Jessie Daw

multiple myeloma coach since 2020

I was diagnosed with smoldering myeloma in late 2016, after a few years of having increasing severe respiratory infections every 2-3 months. I live in South Dakota, and see a local onc/hem doctor quarterly, with one of those quarterly visits replaced by a trip to Mayo Rochester to see a specialist. I considered some clinical trials early on in my diagnosis, but haven't entered one. My numbers have remained pretty stable since diagnosis. Recently, I went through full work-up for amyloidosis, and that was negative :-). I changed some things in my life in the year after diagnosis, including leaving my job and focusing on quality of life issues. In that respect, this diagnosis has been a blessing. Of course, I'd rather not have the diagnosis, but it spurred some changes that I don't think I would have made otherwise, and I feel like my life is richer because of those changes. I have become involved in patient advocacy, as I started South Dakota's first myeloma support group. I also have participated in an MMRF Moving Mountains for Multiple Myeloma event, and I really enjoy serving as a Myeloma Coach. I value the time I get to connect with others who have myeloma. We all have our challenges, and connecting with others around those challenges, as well as the good things in our lives, is really meaningful.

Lisa Hatfield

multiple myeloma coach since 2024

Radiation, surgery, chemo. In that order. It was decided while we sat in a sterile room at MD Anderson with my radiation oncologist who was speaking with my neurosurgeon, while both examined the images of my spine. Damaged by myeloma. A blood cancer. I was numb. A plasmacytoma was asserting itself and growing dangerously close to my spinal cord. The debate: radiation first vs surgery first. Chemo wasn’t even on the table. My spine had to be stabilized. I wanted to talk about the cancer and all the other lesions and malignant cells in my bone marrow. But that would have to wait. That was May of 2018. We left our daughters with family, on Mother’s Day. MD Anderson asked us to commit to being there a week. We were there a month. I returned home with a walker, a lot of pain, some fear, and a chemo cocktail recipe written by my medical oncologist (who I was finally able to meet). My chemo was administered in my hometown. Kyprolis, Revlimid, and dex. Kyprolis was not approved at that time for first-line therapy, but my myeloma specialist at MDA was able to get approval for me to receive it at my local cancer center. 6 months of KRd followed, while still recovering from major spine surgery. With a short break from KRD, I had stem cells harvested. And frozen. I opted to delay autologous stem cell transplant (ASCT), as I was still recovering from surgery and did not want to be away from our kids for another extended period. Revlimid was not my friend. Following the 6 months of KRD, I continued Revlimid maintenance for 4 years until the cumulative effects altered by quality of life. (Still dealing with those, even after discontinuing Rev almost two years ago). Most recent Clonoseq bone marrow biopsy showed 572 cells per million (my daughters’ birthdays and my anniversary date used to be the most important numbers to me… this “572” has crept a little too close to the space of those important numbers…I guess that’s how myeloma is). All of my decisions have been made with the two myeloma specialists I see on a regular basis. I am a HUGE advocate for expert opinions with myeloma. And… I believe that myeloma specialists are extraordinary people (mine are incredible human beings). I love good coffee, good chocolate, good books, good conversations, and good, genuine connections. I believe that connecting with others is a critical piece in our myeloma journey and enhancing our quality of life. Not every day will be good, but every day can have hope. I hope I can be a soft but strong support for others and a giver of hope.

Lisa Gray

multiple myeloma coach since 2025

Hello! I was diagnosed with high-risk myeloma in 2023, at the age of 56, after months of undiagnosed back and rib issues. I led a busy and active life working in senior fundraising roles for cancer nonprofits, traveling frequently, playing competitive tennis, and being happily married. Having worked with cancer patients and families for years in a non-medical role, being a patient has given me a new perspective and reinforced the importance of being an advocate to support my care. My cancer journey started with radiation and induction treatment. After only a few months of treatment, I ended up in ICU in 2023 with a lung infection, respiratory failure, and sepsis. Once home and somewhat recovered, I restarted treatment and working full-time. By May 2024, I had only a small amount of myeloma detected and was considered in remission. Unfortunately, I relapsed within two months as I was considering ASCT. I harvested stem cells but decided to have CAR-T (Carvykti) which had recently been approved as 2nd line for relapsed or refractory MM. While SCT is still an option in the future, I felt that CAR-T was the best path for me at the time. CAR-T was done in Dec 2024 and as of now I remain in remission with no detectable myeloma. As an advocate for cancer patients and their families and a multiple myeloma patient, I welcome the opportunity to help support others on their journey.