I was in the clinic recently getting an infusion when another patient in a seat nearby seemed like he wanted to talk. Bob approached me, saying he recognized me from my Myeloma Crowd work. He said that because we had Doug Sborov, MD share Huntsman Cancer Institute’s open clinical trials in one of our new Myeloma Crowd Community chapter events, he had chosen to join a clinical trial for his high-risk smoldering myeloma.
“I joined the trial because of you,” he said. “I wanted you to know that you’ve made an important difference in my life.”
I was very moved. I started patient advocacy by wanting to find a cure for myeloma to heal the body. What I didn’t realize is that on this journey, I would also find answers about how to heal the soul.
As I head now back into treatment after a very slow relapse, I wanted to share some thoughts about being a myeloma patient. I don't often share what's happening with me personally, but lately I’ve been reflecting on this incredible journey to turn something awful into something useful. My personal goal is still to find (and receive) a myeloma cure.
I may have shared this with you before, but it bears repeating because it fundamentally shifted my perspective on having myeloma. When we lived in Mexico, my husband Paul told a business associate that I had cancer. He responded by saying “Congratulations.” Paul was a little shocked by that response and asked him to elaborate. His son had died in a routine adenoid surgery, but upon his death, the family donated his organs to save the lives of other children. He then started an organ donation foundation and has since saved the lives of many children. He said:
“Now you have the opportunity to see the world differently and to serve in ways you could not have before.”
His comment helped me see cancer as an opportunity to see the world differently and serve people I would not previously had a connection to.
Paul is an optimistic entrepreneur who loves solving problems. Since we have been married, he has launched or invested in more than 150 technology companies. After my initial myeloma diagnosis and treatments, he suggested we treat this cancer like we would a startup. Let’s identify the key problems that have not yet been solved and start filling in the gaps.
For the last 9 years after I finished my initial myeloma treatment, that’s what we’ve done. I started with the Myeloma Crowd Radio program and added more programs over time – the Myeloma Crowd Round Tables, the www.myelomacrowd.org website, the Myeloma Coach program and our signature HealthTree Cure Hub and HealthTree University programs. The work has been intensely rewarding, and we have heard from thousands of patients who appreciate the effort and support that we provide.
I was able to do this because I’ve been incredibly fortunate. My initial treatment was aggressive: tandem autologous transplants, a year of consolidation treatment, then another year of maintenance therapy. My doctor, Guido Tricot, MD, PhD had come from UAMS where this was a standard protocol. What made me comfortable with the protocol was the data held by UAMS, his experience level, my prior experience with my brother-in-law’s AML and my younger age.
Nothing else at the time had the potential of being curative. I am forever grateful to him for his expert advice. The strategy was to give me the longest possible remission until something new could be discovered. To me it was better to have two back-to-back transplants feel like one treatment vs. getting a single transplant and then having a salvage transplant a few years down the road. Losing my hair and feeling the effects of the transplant was not easy and not something I was anxious to repeat.
Because maintenance therapy was not popular at that time, I stopped treatment after 2012. After my transplants, I had a deep sense of urgency and the feeling that I would quickly relapse. I wanted to plan accordingly for my next step.
I called eight facilities trying to learn more about their clinical trial and only got a call back from 2 of the 8. I realized that finding and joining a clinical trial was very hard. Out of the 450 open myeloma clinical trials on www.clinicaltrials.gov, how is a patient to pick one that is personally relevant? That experience was the catalyst to create the Myeloma Crowd Radio program, to help patients understand open trials by talking directly with myeloma investigators running those trials.
That feeling of urgency has stuck with me. I always feel like I’m playing “beat the clock” to find something that looks remotely curative. Of the many cancers to have, at some level I feel lucky to have multiple myeloma because so much incredible innovation is happening in the space. At the same time, while I am intensely grateful for the advances and longer life these medicines and new approvals are providing, I am not looking to be on constant therapy for the next 30+ years of my life and I do not want to live with myeloma as a chronic condition. I want a cure.
That was reflected in our first crowdfunding campaign in 2015 where the theme was “Can’t Wait for a Cure.” We believe that patients are essential stakeholders in finding a cure. We can donate to research, we can participate in clinical trials and we can share our myeloma stories to find better data and uncover new hypotheses.
In 2015 we selected two projects to fund through the help of our patient and scientific advisory board’s help – a CAR T therapy targeting CS1 and BCMA and a T cell immunotherapy called MILs. We raised $500,000 for these projects and we donated 100% of it to the researchers. This was before there was any mention of CAR T at conferences like ASH or ASCO. Our unique crowdsourced funding approach worked.
We also began our Round Table program in 2015 because we saw the need for more sophisticated myeloma education as patients lived longer while continuing to relapse. I also hired our first direct employee at that time, because I was trying to do too much alone. My husband had graciously given us free office space until that time, but it was time to make our way as a viable non-profit, so we moved into a small office next door. Everything done to build the foundation to that point had been funded by our family (and our kids’ college funds.)
With a little help, in 2015 I started feeling like maybe I could take a mental break and not think about myeloma 24 hours a day. Perhaps I would be one of those lucky myeloma patients “cured” by the aggressiveness of the tandem transplants. (There are a small fraction of patients who have achieved what is called a “functional cure,” or the absence of disease without treatment for 20+ years.)
I am clearly not meant to be complacent. My myeloma began returning in 2015 with a “faint band” appearing on my kappa numbers. My doctors and I have been watching the rate and rise of the return of my m-protein and my kappa and kappa/lambda numbers at each lab visit. It has been growing incredibly slowly but consistently growing. Without any CRAB criteria, I was having a biochemical relapse.
Every lab became a decision-making threshold. Do we do something now or wait? Will we wait too long and then I have new bone lesions? What is the number we hit that makes the decision for us? What about now? Do we do another MRI? Do we wait for the next set of labs? Ironically, as my doctor’s comfort level with my numbers decreased, mine increased. We’ve waited this long, why not wait a few more months? My clinic visits went from every 6 months to every 3 months and then once a month. Ultimately, we agreed together that it was time to do something.
My doctors and I started having conversations about what I should be doing next. Because I had interviewed many myeloma investigators, written and shared articles and attended major academic meetings, I understood the science well. I knew what was most effective today and what was coming in the pipeline. That knowledge gave me the ability to ask sophisticated questions during my clinic visits. It prompted me to get a second and third opinion. It was a great feeling to know that I had prepared myself as much as I possibly could have.
It was time to make a treatment decision. These decisions are not easy. There is not one “right” path in myeloma today that will help all myeloma patients, because myeloma is not a single disease. I wanted to know what was right for me personally.
I gathered multiple expert opinions and those opinions varied, making it an even more challenging decision. One doctor suggested I should do a triple combo like Dara/Pom/Dex or Velcade/Pom/Dex because it would likely put me into a multi-year remission. One doctor said that Revlimid alone might be sufficient for low-level myeloma. I flew to the Hutch as COVID was starting to consult with Dr. Damian Green on a trial he had open that I qualified for. We had a great discussion about the status of CAR T and if I should go ahead or wait to use that therapy. Another doctor suggested I may want to wait for CAR T to evolve while the other said to go ahead. Dr. Sborov noted that my biggest challenge would be the number of choices in front of me.
I’ve done exhaustive myeloma homework over the last 11 years. I’ve met with top global experts. There was nothing more I could have done to research my options do on the side of science. And while I am a hearty believer in science, I am an equal believer in faith, so I combined the two to make my decision about what to do next. In that process, I became confident in what to do next.
The decision to enter a CAR T trial was now an easy one but jumping back into myeloma treatment was not. I found myself back in the clinic for more bone marrow biopsies, MRIs, PET-CTs, echo tests, pulmonary tests, 24-hour urine tests and other testing to see if I would meet the inclusion criteria. Every time I walked in the door of the clinic, it was a stark reminder that I was a patient once again.
Getting into a clinical trial is never easy. I initially failed the screen for the trial because of the difference in how the local lab counts myeloma numbers and how the trial sponsor counted the numbers, but within a month, my numbers continued to increase and I was able to be rescreened for the trial. Now that I qualified, myeloma treatment would be part of my life once again.
I started a triple combination as bridging therapy and it was a fresh reminder that dexamethasone is the absolute devil. The physical effects of myeloma treatment are so very real: the fatigue, the GI issues, the chemo brain, the internal shaking, the feeling that you are not quite yourself and you’d best not meet anyone new because they would wonder why you were so frank or suddenly without a filter. The physical was only to be matched by the emotional effects.
We all know that myeloma is a mind game. Like you, I get stressed before my lab visits because you never know what those results will look like. My friend Cindy says it’s like getting a random red card or a green card after a clinic visit, and the uncertainty can be quite disturbing. As myeloma patients, we need as much soul healing as we do physical healing. We need healthy and productive ways of coping with those feelings.
It’s been a real mental transition to move from feeling like a “regular person” to becoming a patient again. As I lay on the hospital table to get a PICC line installed, the reality of it hit me. I was glad that my face was covered by blue sterilized paper so the team couldn’t see the tears.
The other day Paul shared a thought with me that “outward service heals the inner soul.”
The truth of that statement has helped me cope in positive ways. I’ve spent several days this week talking with newly diagnosed or highly relapsed patients. I was energized and uplifted to provide them with help and connections to make their experience just a little easier. I love helping you. It is healing.
Over the years, my sense of gratitude has deepened, and I constantly reflect on how fortunate I am. My husband has helped me every step of this journey in the kindest ways possible. He is amazing, both in and out of a crisis. Creating the HealthTree Foundation together has been a deeply satisfying and rewarding partnership of collaboration. My children have been understanding and involved, contributing their time and talents to the growth of the HealthTree Foundation. I have watched them mature as they have learned to serve you.
Our HealthTree Foundation team has grown significantly over the last several years and I am so grateful these talented people have chosen to share their time and talents with me and with you. Their commitment to helping you is unparalleled.
I am intensely grateful for the myeloma experts I now consider to be my friends, and for my doctors who have helped me navigate treatment decisions, the clinical trial process and treatment itself. I want to share a special thank you to Dr. Sborov (who has been extraordinary for my recent therapy), Dr. Atanackovic, Dr. Orlowski and Dr. Fonseca. They are gifted, caring and truly amazing.
Our Mexican friend was right, and congratulations were in order. We have come to see the world with a new lens and serve in ways I never thought possible. Having myeloma has helped me identify new life priorities and has provided a platform for service, bringing me great joy. Regardless of my personal myeloma outcome, it has completely changed my life for the better.
I still hear and feel the beating drum to find a myeloma cure, so I don’t intend on stopping the work we do. We will continue to press forward to find a myeloma cure to heal us physically. In the meantime, I invite you to join us for outward service that can help heal the soul by joining our HealthTree groups, Myeloma Coach program and tools to share what you’ve learned in your unique journey. We are all in this together.
Becoming a patient again has opened yet another door of learning for me. I’ve noticed that the deeper the adversity, the more profound and memorable the lessons. None of us will go through this life unscathed, but the learning can be eternal.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).