Barry Marcus Patient

When were you first diagnosed with multiple myeloma?

I was first diagnosed with MM in July 2015.

How has it affected you, physically?

The physical effects are mostly due to treatments:  neuropathy in my feet and lower legs, persistent anemia (low red blood cells and hemoglobin), loss of teeth due to osteonecrosis of the jaw caused by treatment with Zometa.

How did you get involved with the MMRF?

I’m in a multiple myeloma support group in Sacramento.  Group members often provide links to MM organizations and the information they provide.  These include LLS, MMRF, GRYT health, and others.  That’s how I learned about the MMRF.  I’ve also attended conferences both in person and online.  

What do you want people to know about multiple myeloma?

I want people to know that MM is not a death sentence.  It’s become somewhat like a chronic condition that can be managed, and that living a fairly normal life for a long time after diagnosis is possible.  The efforts of groups like MMRF are essential towards finding a cure or putting patients into long-term remission.

Why is participating in the MMRF Road to Victories ride important to you?

Participation is important because it lets other patients know that great physical and psychological achievement is possible even after a long time with the disease, and that treatments, which can be rough, are worth the continuing effort.

What are you looking most forward to/excited about in regard to the ride?

I’m excited to meet the other riders and develop the camaraderie that comes with a strenuous joint effort.  I’m also looking forward to raising a lot of money.

What does your training regimen for this event look like?

I could do this event now.  At least the shorter legs.  I’m a life-long runner and cyclist.  I did the California Triple Crown in 2005, and rode my final double century (Davis) in 2012 at age 61.  While I can’t do anything like that now, I’m riding about 75 miles/week and plan to keep that up.  An average ride for me is 20 – 25 miles with around 1000’ elevation but I’ll ramp that up a bit before the event.  The wild card here is that while I’m now in remission from a CAR-T procedure (January 2023) I’m past the median time of remission and could require additional treatment (likely to be BiTES) before the event.  I can’t let that deter me for making plans for the future because we never know what we’re going to get.  This may sound a bit melodramatic but I do feel that cycling has extended my life and kept me fit enough to do the other things I like to do (hiking, snowshoeing, household projects).

Describe any challenges you have needed to overcome to be able to participate in this event.

The anticipatory challenge is to keep up the riding I’ve been doing for the past years.   I grieve for the person I used to be, but accept where I am, and am grateful for all the medical and personal caregivers that keep me going. 

Who/what inspires you?

Medical researchers working towards cures of all now incurable diseases inspire me.   

Have you participated in previous MMRF events? If so, which/when?

This will be my first MMRF event and first fundraiser.

Anything additional to add?

I’ve got a lot of great stories to tell and look forward to sharing some of them with the group (and hearing others).

Sorry, there are no posts from this member.
The Multiple Myeloma Research Foundation (MMRF) is the largest nonprofit in the world solely focused on accelerating a cure for each and every multiple myeloma patient. We drive the development and delivery of next-generation therapies, leverage data to identify optimal and more personalized treatment approaches, and empower myeloma patients and the broader community with information and resources to extend their lives. Central to our mission is our commitment to advancing health equity so that all myeloma patients can benefit from the scientific and clinical advances we pursue. Since our inception, the MMRF has committed over $500 million for research, opened nearly 100 clinical trials, and helped bring 15+ FDA-approved therapies to market, which have tripled the life expectancy of myeloma patients. To learn more, visit

Learn More

At Johnson & Johnson, we believe health is everything. Our strength in healthcare innovation empowers us to build a world where complex diseases are prevented, treated, and cured, where treatments are smarter and less invasive, and solutions are personal. Through our expertise in Innovative Medicine and MedTech, we are uniquely positioned to innovate across the full spectrum of healthcare solutions today to deliver the breakthroughs of tomorrow, and profoundly impact health for humanity.

Learn more About Johnson & Johnson inovative medicine Learn more About Johnson & Johnson Follow us on @JanssenUS And @JNJInnovMed