Today I had my 6 week visit with Dr. Kipps and an IVIG infusion. It wound up being a long day for more than one reason. We fully expected to go down there and get more information on the Clinical Trial ABT-263 and make a decision on when I might start that treatment. This was at least the desired plan, and then we got my blood results. My White Count has risen almost 50,000 to 122,000, and more importantly my hemoglobin has dropped from 15.1 to 11.7. This is a sign that my AIHA (autoimmune hemolytic anemia) has raised its ugly head again. To confirm this, they also ran another test (A Coombs test), and this turned out to be positive, confirming the AIHA in its early stages. So now the plan is to treat the AIHA, starting with a bone marrow biopsy tomorrow (they don't mess around), and starting me once again on the lovely drug Prednisone. As soon as the AIHA gets under control in 6-8 weeks, we will once again look at beginning treatment (of some sort). End of short report.
This really caught us off guard. I have been feeling great with no indication that the Anemia was returning. I have been playing a lot of golf, tearing out part of our backyard to lay 100 sq feet of pavers, and generally feeling normal. We really expected this trip to be a discussion of the Clinical Trial, when it might start for me, and what tests I would have to have before the trial began. During my physical exam, Dr. Kipps did find that my spleen was slightly enlarged (not good), but my lymph nodes were a mixed bag of slightly larger, the same or in some cases slightly smaller. He indicated that we may wait a little longer to do ANYTHING, including the clinical trial. Of course this was his opinion without seeing my blood results. Apparently the blood testing machine broke down and my blood results were not available during the exam. So we were feeling pretty good, and marched off the Infusion Center for my monthly IVIG infusion. About half way thru we asked my nurse if she could check and see if my blood test results were available yet, she checked and brought them to us. I honestly thought she had brought the wrong person's results. I double checked to make sure my name was on the paper. Unfortunately it was. To say that we were shocked is an understatement. We expected a slight increase in the WBC, but never even thought that the hemoglobin would be low.
I immediately put a call in for Dr. Kipps nurse and left a voicemail saying, 'Did you see my blood results'? We finished up the infusion and marched back to the clinic to get some reading of what was going on, and what the plan should NOW be. We caught up with his nurse and she had not seen the results, so when I told what they were, she said 'I will go talk to Dr. Kipps'. Donna then said to me, 'they are going to want to jump on this right away'. Dr. Kipps nurse came back out in a couple of minutes and said, 'you are coming in tomorrow for a bone marrow biopsy, and we will more than likely start you on prednisone tomorrow'. Just great. Here I thought we were going down the clinical trial / treatment road, and now there is a detour in the road and we are going back to the AIHA treatment road. I have been on that road before and I really didn't plan on going on it again. All of this is not completely unexpected. Those of us with CLL who get AIHA (about 11%) wind up having it recur more often than not. Unless you can get rid of the CLL (which really means put it in a remission state for some period of time), chances are AIHA will return.
Even though the clinical trial ABT-263 is off the table for now, it is not gone forever. There is a high probability that I will be eligible for the trial when I whip this AIHA issue. That may actually be a good thing. The trial officially opens August 10th, so they may have results for a 6-8 week time period when I begin. Dr. Kipps and I discussed the trial and the Phase I results and how well I might respond to it. He was very positive about the results so far and did think I would be a good candidate. I like it because it will not close the doors on other treatment options if this one doesn't work for me.
So needless to say I am not too upbeat right now. Although I know the immediate AIHA problem can be resolved (as it has been in the past) it was certainly not where I expected this to be going. It just reaffirms that CLL does not have a 'standard' course of escalation or a standard course of treatment.
Terry
No comments:
Post a Comment