How to Approach the “Alphabet Soup” of Myeloma Treatment
How Do I Navigate the Myeloma Alphabet Soup? from Patient Empowerment Network on Vimeo.
After an initial myeloma diagnosis, you’re plagued with various acronyms referring to treatment, different mutations, and much more. Hear from myeloma patient advocates, Lisa and Sujata, as they break down how they’ve navigated and continue to navigate through what they deem the “alphabet soup” of myeloma treatment.
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Hi, my name is Lisa Hatfield, and I’m a myeloma patient. I was diagnosed back in 2018. I am an Empowerment Lead at Patient Empowerment Network, and one of the things that we are frequently asked is, What are all of these letters and acronyms when you’re diagnosed with myeloma? So just a nutshell, this is why myeloma is so complicated and confusing based on my story. So, I was diagnosed, like I said back in 2018, I have kappa light chain only myeloma. When I was a newly diagnosed myeloma patient, which is MDMM versus RRMM, which is relapsed/refractory multiple myeloma patient, I have kappa light chain only myeloma.
I have…and I’m just going to spew out all of my letters and numbers, I have translocation 11, 14, I have monosomy 13, I don’t have an M spike, which means all of my antibodies are normal, my IgM IGA, IGG are normal. After a surgery and radiation, I went through six months of KRD, followed by another three years of just the R, which is Revlimid, every month I have…in addition to my myeloma labs, I have a CBC, a CMP. Every year I have something called a BMB, bone marrow biopsy. I have a PET CT and MRI every year, and then I do something with my bone marrow biopsy to check for something called MRD status by NGS, which is currently, I’m MRD positive at 10 to the minus 6. So, all of those letters, it’s just a big alphabet soup for people to try to understand myeloma, it gets really, really confusing.
One of the things as a myeloma patient that I recommend to people is the IMF, The International Myeloma Foundation, just to add a few more letters to it, you can look at their website at myeloma.org. They break down each of these phrases and words and letters and acronyms and whatnot.
So newly diagnosed patients and patients who have had myeloma for a while can understand all of these letters and all of these numbers and what these genetic mutations mean and what the tests mean. So, I guess, Sujata, I know you’ve been through this too. We’re just having conversation. How did you…when you were first diagnosed, I’m curious too, and for other patients, how did you get through all of the letters and things being thrown out at you.
Yeah, Lisa, this is funny. So, my name is Sujata Dutta, I’m a board member at the Patient Empowerment Network, and I’m also an MM patient. I was diagnosed with multiple myeloma in December of 2019. And Lisa, you summed it up really well. This alphabet soup is actually a real thing. The first time when I got to know about it, I actually, obviously, like many, many folks that I have known that are on this journey, it comes up as a surprise, it just is… For me, it was interception, I can actually say that word and spell it, I think, but at the time when I was diagnosed, I had no clue what the doctor was talking about, I had this massive inflammation of my lymph nodes and I had to have emergency surgery ’cause the lymph nodes had caused damage to my big intestine, and then we did some research, we as in the doctors, and after a week post-that surgery, I was diagnosed with multiple myeloma. Again, I can say that today, but when they told me about multiple myeloma, I’m like, I have no clue what you’re talking about. They had literally had to dumb it down and say this is a kind of a blood cancer…
I’m like, oh cancer all right then. So, the alphabet soup is actually a real thing, I do have M-spike Lisa, unlike you. My kappa light chains are fine, but it’s been a long journey and not there yet, so still…my goal is to achieve MRD or remission. I’m not there yet, I still have involvement through my proteins, not so much in the bones, so let’s break that down a little bit, Lisa.
Let’s talk about that alphabet soup and how do you navigate that through as a new patient, I would say not even a new patient, like an existing patient like me, sometimes I’m like baffled, like, “Oh, my gosh, what is this report saying to me?” So, thanks for sharing that resource about IMF but what else…as you started, just think about those early days, weeks when you were diagnosed and all of these terms were thrown at you, how did that feel, and how did you overcome some of it, if not all?
That’s a good question. So, I went in to see my, my local oncologist here, after I’d gone through radiation surgery down at MD Anderson because I was going to have my chemo here, and in his office, there was a poster up for a local myeloma support group, which I was not excited about, I thought, Well, maybe I’ll go, but I don’t want to…I already feel down enough that I’ve already overwhelmed enough with my diagnosis, but we just…I called the lady, her name is Sheri, called her up, we talked about myeloma, she had myeloma for seven years, and I was super inspired by that, so we showed up, I had a walker I and walk with a walker because of all the damage to my spine and showed up limping along with my walker, and everyone there was talking about, “Oh, you’re newly diagnosed, what is your M-spike?” That was something new that I hadn’t heard, and I hadn’t had that discussion with my doctor, I didn’t realize at that time, it was because I did not have an M-spike.
So I think, like you said, it’s overwhelming enough to just receive that diagnosis and in my mind, I remember thinking back, Okay, if I talk to a new patient, if I can get through this and make it a few years out, what are the things that were the most confusing to me, and I think understanding the type of myeloma, if I were to…
If patients were to ask me, understanding the type of myeloma patient has, the genetic mutations and understanding what their M-spike is or is not, if they are just…if they’re a light chain, only if they have light chain only disease. Those would be the things I think, because it is so confusing to patients in them, I think as they go along, maybe they can ask their team, “Well, what does that mean? Or what do those letters mean?” Yeah, it’s okay to ask those questions.
Absolutely. Ask as many questions as you can, you’re encouraged as a patient to ask questions or at least I was. I think what is also important to note is like with MM, it’s an individual, it’s a very individualized sort of a disease, so although we put it under the bucket of multiple myeloma, everybody experiences it differently, they even have reactions to medication very different, like just yesterday I was talking to somebody in my support group and they had a really different experience with one of the drugs that I take regularly, daratumumab (Darzalex) every four weeks. She just had the first dose and it was such a bad reaction, she ended up in ER.
So not scaring anybody, I’m just saying everybody has different reactions, somebody might take to some medication really well versus others may not…and just between the two of us, we have different types, you don’t have that, and so there are these nuances, which I think it’s just important to acknowledge, there’s nothing to be scared of…it’s just acknowledging the difference of how multiple myeloma works versus some other cancers maybe…I think it’s important. And you brought up a good point about trying to understand the labs, we don’t have to be experts.
I don’t think I want to be an expert. I have folks that are experts that will take care of me, but just so that I understand the basics of it, and then I’m able to ask questions for my own self, like educating myself.