Beth Morgan Multiple Myeloma Treatment Blog
My life as a myeloma patient for almost two decades
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.
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.
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!
Even after all this time, I’m still not sure how to take the free light chains results. I’m not a science-y person. Dr. Rodriguez says that there’s been an improvement. This is the result from last week’s blood draw.
| Component | Your Value | Standard Range |
| Free Kappa | 3.19 mg/L | 3.30 – 19.40 mg/L |
| Free Lambda | 163.95 mg/L | 5.71 – 26.30 mg/L |
| Kappa/Lambda Ratio | 0.02 | 0.26 – 1.65 |
When I became aware that I had myeloma, the FLC test wasn’t used. We just looked at my m-spike(s) and quantitative immunoglobulins. It was a pretty simple way to see what was going on. The FLC test is much more sensitive, so it’s a better diagnostic tool.
Results from July, 2019 for comparison.
| Component | Your Value | Standard Range |
| Free Kappa | 7.06 mg/L | 3.30 – 19.40 mg/L |
| Free Lambda | 415.22 mg/L | 5.71 – 26.30 mg/L |
| Kappa/Lambda Ratio | 0.02 | 0.26 – 1.65 |
The first cycle has been ok. There’s a long list of possible side effects, but I haven’t experienced anything harsh. I have chronic gastritis, so that definitely affects how my stomach feels. Were it not for that, I might get by with just the dex side effects.
For me, dex produces very predictable side effects. On the day I have it, I feel really speedy and I sweat profusely! I have trouble sleeping that night, so it’s not unusual for me to be awake until 3 AM. Usually, I will sleep a few hours and be ok with that. The next day, I can be extremely grouchy. My face will be red. The day after that, I feel exhausted.
It’s amazing that in the early days of my treatment, I would have to do what they called pulsed dex. I would take 40 mg of it each day for 4 days, then have 4 days off. Then I’d do it again. And again. It was torture.
This week I have no treatment. That’s how it’s scheduled. Three weeks on and one week off. I’m happy to have this break. I’ll let you know how the next cycle goes.
Well, the daratumumab and pomalyst train has left the station without me. My doctor decided that it wasn’t helping me anymore, so I’ve moved on.
A few weeks ago I started carfilzomib (Kyprolis) and cyclophosphamide (Cytoxan). I also have 20 mg of dexamethasone every week. I have carfilzomib on Thursdays and Fridays and Cytoxan only on Thursdays. I’ll have three weeks on, then one week off. So far, my CBCs are pretty good. I have only slightly low hgb, rbc and platelets. Those were all low most of the time before this, anyway, so that’s nothing new.
As soon as I have some test results to post, I’ll do that.
If you’ve been on this treatment, I’d like to hear from you.
