As I reflect on my first attendance at ASH, three things stand out in my mind:
- After seeing the presentations of the hard-working, brilliant and dedicated doctors and researchers, I know in my heart there will someday be a cure for Multiple Myeloma. I also include the brave patients, who help all Myeloma patients, by participating in clinical trials. For many of these patients, it is their only option after many different regimens of treatment. I think it would be both frightening and hopeful to enter a clinical trial. As I listened to the presentations, read the data and observed the doctors discussing the treatment they would offer their patients in differing situations, I realized the treatment of Myeloma may be even more complicated now that we have so many new drugs and more on the horizon. How best do we use these drugs? In what sequences? What drugs work best with high risk Myeloma? While there are many answers, many questions remain. This underscores even more the importance of being treated by a Myeloma specialist ….which brings me to….
- …..the importance of being a knowledgeable patient! As the International Myeloma Foundation tells us, “Knowledge is Power!” We, as patients, need to do our part in becoming our own advocates which enables us to make shared decisions with our Myeloma specialists. We can do this by taking the time to educate ourselves. The International Myeloma Foundation is built around this concept with- Patient Family Seminars, Dr. Durie’s Blogs and Videos, the Helpline, Support Groups and their myeloma.org website. A fellow #myelomawarrior and group leader told us that when her doctor sees her on his schedule he knows he needs to be on his “A” game! I immediately understood why. She takes the time and puts the effort into understanding her disease and works with her doctor in the treatment of her Myeloma. I believe our treating doctors want us to be informed patients. A Myeloma specialist, with whom we have the utmost trust, and a knowledgeable patient, equals a dynamic duo against Multiple Myeloma!
- I didn’t choose to have Myeloma – it chose me. But in so doing, it has brought extraordinary people into my life – the members of the IMF, the members of our Pittsburgh Support Group, and now the amazing group I was honored and privileged to join at #IMFASH18. Their talent, dedication and hard work in helping all Myeloma patients along with their kindness is unparalleled. I must add, they also have a great sense of humor – which is so important in our Myeloma world! In my first blog, I thanked Myeloma for teaching me how to face challenges in life. I also thank Myeloma for these wonderful people who have a special place in my grateful heart❤️