FREE LIGHT CHAINS W/RATIO from 10/17/2019 6/29/2020
This is the most current result
Here are the last 10 results in graphs
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 |
This is just a quick update. I’m still on Darzalex, but am also taking 2 mg of Pomalyst (pom) 21 days a month. I’m not taking dex at the moment. I just get 20 mg of dex with each dara infusion. We’ll see how that goes.
For the last 3 or 4 months, I’ve been getting dara via rapid infusion. That cuts down on a lot of chair time. It feels like I may be having some more pronounced side effects from the rapid infusion in the form of fatigue and a bit of just feeling yucky. I asked my doctor if he’s heard others say they feel a little worse after the rapid infusion, and he said that seems to be the case with some people.
Anyway, I am still alive and am stable at this point.
dara = daratumumab
pom = pomalidomide
I haven’t posted any updates lately. The reason is, after having had MM for so long, I just don’t think about it very much. It’s not like it was in the beginning. I used to wake up every day, and that was the first thing I’d think about. That was 2003. It’s just a part of my life now. I’ve been very fortunate to have had few problems.
In January I started on Darzalex, Revlimid and dex. I’d taken Revlimid before, in 2006. You can read all of my previous posts about Revlimid here: https://www.myelomablog.com/?s=Revlimid. I have not tolerated it well, so I stopped taking it at the end of January. In fact, I felt so miserable that when it came to taking that last pill in the bottle, I couldn’t make myself do it. Revlimid causes me to have some really awful GI issues. I think I can understand what people must go through when they have IBS or similar afflictions. Revlimid causes me to have GI cramps, diarrhea, constipation, and some nausea. That was at a 25 mg per day dose. I may be trying a 15 mg per day dose soon.
The reason I may be trying a lower dose is that Darzalex as a single agent (with 20 mg of dex) has not held my MM back. Dara (Darzalex or daratumumab), Rev & dex did a great job up front, though. But since I stopped Rev, the numbers have started climbing.
My doctor wants to try to get me on Pomalyst. In January, we were told that my insurance would not pay for Pom at the same time I’m getting dara. It’s considered an off label use of the combination. He says he thinks he can get it approved this time. If it doesn’t happen, I’ll use 15 mg of Rev.
February 10th, 2017
Jan Bieschke of Washington University in St. Louis studies how proteins fold and shape themselves, and how these processes can contribute to a variety of diseases. He says the compound epigallocatechine-3-gallate (EGCG), a polyphenol found in green tea leaves, may be of particular benefit to patients struggling with multiple myeloma and amyloidosis.
These patients are susceptible to a frequently fatal condition called light chain amyloidosis, in which parts of the body’s own antibodies become misshapen and can accumulate in various organs, including the heart and kidneys.
“The idea here is twofold: We wanted to better understand how light chain amyloidosis works, and how the green tea compound affects this specific protein,” says Bieschke, assistant professor of biomedical engineering at the School of Engineering & Applied Science.
Bieschke’s team first isolated individual light chains from nine patients with bone marrow disorders that caused multiple myeloma or amyloidosis, then ran lab experiments to determine how the green tea compound affected the light chain protein.
“We all want this compound to work in a patient.”
Bieschke previously examined EGCG’s effect in both Parkinson’s and Alzheimer’s disease, and found it prevented dangerous buildups of protein present in both diseases. His team had a similar conclusion in this study: In the lab using samples from bone marrow patients, the EGCG transformed light chain amyloid, preventing the misshapen form from replicating and accumulating dangerously.
“In the presence of green tea, the chains have a different internal structure,” Bieschke says. “The ECGC pulled the light chain into a different type of aggregate that wasn’t toxic and didn’t form fibril structures,” as happens to organs affected by amyloidosis.
Why kale and green tea could be a bad combo
While Bieschke is gaining a greater understanding at the intracellular processes involved, his partners at the University of Heidelberg are working in tandem with him, running clinical trials.
“My group is looking at the mechanism of the protein in a test tube; we are studying how it works on a foundational level. At the same time, clinical trials at the Amyloidosis Center in Heidelberg, with Alzheimer’s in Berlin and with Parkinson’s in China examine the process in people. We all want this compound to work in a patient.”
The research appears in the Journal of Biological Chemistry.