What we discussed
About our guest
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Dr. Eneida Nemecek is a Professor of Pediatrics and Medical Oncology and Associate Director of Clinical Research at the Knight Cancer Institute-Oregon Health & Science University (OHSU) in Portland, Oregon. Native from Puerto Rico, she completed her Pediatric residency at Case Western Reserve University in Cleveland, OH and Pediatric Hematology/Oncology fellowship at the Fred Hutchinson Cancer Research Center in Seattle, Washington. She has a Master in Epidemiology and Clinical Research from the University of Washington and a Master in Healthcare Business Administration from OHSU. Dr. Nemecek is an established clinical researcher with over 20 years of experience in trials ranging from investigator-initiated early phase to large, multicenter studies funded by a variety of mechanisms. Her research focuses on bone marrow and cellular therapies, experimental oncology therapeutics and health services research addressing disparities in access for underrepresented groups. She has served in leadership roles in steering committees for several national cooperative research groups. She has also held elected leadership positions as director, trustee or committee chair in multiple professional organizations.
Watch the video of our episode on YouTube
Key Moments
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3 minutes:
“The whole principle of bone marrow transplant is to, if someone's immune system is sick with either cancer or a blood disorder or an immune disorder, we know that if we could replace the immune system of that person with immune system of someone that doesn't have those diseases, kind of like an organ transplant if you think about it, then eventually we can fix the problem on the person's blood or immune system. We make space in the bone marrow by giving chemotherapy. We try not to use radiation, but sometimes we have to. When that space is made, if you think about it like putting a plant, we then put the new cells in the bloodstream and eventually they find their way into the bone marrow, which is where we make all their blood cells and eventually they grow and replace what was there.”
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15 minutes:
“Sleep is healthy. If you are the one caregiver of a patient and you get sick because you're stressed and not getting enough rest, then you get affected and your patient gets affected too. It's a very important part of our health. Eat, sleep, get some time for yourself. Those are all things that just need to happen. The way that we're designing medicine today, sometimes we forget that the caregiver is kind of a patient. If we lose that person, we are in serious trouble. I can tell you multiple examples about when that has happened and how difficult it is for the medical team and for the family.”
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28 minutes:
“I think it's really important to remind ourselves that the brain, our psychosocial life, is part of our health. I think sleep, exercise, diet studies, anything that can improve the life of people should be studied in a very organized setting, just like you study drugs, if we're going to do this well.”
Full Episode Transcript
The Patient From Hell Podcast (00:01.424)
Hi everyone, I'm Samira Daswani, the host of the podcast, The Patient From Hell. I have a very cool guest with us who knows a survivor on our team, Molly Lindquist from many, many years ago. Dr. Nemecek thank you so much for joining us today. I believe we're catching you during a very busy clinic day.
Eneida Nemecek (00:17.442)
Thank you. Thank you for inviting me.
Eneida Nemecek (00:23.256)
A little bit.
The Patient From Hell Podcast (00:25.808)
Can you tell us what your clinic days are like?
Eneida Nemecek (00:28.28)
Well, I take care of pediatric hematology oncology patients, so they're all children and young adults. And on a half a day clinic, I can easily see between six and 10 patients. I do specifically bone marrow transplant for treatment. So I see patients that have had bone marrow transplant or cell therapies. So they come in, we check them, if we find something, we do more things than they were expecting. And then hopefully we let them go home.
So we see new patients and consults and then people were following up.
The Patient From Hell Podcast (01:02.887)
Can you tell us what inspired you to enter pediatric oncology?
Eneida Nemecek (01:07.32)
You know, I think what you do for a living in medicine finds you more than you find it. I fell in love with it when I did it in residency many, many, many years ago. And the people that were doing the work and the patients and the families, it's a hard field, but it's also very rewarding to help families through either the good or the bad. And it's more of a, it found me. I don't know, I can tell you.
I chose this on purpose.
The Patient From Hell Podcast (01:40.026)
And then how did you end up doing cell therapy and bone marrow transplant?
Eneida Nemecek (01:44.568)
kind of the same way. As I was getting more experience into the field, I fell in love with the science behind using your immune system to harness and fight cancer and other blood disorders. And between the science and the people that I learned with, I just knew that this was my path over 25 years ago.
The Patient From Hell Podcast (02:10.8)
Can you tell us a bit about the science? Can you give us just the foundations of what about the immune system and the cancer start to intersect?
Eneida Nemecek (02:20.278)
Yeah, so the whole principle of bone marrow transplant is to, if someone's immune system is sick with either cancer or a blood disorder or an immune disorder, we know that if we could replace the immune system of that person with immune system of someone that doesn't have those diseases, kind of like an organ transplant if you think about it, then eventually we can.
fix the problem on the person's blood or immune system. So we make space in the bone marrow by giving usually chemotherapy. We try not to use radiation, but sometimes we have to. And then when that space is made, if you think about it like a planter, a plant, putting a plant, we then put the new cells.
The Patient From Hell Podcast (03:06.854)
Yeah.
Eneida Nemecek (03:11.748)
in the bloodstream and eventually they find their way into the bone marrow, which is where we make all their blood cells and eventually they grow and replace what was there. That sounds a lot easier said than done. People spend about a month in the hospital with processes like this and that's like the traditional bone marrow transplant. We now have other things we do with cells from the immune system where we are using the cells as
beacons to go attack particular leukemia, for example, with a treatment called chimeric antigen T cell receptor or CAR T. We're doing similar things with some forms of gene therapy that actually actually derived from our blood cells. So we have a lot of different things that we're doing. Then we're using particular cells in our blood system to fight infection, for example. We kind of teach them to attack a particular virus or
particular thing and they can attack and we're venturing in that direction too now not just for blood cancers but for solid tumors. So a lot of those things are still experimental but some things are already commercially available and for example we have even treatments for melanoma now that are cells.
The Patient From Hell Podcast (04:26.678)
And I have so many questions for you. So this is where the nerd in me starts to get very happy. Okay, so can I, I'm gonna take two steps back. So the marrow transplant program you're running, can you talk a little bit about where you are?
What, I heard you say cancer, blood disorders, other disorders, immune disorders. Is this program kind of a cross oncology, just an oncology? Just a bit more about the program would be helpful.
Eneida Nemecek (04:58.407)
Yeah, so we are the Oregon Health Science University, Knight Cancer Institute in Portland, Oregon. We are a very large academic institution that serves the entire state of Oregon and then around Oregon. We don't have a lot of other academic centers. We are 300 miles away from Seattle, which is the next one, and almost the same amount of distance from the next one, which is Stanford. So we're really far from anybody.
population here has to travel to come to any of these places. So we take care of all the patients in the region that either need an aboma or transplant or a cellular therapy. We take care of adults and kids, but those programs are in clinical separate facilities that are the same. So we have pediatric hospital, Doernbecher Children's, and then we have the adult hospital at, we call it OHSU.
where the adults go and then we have clinics that are separate for them so we take our patients in this environment here.
The Patient From Hell Podcast (06:01.456)
Got it. And then the matter transplant program is specifically for the pediatric hospital or both.
Eneida Nemecek (06:09.016)
It's both. So we have a program, the Northwest Maritransplant Program, that takes care of adults at OSU and of kids at Doernbecher. So we function together for science, for research, and for clinical standards, but then we take care, obviously, of the kids where the kids need to be and the adults where they need to be.
The Patient From Hell Podcast (06:28.848)
it. And then can you help us understand the difference between cellular therapies and bone marrow transplant?
Eneida Nemecek (06:35.212)
Yeah, so bone marrow transplant is kind of the beginning of all of this, right? Where we would take all the cells from a bone marrow donor that they gave for us to treat. And we essentially put all of those cells back into the patient. Cellular therapies are what we know as cellular therapies today. So if you want to think about it, bone marrow is a type of cellular therapy.
But what we're calling traditionally cellular therapies is they are specific cells from the hematopoietic or bone marrow system. The fancy word is hematopoietic, blood -borne. And we then separate those cells and use them. So for example, your bone marrow has white blood cells, red blood cells, and platelets. The majority of cellular therapies are white blood cell -based. And white blood cells have a different
different varieties. So there's lymphocytes, there's myelocytes, and there's other cells. The majority of the cell therapies are lymphocyte -based, where we isolate just those types of white cells, which are the ones that scavenge viruses, cancer, that we can teach to do things. And those are the ones that we now engineer in a manufacturing facility and teach them to do what we want them to.
So think of them as a drone that knows exactly where it needs to go and what they're out to get. And that's kind of what we do with them right now. So there's a variety of things you can do with them. You can either insert something that teaches them how to attack a cell. You can insert something that replaces something that somebody doesn't have. That's what we're doing for sickle cell disease, for example, replacing the faulty gene.
And you can teach them to attack something that's not a cancer, but for example, a virus. And that's another thing that we're doing with them. they're GMOs. They're genetically modified cells.
The Patient From Hell Podcast (08:39.748)
Wow. So what's the difference between a gene therapy and a cellular therapy?
Eneida Nemecek (08:45.528)
So there's different types of gene therapy. Some gene therapies are cell therapy based. So for example, the ones that we're using for sickle cell disease, for thalassemia, those are based. We take white cells from usually the same person that's going to get them, although we can do it also from a donor. And then we engineer them. So those are cell based. There are other products that are not cell based that are also gene therapies right now that are just
replacing that particular gene. example, there's some of those medications for hemophilia, which is a blood coagulation problem. So there's different types, but the one that I deal with is the cell therapy base.
The Patient From Hell Podcast (09:27.258)
Very, very cool. Thank you. Thank you for teaching us. Maybe I'm going to use that as a way to transition into the PCORI study and then circle back to your current practice, if that's OK. And I'm just going to read out the study title and then ask you to help us summarize and understand what the study was and what we should learn from it. So the study title is Check Your Sleeve Before You Start.
Eneida Nemecek (09:38.488)
Sounds good.
Eneida Nemecek (09:48.204)
Mm
The Patient From Hell Podcast (09:52.238)
a secondary analysis of stress management intervention for caregivers of stem cell transplant patients.
Eneida Nemecek (09:58.752)
All right. So this was a way to divide clinical trials into interventional treatment, interventional non -treatment, and observational. I will qualify this one depending on how it was designed. Definitely an intervention, but it's not chemo, right? And it's not treatment you're giving someone, but this is a behavioral intervention, for example, where you tell randomized people to do.
either what they're usually doing or something you want them to do. And then you observe what happens over time. And this was particularly terrible at looking at the importance of sleep on people that are caring for bone marrow transplant patients, which is a big problem. If you've ever heard about bone marrow transplant, people come in for a month to the hospital and we are asked, we ask that a caregiver is available with them at all times.
In the adult world, that looks a little different, but for example, for a kid, the parent is with us for a month in a room. Well, you know, they come out a little depending on if we're in a respiratory viral season or not, or if they're in isolation for any reason and things like that. So you can be confined to a room for a month, and you can only imagine what that does to sleep. And you can only imagine what happens to a parent when they don't sleep because it's not a very good thing. So it's the health of a patient.
closely linked to the health of a caregiver. And we know that that has been studied, that has been shown in adults and in children. So sleep in caregivers is a very important part of the care of a patient. So I think that that was the main purpose of the study was no quality of life of a caregiver as it affects the outcome of a patient.
The Patient From Hell Podcast (11:45.434)
Can you talk to us a bit about the differences between adult patients and pediatric patients with the caregiver quality of life portion?
Eneida Nemecek (11:59.124)
boy. I think caregiver quality of life is important either way. your life, even if you're dealing with an adult patient, the life of a caregiver gets interrupted by the care, particularly when you're doing something like bone marrow transplant where, again, there's this portion of a month or so in a hospital for a variety of them, a good number of the patients. And if it's not inpatient, a lot of clinic time. For the first...
two to three months of a transplant of a patient, we are asking the patient to be in clinic if they're not in the hospital, two, sometimes three times a week. And those are usually not zip -ins, zip -out visits. Those are usually, you you come in, you have to get the abs drawn, then we have to wait for the labs, then sometimes you need transfusions. So you're talking, you know, easily four hours in a clinic between, you know, parking and going back home, right?
And that's a part that I think it's funny, we sometimes forget to tell patients, your appointment's an hour. No, it's not. It's an hour to get here, it's an hour to get there, and then it's the whole day. And that puts a lot of toll, regardless. The needs and the requirements for caregiving, other than you have to have somebody, even if you're an adult, are of course gonna be different for kids because they need everything done to them. I would say as we transplant older adults,
That is looking an awful lot like taking care of a kid in terms of the needs. And we all regress when we are getting sick and care. So we see that in the hospital. And I think I'm one of those few pediatricians in the country that has been able to do adult work. And I can tell you what I see doesn't look much different when you're in those units. I think our expectations of the caregiver are different.
And you really like, you don't have time to brush your hair when you're taking care of a kid versus I think that the care givers can come and go a little bit more. But it takes a huge toll and we're asking people to do that for three months of their life. So it puts a lot of stress in work and relationships. If you have other children or if you have to take care of other people outside of the hospital, it really puts a lot of burden in the families.
The Patient From Hell Podcast (14:19.034)
So doctor, given the amount of burden, why focus on sleep?
Eneida Nemecek (14:23.928)
Because you need to sleep. Sleep is healthy. If you are the one caregiver of a patient and you get sick because you're stressed and not getting enough rest, then you get affected and your patient, your caregiver gets affected too. It's a very important part of our health. Eat, sleep, get some time for yourself. Those are all things that just need to happen.
And the way that we're designing medicine today, sometimes we forget that the caregiver, it's kind of also a patient. And if we lose that person, we are in serious trouble. And I can tell you multiple examples about when that has happened and how difficult it is for the medical team and for the family.
The Patient From Hell Podcast (15:12.498)
given that what was the intervention used in the study?
Eneida Nemecek (15:17.438)
so what I, what I understand was that they gave him a very specific prescriptive of how they wanted to, they wanted them to have sleep hygiene. And then, you know, like any other control study, you hope people do it. So, and then the other arm of the study was you do whatever is that you're doing. and that that's what they observed. I think, I think, prescribing sleep is really hard, right? You you prescribe a pill and you take it and you have a very.
quantitative measure. They took it, didn't take it. How you tell somebody to sleep is a little bit trickier. So a lot of the studies that have behavioral interventions are analyzed on what it's called intent to treat, which means that we randomize you and we are assuming that you did what we told you to do. And then, you know, the results are sometimes a little hard to explain because there's a lot of crossover.
people like this, it's like a diet study, right? Eat healthy and you're like, okay. You can, unless you go home with people and you can have sensors and all of that to try to monitor things and that that's usually a little bit more accurate, which is, which was one of the things that was on the study, but you still cannot control people to go into rapid eye movement, deep sleep because that's inside of their brain.
So that's kind of what this study did. And then looking at assessments of quality of life, which is there are some very specific ways to do this. This is not a questionnaire that someone made up and happens that way. There are some validated tools that have been studied multiple times, asking specific questions graded in a particular way about your quality of life. Are you happy? Are you worried? But they're graded and validated, and that's what they used.
to measure the impact on the caregiver.
The Patient From Hell Podcast (17:16.367)
So then given the results of the study, if you had to summarize one piece of advice for someone caring for a patient, either pediatric or an adult, going through a stem cell transplant or bone marrow transplant, what would you tell them?
Eneida Nemecek (17:35.673)
I will tell them what I tell them and I'm gonna tell you exactly what I tell our families. It is really important and I think there's no advice better than what you receive in a doctor's office to stick in the ear of a person. We all are pretty skeptical about that but if I walk into a room and I tell somebody, now this is gonna be hard. First you prepare the patient, right? This is gonna be hard. This is what it looks like. No.
you're going to need to make some accommodations. have all the support for you, but we need you to take time for yourself and we need you to rest. If you don't rest, you get sick and you cannot do this. And I do that with every patient we walk through. We are in a really interesting facility here in Oregon where our hospital is kind of in a hill and we are surrounded by this beautiful walking trails and places where people can go. We have a pretty cool tradition here of allowing people to use that space.
So I love seeing our patient families. Some of them are really, really disciplined about it. And we have volunteers that can stay for the kid for a little bit or things like that. And I've seen some parents, you who finish running. And the first thing they know, they lace up and they go for a walk or for a run and try to get some rest. I don't know how to fix sleep in a hospital. I don't think it's an easy thing to do. We walk into the room.
between every two to four hours and interrupt you. So if you are a light sleeper, this is a nightmare. I have some patients and some families that sleep mask and earplugs and try to get as much as they can. But I think continuing to encourage adequate sleep hygiene on patients and on families, it's important because transitioning in and out of the hospital also takes a while if your sleep is disrupted and your days and nights get flipped. And that is really hard to fix.
The Patient From Hell Podcast (19:30.852)
Hmm. Doug, I really would love for us to take a bit of a step back. I've heard pieces of this, of the experience, but can you go all the way back? Can you help us understand how you evaluate someone for a potential bone marrow transplant?
Eneida Nemecek (19:46.902)
Yeah. So we are kind of a procedure service, right? So a physician that's taking care of the patient somewhere, usually an oncologist that's taking care of their leukemia or lymphoma or similar disease if it's an immunologist, they look at the disease and they go, gosh, I think this requires a bone marrow transplant. And they make a consult for us. We look at the entire history of that patient.
The Patient From Hell Podcast (19:50.619)
Yeah.
Eneida Nemecek (20:15.522)
several years back it dates to, and we see the patient on consultation and then we confirm that they're actually potential, like what they have we can actually help with a transplant. Not all blood cancers can be fixed with a bone marrow transplant or need to be fixed with a bone marrow transplant. When that happens, if you are receiving a transplant that's from a donor that's not you, we first have to look for that donor. So we do something called HLA typing, which is the DNA.
typing of the blood. We don't look for every single gene that is on you, but we look for genes that determine if you are the same or different than a particular person and if you're going to accept. So there are genes affiliated with the immune system and how we process us versus not us material. So usually that's a combination of eight.
The Patient From Hell Podcast (20:44.954)
Yeah.
Eneida Nemecek (21:11.542)
of those genes that we look at on the blood type, on the blood of a person. It's not affiliated with blood type. So it's not the A, B, O, positive, negative blood, but it's more of a gene part of the white blood cells and the cells that are in our tissue. So we do that in the recipient. That's usually in the recipient, we do a blood work. And then we do that in donors. Donors, we look in the family first.
If we do not find a relative, usually a brother or sister that matches, we then potentially could look at the parents, although they're usually not compatible 100 % because we're 50 -50 parents. And then if we don't find a member of the family that matches, we enter the National Marathoner Program Registry, where we essentially on a big, large phone book.
look for someone that looks like you. So we enter all those numbers in a computer program and the computer program like the yellow pages, it's out here. You have zero to many, many, many potential donors in the registry. These are volunteers that have signed up to potentially be donors one day over age 18 and below the age of 40 when they sign up for the first time. But that could be older people on the registry from before. And there's about 15 million dollars.
worldwide that have signed up to potentially be a match. And even with that, we still have some problem finding the right donor for all the patients, particularly if they are non -white Caucasian, ethnic or race background. But we look there. If we find something that looks like a good match, which is anywhere between a seven out of eight match to eight out of eight match, we then
wherever that donor is, procure them. The patient doesn't know who that person is. It's all kept very anonymous. But some medical facility is working up that donor. At the same time, we're evaluating the patient for transplant. And once those two things happen, that's when we let you know date and take the patient through that process that I told you where we admit them, give them chemotherapy, and then put the cells in. And then we wait for them to.
Eneida Nemecek (23:39.766)
latch to the bomb arrow and grow. And then you got to go home after that.
The Patient From Hell Podcast (23:44.462)
Is it the same process of a Kirti?
Eneida Nemecek (23:47.026)
No, for CAR -T, because most of the CAR -T products today are derived from the same patient. So we essentially, let's say, for example, you have leukemia that came back. We will take some of the white blood cells from your blood through a process that looks a lot like donating platelets. And we take those cells, and we put them in a very large frozen tank, and we ship them.
to the place, usually a pharmaceutical company, or if in some places they make their own in the research laboratories, where they essentially do that gene insertion, gene replacement, and then they return the cells back to us. And that process takes about, from the time that we collect to the time that we get the cells back, it takes about three weeks with most of the products that we have today.
And then we prepare people very similarly by giving chemotherapy that looks a little different to what we had to on a transplant because we don't need to wipe out your entire immune system because it's your own cells. So we're just trying to temper you down so that you don't reject the new product. And then we put the cells in and then we wait. And the process for being in the hospital for CAR T varies by patient. Some people do all of this outpatient, usually adults.
The Patient From Hell Podcast (25:07.332)
Wow.
Eneida Nemecek (25:08.128)
If you have any issues like a fever or anything like that, then you come in. For kids, almost always end up in the hospital at some point in this process because it's harder to monitor them. And these cells, even though they're yours, because they're there, think of them like, know, they come with a, they come with missiles, you know, they're like ready to attack something. And when they go in and people have active leukemia or whatever disease they have, they can expand very quickly.
in the blood and cause some problems that have some unique monitoring we have to do. One of them is called cytokine release syndrome. And we need you in the hospital for that because it can look like fireworks.
The Patient From Hell Podcast (25:55.982)
That sounds honestly a little scary.
Eneida Nemecek (25:58.264)
It is very scary, but very efficient, and we have a lot of ways to treat that. The majority of people develop that at a degree that it's really easy to handle. A fever, you give Tylenol, nothing too complicated. Then there's the other edge of the spectrum where they can look like they're disoriented or have blood pressure problems or things like that. Once you do that, we want you to be in the hospital because we don't know which of those two you're going to be in.
You
The Patient From Hell Podcast (26:30.778)
That was super helpful. Is there any other insight from the PCORI study that you would like to share with us?
Eneida Nemecek (26:37.02)
I think these studies are really important. Quality of life, I mean, we have these fancy therapies that cost a lot of money, but they also cause a lot of turmoil. And I think one of the biggest challenges of successful transplants is getting people back to normal after they go through the therapies we do. I can tell you in a lot of the quality of life studies we've done, if you ask people a month after treatment, they're like, you're nuts, don't talk to me about this.
Still at six months, most people are like, yeah, this was really hard. This is not what I signed up for. And then the other issue is after a year, if you've been able to transition people properly, then they can look back at the treatment and go, you know, this was worth it. And I feel better. But we don't do a good enough job with this portion of care as we do with the monitoring drug levels portion of care.
And I think it's really important to remind ourselves that the brain, our psychosocial life is part of our health. So I hope this is not the, think sleep, exercise, diet studies, anything that can improve the life of people should be studied in a very organized setting, just like you study drugs, if we're gonna do this well.
The Patient From Hell Podcast (28:04.122)
Thank you for sharing that. I'm going to transition us into the rapid fire round, which is a series of what questions, and I was taking notes, so I apologize upfront. It's going to be a series of what questions short answers would be great. So let's maybe start with what is bone marrow transplant?
Eneida Nemecek (28:09.484)
All right.
Eneida Nemecek (28:25.558)
Bone marrow transplant is replacing your immune system with the immune system of another donor or with a healthier immune system for you.
The Patient From Hell Podcast (28:36.494)
What is hematopoietic stem cell transplant?
Eneida Nemecek (28:41.388)
Hematopoietic stem cell transplant is a fancy way of saying bone marrow transplant. Hematopoietic is a blood -borne cell.
The Patient From Hell Podcast (28:51.118)
What is a stem cell?
Eneida Nemecek (28:53.13)
A stem cell is also called a progenitor cell. Some people call it the mother cell or the baby cell. It's the cell in our body that all other cells originate from.
The Patient From Hell Podcast (29:04.366)
What is bone marrow?
Eneida Nemecek (29:06.572)
bone marrow is an organ in our body. It is contained in the mushy part of the bone and it is where all our blood cells are made.
The Patient From Hell Podcast (29:17.584)
What is pediatric oncology?
Eneida Nemecek (29:20.002)
Pediatric oncology is a care of kids and adolescents with cancer.
The Patient From Hell Podcast (29:26.798)
What is cellular therapy?
Eneida Nemecek (29:29.248)
Cellular therapy is treatments that use our blood cells to cure something.
The Patient From Hell Podcast (29:39.662)
What is HLA typing?
Eneida Nemecek (29:43.593)
HLA typing is human leukocyte antigen typing, and that is how we identify what is self and non -self in the cells of our body.
The Patient From Hell Podcast (29:55.108)
What is leukemia?
Eneida Nemecek (29:56.94)
Leukemia is blood cancer.
The Patient From Hell Podcast (29:59.118)
What is multiple myeloma?
Eneida Nemecek (30:01.152)
Multiple myeloma is a type of blood cancer that's specific to a type of leukocyte or white blood cell called a plasma cell.
The Patient From Hell Podcast (30:11.736)
What are blood disorders?
Eneida Nemecek (30:14.338)
blood disorders are cancers and non -cancers that affect our blood cells.
The Patient From Hell Podcast (30:21.23)
What is Carti?
Eneida Nemecek (30:23.894)
Chimeric antigen receptor T cell therapy or CAR T is a form of cellular therapy where we take white blood cells and we engineer them to teach to go attack a specific target.
The Patient From Hell Podcast (30:37.198)
What is CRS?
Eneida Nemecek (30:39.18)
CRS is called cytokine release syndrome, and it's a complication from CAR T therapy, chimeric antigen tissue receptor therapy, where we can have a very large immune reaction when the cells go into the body and expand.
The Patient From Hell Podcast (30:54.694)
What is ICANN?
Eneida Nemecek (30:56.758)
ICANNs is, my goodness, immune affector cell associated neuropathy syndrome or neurotoxicity. And that is a form of toxicity from CAR T where this reaction where the cells expand affect the cells around central nervous system. And it can cause anything from feeling a little loopy to seizures.
The Patient From Hell Podcast (31:21.688)
What is the advice you give most often to a young child about to go through bone marrow transplant?
Eneida Nemecek (31:30.62)
It depends on the age of the child. We have to meet people where they're at and developmentally it depends on the age. I think it's important for kids to know that they're gonna be in the hospital, that they're gonna be sicker before they get better and that everybody's trying to help them and they're gonna have to help us take care of them.
The Patient From Hell Podcast (31:50.854)
What do you tell a young adult?
Eneida Nemecek (31:55.393)
I am very open with my young adults that I take care of. They're adults. I think they need to know they're in charge of their health. It's not mom and dad doing it anymore. And that they will be making decisions with the doctor as time goes by.
The Patient From Hell Podcast (32:13.092)
What advice do you give to most parents caring for young children?
Eneida Nemecek (32:18.917)
to take care of themselves. I have lots of respect for the parents of my patients. They have gone through things that none of us can explain. And also to engage other members of the family in the care of the kid so they can take care of themselves.
The Patient From Hell Podcast (32:37.508)
What advice you give to young adult parents, parents of young adults. Sorry.
Eneida Nemecek (32:43.148)
And to let their children be part of the decision making. I remember people that adults are adults. I am the parent of a young adult and one in the making right now.
The Patient From Hell Podcast (32:57.176)
All right, here's my last question to you. What advice do you give to fellow clinicians who are referring patients to you?
Eneida Nemecek (33:05.154)
keep the door open and refer as quickly as you think that you need us. The more time that we have to prepare your patient and the family, the better the outcome. So hop on the phone and call us. If you come too early, we're never going to complain.
The Patient From Hell Podcast (33:23.236)
Thank you so much. This has been such an educational session. I have really learned so, much. I'm sure that's going to be true for our community as well.
Eneida Nemecek (33:27.522)
Thank you.
Eneida Nemecek (33:33.336)
Thank you. All right. Thank you. Yeah, I'm like, my thing keeps beeping and making noise. Hopefully you can tune that out of that.
The Patient From Hell Podcast (33:35.61)
Thank you for squeezing us in. I hope you have a wonderful weekend.
The Patient From Hell Podcast (33:45.254)
We can do it out. Also, think it's a real thing that clinicians go through.
Eneida Nemecek (33:50.176)
Yeah, ding, ding, ding. I tried to close up, but one of them stayed open. I couldn't turn it up.
The Patient From Hell Podcast (33:56.504)
No, think it's real, though, because I and I try actually not we try not removing it from the episode because the fact that you're squeezing us in on a clinic day, I think that alone, I think sheds light on your life, which at least our hope is that our community sees that part because as a patient, we don't we don't see that. So it's a real.
Eneida Nemecek (34:10.124)
Mm -hmm.
The Patient From Hell Podcast (34:22.307)
All right.
The Patient From Hell Podcast (34:26.384)
you
Thank you.
The Patient From Hell Podcast (34:33.882)
Thank you.
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