My life as a myeloma patient for almost two decades
Not much is going on. I’m still in the TNB-383B trial. I’ve been receiving the drug since November, 2020.
I’ve had no noticeable side effects, which is nice. One thing that it does is knock my IgG abnd IgA way down. I’ve been having monthly IVIG for that reason.
for some time now, there’s been no m-spike detected.
I had my second infusion of TNB-383B yesterday. There were no immediate side effects of the infusion. It was explained to me that some people have a recurrence of cytokine release syndrome (CRS), which could be as bad as the CRS accompanying the first infusion, or less severe. I had none, thank goodness. While mine was only a grade 1 CRS, it may as well have been a grade 1,000,000 to me! My sympathy goes out to everyone who has ever suffered CRS at any level.
The one thing that surprised me is that I’ve had nausea and vomiting from time to time over the last three weeks. The nausea ranges from mild queasiness to the “get me a bucket” kind. That reference will make sense to Monty Python fans. I spoke to a Cancer Center pharmacist, who told me to stagger my anti-nausea meds for a few days to stay covered. Maybe I can let up after that, and just take them when I first notice I’m starting to feel bad. I have Zofran and Compazine. I think Compazine is working better for me.
I reported this unwanted side effect to the research staff. I asked if others are experiencing nausea and vomiting, and one RN said some are, “at varying intervals.” What I’m hoping is that it will subside after I get adjusted to the drug. Maybe soon? I sure hope so! I also hope this won’t affect you.
I recently enrolled in a clinical trial at Wake Forest Baptist Health. A phase I trial to test TeneoBio’s TNB-383B. Before this, I spent several months on carfilzomib, dex, and cyclophosphamide. Test results and bone marrow biopsy indicated I was relapsing.
TNB-383B is a BCMA x CD3 T-cell engaging bispecifc antibody being studied in relapsed or refractory multiple myeloma who have received at least 3 prior lines of therapy.
TNB-383B is being developed by TeneoOne through Phase 1. AbbVie holds the exclusive right to acquire TeneoOne and lead subsequent global development and commercialization of TNB-383B.
AbbVie, Inc. “TNB-383B.” AbbVie. Accessed November 24, 2020. https://www.abbvie.com/our-science/pipeline/tnb-383b.html.
Hi –
Sorry I haven’t updated the blog in a long time.
I did pretty well (number-wise) on the carfilzomib/cyclo/dex protocol. I did feel kind of crummy after treatment, though. By February of 2020, my doctor decided I could do a few more cycles and then go on maintenance.
Because of the pandemic, I was put on maintenance therapy of just carfilzomib every other week in March. That way, my visits to the clinic would be limited. More so than the twice a week for 3 weeks every month. My doctor even moved my treatment to a satellite clinic in another town so I could avoid contact with so many people.
I’ll post some test results soon. Thanks for hanging in there.
Take care, everyone.
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.
I recently had a change in my dara schedule. I had been going once every 4 weeks, prior to this month. My doctor decided to have me go every 2 weeks, starting this month (April, 2019). He wanted to give that a try because of an increase in k/l ratio.
I still have a pretty low level of disease, so we’ll see what the change in treatment frequency does.
| Component | Your Value | Standard Range |
|---|---|---|
| Free Kappa | 5.21 mg/L | 3.30 – 19.40 mg/L |
| FREE LAMBDA | 315.72 mg/L | 5.71 – 26.30 mg/L |
| KAPPA/LAMBDA RATIO | 0.02 | 0.26 – 1.65 |
