Well, today I was supposed to have my 8th round of treatment and as of right now, I am home. Things didn't go as planned. Even though my external exam was excellent, my white count is good and my blood ratios are good, my red count has dropped to a level where Dr. Kipps doesn't feel comfortable that we should continue the trial at this time. We will continue to monitor my blood levels on an almost daily basis to make sure the autoimmune hemolytic anemia (AIHA) has not returned. No one is sure what is going on, but he didn't want to do any treatment that might make my situation worse. End of Short Report.
This was completely unexpected. Last week my red count was 14.5; today it was 12.0. That kind of drop in 6 days is something that has to be monitored closely. My platelets have also dropped to an all time low, not to a dangerous level, but just another mystery. The last thing they want is to have me get into a situation like I was in 2007; so I will get my blood checked tomorrow, Friday and Monday. If it drops below a certain level I will have to start taking steroids, and have a type and cross match for a transfusion. I can have the blood tests done locally, and in Palm Desert, where we will be spending Thanksgiving with a large portion of the family (All 4 kids will be there). Unfortunately, if it drops too low, I will have to go to La Jolla to have the type and cross match, so that they can do the transfusion down there. Of course, the Thanksgiving holiday puts a whole new dimension on the situation. I just hope I don't need a transfusion on Thanksgiving.
The trial coordinator checked to make sure that I am not dropped from the trial because of this. They said it was OK to take a break for a while. They are going to do a blood test this week that will tell if there are any leukemic cells in the blood. This is called a Flow Cytometry. If that shows nothing, then they will do a bone marrow biopsy to dig deeper (pardon the pun), to see if they can find any cells there. If they can't find any cells they will stop the trial (good news). If there are cells, then we will probably continue once this current mess gets cleared up.
There are a lot of variables here, and the next week or so will probably tell us what is going on. Please keep me in your prayers during the upcoming week.
Happy Thanksgiving!
Terry
2 comments:
Terry,
Dr Kipps is being very very cautious. As you know it is the trend that matters, so the follow-up tests will tell the story.
Enjoy your family and Thanksgiving
Brian
Missed seeing you at your house meeting... I truly hope your trial will even out this week, and you will find out that the blood and bone cooperate. I'll pray for you today, tomorrow, and throughout the weekend. I want you to have a calm triumph. I want you to win and be freed from the needles as soon as possible.
Lisa Guest
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