Priya Menon Priya Menon Scientific Media Editor at Curetalk

Cure Talk Interview: Myeloma Advocate and Survivor Jennifer Ahlstrom on Fighting the Disease and Launching MyelomaCrowd.org

 

Jennifer Ahlstrom is a wife, mom to 6 children, and myeloma survivor who (in her own words), ‘wants to help simplify the world of myeloma for myself and others’. Jennifer recently launched a new site, MyelomaCrowd.org which she hopes would be the one place you would get all information related to multiple myeloma. She also hosts an internet radio program, mPatient Myeloma Radio, where she interviews eminent myeloma experts. Jennifer’s efforts in trying to bring all information on myeloma under one roof is commendable and I am sure would prove very helpful for patients who until previously had to scout for them from pages and pages of sites and links that Google search came up with.

I caught up with Jenny over email and she was gracious enough to share her myeloma journey with us.

Me: Jenny, tell us your myeloma story? What treatments are you currently under?

Jenny: I was diagnosed in 2010 while our family was on summer vacation. We were living in Mexico at the time as my husband was helping to create and grow the venture fund industry for the country. I went in to check a potential kidney issue, but got a call from the doctor who said I needed more tests because my bones were full of holes. What a shock. I was 43, a mom of six kids ages 2-15 and was otherwise healthy. I was tired all of the time, but what mom with young kids isn’t?

I went to a local oncologist who, without doing a bone marrow biopsy, said, “I think you have myeloma. Let’s start you on Velcade on Friday.” Our family had been through a very traumatic experience with my 33-year-old brother-in-law who had died of acute myeloid leukemia, so we weren’t strangers to cancer treatment. We knew that we had to find an expert for this disease to increase my chances of prolonged survival. I chose tandem transplants because I was young, in good health and wanted the most aggressive option possible. Even though myeloma specialists say that there may be no difference in overall survival between tandem or single transplants, there is a difference in progression free survival and that’s exactly what I was looking for – time to find a cure and maximum time out of the clinic.

I stayed in Utah and was treated at Huntsman Cancer by Dr. Guido Tricot while my family returned to Mexico. We gave a lot of thought to whether we should pull back and move back to the states, but we felt strongly that we would be able to continue what we started. Everything fell into place. My sister-in-law moved to Mexico to live with the family and take care of the kids. One of my best friends became my 24-hour caregiver and I was close to my sister. My sister-in-law’s house, where we had installed an air filter and water purification system for the brother with AML, became my germ-free home for treatment. After the transplants, I moved to Mexico with the family and traveled every other week to Houston to see Dr. Robert Orlowski at MD Anderson for maintenance therapy for year. Both of my doctors gave me fabulous care.

Me: With 6 children and a business to look after, Jenny, how do you manage?

Jenny: Of course, it was hard. I don’t know a single myeloma patient who hasn’t had challenges to overcome, but we had a great end-result: I was in a complete stringent remission and still am three years later.

Me: Congrats on the new site and I am sure that the myeloma patient would find it the ‘one stop for everything myeloma’. Tell us about the site and how you came up with the idea.

Jenny: My husband and I talked about what we would do if I were to relapse. We decided that I would join a clinical trial. Would we move to participate in a clinical trial? Of course. But finding one to potentially join was harder than we thought. I went online and found over 540 open trials. It was so overwhelming that I read three and then gave up. I had no idea if they were personally relevant and the terminology was completely confusing. After a few months, I called eight facilities about their trials and had two call me back. I realized that the clinical trial process really hasn’t changed in at least 20 years and that I may be able to help move things forward faster.

I am happy that so many new targets are in the pipeline for myeloma, but what if we were to put rocket boosters on the backs of the brilliant researchers in the field? This is why I started the mPatient Myeloma Radio series – to focus on giving clinical trials more exposure and to encourage patients to join. Less than 3% of myeloma patients join clinical trials, If we joined in greater numbers, we could increase the myeloma arsenal in 3 or 5 years, not in 20.

I suppose my survival instinct has kicked into high gear. I don’t intend on dying from this disease. I believe patients can make a difference in the pace of new discoveries. Now that I am feeling good, I want to do everything on my power to push it forward as fast as possible and want to help other patients with solutions that I wish had existed when I was diagnosed.

I started developing the www.myelomacrowd.org site based on frustration I had when I was newly diagnosed. I didn’t know researchers differed in their protocols. I didn’t know about the IMF or MMRF. How could I find the best, personally optimal treatment for me? It was all a blur. What I wanted was a single, patient-friendly site where I could go to for ALL things myeloma. I didn’t want to spend months or years getting up-to-speed on the disease.  I wanted it in a single place. I wanted to be able to find capable myeloma specialists online, wanted to know what to eat when I was neutropenic, wanted to connect with others with myeloma, and wanted to attend a patient conference.

My dream has become a reality. We now have a single site to help us navigate the world of myeloma and it will only get better over time. Lizzie Smith is an amazing collaborator for this project and we hope to include many more of you in the myeloma community to weigh in, contribute and add what you’ve learned.

In our family, we joke that these projects are “pay to work.” Too true. But with an amazing husband who is fully supportive with advice and generous donations from his bank account (and stellar kids who now do their own laundry), all things are possible.

Me: What is your message for newly diagnosed myeloma patients?

Jenny: To all myeloma patients, newly diagnosed or those of us battling this disease over the long haul, I say that we may not be able to walk into the lab and discover the next target for myeloma, but we don’t have to wait for permission to make a difference in myeloma. If we see a problem to solve, we can contribute our own skills and talents to change the course to find a cure.

Thank you for your time and for everything you are doing for the myeloma community, Jenny.

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