I am on elotuzumab, dexamethasone, and pomalidomide now. I am in my second cycle. It’s been working great. My CBC is better than it’s been in years. Here are my most recent results in graph form.
Next month, I’ll start the CAR T-Cell therapy process with CARVYKTI®. I’ll start by having a vascath inserted. We used to just call these “Hickmans,” which is a brand name, no matter who made them. This is what a central venous catheter looks like: https://myeloma.blog/this-is-a-neostar-triple-lumen-catheter/ and this is what a Hickman looks like: https://myeloma.blog/hickman-catheter/.
Anyway, my first encounter will be in January. I’ll have the catheter inserted and then will have leukapheresis. After that, my T cells will be shipped off to a lab to be engineered to fight myeloma. Next, the T cells will be multiplied. After that (a procedure that can take two to several weeks), the T cells will be shipped back to the hospital. The next thing I’ll have to do is undergo three days of chemo: fludarabine and cyclophosphamide.
The CARVYKTI® website describes the process best.
I’ll update as often as I can.
In October, 2023, treatment with cyclophosphamide, carfilzomib, and dexamethasone stopped working. My PET scan lit up like a Christmas tree. My lab results suddenly looked awful. I needed a unit of blood.
After starting another treatment, I had a quick response, and lab results returned to nearly normal levels. Normal for me.
It’s been a long time since I posted anything. Recently I was diagnosed with a second primary cancer. I’ve had surgery and am well on the way to recovery.
My hematologist and the head and neck cancer specialist agreed it wasn’t necessary for me to undergo aggressive surgery for this cancer, so I didn’t have a radical neck dissection. Both agree that it’s likely my suppressed immune system (from myeloma and treatment) was part of why the second cancer developed.
I’ll explain more about what happened when I can.
GRYT Health is looking for relapsed/refractory multiple myeloma patients to share their experience. Participants will be asked to complete two virtual research engagements: a 10-minute survey and a 90-minute interview. If you are interested in learning more about this research and/or participating, please visit our study webpage HERE or contact us at projects@grythealth.com.
Right now, I’m getting cyclophosphamide (Cytoxan), carfilzomib (Kyprolis), and dexamethasone every week. I’m tolerating it very well. Even though I had it in 2019 and eventually relapsed, it’s working for me.
After this, I’m hoping to try TAK-573 in a clinical trial.
Abstract
Background TAK-573, a humanized, anti-CD38, IgG4, monoclonal antibody genetically fused to two attenuated IFN?2b molecules, was designed for targeted delivery of attenuated IFN?2b to CD38 expressing (CD38+) cells, utilizing a unique epitope of CD38 that does not compete with current anti-CD38 therapies. Preclinical evaluation of TAK-573 confirmed activation of type I IFN signaling in CD38+ cells inducing direct anti-proliferative effects on multiple myeloma (MM) cells and direct and indirect immune cell activation. Here we provide the preliminary analyses of the pharmacodynamic data currently available from the ongoing Ph I/II TAK-573-1501 clinical study in patients with relapsed/refractory MM (NCT03215030).
Collins, Sabrina, et al. “357?TAK-573, an Anti-cd38–Attenuated Interferon Alpha (Ifn?) Fusion Protein (Attenukine™), Has Demonstrated Ifn? Receptor (IFNAR) Pathway Modulation in Patients with Relapsed/Refractory Multiple Myeloma.” Journal for ImmunoTherapy of Cancer, BMJ Specialist Journals, 1 Nov. 2020, https://jitc.bmj.com/content/8/Suppl_3/A218.1.
I forgot to post an update after the kyphoplasty. It wasn’t as much fun as I thought it would be! Since I’ve been getting Zometa for years, my bones are very hard. The neurosurgeon wasn’t used to seeing this with myeloma patients, whose bones are usually a lot softer than mine are. I remembered that, when I was first diagnosed in 2003, the doctor who performed my first bone marrow biopsy remarked about how soft the bone was.
Out came the mallet and a tool that I was told resembles a nail. I could feel and hear the sounds of the mallet hitting the “nail.” I felt as though I was in one of those “Saw” movies. I was awake during the procedure. That’s just how it’s done. I had fentanyl pushed through my IV whenever the pain and torture of it was more than I could handle. They also used versed for sedation.
After gaining access to the interior of the L5, the doctor took some marrow to be biopsied. Next, they performed a radio frequency ablation of the marrow to kill it (and any myeloma in there). Finally, the injection of the cement was done.
For a long while after the kyphoplasty, I had nerve pain (think sciatica), which is finally subsiding. It took some weeks for me to fully recover for that reason. I’m really glad it’s over, and I hope I never have to do it again.
It’s been a while since I wrote. I began relapsing during the talquetamab/daratumumab/pomalidomide trial. I participated for about a year. The drugs worked for a good while – from June, 2021 until May, 2022.
Here are graphs of the free light chains (ratio and free lambda)
I have an appointment on September 20th to discuss the possibility of CAR T-Cell Therapy. Right now, I’m doing bridge therapy. Cyclophosphamide, carfilzomib, and dexamethasone. I’ve had this before, but I did relapse while on it. I hope it gets me through!