I can't believe it's been over three years since my last post. I apologize to anyone who might have been following my blog who got the mistaken impression that the worst may have happened to me. It hasn't, I'm glad to say! I'll see if I can briefly summarize the last three years.

The rest of 2010 (the year of the last post) was okay, I think, but in 2011 things definitely took a turn for the worse. I developed MF patches and plaques on my calves and on my left wrist, and they slowly grew. I also began to have difficulty walking again. Treatment continued to be topical steroid cream and antifungal cream. Didn't help. Dr. Duvic then put me on oral Targretin, which she said was particularly effective for MF of the feet. I got a lot of relief for my feet, but the wrist and calf spots kept slowly growing. Some time around the middle of 2011, Dr. Duvic and her team began to try to persuade me to sign up for a drug trial she was in charge of running. Since I seemed to be making some progress with Targretin, I was reluctant to abandon it. However, by the end of the year, it seemed clear that the Tagretin just wasn't doing anything for the calves and wrist, so I signed on to the study. I had to go without the Targetin for three weeks to get it out of my system. They didn't want me taking anything other than the test drug in order to try to ensure that any change in my condition was due to the test drug. So in January 2012 I began to go to Houston every three weeks to get an infusion of Brentuximab vedotin. The actual infusions lasted 45 minutes to an hour, with me either in a bed or a chair. Although they referred to it as chemo, it had none of the immediate unpleasantness of my previous chemo treatments. Except for the first treatment, when they kept for an extra hour to make sure I was okay, we were able to immediately get in our car and head back home. I was to have up to 8 treatments, over about 6 months, at which time I would be evaluated for another possible 8 treatments. After the first treatment, my spots turned even redder than usual, which we had been told might happen. We took it as a sign that the drug was doing it's thing. It was. Those first months of treatment were astounding. As I recall, by some time in April my symptoms had been reduced by about 90%. The main side effect that I noticed was increasing fatigue as treatment progressed. Noticeable, but I continued most daily activities. At first I also had an increase in ocular migraines. I normally have one a year, at most. But at one point during treatment I had three or four in a short period of time. That stopped. I also had some intestinal upset. Otherwise, we just sat back and were amazed at the efficiency of the drug. Toward the end of spring, though, progress slowed. I completed the 8 rounds, and they approved me for 8 more, of which I completed four before they halted my participation in the study in October or November 2012, having decided that they drug had done what it was going to do for me. They pronounced me to be Stage 1A and in partial remission. My existing spots were knocked back about 95%, in my unscientific estimation, and during the course of treatment (and since) I have had no new spots develop, knock on wood. I had hoped for complete remission, but I'll take what I can get! I need to stress that this drug is still in the testing stages for MF. It is FDA-approved for use with three other lymphomas, but NOT MF.  So as I understand it, you can't just go ask your doctor to treat you with this, yet. It still needs FDA approval for treating MF. Google "brentuximab" if you want to learn more about its mechanism of action. It' quite amazing.
Good health to all!
Mike