Myeloma Field Trip… Oh My!

The past year was busy for me in regards to gaining recognition in the myeloma community. As I move forward as a patient advocate, I’m learning some very important details as it relates to multiple myeloma.  The question I have is, “How many patients out there that are not getting access to the many intriguing conversations surrounding multiple myeloma”? I wanted to share my experience at the Janssen Oncology Summit that took place a few months back. The company reached out to me with an invitation to attend their first Multiple Myeloma Online Patient Advocate Summit. Well, here’s my viewpoint on what this well-informed field trip meant to me.

An interesting group

I was ecstatic to meet other influential multiple myeloma advocates that I follow on social media platforms. Who better to relate with than other myeloma patients? I met the informative “Myeloma Teacher” Cynthia Chmielewski, and Jenny Ahlstrom of Myeloma Crowd, to name a few amongst the other influential myeloma fighters. This tiny group of eight attending this summit was such an eye-opener for me and I feel honored to report some hope. Each attendees' stories were so different but, actually, the same as we all experience this bizarre cancer and each person has found a way to use our voice, words, and actions in coping and spreading information to the many survivors. Janssen wanted to learn more about us, and bringing these key players together in the same room was extremely special. It showed me that my concerns are shared with others. Therefore, for many of you reading my words, know that you’re not alone.

Optimism…really

Do you feel optimistic? Do you think there will ever be a cure to multiple myeloma? Well, before I attended this summit, I wasn’t really sure what the future held in getting a conclusion to this disease that affects 1 out of 132 cases in the United States. There were 30,770 new cases reported of myeloma in 2018 alone. The optimism may seem bleak when trying to encompass the disease itself. However, I must say the developments in the treatment of myeloma have come a long way from the 9-10 years when I was diagnosed.  It was deemed in 5 years I would be dead based on those statistics back then. It’s great when your personal oncologist stresses hope with this disease, it’s another when a scientist working day and night to save us tells you this. Peter Lebowitz, M.D, Ph.D. and Brian Kenney. M.D started conversations with, as we move forward in beating this disease, “We must approach this disease with optimism.” Though we’re faced with the toxicity issues faced with many of these medications, there are good signs for many that the medications our here are actually working. It seems scientists are making many attempts in hitting the disease in multiple directions, and that will help to cure the disease. Yes, “cure.” I like that term better than remission. How do we eradicate this myeloma business altogether?! I’m optimistic!!

Wow, a lab!

Okay, so our small team had the pleasure of suiting up to walk through a sterile lab, seeing the scientists at work with actual myeloma cells, and studying various ways to control this disease. I was absolutely fascinated with this walkthrough, and speaking with the Janssen team at work was amazing. Again, It’s one thing when your doctor is explaining advancements in the disease, but it’s another conversation to see what it takes to save us and to see the faces that are trying to save us. I was pleasantly satisfied with the developments taking place today. The future in another 5 years or sooner may be brighter for many of us struggling with the disease. I was more amazed by the scientists on different teams stepping out of their offices to come to speak with the patient advocates. They were just as amazed and inquisitive to see how their work has helped in however small or big ways. Conversing with actual patients seemed overly exciting for many of the faces I met. The consensus of speaking with a patient going through the wails or successes was equally educational for all parties. The talk about CAR-T cell therapy developments was even more exciting… now I understand the process a bit more. It helps when a scientific team breaks down the logistics of many of these novel science therapies. Janssen is the developer of the monoclonal antibody Darzalex (daratumumab) and meeting some of those involved in earlier studies like Jordan Schecter. M.D was sweet!

Why was this important?

Having myeloma patients observe the activities of one of the leading myeloma pharmaceutical companies was very important.  Let’s face it, pharmaceutical companies have a dual reputation, whether you see them as savior or offender, they don’t usually have a flattering rep. I can only express my opinion, and that is I was impressed with what I observed. I was fascinated that the team wanted to understand the various faces and experiences of myeloma. When I sit in a waiting area waiting for labs, follow-up or what have you, the faces I see on these visits just tells me there’s more work to be done. Would your perspective change if you actually met the scientific team that is propelling the spectrum for a cure? I’m sure many may not be phased by this, but others may hold on to that spark to keep fighting, to see that some companies are really making big gains and care to end this disease. This summit showed me that though I’m in remission, it is imperative to share information like this because the thing myeloma patients need more than anything during treatment is hope. Hope that there are many entities out here fighting for the present and future lives affected by multiple myeloma.

I say keep on believing and fighting, because though you may not see or speak with those putting things in motion… trust and believe they’re out there.

Editor's Note: Janssen paid for travel and lodging expenses for attendees at the summit.

The time to fight is now, with integrity, grace, hope, and a smile….when you feel like it