Navigating Your Myeloma Journey: Symptoms, Side Effects, Shared Decision-Making & Living Well

Mary Steinbach, NP:
Thank you everyone. It really is quite an honor to be here today, not only representing the IMF's Nurse Leadership Board, but representing you guys and my patients back in Utah. So my name is Mary. I am a nurse practitioner at the Huntsman Cancer Hospital in Salt Lake City, Utah. We got to see a little clip of my lead physician, Dr. Douglas Sborov and two patients who are going on the Iceland trip. Super exciting. Heather mentioned the NLB and I just want to say a couple of other things about it. So our whole purpose is to advance the nursing care and the patient self-care and caregiver partners and families, the knowledge about myeloma. You guys just being here today, you know from the past two days, there is so much information out there. Your participation in events like this gives us opportunity to collaborate with each other, and that's just a really special thing.
My favorite part of the IMF, and then we'll get into kind of the details of navigating your myeloma journey, is that the IMF is the only cancer advocacy organization that brings together the patients, the clinicians, the education, the research, and presents it all together at one time to all of us at the same time. So I'm just very honored to be a part of all of that. Okay, so getting started. The Nurse Leadership Board develops these slide decks and we edit them a lot and really try to take into consideration kind of who we're speaking to. You guys have been through two days of myeloma education already. So you are going to get some topics and concepts that you've heard before. And I feel like it's my responsibility to just draw the connections and broadly give some advice and point out some of the key concepts for your myeloma journey.
A trek is really appropriate for this, right? So the myeloma disease is kind of what we think of as the terrain. There's twists and turns in it. There's flat parts, there's steep parts. You may feel lost at times. You certainly should always have guidance along your way. So you'll see that theme as we run through this slide deck here. So to kick it off, you can't really talk about myeloma without describing the disease itself. And so this is something you guys probably know, but multiple myeloma is a cancer of plasma cells. Under normal conditions, our bone marrow is making plasma cells which produce antibodies and essentially is kind of the factory of our immune system for our bodies. And when you have multiple myeloma, you have developed a plasma cell that's malignant, gone wrong essentially, and just nonsensically produces this monoclonal antibody. And it's that monoclonal antibody that then goes to cause the damage, the end organ damage and the symptoms that patients with multiple myeloma have.
So here we get a look at what those cells, when those cells are behaving badly, what happens to patients like you guys or patients you may know. I think most importantly is this anxiety and depression. We're going to talk about this further through this talk as well, but this is a very important symptom to consider. And then I mentioned as those plasma cells live in the marrow and they crowd out the normal bone marrow productivity and that can lead to anemia. And when you have low blood cells, red blood cells, you can certainly have fatigue. When you have low white blood cells, you're at risk for infection. When you have a lot of myeloma cells in the bone marrow, actually you don't even necessarily have to have a lot of them in that bone marrow environment, but them being there in and of itself causes bone breakdown.
So a very common symptom for patients can be bone damage, pain from lytic lesions, or just the existence of those bone lesions. And then also the light chains and the monoclonal protein as it is circulating through your blood can damage the kidneys. So a lot of patients present with renal failure as part of their diagnosis, but even if you don't have renal failure at diagnosis, you're likely to be more susceptible to kidney damage down the road. So understanding your kidney health is a really important piece of information to have along your myeloma track.
So infections, I talked a little bit about the immune effects of multiple myeloma in and of itself. And so having myeloma makes you susceptible to infection. Treating your myeloma can make you more susceptible to infection. And the propensity of this or how important it is for you at any given time is going to change depending on where you are in that track. So patients who are going through autologous stem cell transplant or CAR T therapy or receiving a bispecific, you may have more stricter guidelines given to you about infection prevention where someone who's years post-transplant on maintenance therapy, less so. But I think the take home for you guys here is just understanding what the threshold for fever is according to your healthcare team. Mostly in the United States, we call a fever 100.4 degrees Fahrenheit or higher. If you have very low red blood cells and you're having a fever at that threshold, that's a little different situation than when you have a more normal white blood cell count. And again, this is always going to depend on where you're at in this treatment journey.
Broadly, good infection prevention is hand washing, avoiding actively sick people, wearing masks in certain situations. And so this is something that, again, the recommendation's going to come from your team and it may vary depending on where you are in your treatment and what your activity levels are. Immunizations are very important. I mean, these are important for globally, all of us who are human beings, but in the myeloma population, if you have an auto transplant or you receive a CAR T-cell therapy, we presume that you have lost your immunizations that you received as a child, lost the antibody response. So then we're going to recommend re-vaccination. And so if you've gone through this before, you know there's a standardized post-transplant, post-CAR T-cell therapy re-vaccine recommendations. And then seasonally, we recommend the influenza vaccine. The COVID vaccine largely is still recommended by all of us. And then also importantly, and we'll see another slide to this, is what are the supportive medications you can take to help prevent infections? And again, depending on what type of treatment you're on and where you're at in treatment, that's going to determine what those medications are.
So kidney and bone health, there's a very basic way to protect your kidneys and that essentially is staying well hydrated, having a normal blood pressure or as normal as possible, avoiding certain medications that are known to be toxic or damaging to the kidneys. And so correctly so, I frequently get questions about the use of NSAIDs in this setting. I think as a standard, very broad statement, people who treat multiple myeloma patients and take care of them say avoid NSAIDs. So NSAIDs are non-steroidal anti-inflammatory drugs, very good at treating pains that are associated with arthritis or really any inflammatory-driven pain. So I like to argue it's a very important drug class. And as a myeloma patient, is it okay for you to take it? This is a very specific response and I think most broadly the answer is probably no. But at certain times, is it okay for you to take a couple of doses of ibuprofen or Aleve to manage some other acute thing that is occurring with ensuring that you're adequately hydrated and that your treatment team is checking labs? Yes. Then there are reasons and times where it might be okay.
But because we know in the general population that frequent NSAID use can lead to kidney failure, we want to protect your guys' kidneys for the whole course. And so we're going to recommend that you generally avoid these medications. And then patients always ask, because we talk frequently about renal failure and then the next good question is, "What am I going to feel if I'm in renal failure?" Really people don't feel much unless you are in kind of absolute kidney failure where you may be nearing dialysis. And that situation is like the patient might be confused, they might have swelling in their legs, this profound fatigue, skin itchiness. Really that's a very severe setting that you want to seek treatment immediately. More generally speaking, if you are going to have an acute kidney injury, so let's say you have normal kidney function, but then you get pneumonia and you spend a couple of days dehydrated and then your kidneys aren't happy because they haven't been hydrated well and your blood pressure's low, so your kidneys aren't perfused with blood well, you may have then a kidney failure event.
It doesn't necessarily mean that that's going to be long-lasting damage to your kidneys, but at that time you don't necessarily feel the symptoms of kidney failure. And then bone health is really important. I mentioned how active myeloma in and of itself makes your bones weak. A lot of patients who have multiple myeloma present with osteoporosis at the same time or certainly at least osteopenia. So we have bone strengthening medications that we often recommend for all newly diagnosed patients. There's a couple of different classes of those drugs. Probably the most common one that you have heard of is the bisphosphonate drugs, drugs like Zometa or zoledronic acid. We give those to patients to help prevent fracture risk.
You always want to ask about those two because depending on what your kidney function, it may or may not be kind of the right thing for you at that time. Things that you can control for your bone health is regular weightbearing exercise, calcium and vitamin D at, I call it the basic supplement level. So the version of it that all of us should be taking. And often you can do that in combination, in a combination over the counter pill. Those are all things that are important to protect your bone health.
And then pain management. So pain is inherently a subjective symptom, right? It is something that you experience and you can tell me about, but I don't have necessarily an objective way to measure kind of what your pain is. So it's very important for you as patients or caregivers of patients to talk to your healthcare team about any pain that you're experiencing. I mentioned that often at diagnosis you may have bone lesions or compression fractures or any sort of fracture that can be associated with pain. But I think patients with myeloma also can have chronic pain. So you could have low back pain just from your life activity and having some disc trouble or facet arthropathy that really has nothing to do with your myeloma in and of itself, but it's still very important that we address all these things. And our goal for you and your goal is to live as well and functional as possible with multiple myeloma.
So understanding your pain at baseline, your pain once you were diagnosed, your pain once you're in remission. I mean, these are all ongoing, very important concepts for your team to be aware of and for you to help us with. And then we can make certain recommendations for physical therapy or some strength and conditioning that can be very helpful. Oftentimes chronic pain from myeloma, the bone structure may have been corrected either by kyphoplasty or just over time the bone health improves, but the surrounding musculature and ligament structure is always off and that is often what can cause the chronic pain that we associate with our bone lesions. So very important to keep your team notified of kind of what's going on with you in that sense.
I mentioned that we decrease fracture risk by using bisphosphonates. We try to prevent nerve damage by being aware of when we're treating you with medications that might be worsening your nerves. As an example, bortezomib is commonly or Velcade is commonly associated with peripheral neuropathy. So we're always asking this question before you're receiving your treatment and then preventing things like shingles. So shingles is an HSV varicella zoster virus reactivation and that can certainly be very painful and cause nerve damage. So we try to prevent those things by having you on drugs like acyclovir or valacyclovir.
We've talked about bone marrow biopsies a couple of times already just this morning. If you're a patient who really struggles with the bone marrow biopsy and it is not only kind of causes you to feel anxious and nervous for the appointment, but you feel a lot of pain during the procedure, that's something you want to speak up about. Not everybody actually has pain when they have a bone marrow biopsy, but certainly some people do. And if you are one of those patients, that's going to be true every time you have a bone marrow biopsy. So please let your team know. Often at Huntsman, we do our bone marrow biopsies just in the clinic and without any sedation. But when we have patients who we know have intense pain associated with their biopsies, we then schedule them with our interventional radiology team or the team that does moderate sedation so that patients can be comfortable during it.
All right. So we're getting a little deeper into the trek here and we're going to talk about initial treatment and what's the route through initial treatment and who is involved. This is one of the most classic charts that you ever see when you're listening to a myeloma lecture and I love it, but we do need to update it. So what you're looking at here is early disease, maybe MGUS or smoldering far on the left and then frontline therapy, second line therapy, third line therapy. We need to see that remission curve go down at third line therapy because as we've heard from bispecific antibodies and CAR T-cell therapies and our newer drugs, patients beyond third line are achieving very deep remission. So this curve should drop again there.
But also the purpose of this slide is just to show the clonal evolution of myeloma. So the disease you have at diagnosis probably characteristically looks very different than the disease you might have at your second or third relapse. And so your physician is going to be the one who probably most understands that best. And we can tell sometimes through doing certain tests on your bone marrow biopsy, but it's just important to know this is why we often have to combine medications together and end up changing treatments.
So Dr. Mikhail mentioned shared decision making this morning. Perfect setup for me here because shared decision making, I would argue, is one of the most singly important things you guys, I hope you take home from this. It sounds quite simple and AHRQ, which is the Agency for Healthcare Research and Quality, it's well-defined. They define it as that the aim of shared decision making is to ensure that patients understand their options, the pros and cons of those options, and that you use that along with your priorities and your goals for treatment and your life to make a decision with your care team.
So it sounds simple. You guys probably can already tell from practice, it's difficult. And oftentimes you get into that clinic room and you're about to see your care team and you think you had all these thoughts in mind and you were going to suggest them or ask questions and then you just forget, right? So one of the recommendations that we have here is to write your questions down ahead of time. And that's really how you can translate this broad concept of shared decision making into action that you all take. So you write your questions down before the visit, you say it out loud, practice saying it to the nurse who probably greets you in the room maybe before the physician or the APP does. You say it to the person who's at the visit with you, whether that's a family member or your care partner or your neighbor who drove you there for the day. And then you make sure your treating provider hears it and allow them to ask follow up questions if they have them.
And I think also most importantly here is it's okay for decisions to take time. There are certain instances where your myeloma might be progressing quite rapidly, there is one singular treatment that's going to be best for you and you need it quickly and the treating team knows it so they tell it to you. But in a lot of cases, you're going to have time to think about the options, weigh what your previous experience has been, what you want for this kind of future treatment experience. And it's okay to tell your physician or your nurse practitioner, the PA, whomever you're seeing, "I need a minute to sit with this. Thank you for the explanation, but can we meet again and talk about it?" So I just want to give you the ability to do that.
And then there's the second half or maybe the third half of shared decision making is that you got to speak up about what matters to you. What matters to me if I had cancer might not be the same as what matters to someone else with their cancer. And this is going to fluctuate for you over time also, right? It's going to be different when you're newly diagnosed than it is at your third or fourth relapse. So just being able to speak up about certain priorities you have, what your goals are and what you want out of your treatment allows us alongside you to make the best decisions. We've seen a lot in the past two days, and I'll show you a slide again. There are a lot of drug options, right? And so what is right for... I mean, as the experts who take care of myeloma patient, it's our responsibility to know looking at that list of drug options, what's going to help you achieve those goals and priorities that you tell us about.
And then of course the IMF has the most wonderful resources that exist, I'm going to argue, in cancer care and certainly in the multiple myeloma space. So please always go to myeloma.org. We have care partner tip sheets. We have decision making tool tip sheets there. You can certainly talk to Myelo. Heather mentioned it, and maybe you heard yesterday about Myelo, but Myelo draws from all IMF resources only. So that really is the best information you can get from an AI chatbot. So getting a little bit into the treatments on this initial trek, I just wanted to take a minute and mention for all the smoldering myeloma patients, it's approaching, I guess this fall will be almost two years of knowing the outcomes of the AQUILA trial, which is looked at high risk smoldering myeloma and the use of daratumumab. And we saw that there's a 50% reduction in the risk of disease progression or death in those patients who were treated with daratumumab.
So just something to consider. Where I am at in Huntsman, we're in Salt Lake City and of course there's a lot of rural places around us and a lot of community oncology practices just don't have this knowledge. They don't know about it because they're taking care of 20 different types of cancers. So just like to put this plug there too so that people know. And then when you are newly diagnosed, we talk about frontline treatment or induction treatment. And I think part of this whole trek for you guys with multiple myeloma is learning the vocabulary because it is a whole new set of words, right? We come at you in that room and we're talking about quad induction and we use two names for every drug and we're telling it to you every time. And so it can certainly be very confusing.
But classically, first treatment is called induction. So initial treatment. The whole goal of induction treatment is to get the bulk of your disease, get that activity down. So to prevent any organ damage that hasn't happened yet or to start to help to correct some of the damage that has happened. And then next comes consolidation. This is often where transplant plays a role still. And so that might be an intensification of treatment or just a little bit more equally intense treatment to take advantage of the response that was achieved during induction. And then in first line treatment is what we call maintenance. And some patients can live here for a very long time and that's such a beautiful thing, but that's going to typically be less intense treatment for a prolonged period of time. And the goal of maintenance is to keep patients functional, keep your quality of life up. So certainly when we talk about the decisions of whether to stop maintenance at certain time points, we're considering kind of quality of life there too.
So the standard of care for induction is quad therapy. Hopefully you all know this and have experienced it. If you're a newly diagnosed patient, there are certain times where based on frailty, we may just start two drugs or three drugs for patients, but the majority of people we know from multiple clinical trials should and can be treated with quad therapy. You can see here we listed out the classic drug names. What the actual drug is going to depend on who you are and where you're receiving treatment and if you have any other comorbidities that we might consider when choosing treatments. I think from my perspective, this supportive medication box here at the bottom is really the most important thing of this slide. So we're talking about antiviral prophylaxis. This is, as I mentioned, going to be acyclovir or valacyclovir. Pretty much if you are on induction treatment for myeloma, you absolutely should be on an antiviral.
Your team might consider antibacterial drugs at certain time points. There's some clinical trials that suggest patients have less infections if they get treated prophylactically with antibiotics while they're on quad therapy. This is going to be very practice and institution specific, but if you have a concern or question about it, please ask your team. The anticoagulation piece, and I'll have another slide that speaks to this. So having active cancer in and of itself makes you susceptible to developing blood clots. And then the combinations of drugs we use also make you susceptible. So most classically is the IMID category of drugs, but we know that patients on high dose carfilzomib and patients on quad therapy are going to be more prone to blood clots than not. And so there is going to be a period of time where you're going to either be on a prophylactic DOAC or aspirin.
And again, a lot of this is institutionally driven. I think at our myeloma meetings that we have coming up over the next several months, we're going to get a little better definition of how to treat people or how to prevent people from developing blood clots. At Huntsman, it's our practice to put everyone on a prophylactic DOAC for at least the first six months or a year. And then the bone strengthening agents, which we spoke about already. So steroids, still part of the treatment plan, but I think it's been three years since Dr. Mikhail did this down with dex video, one of my favorite videos ever, because as a clinician who sees patients every single day, I love holding dexamethasone or telling a patient, "You don't have to take the dexamethasone," or in some cases, just kind of figuring out what the symptom was associated with the dexamethasone and what can we do to make it a little more tolerable if you're in the window where you need it.
Because there certainly still does exist this window where high dose dexamethasone is going to be very important. And I think broadly it's when you're starting that quad therapy in the first couple of weeks and then depending on what your treatment is in the relapse setting, you may need it for a period of time. Thankfully in the CAR T and bispecific space, there's very few dexamethasone regimens where we're giving it all the time. And this has shifted in the past probably five years alongside the advent of all our newer therapies. And so it's really wonderful to be able to tell people that they don't have to take their dex.
But here we see what the possible side effects are with dexamethasone. It affects everyone differently. When I'm talking to a new patient who's about to start induction treatment, I just say, "This is the potential. Please let me know what you experience. Let's talk 24 or 48 hours after your dose." I don't want anyone to suffer through weeks of high dose dexamethasone if you have a symptom that is debilitating or affects your family member. Sometimes classically it's the care partner or the family member who comes to week two appointment and is like, "Oh, that was very hard on all of us." So just important to speak up about these things. There are tricks we can do to make it a little more tolerable if you need it.
And then peripheral neuropathy I had mentioned is nerve damage. You can certainly present with peripheral neuropathy alongside your diagnosis. You can have peripheral neuropathy related to years of diabetes and uncontrolled high blood pressure. You can have peripheral neuropathy or from having vitamin deficiencies. So there's a lot of reasons. When a patient presents with peripheral neuropathy before treatment's even started, it's important that it's worked up and we try to figure out the why behind that peripheral neuropathy.
If your peripheral neuropathy comes on once treatment starts, obviously it's very important to speak up to that. We can predict what peripheral neuropathy related to Velcade is going to be. We are seeing some peripheral neuropathies after the bispecifics. So make sure you just talk to the nurse who's providing you your treatment in the infusion room or the clinician you're going to see if it's a day that you have a clinical visit. I think this is also a place where it's way nicer to treat myeloma these days than it is 10 years ago when we had to push through some early neuropathy just to keep people on treatment and we certainly do not have to do that anymore. So that's really nice.
And then there's a whole class of pain medications that are not opioids that can really help patients with peripheral neuropathy. So it's worth having that discussion with your care team. So here we are to the blood clot and PE risk. So I mean, these things happen. They sometimes happen to people who are on aspirin or even on a low dose blood thinner. So if you ever develop swelling in your leg or pain behind your calf or kind of the classic DVT symptoms, it's important to speak up about it even if you have been taking your aspirin or DOAC or warfarin, whatever drug you're on.
There's certain ways to reduce the risk of blood clots. Being mobile certainly helps. Taking your medications as prescribed can certainly help. So just a classic example there is often if you're on aspirin while you're on Revlimid, in that week off of Revlimid, you don't hold your aspirin. You continue to take your aspirin or your prophylactic DOAC the entire time, even though you have that one week break from Revlimid. A pulmonary embolism, those symptoms, this is a little bit more serious of a situation. Patients often have difficulty breathing or you feel your heart rate get very high as you get up and start walking, you might have some shortness of breath and that is just something to be aware of.
And then transplant. So can't talk about first line treatment without still talking about transplant and it may be kind of on its way out, but it is still the standard of care. And essentially when we think about transplant, there's three phases to it. There's the determining eligibility, which I like to argue in the US we have the privilege of not kind of having age as a limiting factor for transplant, though recent studies have shown us that transplant is probably less necessary in older populations than younger, so that is nice. And then during that eligibility, you're probably doing your induction therapy, you take a break, you get G-CSF, collect your stem cells. Those often then get frozen, and then you go to transplant when you are ready and your disease is in the right place according to the practice that you're a part of.
And then phase two or the acute period of transplant includes that big dose of chemo, so the high dose Melphalan and then lots and lots of supportive care. And this is where you're at a specialty transplant center if that's not where you otherwise receive your myeloma care. And then that center will send you back to your local hematologist or oncologist, usually around that day 30 mark from transplant. And then that starts the post-transplant period, which really is about patients just recovering from that chemo event, getting back to the physical fitness that you want, gaining some endurance, being able Eat and drink regularly. Hopefully you're sleeping well. For the majority of people, this is a time period where you're not on any antimyeloma treatment. You're still going to be receiving some supportive care meds, but it really can be a very nice time for patients after six months to a year of all this intensive upfront treatment. And then at some point post-transplant, your treatment team will make a decision on what your maintenance should be.
So GI symptoms happen at all times, right? Even patients who are on maintenance and been on the same drug for five years can all of a sudden develop new GI symptoms. So I think the best approach here is understanding what your baseline is. Are you someone who tends to be constipated? Do you tend towards diarrhea? What's your normal bowel pattern? And then talk to your treatment team about that. And we should all aim that you remain as normal as you ever were. So people who have chronic constipation, being on an IMID can certainly be nice in that sense because then maybe you end up having some diarrhea, but IMIDs do constipate some people too. So it sounds sort of broad in general, but I think what's important for people here is just knowing what your normal is, keeping in mind how the treatment you're receiving has affected it, and then having the goal to be as normal as possible.
Anorexia speaks to loss of appetite and the inability to eat. This is something that's going to fluctuate according to where you're at at treatment. And then diarrhea can be a big problem for a lot of people. It certainly can be very limiting where you don't want to leave the house. And that's often the situations where we're going to recommend anti-diarrhea medication. Good fiber supplement can actually improve diarrhea and it can improve constipation. So that can be a hard concept, that you can either take an appropriate amount of fiber or overdo fiber, but I think fiber is a good choice in either setting initially if it's not a supplement that you're already taking or a food type that you're paying attention to.
And then I guess I'll just give one more caution. The cyclical constipation diarrhea from laxative, stool softener, Imodium usage. I just like to remind people that let's try not to get on that train. It's better just to have one pattern and then we try to fix that as opposed to the circle of constipation, diarrhea that can be hard to manage. So changing course a little bit, treatment at relapse. Almost everyone still these days is going to get to this point and it's what we expect. It's not a failure on anyone's end here. It's also where we've had such amazing advancements. And so I'll just quickly, I'm not going to say anything about this slide except that here's all the options at relapse disease that you have. So if you're hearing from someone that there's not a lot of options, I would just double check this list and make sure you've had all the combinations before you decide that there is no more treatment.
And then most fun these days is to talk about CAR T-cell therapy and our T-cell engagers or bispecifics. I'm not going to go too much into this because you guys have heard a lot about it, but I just want to remind you that it is there. CAR T tends to be a little bit logistically challenging, but certainly very, very effective. The bispecifics are what we like to say off the shelf. So should be available to all myeloma patients no matter where they live. I think that's something in actuality we're not seeing. And one of my passions is to get bispecifics out there to community practices so that patients don't have to travel to the urban or academic center to get them, but I won't digress too much on that.
For CAR T and bispecifics, we probably for ease have lumped the side effects into kind of one category, the risk for cytokine release syndrome and ICANS or neurotoxicity. I think these should be separated out whether you're having CAR T or whether you're having bispecifics. The mechanism of what's going on is similar, but the severity of the symptoms and the potential for it are very different whether you're receiving CAR T or bispecific. So just know which one you're receiving, talk to your treatment team about what their monitoring practice is for it and then decisions are going to be made according to that. In general, the bispecific antibodies, the cytokine release syndrome that occurs is way more mild, way more manageable, which is why we're able to give these drugs in the outpatient setting now. And very few, if any, ICANS or neurotoxicity ever occurs with bispecifics.
So with this whole T-cell engaging class and the immunotherapies, it changes the infection risk game a little bit. In the session before lunch, we had a question about the use of IVIG. The NCCN guidelines do recommend IVIG for all patients on bispecific antibody treatment monthly, no matter what their IgG levels are. And the guidelines actually say for the duration of treatment, which, because people respond so well to bispecifics, can end up being a very long time. And so I think it's a discussion with your healthcare team, whether you need to be on IVIG monthly, a year into a bispecific, but certainly in the very beginning days and months up to six months, you should be. And then the CAR T recommendation is for the first six months post-CAR T, at least, regardless of IgG levels. And then again, understanding that you should probably always be on antiviral prophylaxis.
And then what is the practice for prophylaxis with antibiotics? When you have a T-cell engaging therapy that targets BCMA, which is 90% of all our T-cell engaging therapies in myeloma, you probably need PJP prophylaxis as well. Not probably, you do need PJP prophylaxis. And so that's Bactrim and you may have experienced having that post-transplant if you ever had a transplant.
And then we get into kind of some newer side effects in the myeloma space with these bispecific antibodies and T-cell engaging drugs. Certainly post-transplant people have oral side effects, but really with the rest of our standard of care myeloma drugs, you don't. I do think good dental care and dental hygiene is a really important thing for all people who have cancer. Having chronically dry mouth, as probably many of you know, really causes tooth decay and increases your propensity to have cavities, gum line loss, and that can certainly be bothersome. It can be painful. It can lead to more frequent infections in your mouth. So just make sure you see a dentist regularly and you have good oral hygiene.
And then depending on the treatment you're on, talk to your team about what are things you can do for the dry mouth you're experiencing or if you have mouth sores or taste changes. We're learning more and more about how to best manage these. And this is in particular for patients who are receiving talquetamab, which is our GPRC5D bispecific antibody, works very, very well, but also almost every patient is going to have these skin, hair, nail and oral side effects. So if you are a patient who's receiving that drug, please make sure your team is aware of any of these side effects that you're having. Unfortunately, there's no magic wand that corrects the side effects, but we do have a bunch of supportive care tricks that can be very helpful. And then oftentimes deescalating the dose of that drug, if that's possible, is what's going to help your symptoms improve.
And then fatigue, anxiety, and depression. So fatigue is, we're kind of coming full circle here because we mentioned it as one of the major symptoms in the very beginning. I mean, almost 100% of people report having fatigue. Fatigue is the most common symptom. Anxiety can certainly be very high. When you are chronically fatigued and you feel anxious, you're most likely going to have some depression-like symptoms or acute episodes of depression. And so I just bring it here to normalize it. This is not something that we don't want to hear about. We may not be able to correct fatigue with a pill. There certainly are some medications that can help with fatigue, but these are things when you're having your frequent visits, we do want to hear about because it affects your quality of life. We have a lot of evidence that activity, support group participation, good communication, and just putting it out there that you're having these symptoms is actually one of the first steps to kind of improving upon them. So just must mention that. And here we see a map of all the support groups in the United States, which is fantastic.
And then I'm going to probably breeze through this a little bit, although this is arguably one of the most important sections. Living well with myeloma, it matters the most and this matters every single day. And particularly on those days where nothing else is going on, you don't have any appointments, you're done with your infusions, you're not going to go back to the cancer center for weeks at a time. We really want to make sure that you're living well during that time period. And so part of that is expectations to know what to expect when you go in for your myeloma treatment. Frequently, it's going to be blood, less so urine testing nowadays, imaging, maybe a bone marrow biopsy. But if you establish with your care team what to expect, the frequency of these, then I think that can really help a lot with the anxiety that can be associated with them.
And then when you know who's responsible for ordering them and when you're going to have them, if you're between two centers, that's an important piece of information. And then very quickly, here's the classic M spike on the right. So polyclonal antibodies are what we see in that graph on the left. And then just understanding what type of myeloma you have and what your marker is for measuring response, I think is one of the most important things you can do as a patient or have your care partner do it if you don't want to know this information, which is totally fair too. But someone on your team should know what your subtype is, what your spike at diagnosis was and kind of what the expectation for light chain response or monoclonal protein response is. And that's because relapse happens without symptoms and frequently in people who have previously had treatment, that first relapse is what we call a biochemical relapse.
So no symptoms on behalf of the patient, but we catch markers slowly increasing. And the definition of when to treat is kind of a gray area and it really is left up to you as the patient and then your treatment team. And then we put these here because understanding response and response criteria is very important to us and it is part of our job as your clinicians, but you're going to see these words in the chart and we're going to be saying them to you in the clinic setting. So a partial response is a 50% or greater reduction in your monoclonal protein or your light chain assessment. A very good partial response is a 90% reduction. And then a complete response is not having any detectable monoclonal protein in your blood or urine, but you can still have some abnormal cells in the bone marrow. So you can have up to 5% still measurable in your bone marrow and be in a complete response.
And then healthy practices to sustain this trek. So everything on the left is what you can control, right? Your sleep, your movement, the types of food you eat, weight management, quitting smoking if you're a smoker, staying connected to the people around you, staying connected to your community, having intimacy in your life, taking actions to reduce stress. And then everything on the right is our job. And so it's also your job though to keep track of. And it is an actual checklist for recommended health screenings. And this exists as a resource from the IMF. Oftentimes when you're starting a new treatment, your myeloma specialist is taking care of everything, but then as you end up on maintenance or your frequency of visits with the myeloma specialist decreases, oftentimes it falls to your primary care doctor and to you to be responsible for these things.
I think the way we practice, we're always happy to answer all the questions, but we may not be the best one to manage your blood pressure three years out of transplant when you're in a remission and not on any therapy. But don't forget about your general health. When I first started taking care of myeloma patients, we didn't recommend colonoscopies or mammograms or really any long-term cancer screening because patients just didn't live long enough for that to be important. And it always bugged me a little bit, I have to say. That is not true these days. And so remembering general health and regular cancer screening stuff is very important.
Not regular cancer, but the other cancer screenings. And then don't do it alone. And care partners, we want to remind you, you are not alone. So Heather already mentioned once today, the job that you guys do is just as big as the job of all of the clinicians and the patients. And we have a lot of tip cards and support. There's a support group for care partners now. So please remember yourselves alongside those patients that you're taking care of. And that is it for me. Thank you for listening. Here's an example of the resources and there's the NLB.