Published on July 9, 2020
Does Smoldering Myeloma Treatment Need to Be Aggressive?
Smoldering myeloma happens when changes in the blood are caught early in a blood test and is a precursor to multiple myeloma. What is it like living with smoldering myeloma and how aggressively should you be monitored and treated?
In this segment from our recent Answers Now program, smoldering myeloma patient Jason Stefanko shares his story of diagnosis and how he is doing now. His specialist, Dr. James Berenson from the Institute for Myeloma and Bone Cancer Research, shares his philosophy for treating smoldering myeloma.
This is Part 1 of 2 videos. Part 2 can be found here.
Transcript | Does Smoldering Myeloma Treatment Need to Be Aggressive?
Greetings. It's Andrew Schorr from Patient Power in Southern California. Thank you so much for joining us for this Myeloma Answers Now program. We're doing these programs every two weeks on important topics for people affected by myeloma. We have a great panel for you today, and I want you to meet them. First, let's start in California. We have somebody living with smoldering myeloma, and that's Jason Stefanko. Did I get it right, Jason?
Yeah, you got it.
Okay. Jason is a chef who's been in California for many years. He's been living with smoldering myeloma diagnosed in November of 2018. Let's meet his doctor. There he is. That's Dr. James Berenson. He joins us from West Hollywood, California. Dr. Berenson, what's your title there at your institute?
I wear a lot of hats, but I guess you could just say Medical and Scientific Director of the Institute for Myeloma and Bone Cancer Research in S. Hollywood.
Okay, there you go. Now, let's go to... Actually, normally it'd be New York City at Memorial Sloan Kettering, but it's Tampa, Florida where he is right now. And that’s Dr. Ola Landgren. Thanks for joining us. Dr. Landgren, what's your title at Memorial Sloan Kettering?
I'm Chief of the Myeloma Service at Memorial Sloan Kettering.
Okay, we have a blue-ribbon panel here. I want to start with Jason as we're really discussing do smoldering myeloma and MGUS patients need aggressive treatment? You're smoldering myeloma. So Jason, first of all, it was diagnosed how? How did that happen?
I was having some bladder pain that wasn't really related, I don't think, to myeloma. I was seeing an integrative doctor/naturopath trying to work on some things with food and what have you that way. We did some blood work. That blood work showed some flags in my immune system. Subsequently saw an immune system specialist who sent me to a hematologist/oncologist.
Okay, so you get these blood tests, and eventually, you connect with Dr. Berenson who's a specialist in myeloma. When you're told you have smoldering myeloma, what washes over you?
It's incredibly surreal. At first, they thought I had, I'm not sure if I'm pronouncing it correctly, but Waldenstrom’s syndrome. That was the initial hematologist. It wasn't until they did the bone marrow biopsy and had a look at that that they diagnosed me with the smoldering myeloma. It's pretty scary. Obviously, I have a number of people in my family and in my wife's family that have battled cancer. Ironically, my father-in-law battled a rare blood cancer. I've been through it. I know what it looks like from the other side, so it was scary for sure.
But like I was telling you in the intro, I was a chef for many years leading the regular chef lifestyle, which is live fast let's say. I was very, very unhealthy and did not feel good. In my mid-30s, I switched my profession and became a health and wellness chef ironically. I feel like while the diagnosis was scary, I felt like I was 50% ready for the fight.
How are you doing today?
I'm doing pretty well. I'm still smoldering since 2018. The M spike is the big one that I look at. When I was diagnosed, it was around the 690, and now we're at around 1770, so it is going up. I've had months where it has stayed very stable and hasn't moved. Lately, it has moved a little bit. How am I feeling overall? I feel pretty good. Dr. Berenson, while I'm not anemic, he did flag some issues with my iron. We did some iron IV, two sessions over two weeks. That, for me, was an absolute game-changer in terms of dealing with my fatigue.
So, anybody with these conditions say, "Oh, my God. How do I go on? Is there another shoe that's going to drop?" You're going to go see Dr. Berenson, and he's going to say, "Well, we're seeing these changes." You talked about one yourself. What do you do yourself, and how do you keep your head on straight?
I think the first thing as soon as I was diagnosed would be that I learned that was very helpful was to create some community. In our digital age, I think the best way to do that is to utilize the social media platforms. There's great groups like the Myeloma Crowd, which speaks to drug studies, new therapies, trials and follows the national myeloma conferences. You get to know who all the top doctors are, and you get to watch videos of them speak. That works really well.
There's another one called Beating Multiple Myeloma with a naturopathic approach, which has almost 2,000 members. So you can meet people all over the spectrum; low, intermediate or high smolders or people with multiple myeloma that are using different alternative therapies to try and do better.
That has kept me occupied. You can go down a number of different rabbit holes in those respects. I think finding a naturopath to help focus your naturopathic approach can be important. For me, I got some good advice on diet, on lifestyle and on some natural herbs to take. Even if there's a 1% chance that those things can help, I think that is helpful. I also think that for a smoldering patient you can sit every three months and wait for your blood work to come in, and what do you do in those three months? I think that if you have some health and wellness goals that you can achieve, that can really keep you busy. It can keep your vital organs healthy. It can keep your overall health healthy, and obviously the best possible outcome would be that you naturally are attacking your smoldering myeloma.
Dr. Berenson, what's your perspective? People are saying, "Well, gee, is it going to be myeloma? Do I need treatment earlier? How do you know?"
Well, my philosophy of this is it's a marathon, not a sprint race, and I've always had that philosophy with myeloma, especially with people with smoldering myeloma who not live years but thankfully decades now. I think the last thing I want to do is give them drugs that make them feel poorly. I think one of the things you have to be very careful about is to make yourself believe that treatment isn't without side effects. That is not true as you know personally, Andrew.
That treatment can lead to really big bad things as you know as well. I think we've got to be very careful. Until we can do what my wife's acting coach said, and I quote this, and I like this and everything I think about myeloma, “be specific.” And he was talking about when you're acting, that is kill the myeloma and only the myeloma and also be specific to the patient. The patient is not an assembly line worker. They have specific needs. They have specific other diseases and characteristics of their disease.
Everyone's different, and everybody approaches their own disease differently. There are patients that don't want to get near therapy even when they're really sick. I remember a woman who had an IgG of over 10,000 before she allowed treatment because she said, "You can't cure me." There are other patients who they feel like it's kind of having lice in your hair, you have to get every single one out or they won't feel well, and, therefore, they want early intervention.
It's a very individualized approach you have to take. In general, I'm a believer that less is more, that you have to take your time until we have curative therapy. We don't have it. We have drugs that make people sick. There's so many different options, especially if you're following your patients closely and carefully and making sure that their myeloma is really progressing that their anemia isn't like from one of my patients this morning because they're iron deficient, and, therefore, you're treating them inappropriately.
Or their kidney disease like one of the gentleman, a producer, I see this morning whose kidney disease has nothing to do with myeloma. His M protein has been totally stable for years. He would have normally received active therapy, which he didn't need. You have to be very careful when you approach these patients.
Jason, it sounds like you got a good doctor who's conservative, which I think you appreciate in this.
I do. I do. I interviewed three multiple myeloma specialists in Los Angeles, one at UCLA, one at City of Hope and then Dr. Berenson. Dr. Berenson's straightforward answers and approach, and I remember this quote well. He said, "it's important to me that we do no harm." That meant a lot to me. I know from experience what other patients, the avenues and routes that they've taken for their treatment and subsequently where some of them have ended up. When I listened to Dr. Berenson speak, I felt like that was really the right approach for me.
Well, do no harm is the oath you take, right, Jim? Physicians take. I'll just mention this. I think you heard from Dr. Landgren he's doing a lot of research on this that this catalog of factors and analysis and genomic stuff it's not quite baked yet. There's no cookbook yet on somebody needing treatment for smoldering myeloma. You're being monitored. Some of your numbers are changing. Got the iron and that helped you feel a lot better. As Dr. Berenson said, really deciphering an individual patient, what's the bad guy, which may not at all be anything related to myeloma.