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.
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.
