It’s been a pretty crazy last couple of months in my myeloma world. My March labs were a bit iffy. Things looked pretty good, but I still had a hint of myeloma showing up. We were going to do a bone marrow biopsy, but that never happened due to something on the doctor’s end.
I went into April’s labs expecting more of the same, crossing my fingers for zeros. Most of my labs came back in the normal time frame, light chains still normal or low. My immunofixation electrophoresis (which is a myeloma blood test) didn’t come back in the normal time frame.
“What’s going on?” I asked myself. “Where are the results?”
The days went by, and they didn’t result. Finally, half of it resulted late in the week, and it showed a reading of my m-band of .2. Previously I was at zero, so this was not good.
The second part of the test came back that afternoon, and I didn’t think it was going to show anything new, so I casually opened it and looked at it.
“Positive for IGM Kappa”.
“WHAT?!?”
My version of myeloma is IGG Lambda. Why is it showing IGM Kappa?
Did the labs mix up my blood with someone else’s blood? I read the notes from the lab, and it says they ran the blood twice from two different vials to double check due to my igg lambda history. It was correct.
A quick search, and I found out it is possible to have double light chain myeloma. It’s like having myeloma twice. It’s very rare, and in only 1% of people with myeloma.
“Face-slap”
What did I do?
After a few moments, I turned on some snappy music and started to dance.
Can I dance?
No
This is really bad news. Why am I dancing?
Because at this point, I said, “Seriously f*** you cancer.” “If you are going to be so bent on killing me, we are going to do things my way. I won’t let you drag me down. I’m going to keep living until I’m not.”
That’s why I’m dancing.
Normally, I look at my labs with my wife, but I didn’t think it was going to be anything, so she wasn’t there when I opened it. I had to tell her the news. It was like placing a 500 pound sack on her shoulders. Being the loved one of someone who has cancer has to be one of the hardest things in the world to endure. I think most people don’t realize this, and it is greatly underacknowledged what they go through. It’s not the same as having cancer, but I think it’s up there on the toughness scale.
I expected a phone call from my doctor, but it never came.
I just kept living my life as much as like normal as I could for the next month. Another round of ivig came the next month, and another round of blood tests.
The timing of the return of the tests was similar. Light chains came first.
Light Chains – Low / Ratio – normal
I had to wait another day and a half until my protein electrophoresis came back. My wife and I nervously opened the first one. How much had things progressed in a month, I wondered?
M-band – zero
“Wow”, we said.
We held our breath on the second part of the result as we opened it since this was the one that showed IGM Kappa (or IGG Lambda).
Normal – no trace of IGM IGA IGG kappa or lambda.
My wife and I looked at each other speechless. We weren’t quite sure what to say. One, because of my previous month’s crappy labs, and second, for this being the first time in 6 years that I’ve had a normal result.
I had a meeting with my myeloma specialist a few days later. Zoom kicked on and the doctor first thing looks at me and says “you know, Jothi, I’ve never met anyone like you.”
“Umm thanks?”
He went on to talk about the IGM kappa showing up.
“I called up the lab director to make sure there was no mistake.”
“It’s unheard of someone developing a second mutation from a car-t. Maybe the cancer mutated with it’s dying breath.”
“It’s uncommon for a person to zero out this far out from a car-t.” (I was at 9.5 months post car-t)
“It’s also unheard of, a month later, the new cancer mutation being wiped out. There is no trace of myeloma in your blood. I’ve never seen this before, and I have no explanation.”
A few months ago, they were talking about putting me on treatment again. They wanted a bone marrow biopsy first, which never happened. The doctor is now throwing around the “C” word (cured), which I’ve personally never heard one say before. I’m left asking myself if something special just happened?
Now being a statical anomaly, I’m left wondering why with no answers. Did my car-t strategy of supporting my t-cells have an effect?
It’s too early to tell anything, and I know full well things can flip back the other way around quickly. I try not to get too low when bad things happen, the same goes for trying not to get too high when things go right. I still need a bone marrow biopsy to check things out on a cellular level. Without that being zero, this could be just a blip in the road. Even if it is zero, I need to be zero and maintain that for a few years before I can relax and let some breath out. Cancer is just that unpredictable and volatile.
My point with this post is not to toot my own horn or have people congratulate me. I’ve been playing the cancer game for a number of years now. I’ve been around a lot of people challenged by cancer, and I know firsthand how dire things can be at times and frankly have periods of hopelessness.
Obviously, I’m thrilled with the ways things have gone in the past month personally. I would be equally thrilled if my tale could lift someone else up and give them a reason for hope. That unexpected things can and do happen if you just keep dancing.
Carrots Over Cancer 