|
Hi, Patti: My mom started with Revlimid although the doctor indicated it was primarily used for a different type of MDS than hers. We wanted to try to a pill therapy before coming in for the 5-day IV therapies. Medicare covered most of the cost and she had a very small co-pay for the first few doses, and then it was no charge. I'm not sure if a foundation grant was picking up the co-pay or not. We were only given or three weeks supply at a time, and had to return for bloodwork before the next prescription was filled.
Unfortunately she had a very adverse reaction and the medicine wiped out her marrow. She felt progressively worse, which she kept trying to deny. She looked generally unwell with a gray pallor, was sleeping a lot, developed petechiae and experienced dizziness. When I saw her stumble about in front of me, I made her call the doctor. The office actually wanted her to wait for her scheduled appointment the next Monday and I got on the phone and said it couldn't wait and that I would take her to the ER otherwise. She was seen by a different doctor that day. After taking her counts (3 times), she was immediately admitted to the hospital for blood and platelet transfusions and taken off the drug. She had never needed platelets before.
Once we were out of the woods, her doctor suggested that she go back on the Revlimid at a reduced dose, but my mom had had such a bad experience that she didn't want to. I don't know why the doctor never adjusted her dose while she was taking it.
Please note, my mom has an added complication of end-stage renal disease. Upon discussing this with another doctor, we felt that Dacogen may be the better route. We were told that Revlimid is cleared by the kidneys and since her clearance is less consistent with her home dialysis, it is harder to manage the correct dose; whereas, Dacogen is cleared by the liver.
As you a probably already know to do, I would just suggest being hyper-vigilent for any new symptoms and pay attention to declining counts.
|