keeping on and try to live an authentic life. (((HUGS)))