Myeloma Q&A


How To Make Decisions On What Meds To Take?

How to Make Decisions On What Meds To Take?

Hi, I’m Jim Berenson from the Institute for Myeloma & Bone Cancer Research.

I’d like to discuss how do you decide what medications to take for your myeloma? Well, this wasn’t so complicated just thirty years ago. We didn’t have a lot to try. We had chemotherapeutic drugs and maybe steroids. But over the last thirty years there has been an explosion of new drugs to treat myeloma, and luckily, combinations of drugs. So, we were fortunate that when we combined drugs together, we learned that they were not only more effective, but we could use them at lower doses. That meant if one drug caused a nerve problem, another one possibly caused a heart problem – but, by reducing the doses of both drugs, patients would have less nerve problems and fewer heart problems.

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So, we often do that in our clinic – we have patients that not only get effective therapy, but their quality of life is maintained while they’re on their treatment. Now you as a patient may not want to put up with certain potential side effects. Therefore, you’ll need to discuss that with your doctor to avoid those drugs or receive them at lower doses. For example, some of the drugs cause nerve problems. Well, if you’re a pianist, you don’t want that or if you’re a surgeon, you certainly don’t want that either. If you have a heart condition, you may have to take certain drugs as well. Then, of course if you’re an active person and you travel a lot, you don’t want to come to clinic all the time. So, you might prefer pills to drugs. But over time, your options may become more limited, so you may have to balance the benefit of the convenience of the treatment versus the side effects. We also know that patients with myeloma get a lot of drugs; in my opinion, too many in a lot of cases. So, it’s important for myeloma patients to be specific about how much you will really need to take for the drugs to be effective. You may not need that much if you’re not that sick with myeloma. On the other hand, if you have a very tough form of myeloma, with poor blood counts or compromised kidney function, you may need more treatment. You’re going to have to put up with those potential side effects. So, all of this needs to be taken into account as you decide what kind of treatment you’re going to need for your specific myeloma.

What to Ask Your Myeloma Doctor

Hi, I’m Jim Berenson from the Institute for Myeloma & Bone Cancer Research.

I’d like to discuss with you what to ask your myeloma doctor. You’ve just been told that you might have myeloma. So, what information do you need to know to help you fight this disease and have the longest and best life possible? That’s what it’s really about. So, you want to get that information from the doctor and the team taking care of you. It’s going to not only help optimize you fight the cancer but maintain your quality of life.

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So, first you want to know:
  • “What do I have?”
  • “Do I have myeloma? If I do, do I need treatment?”

Some patients with myeloma do not need any treatment except, in most cases, a bone strengthener. There’s a lot of different opinions about whether patients need treatment or not and they vary a lot. So, one doctor may give you one opinion, and another may give you a different one. You have to take the information in and decide what is really the right approach for you in dealing with your type of myeloma.

So, once it has been decided that you’ll need treatment, you need to try to figure out what kind of treatment you’re going to need. There are a lot of things that go into that decision and you’re going to ask the doctor and team providing your care questions, including:

  • “How often do I have to go to clinic?”
  • “How long am I going to be there?”
  • “How many months is this going to go on?”
  • “Is my treatment schedule going to change over time?”
  • “Or am I constantly going to have to go to clinic?
  • “How am I going to be able to tell if my treatment is working?”
  • “Also, how am I going to know whether my treatment is having a negative overall impact on me?”

You really want to know whether the disease and the treatment is having a negative impact on your kidneys, bones and bone marrow function. That’s what you really need to know.

You also want to know what your treatment is going to do to your quality of life and may ask:
  • “Is it going to affect my ability to work?”
  • “Is it going to impact my participating in my hobbies such as swimming, skiing, hiking, biking, working out, etc.?
  • “Is it going to affect my ability to hang out with your friends, your kids and the rest of your family?”

These are the things that are really important to most patients!

You also want to know:
  • “Can I travel?”
  • “Can I adjust the schedule so that it can fit within my travel schedule?”
  • “What limitations might I have on my activities when I am traveling?”

You may want to take drugs that are pills if you move around and travel a lot. But in time, the more convenient options may become more limited. In some cases, you’re going to be weighing out convenience versus effectiveness and you will want to be talking to your doctor about that.

Unfortunately, sometimes you also need to ask the doctor about the seriousness of your myeloma and indeed when it’s time to say enough is enough. That’s obviously difficult for both the doctor and you to decide, but there may be a point of time in which you don’t want to get treatment any longer. And you as a team, your family and your doctor have to decide when that’s going to happen.

The good news is today there are so many options to treat myeloma that those discussions are coming much later and, in some cases, not at all! We only expect the future to be brighter for our patients with myeloma.

So, there’s a lot you want to ask your doctor. You also want to ask your doctor:
  • “How do I get ahold of you?”
  • “What happens if I have an emergency?”
  • “What are reasons to contact you during off hours?”
  • “How often am I going to see you, not just having my treatments at the clinic?”

These are all practical questions and ones that you need to discuss with your doctor and your myeloma team to optimize your care. This will improve not only your length but also your quality of life as you get treatment to rid yourself of the myeloma.

How Long Should Patients Stay on Treatment?

Hi, I’m Jim Berenson from the Institute for Myeloma & Bone Cancer Research.

I’d like to discuss how long patients should stay on treatment for myeloma. Well, that is a great question and it’s very complicated to answer.

We believe that myeloma patients need to stay on a therapy that they can tolerate with minimal impact on their quality of life. Most importantly, the treatment needs to control their myeloma and its associated complications. What does that specifically mean? Well, early on patients are going to be getting more intensive therapy. They will be receiving more drugs at higher doses over a number of months. However, once their disease is under control, they may be able to reduce the intensity of the therapy. They may be able to stop taking some drugs. Most of the time, patients are continued on treatment to keep their disease under control. That is, they receive what’s called maintenance therapy. Drugs should not be stopped altogether because we know that keeping treatment going allows patients to have a better outcome. They will live longer with a better quality of life and that’s the goal.

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But, at the same time, we may be able to lower the doses and increase the time between doses of some drugs once the disease is under control. We don’t really know how low patients can go with the amount of drug. There have been very few studies looking at the lowest dose that remains effective for most drugs. But, once patients lose the ability to control their myeloma on maintenance therapy, they may be able to regain control of their disease simply by increasing the dose of some drugs or adding other drugs into their therapy or they may need to switch their treatment altogether. This may require more frequent visits to the clinic. However, in some cases patients might switch to orally administered drugs; and, therefore, might be able to come less often into the clinic for their treatment. Once their disease is controlled, they may continue treatment with less drugs at lower doses and be able to maintain remission for a long period of time.

So, there’s a series of ups and downs with the doses and intensity and how often patients have to come into the doctor’s office. But, in general they’re going to stay on therapy. Now some individuals are going to say, “No, I’m done. I’m going to stop therapy altogether.” Occasionally, they’ll do just fine with that approach, but we don’t believe that drug holidays are going to be to most patients’ benefit in the long run to achieve optimal control of their myeloma for the longest period of time.

Thus, staying on treatment is pretty important. Finding a treatment that not only works, but one that patients can live with as well is equally important!

How Aggressive Is Your Myeloma?

Hi, I’m Jim Berenson from the Institute for Myeloma & Bone Cancer Research.

I’d like to discuss how you can tell how good or bad your myeloma is. That’s a very good question and very complicated to answer. There are so many facets to this, especially as we get more and more information from testing that we didn’t have available until just a few years ago — protein testing, genetic testing, along with proteins and genes we didn’t even know existed until just a few years ago. All of these are helping to determine what stage your myeloma is in. But also, importantly, this is a rapidly changing field as new drugs become available. So, the data we may have generated to predict outcomes from the old chemotherapy and steroids may not be relevant in the era of new antibody therapies and more targeted treatments. So just because there was a marker that said you were going to do poorly from data generated even a few years ago, it may not be relevant with all the new treatments that are being used today to treat myeloma.

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But in general, we want to know several things:
  1. How are you feeling?
    1. What’s your quality of life? Are you active or are you bedridden? These are very extreme differences and certainly predict outcomes. Some of that “bedriddenness,” if you will, may not only be related to the myeloma, but also to other things which have nothing to do with myeloma but will determine your outcome in a negative way if you’re not active. Staying active is important!
  2. There’s a variety of things that myeloma does itself.
    1. Do you have poor blood counts because the myeloma is covering your bone marrow? That can predict a fairly difficult disease course and overall outcome for you. Or if your blood count is normal, it’s likely easier for you to be treated with drugs that may negatively impact your blood counts.
    2. How is your kidney function? If your kidney function is poor at the start, this used to be an incredibly negative factor. Not anymore! The good news is that we have a lot of new treatments to deal with this. Unfortunately, many doctors treat everybody alike. You can’t do that now. You need to be more aggressive to reverse kidney disease quickly because unfortunately, if you don’t, the patient can end up on permanent dialysis and that is not a very good thing for your quality of life.
    3. How are your bones doing? Do you have a lot of bone disease, holes in your bones and fractures? That certainly can impact negatively your quality of life and how long you live.

So, there are a lot of factors that come into play that are myeloma and non-myeloma related factors that indicate how good or bad your myeloma is. However, even more important is how good or bad you are going to do with the treatment for your myeloma. That’s what it’s really about.

Myeloma Monthly – Myeloma Bone Disease

Hi, I’m Jim Berenson from the Institute of Myeloma & Bone Cancer Research.

I’d like to discuss with you today Myeloma Bone Disease. Bone-related problems are the most important thing that happens to a myeloma patient clinically. Why? Because the bone marrow where myeloma resides is right next to bone, and often, the bone marrow itself when crowded with myeloma cells causes a negative impact on bone strength. And how does that occur? It occurs because there are types of cells called osteoclasts in the bone marrow that are like Pac-Men that gobble up bones. So what does that do? It weakens the bones, so patients have fractures. The bones can expand from the myeloma pushing on them so patients experience bone pain. All of this often leads to the requirement for pain medication, surgery and sometimes radiation treatments. And sometimes the spinal cord can be impacted by crushing the vertebral bodies or myeloma tumors in the back. That can lead to more serious problems like paraplegia which is paralysis of the legs.

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So how do we stop that from happening? Well, there are multiple ways we can do that, easy ways such as maintaining your Vitamin D levels. It is important to have your doctor check that. You should be taking supplemental Vitamin D and calcium. Although calcium levels can be higher in severe bone disease from leeching calcium out of bone, most patients actually require supplemental calcium. So, the use of calcium and Vitamin D are most helpful in maintaining bone strength. Second, there are drugs we use today to help prevent bone loss. First, we had intravenously administered bisphosphonates. In earlier days, it was Aredia or pamidronate, and more recently over the last 30 years it’s been Zometa or zoledronic acid. A monthly infusion makes bones stronger. How do these drugs work? They eliminate the Pac-Men, stopping them from gobbling up bones. So, the bones are stronger and less likely to fracture. We also now have available a newer drug for myeloma bone disease called XGEVA (or denosumab), an antibody that reduces the number of osteoclasts, so there is less bone loss resulting in stronger bones. So, one can use either of these types of drugs, the bisphosphonates or XGEVA. However, the latter is markedly more expensive and doesn’t work any better than the bisphosphonates. Importantly, XGEVA doesn’t cause kidney problems which can sometimes occur from administration of either Aredia or Zometa. So, for patients who have kidney problems, we now have an option to treat their bone disease, we have XGEVA.

In addition, it’s important for the myeloma itself to be treated. Eliminating the myeloma cells in the bone marrow prevents them from stimulating the Pac-Men and their ability to gobble up bones. Thus, we have a multi-pronged approach in myeloma patients to prevent bone loss, fractures, and bone pain. We have Vitamin D. We have calcium. We have drugs like bisphosphonates and XGEVA and we have treatment for the myeloma itself. As a result of this multi-pronged approach, bony complications have been markedly reduced among myeloma patients over the last two decades.

Myeloma Monthly – Immune Therapy

Dr. James Berenson and the Institute for Myeloma & Bone Cancer Research proudly introduces a new series of videos called “Myeloma Monthly”. These videos about Myeloma, are designed to be a helpful, informative tool for our patients and their family and friends. The videos will cover topics such as new treatments for this disease, new drug breakthroughs, questions you should ask, support for caregivers and much more. To celebrate March as “National Myeloma Month” we are launching our first video titled “Immune Therapy” on March 1. To watch the video please click on the following link:

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Immune therapy has been used for a number of years to treat a variety of cancers including breast and lymphoma. In general, the immune system is harnessed to get rid of bacteria, viruses, and toxins, as well as poisons. In our case, we want to use and harness the immune system to get rid of the myeloma. Immune therapy can take on several forms. Most commonly, it takes on the form of using antibodies or proteins that naturally occur to get rid of the body’s toxins, bacteria, and viruses. In this case, the antibodies target proteins on the myeloma cell to harness the immune system to get rid of the myeloma. We have two recent additions to our armamentarium to treat myeloma which are antibodies: elotuzumab and daratumumab. These have proven quite effective – not as effective alone as when combined with other treatments. Now we have coming on board a number of more specific treatments including the use of T-cells as cellular therapy to actually harness the immune system to get rid of the myeloma. They target a protein known as BCMA. This is expressed at very high levels in myeloma and not much in other cells in the body. Thus, when the immune system is harnessed, the myeloma is eliminated without a lot of cross damage on normal cells. In addition, besides just the antibodies themselves targeting BCMA, there are now antibodies with toxins connected that also target both the BCMA on the myeloma cell and the immune T-cells. So, we bring both the effector cells (the T-cells that are capable of killing the myeloma) to the BCMA that is on the myeloma cells together to improve their myeloma-eliminating effects. So, now there are a variety of different techniques that are being used to treat myeloma today with the immune system and the hope is that these will be more specific and not have all the side effects of the non-specific treatments we’ve had up until now.