My Pathway to CAR-T Cell Therapy With Multiple Myeloma

At 47 years old, I started having pain between my shoulder blades and stabbing pains in my sides. My first thought was that I was getting old and had a pinched nerve or something. I did what I thought I needed to by going to the chiropractor and to physical therapy.

Having my husband or one of my boys push their fists into the middle of my shoulder blades would make the pain better. What I did, I know now, could have caused me harm. But I didn’t have a clue what was really happening to me yet.

What an MRI revealed was unbelievable

Both the chiropractor and the physical therapist tried to convince me to get an MRI. At first, I refused. Then the pain became too much, so I did.

What it revealed was unbelievable. The nurse practitioner at our clinic called to report that I had an unstable fracture in my spine, at T2 and T3, as well as six fractured ribs. She explained that the only way to get fractures of this type would be through an accident of some sort or cancer. We both chuckled at the mention of cancer. But I knew I had not been in any accident.

Facing a life-changing diagnosis

One of my favorite hometown doctors found a neurosurgeon in Denver, Colorado. I was to be there that night; they had a bed waiting for me. It was all too much.

I didn’t even mention to my husband or boys anything about the possibility of cancer. I guess I thought it might not be true if I didn’t say it out loud. The neurosurgeon reviewed my MRI and told us all that it wasn’t a matter of if I had cancer – I did have cancer.

I should have softened the blow for the guys, but there it was. I had cancer. I remember thinking about the times my home health team and I would sit around our report table, talking about the odds of us getting cancer based on statistics. Who knew I would be the first one?

Surgery and initial treatment

On September 11, 2015, the neurosurgeon repaired my back, removed a mass behind my spine, and cleaned up the bone fragments in my spine caused by cancer. I have rods in my back from my neck down to my middle back (from C3 to T8).

I spent 28 days in that facility between surgery and rehab, learning to walk, dress, and shower. The nerve pain in my back was unbearable until the doctor prescribed Neurontin. My diagnosis was ISS Stage II IgG kappa multiple myeloma.

My first chemotherapy infusion was on October 15, 2015. I underwent four cycles of Velcade, Revlimid, and dexamethasone, resulting in a very good partial remission. After initiating Revlimid maintenance at 10 mg orally daily in June 2016, it was discontinued due to severe hives.

Navigating setbacks and multiple lines of therapy

I was preparing for a stem cell transplant, but I had a severe reaction to Mozobil. This is a drug used to help the stem cells move from the bone marrow into the bloodstream for collection. Consequently, I was not a good candidate for a stem cell transplant.

Beginning September 1, 2016, ixazomib and dexamethasone were initiated. This was followed by daratumumab/ixazomib on October 17, 2017, for progressive disease with an elevated light chain ratio greater than 10.

My fourth line of therapy was daratumumab and pomalidomide starting on March 23, 2018, during which I experienced a severe rash. The fifth line of therapy was daratumumab and Carfyz C1D1, discontinued in September 2021 due to fatigue and infections. The sixth was Kyprolis.

My decision to pursue CAR-T cell therapy

Through all of these treatments, my husband and I watched the CAR-T cell therapy process. We were waiting for the ‘kinks’ to be worked out with this newer blood cancer treatment.

My husband and I had also had many conversations with my oncologist along the way. We were tracking the comfort level she seemed to have with CAR-T.

Up to this point, I don’t remember being scared. I remember being ready to just be on the other side of it. I read every bit of information I could get my hands on to learn about CAR-T.

Beginning CAR-T treatment

On April 3, 2023, I signed the consent for CAR-T. I was in! On May 30, 2023, my T-cells were collected.

On July 19, 2023, the chemo was given to knock my white cells down in preparation for the new CAR-T cells. I had never been sick from chemo before until now. It lasted for three days.

On July 24, 2023, the reprogrammed CAR-T cells were infused back into my system. My adventure with CAR-T was just beginning.