I participated in an hour long panel discussion yesterday, featuring Dr. Ravi Vij, a myeloma and transplant expert from Washington University in St. Louis, along with a half dozen other patients and caregivers.
Sponsored by TrialX, this Multiple Myeloma Cure Panel broadcast was the first of what I hope to be many teleconference style discussions about topics which concern multiple myeloma patients and caregivers.
The audio wasn’t the best, but some interesting questions were raised. For example, I asked about dexamethasone and optimal dosing. Getting Dr. Vij to admit that researchers aren’t even sure what the average optimal dose is–let alone for an individual patient–was telling.
Dr. Vij responded that researchers are concentrating on keeping patients alive longer, so too many quality of life issues are put “on the back burner.”
I asked if 40 mg of dex had proven to be an optimal dose. Then I asked if researchers knew when it was best to take each dose. Dr. Vij’s short answer: “No.”
Our good friend and Purdue researcher, Gary Blau, would have dropped his phone if he were listening!
For those of you who haven’t been following along regularly, Gary and his Purdue University colleagues, have developed a way to answer these very important questions.
Just imagine how much better our quality of life would be if we knew the answers to these dosing questions. And our doctors would probably get better results from the therapies they are using, too!
I didn’t actively promote the broadcast because I wasn’t sure how well it might work.
A few bugs aside, I felt the hour was very worthwhile. I have interviewed Dr. Vij in the past. One great thing about him is he isn’t afraid to answer a question openly and honestly.
My old friend, fellow myeloma blogger Nick Van Dyk, participated as well. But while I was focused on day-to-day, quality of life issues, Nick reminded me that Dr. Vij opened with a startling pronouncement.
According to Dr. Vij, as many as 10% of people treated with newer novel therapy agents in combination with an auto transplant “look like they might be cured.”
Wow, Nick! Guess I buried the lead! Here I’m worried about better ways to deal with dex, and our guest doc was talking about a cure!
I am looking forward to learning and sharing more with my fellow patients on future broadcasts. I promise to let you know when that is–and how you can access each program.
Feel good and keep smiling! Pat