Back to the Beach and Thankful for the #ASH21 Experience

Back to the Beach and Thankful for the #ASH21 Experience

What an amazing time it has been at ASH!  #ASH21 #IMFASH21  

It was great to see the new trials, updates, and options that are available – or at least soon-to-become available. There was something for almost everyone along their myeloma journey – from monoclonal gammopathy of undetermined significance (MGUS), to smoldering multiple myeloma (SMM), to active myeloma.  

How wonderful to see the passion and interest from those within the medical community! I am so thankful for their dedication to find treatment options, protocols, and guidance for those of us with myeloma.  

It was also great to get some updates on the vaccines, COVID-19, and myeloma. With new data coming out on many questions that we have had over the past few years, this new information is highly appreciated. For example, it was amazing how the third vaccine shot really made an impact to some of the patients. I truly appreciate all the research being done so that we can try to make the best decisions for ourselves and our families with the information that’s currently available.

I want to thank the IMF for the opportunity to participate in ASH. I also want to thank the IMF and ASH for the virtual component. I feel that I gleaned just as much out of ASH virtually as I would have in-person. I hope that ASH continues to explore the virtual platform for years to come. Virtual attendance makes ASH accessible to everyone – not just to those who are able to travel.

I look forward to sharing these new updates and educational/informational updates with the MM Families Virtual Support Group!  I think that to be able to absorb and process all this information, I will go back to the beach and enjoy the blessings of the day— including the hard work and effort that so many dedicated people are making for those with myeloma.  Thank you!

Sue Massey, on Twitter @Mmfamilies_IMF

Connecting with Others

Connecting with Others

“The most important things in life are the connections you make with others.”—Tom Ford

While I am grateful to be attending ASH 2021 virtually this year, I do miss the experience of interacting with my fellow International Myeloma Foundation (IMF) Support Group Leaders (SGLs). I have fond memories of sharing meals with other SGLs and learning so much about their families, their professions, and the impact that myeloma has on their lives. I still remember my first ASH experience where I learned so much about the diverse histories of the amazing people with whom I attended. We were united by the common thread of myeloma.

I am particularly grateful to be attending this year’s ASH virtually because my dedicated dog is in “hospice” with worsening anorexia and plummeting weight loss. Despite her condition, she follows me to my office where I continue to learn more about the current and latest treatments for this unshakable disease. I remember her squeals when I came home from California from my stem cell transplant 11 years ago. I so appreciated her staying up with me when I had steroid-induced insomnia. In the middle of the night when I awoke with racing thoughts about my disease, my family, and my future, she was right there by my side. I will miss her dearly.

Don’t get me wrong, the amount of information I continue to learn is truly valuable and I look forward to sharing this knowledge with my local Support Group members. Most of our local meetings are highly informative and we learn about current therapies, new drugs, and their side effects. However, there is no real substitute for getting together in-person to communicate and share ideas and stories about our families and our treatments.

Listening to experts from across the globe means connecting with people who are committed to finding a cure and improving the lives of myeloma patients. We learn to appreciate their dedication to research and clinical trials. We anticipate hearing from them, year after year, as their research progresses from phase I to phase II studies. Even though we don’t know them personally, we start to develop a connection to them — somewhat like a favorite actor, musician, or athlete.

John DeFlice, on Twitter @johnde1MYELOMA