Sorry I haven't replied earlier.
Well, as her lucidity has been waning with her anemia, they jumped the gun and told her to take her Revlimid 15mg earlier than they should. Before we could get her uric acid blocker going.
That day she complained that she didn't feel right, something was wrong. It was a Wed or Thurs. By Saturday night, I called (like I do every night) and she asked me to come over, she needed help.
She was hallucinating, had jerking limbs and a host of other horrible side effects. I called the on-call oncologist who told me don't worry. Come Monday, we spent all day in the ER, skipping her dialysis to do so.
It didn't take them two minutes to figure out she had no idea what was going on and they put her in an ER room. Then gave her Dilaudid. I had to make sure she kept breathing. Didn't know the alarms went off when your oxygen drops to 50%. But wow. They do. I spent over an hour wiggling her into breathing again.
Then they gave her oxycodone and sent her HOME and told her to go to dialysis the next morning.
The next day after dialysis she wasn't better so I called all her doctors and demanded that she be admitted. I actually had a fight a little to do it. Finally, they got her in and it took a week for her to regain lucidity.
So, after a month, they said "let's give you the dialysis patient dose" of 5mg. I just looked at the Onc Doc. They probably should have started her there.
After two weeks of this low level treatment, she started getting worse again. Albeit, slower. However, I hit the giant STOP button, and everyone listened this time.
So the onc doc looked into it and found cases of posterior reversible encephalitis caused by Revlimid.
We are trying Velcade next week. Thankfully, she will receive the treatment in the office and be observed. Her hemoglobin is dropping again, so the anemia is back full force. We have to start kicking is ass, and soon.
