Joseph Mikhael:
"My husband and my father worked in the same chemical plant and both developed multiple myeloma. Is there a link?" Hello, everybody. My name is Dr. Joseph Mikhael. I am the chief medical officer of the International Myeloma Foundation. I have the privilege of hosting a Facebook Live program where I answer questions in real time from patients and their families and anyone else who wants to learn more about multiple myeloma. There are so many questions that we can't answer them all live, so we've taken some time today to get to these questions. You can ask these questions on any of our social media channels, on Facebook, on Instagram, on X. Just use the hashtag, #asktheIMF and we'll be happy to answer your questions.
Let's take another great question here. Here's one from D. "Does receiving Darzalex and IVIG, or intravenous immunoglobulin on the same day cause severe bone pain?" Well, every patient, of course, is different and unique, D, and it could cause that. Typically it does not. Some patients have a bit of a reaction when they receive different drugs. For the Darzalex, sometimes the very first time someone receives Darzalex they can get that kind of reaction where they may have discomfort in their bones. Or if they're known to have myeloma outside of the bones, what we call extra medullary myeloma, there may be some discomfort in that distribution. But typically, once someone has been on Darzalex recently, they don't have that kind of discomfort. Obviously there are exceptions, but it's pretty rare.
The IVIG, which we give to patients to replace their good immunoglobulin when they have low immunoglobulin levels, which is unfortunately what a lot of our myeloma patients face, similarly, people can have reactions to it. You are getting, if you will, a blood product from someone else, so there can be some discomfort with it. There can be sometimes a little bit of a fever or chills or shakes or just an achy feeling. That does not tend to be very prominent. If it's very severe, obviously this has to be discussed with the healthcare team. But we would not expect this to be a regular or routine event.
Here's a great question from Crystal in St. Louis who says, "What light chain level is too high to still receive treatment? Or do other factors play a role regardless of test results?" I think this is a great question because it reminds us of a principle that we always go back to that myeloma is very different in every patient that it's hard to think of an absolute level that says we must treat here or we mustn't treat there because every patient has to follow their own path, meaning whatever the level was when they were first diagnosed serves as that baseline. And we want to obviously bring it down and keep it down, and then when it goes back up, we want to intervene again. It really depends on someone's situation.
The concern about high light chain levels in particular... And remember this goes back to the protein that myeloma makes. It makes that big Y-shaped protein that is basically an immunoglobulin that's composed of so-called a heavy chain and a light chain. Some patients have just light chains. Most myeloma patients have at least some light chains. Those light chains, if they build up, they can get stuck in the kidney and they can cause kidney damage. And that's why we want to keep an eye on the light chains.
Here's a question from Meo that says, "Could you share about the role of daratumumab-based regimens or Darzalex-based regimens in extra medullary myeloma? Which agent should be combined with dara in extra medullary myeloma?" I always want to remind people that myeloma is a disease that primarily lives in the bone marrow and in the bones. And one of the old words for our bones was the medulla, so within the medulla. But patients can have what's called extra medullary myeloma, which means the myeloma has gone outside of that. It usually indicates that the myeloma, unfortunately, is a little bit more aggressive because it's now been able to, if you will, function outside of its usual environment, so those cells tend to be a little bit more aggressive.
There's no perfect treatment for an extra medullary myeloma. We just think of it as a more aggressive form of myeloma. As in this question, we may be using Darzalex or daratumumab in combination with other drugs, but there's no, if you will, specific treatment for extra medullary myeloma apart from giving the patient the best myeloma treatment they can have. The small exception to that could be that in some situations, based on where it's located, patients may, in addition to their usual treatment, receive some radiation to that specific area to reduce the burden of the disease.
All right, here's a question from Tom in Virginia who says, "How long do you monitor a biochemical relapse before beginning a new line of treatment?" Fantastic question. And again, a little complicated to answer, but goes back to the same principle that it really depends on the kind of myeloma that a patient has. Typically, if someone has high-risk myeloma, even a little bit of a biochemical rise, meaning even just a little bit of abnormality in the blood work showing that the protein is growing, we typically want to jump onto that and treat it quite quickly because one of the hallmarks of high-risk myeloma is the rapidity of the disease; that it can grow back quite quickly and aggressively. Whereas sometimes when someone has standard risk myeloma, we may watch that biochemical relapse. But at the same time, we don't necessarily want to watch it for too long because we know if it grows too high, it can start causing damage to the kidney, the bones, and the rest of the bone marrow.
The typical approach is let's get a pace of this relapse. And the other tip I also want to leave is that we typically don't make a major change in treatment based on one number alone. These numbers aren't perfect. Sometimes we see a patient where there seems to be a blip of an abnormal protein and then it dips back down, so we want to make sure that there's a clear track record of it growing before we intervene with treatment.
Let's now go to another question from Nora. It's in Sun Lakes, Arizona, my home state. And the question is, "Why aren't bone building medications used with patients in multiple myeloma?" Well, I'd ask the same question because they should be used. And this is a good reminder for us to tell people when patients are first diagnosed with myeloma, the vast majority of patients, when we do sensitive bone imaging tests, things like PET scans or CT scans or MRI, we do see that there is some damage to the bone. And in addition to treating the myeloma, which is by the way the most important treatment for the whole of the patient, including their bones, we do add bone strengthening agents to it. And we have different ones that we may use that you can discuss with your healthcare provider.
But that also hastens the way the bones rebuild themselves. One of the things that happens in myeloma is that either by direct invasion of these bad plasma cells or by the way they affect our hormones, we tend to not keep our bones as strong as we should; and they can thin and even break. And so when we stop the production of the myeloma, when we give good treatment for myeloma, the bones do try to heal themselves, but we can speed that up with a bone strengthening drug.
All right, let's take one last question here from Debbie. And she says, "My husband and dad worked in a petrochemical industry and for the same company. Both were diagnosed in myeloma. My husband had at least three colleagues who were diagnosed with myeloma. Is there a link?" When we try to think about the cause of myeloma, we really don't know the cause for the vast majority of patients. This is something that the IMF is studying very seriously. We've done a huge screening project in Iceland that many of you have heard about where we're trying to understand the genetic underpinnings of it. But we know for the vast majority of patients, we don't know the direct cause.
That being said, there have been certain exposures that we know are connected to multiple myeloma; in particular our veterans who have been affected by Agent Orange when they were in combat. We know that firefighters who have had exposure to fires repeatedly have an increased risk of myeloma. We even saw this, sadly, after 9/11 in our first responders. In trying to answer this from Debbie, it's hard not to think that there would be a link in the colleagues who were working in the same chemical industry. We still haven't figured out exactly what chemicals and to what exposure, but it's quite likely, unfortunately, that there is a link.
But this question also reminds me to address very briefly the issue of familial or myeloma in the family. We don't typically think of myeloma as a disease that if someone has it, we need to go test all their family members because we don't often see myeloma in more than one family member. Another reason why we're working so hard to understand the disease better to see if we should be screening higher risk patients, because we do know that if there is one family member with myeloma, it does slightly increase the risk of others within that family. There may also be a link between the father and the son here who were both diagnosed with myeloma. It doesn't necessarily mean it's a different myeloma, doesn't necessarily mean that everyone else has to be screened, but it's something that should be discussed with the healthcare provider.
That's all the questions for today. We hope they were helpful to you. But please feel free to ask many more of them. You can always go to our media channels and use the hashtag #asktheIMF, and we'll be happy to answer your questions. Don't forget also to subscribe to our YouTube channel for the International Myeloma Foundation so you can be up to date with the latest information.
