My journey began 17 years ago. I remember it like it was yesterday. I was on a ski trip in Vail; it was my first day of skiing, and I was experiencing excruciating back pain. I did something I would have never even considered; I changed my flight and headed home early. Throughout that summer my golf game declined, and I felt pain with every swing. Come December, the pain was so severe that I ended up on the floor in a fetal position several times. At that time, multiple myeloma did not have the exposure in the medical community that it does today. While the doctors tried to find the cause of my pain, MRI, CAT, and PET scans all showed no evidence of cancer. Four months later, after numerous tests and a loss of two inches of height, a simple 24-hour urine test showed I had elevated protein levels. A bone marrow biopsy confirmed a diagnosis of myeloma.
I took an unusual route to find a course of action. Through a friend, I found a financial analyst who covered the oncology market for myeloma, the doctors involved, and their success rates. With that list, I conferred with a friend who was the CEO of the local hospital and sought his opinion. At the time, I had never heard of the MMRF.
I started chemotherapy at CDH within two weeks of being diagnosed. After 24 IV’s, high-dose chemotherapy, and an outpatient stem cell transplant at Loyola, I stand here today 12 years later in total remission. I have not taken any drugs since that stem cell transplant. Thanks to the MMRF’s efforts, if needed, I now have many options to choose from.
I first found out about the MMRF during the summer of my chemotherapy through my nephew, who suggested we participate in the Chicago 5K. We immediately enrolled in the fall race, which was run just before my stem cell transplant. At that race, we had over 120 participants and raised over $35,000. This year will be our 16th race.
Finding out you have a non-curable cancer is life changing. There were several things that I found extremely helpful in getting through my difficult journey.
1. My faith. I know I wouldn’t be here if it wasn’t for the power of prayer and the healing power of Jesus Christ. I was on the prayer list at my home church, a neighborhood bible study group, a Jewish synagogue in Cleveland, cloistered nuns in Detroit, and a Czech missionary in Prague.
2. A positive mental attitude—I always believed I would win this battle.
3. A sense of humor—laughing helps.
4. A network of friends to rely on. During the chemo, I had one friend who took me to lunch every week and, near the end of treatment, even cut my food because I couldn’t hold a knife due to neuropathy.
5. And last, but should have been first, my family, including my loving wife, Sandy; three children; two son-in-law; and now eight grandchildren.
I’d like to thank my doctor, Jon Aagaard, who is always available to cure what ails me, and my oncologist, Dr. Pat Stiff at Loyola, who gave me a stem cell transplant that keeps on giving.
I feel extremely grateful to the MMRF and can’t imagine this journey without its support. It is an absolute joy to share the successes of the MMRF and its programs with new patients. I am extremely hopeful and trust that a cure is on the way.
Thank you very much to the MMRF for this wonderful award. On behalf of all my fellow myeloma patients, thank you for the tremendous work you continue to do in cancer research and the development of life-saving solutions. To all my friends and supporters, we are forever grateful for your never-ending commitment to the MMRF.
The MMRF is delighted to recognize Tom Mihelcic as the MMRF Spirit of Hope Honoree at the 2024 MMRF Team for Cures: Chicago Walk/Run.
This award is presented at every Walk/Run to a patient, caregiver, or family who inspires hope through their resilience, perseverance, and dedication to the MMRF and its mission.
How important is it for multiple myeloma (MM) patients to know if they have double-hit MM?
MM patients who have two different chromosomal abnormalities (an example would be chromosome 1q amplification and chromosome 17p deletion) have double-hit MM. Double-hit MM is considered to be a high-risk disease feature which means these patients have a poor prognosis despite receiving current standard of care therapies. MM clinicians don’t expect their patients to be genomic experts and you don’t have to worry about exactly which chromosomal abnormalities you may or may not have! Rather, it is more important to be an active and engaged patient with your MM specialist and have an upfront conversation with him or her about whether your disease is easy to treat, hard to treat, or somewhere in between. Equally important is to know which clinical trials are available in your area.
Can a MM patient convert from high-risk to standard-risk disease after treatment or vice versa?
A patient cannot convert from having high-risk to standard-risk MM following treatment. For example, a newly diagnosed patient who has a chromosome 17p deletion and is treated with an induction regimen followed by an autologous stem cell transplant and achieved a complete response will show that the chromosomal abnormality went away, but that is only because the myeloma cells are gone; they were eliminated by the treatment. However, when the myeloma becomes active again and the patient relapses, that chromosomal abnormality will be seen again in the bone marrow biopsy test results.
The opposite is true: patients with standard-risk MM may convert to high-risk MM. High-risk chromosomal abnormalities may appear after a patient relapses. Therefore, it is important to repeat a bone marrow biopsy after relapse to determine if the MM has changed and become more aggressive.
With the approval of three new bispecific antibodies, what are the implications of using these for high-risk MM patients?
The MM therapeutic field has been rapidly advancing and it is truly an exciting and hopeful time for MM patients! Tecvayli (teclistamab) was approved for use in relapsed/refractory MM patients in October 2022 and two more bispecific antibodies were approved in August 2023 within a week: Talvey (talquetamab) and Elrexfio (elranatamab). Two of the bispecifics (Tecvayli and Elrexfio) target BCMA on myeloma cells (the same target for the two approved CAR T cell therapies Abecma and Carvykti) and one (Talvey) targets GPRC5D.
All bispecific antibodies are very effective in patients with relapsed/refractory MM as they can induce a response in over 60% of patients who have received many prior treatments. The key issue when treating relapsed/refractory patients is that clinicians are unclear how to sequence all the drugs—bispecific antibodies and CAR T cells—that are available to patients with relapsed/refractory MM. The bispecific antibodies have not been studied in patients who have relapsed after receiving CAR T cell therapy. However, as the bispecific antibodies are being used in the clinic, real-world experience is being gathered and many patients are being treated with bispecific antibodies after CAR T cell therapy. And the good news, is that data suggests that patients are responding.
Ultimately, the bispecific antibodies are one of several options for patients and, like all other drugs, if they are effective in the relapsed/refractory setting, they are likely to be effective earlier in the disease course. Many clinical studies are underway in patients with earlier relapse (that is, only 1 to 3 prior lines of therapy) and in newly diagnosed disease and the MM community looks forward to seeing the results!
