October 31st was a real scare this year. No, not from a person saying boo or wearing a scary costume. Our scare was from the article in the New York Times telling us that the drug that Sue depends on was being taken off the market. The FDA felt that the number of severe side effects from the drug was too great without reevaluating. However, they said that the manufacturer could continue to give the drug to those for whom there was no alternative.
So the next few days was a scramble by Sue's doctor and others at Johns Hopkins to quickly set up the "studies" with full documentation for each of their patients taking the drug. Fortunately, since Sue had taken the drug prior to FDA approval, all of that paperwork was ready to be dusted off and used again. Within a couple of weeks things looked good and Sue had had a 28 day supply to lean on. And in just in time before leaving to go see relatives for Thanksgiving, we were able to go to Baltimore to pick up the drug and be thankful that Sue did not run out or worse.
So we had a wonderful Thanksgiving and Hannukah in northern New Jersey and did not need to be worried. I still was hoping that we could push for the drug to be re-approved soon and that others that were still struggling to get back on the drug would have an easier time of it. I volunteered to help in the effort.
When we met with Sue's doctor last week, we went over various issues including the higher blood pressure, another side effect of the drug. He upped the prescription and that has made a significant difference in just a few days. Otherwise, besides dry skin, Sue's numbers continue to look good.
The doctor did tell us that the ASH conference the previous week (yearly leukemia/blood disease conference) had many people who complained bitterly about the drug being taken off the market. Although the side effects are dangerous, for many there is no other choice. The other wonder drugs have their own side effects and also do not help a certain mutation class of ALL Philly+. I think that the FDA heard the message loud and clear, and just this last Friday announced that the manufacturer could market the drug again, but with new warnings.
So from scary Halloween, to thankful Thanksgiving and now to a potentially healthy and happy New Year, it has been a bit of a roller coaster ride. We want to thank all of our friends, relatives and health care folks for their love and support. I wish you all a very festive season and good cheer and a very Happy and Healthy New Year.