On Friday, he asked if his eyes and skin looked more yellow or jaundiced than normal and I said yes! I had been asking him to contact his doctor at Cleveland Clinic to check in and get his biopsy results. He decided not to take his trial drug AG221 that day, because we know that it elevates his bilirubin at least 2-3x higher than normal, even though this increase is within the acceptable limits of the drug trial protocol which allows his bilirubin levels to go up to a maximum of 5x the normal level.
Normal bilirubin about 1.5
Maximum bilirubin allowed on the trial 7.5. But even then they don't like it that high, because it can cause liver injury.
Todds level on the drug usually stays around 2.5-3.5.
I decided that it we should call the doctor. Not only I had noticed that he looked more yellow, but had asked him if his urine looked like it was darker than normal. Almost brownish red. He said he didn't think so, but after putting the stomach ache, dark urine, and greater yellowing/jaundice, I thought we wedded to ask.
I called his doctor, but she was out of town at an ASH conference, but his nurse said she would run it by his trial nurse Sam and the doctor taking over for his doctor. Sam called me back quickly, and it was decided that they need some blood work. She worked with the doctor and faxed in orders to our local lab and have it processed STAT.
Within 3 hours he had the blood work drawn, the results back, and we got a call back from Sam. All of our concerns were justified. His Total Bilirubin was 7.7 and his direct bilirubin was 4.4. His Alk phos was off the chart at 400! (Normal 45-115).
So, Todd was told to go off his trial drug immediately. They scheduled an appointment for him at Cleveland Clinic on Tuesday where they will do some extensive blood work and see the doctor.
Sam also looked up Todd's last bone marrow biopsy results, which sowed another 1% increase in blast cells, bringing them up to 4%. I still don't think this alarming, but I don't like that in the last 4-5 months his blasts have gone up slightly each time.
Please pray that they will find out why his bilirubin went up so much and can recommend appropriate action. I think it is just the accumulation of the trial drug over time causing the escalation. Especially since he already suffered some liver injury when he was in the hospital last October where he suffered similar elevated numbers due to the addition of numerous medications to get his fever down and treat the pneumonia. The highest his bilirubin was then was 8.7 which was crazy high. Even then though his alk phos numbers were about 219.
I'll post an update of what we learn after Tuesday's appointment. Thanks for your love, prayers, and support.
