We are a day from my next visit to hema/oncology where we will find out how the new medicine is working. This time I just want to make a quick post on the meeting my family and I went to last week. On last Thursday we went to the Voices of MPN meeting in Charlotte, NC. I debated about going but thought maybe it would provide some more information as to this disease and maybe meet a few other people and talk a bit.
I am not very good in social settings, I am kind of shy now, where I use to be pretty outgoing. I didn’t know quite what to expect. Part of me kind of envisioned something almost like a trade show since it was sponsored by Incyte. You know where you walk around to different booths and at a certain time there would be speakers. I don’t really know why I envisioned this but I did. As I already mentioned I debated about even going as it was an hour and a half away, but after talking with David of www.pvreporter.com on facebook I decided that I should go. I figured maybe there would be some new information that I could learn and If nothing else to talk with and meet David.
My spouse and daughter went with me and we were greeted with a small table out front where we checked in and they gave us name tags. Then we walked into a decent sized room in a hotel where there was a table set with snacks and several other tables set up with water goblets. We chose a table on the opposite side and then got some snacks. A little bit later David arrived and we talked a little bit. Another woman sat with us at our table as well.
The speaker was very knowledgeable, and forgive me but I cannot remember the gentleman’s name. The thing that really surprised me was that one of the first things he mentioned was that we were not there to discuss medications. Being sponsored by a drug company I found this surprising and refreshing at the same time. This means that there will be no pushing of their products on patients. The information was pretty standard, about everything that he talked about I had already learned from my own research. But as other people asked questions about different aspects the gentleman had quick and precise answers to those questions in most cases.
At one point the speaker wanted to go around the room and have the patients introduce themselves. The coolest part of the introductions was one lady who was purely there to let everyone know that she had successfully gone through a stem cell transplant and as she put it, was in full remission. It was exciting to hear that even though the disease changed to MF in her that there is hope in different kinds of treatment.
After the meeting was over they gave time for people to mingle. Not being real outgoing we finished our snacks and kind of escaped. I wish I could get past that, and in some environments I do ok. Overall I would say that it was a pretty good informational source, more so a place to meet and talk with other patients.
If you have one of these coming up in your area I would say to give it a shot, you might learn something and maybe make some new friends. Check out https://www.voicesofmpn.com/events-calendar.aspx