Tag Archive for: treatment

Ask Your Doctor About These Essential Genetic Tests for CLL

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Ask Your Doctor About These Essential Genetic Tests for CLL from Patient Empowerment Network on Vimeo.

Genetic testing results can impact a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a deeper understanding into their disease. Dr. Steven Coutre, a CLL specialist, reviews essential tests and explains their role in CLL care.

Dr. Steven Coutre is a Professor of Medicine in the Hematology Department at Stanford University Medical Center. Learn more about this expert here.

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Transcript:

Dr. Steven Coutre:

In terms of testing for CLL, additional testing, of course, diagnostically, it’s generally not a challenge. It’s very straight-forward. A test that we call Flow Cytometry on a blood sample is usually sufficient to establish the diagnosis. Very, very uncommonly would a bone marrow exam be needed, for example. And in routine practice, also, we don’t necessarily give CT scans to establish a diagnosis or even to, as people say, stage the disease. It really isn’t necessary in most cases.

However, we do have a staging system that correlates with the extent of the disease and that’s simply based on our exam and blood counts, but people also want more information. They wanna know how they’re gonna do, specifically. So, we can add additional tests, genetic testing as people often call it, that can further subdivide individuals into groups that give you additional information on how you might do, meaning if you’re without symptoms, and an observation is recommended, you wanna know, “Well, how long is it gonna be before I need treatment?” Although our staging system gives that information, we can refine that further.

One test is the so-called FISH test, which looks at specific chromosome abnormalities, and the second test that’s generally used is called the IGHV Mutation Assay. That’s really looking at what’s called the mutational status of your immunoglobulin genes. So, it’s really those two broad categories that are most relevant.

Now, we don’t necessarily advocate doing that testing on everyone at the time of diagnosis. Certainly, not everyone who is without symptoms, where we’ve already decided that treatment is not indicated. So, as you can imagine, you can do that testing. You might come up with a profile that’s less favorable. And then, instead of the watch and wait approach, or as folks like to call it, “watch and worry approach,” you worry even more. But then, of course, if you have a favorable profile, then you’re happier. You’re more pleased.

However, we don’t do anything differently regardless of what those tests show, at least at current state. Compared to a decision that’s already been made about treat or not treat. We do, however, strongly advocate getting that testing at the time of treatment, and sometimes, repeating some of the testing with subsequent treatment, when you require treatment, say, a second time, in some cases. So, very important to have a discussion about these tests and what information you will get from them.

Well, we’ll often see patients who are coming for another opinion about their disease. Perhaps they’ve been recently diagnosed, and they have been advised for observation, so, it’s, of course, natural to ask whether that’s a reasonable approach. And in that context, other testing often comes up in the conversation. Perhaps they had the testing done, the FISH, and the mutational testing, and they wanna know what it means, or actually we see some results that have been obtained and we ask them about it. And there’s very often confusion, or really lack of information about what they mean.

So, we really try to discuss that issue. That issue of testing with each and every patient, whether or not they’ve had it done, really trying to let them know what it means. That way they’re fully informed, and in some cases, people feel very strongly that they would like to have it done, even through they realize that we’re not gonna act on it at that point. So, I think pretty much for all patients, it should be part of the initial discussion.

Again, in terms of genetic testing are these tests that I discussed. It’s important to understand what information they give you so you understand why your physician may be making a distinction between one therapy versus another. It is very, very important to get that testing, if somebody is talking about using chemotherapy, for example, hopefully. That’s quite uncommon. But with our newer agents, we know that they work broadly despite those other features.

Nevertheless, I think it’s important for a patient to at least expect the discussion about these tests. We’re not asking you to go to your physician and ask that they be done in all cases, but really understand perhaps why your physician recommended that they not be done at that particular time. 

Advocate for These CLL Genetic Tests

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Advocate for These CLL Genetic Tests from Patient Empowerment Network on Vimeo.

Genetic testing results can influence a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a more in-depth understanding into their disease. Dr. Philip Thompson, a CLL specialist, reviews key tests that CLL patients should advocate for.

Dr. Phillip Thompson is an Assistant Professor in Medicine in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about this expert here.

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Transcript:

Dr. Philip Thompson:

I would say that I see a lot of patients that have previously seen an oncologist closer to home and then traveled to MD Anderson for a second opinion. And so, I can say that over the last three or four years, there’s definitely a significant change in the awareness of physicians in general about doing genetic testing for CLL.

So, in particular, almost everybody will get a FISH test, which I didn’t always see three or four years ago. And more patients are now having IGHV mutation status analysis done. The thing that I see that is very rarely done, though, is what we call next-generation sequencing, or NGS, that looks for mutations in individual genes, and most importantly, in the TP-53 gene that I mentioned.

So, I would – and the other thing that often isn’t done is what we call a carrier tag, which is a routine analysis of the chromosomes of the CLL cells. And it requires some special techniques for the lab to get it to work in CLL. But that can actually provide additional information compared to just FISH.

So, I would suggest to a patient, particularly if they’re gonna do a bone marrow biopsy on you, which is an invasive procedure, that you really try to get some clarity around what tests are going to be ordered on that beforehand. And if you’ve just been diagnosed and you’ve got early-stage CLL, you can make an argument about how many of these tests are absolutely necessary to start with. Because the biggest utility in these tests is in determining what type of treatment you’re going to have.

If you’re not immediately going to have treatment, they don’t necessarily change what your oncologist is going to do. They’re going to monitor you over time and see if your disease is getting worse or not. But I still think they’re useful to have the – a lot of them are useful, particularly the IGHV mutation status and FISH are useful to have at initial diagnosis. Because they give you a really good idea of what the biology of this disease is – this patient’s disease is like and how quickly they’re likely to progress, and that may change how frequently you monitor the patient.

But anyway, I would say it’s important to ask them what genetic testing you are gonna get. And that you ask – have an understanding of what can be ordered.

 And in particular, if you’re going to get treatment, you must ask for TP-53 sequencing, FISH for 17-P deletion, and IGHV mutation status because those three things are essential to determine the optimal treatment that you have. And you shouldn’t feel shy about asking, are those things going to be done.   

What Do Genetic Tests Reveal About My CLL Treatment Options?

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What Do Genetic Tests Reveal About My CLL Treatment Options? from Patient Empowerment Network on Vimeo.

 
Genetic testing results can influence a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a more in-depth understanding into their disease. Dr. Phillip Thompson, a CLL specialist, reviews three important testing results that can impact treatment timing and approaches.
 
Dr. Phillip Thompson is an Assistant Professor in Medicine in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about this expert here.

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Transcript:

Dr. Philip Thompson:

So, there are three main things we look at before initiating treatment in a patient.

One is what we call the IGHV mutational status of the patient. And this basically splits people into types of CLL. So-called mutated or unmutated. And this is a relatively complex concept. Basically, what happens in normal B-lymphocyte development, so B-lymphocytes are part of your immune system. Their job is they have a probe on the surface of the cell that looks for invading microorganisms. And when they find an invader, this probe binds to the organism. And then the cell actually undergoes, as part of its normal development, a process of mutation so that it makes the best possible antibody to fight that infection. So that’s a normal process that the B-lymphocyte undergoes when fighting infections.

So, CLL can arise from what we call a mature antigen-experienced mutated B-cell, or it can arise from a naive B-cell that has never gone through that process, in which case, it will have an unmutated IGHV. Now, it’s kind of counterintuitive, but the patients with a mutated IGHV generally have better outcomes. That type of CLL is less proliferative, it doesn’t grow as fast, and it also tends to respond better to certain types of treatment. Particularly, it responds better to chemotherapy than patients with unmutated IGHV.

However, the difference between those two is less important if you’re getting some of the newer therapies. Particularly, it seems like if you receive BTK inhibitors, it doesn’t really matter if you have mutated or unmutated IGHV, patients are responding very well. But I like to know whether they have a mutated or unmutated IGHV because it’s helpful for giving the patient an expectation of how their disease is likely to behave biologically.

But also, if they have a mutated they may be a candidate for chemotherapy-based treatment. Whereas if they have unmutated IGHV, I don’t use chemotherapy for those patients.

 

The second thing is a test called FISH. And FISH looks for chromosome abnormalities. So, we have 46 chromosomes, 23 from our mother and 23 from our father. They contain all of our genetic information. And in malignant diseases, you can have major abnormalities in the chromosomes of the cancer cells. Not in the rest of your body, just in the cancer cells. And they happen because of errors that are made when the cells are replicating their chromosomes.                                                                 

So, in CLL, there are four common abnormalities that we look for in a test called FISH, and they tell us a lot about the patient’s prognosis. And there’s one in particular that we look at that has a major impact on our decision making, and that’s a deletion on Chromosome 17.

So, a missing piece of Chromosome 17. And the reason that that’s important is it tends to be an aggressive form of CLL. It also does not respond to chemotherapy, or if it does, the responses are very, very short-lived. So basically, that’s a contrary indication to receiving chemotherapy for your CLL when you should receive another form of therapy if you have a 17-P deletion.

And then, finally, we look at a type of – we look for individual gene mutations in the cells. And that’s different from IGHV mutational status, although the names are kind of similar.

So, in CLL, there are numerous genes that can be affected by mutations that alter the function of the gene. In some cases, it makes the gene non-functional; in some cases, it changes the function in some way that perturbs the normal functioning of the cell and contributes to the malignant transformation of that cell.

So, the most important one, again, relates to a gene called TP-53. So that’s the gene that is deleted if you lose a piece of Chromosome 17. It’s located on the P arm of chromosome 17. If you mutate that gene, it has the same consequences essentially for the cell as if you delete it by deleting a piece of the chromosome. And the two often go together, so you’ll have a 17-P deletion and a mutation of the TP-53 gene on your other Chromosome 17. Because remember, you have two chromosome 17s. So, if you lose both, it may be even worse than only having one. However, it does seem that if you only have a mutation on the TP-53 gene, but you don’t have a deletion on Chromosome 17, that the responses of those patients to chemoimmunotherapy are still really poor.

So, it’s very important to find out, do you have a TP-53 mutation as well as do you have a deletion on Chromosome 17 before you embark on treatment, particularly if that treatment is going to be chemotherapy. So, those are the three things that we look for before    we start any patient on therapy.

An MPN Care Partner Shares Why He’s Optimistic About the Future

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An MPN Care Partner Shares Why He’s Optimistic About the Future from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell, husband of myelofibrosis (MF) patient advocate Summer Golden, explains why he’s hopeful about their future together. Jeff shares key resources that have helped him stay educated and maintain optimism.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

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Transcript:

Jeff:

It’s important to educate yourself because the more you know the less fear can overcome you. And this particular disease – the research is happening so fast, and things are changing. In my estimation, they’ll find – right now, the only cure is a stem cell transplant. It’s normally not done for older people. That in itself is innately risky. I’m convinced, probably within the next five to seven years, there will be a cure for this disease that’s not a stem cell transplant.

The research is moving that quickly on it. And if you don’t follow the disease and the people that are working on it, the specialists, you’re gonna have a much greater chance of feeling powerless and getting overwhelmed by it. As Summer believes, attitude can have a huge, huge impact on how the course of your disease runs. And a doctor would tell you the same thing.

For me, it started with Patient Power. Patientpower.info, I believe is, what it is. They have a whole section for myeloproliferative neoplasms and myelofibrosis, and they’re short videos. And you get a chance to listen to the best doctors that are the head people in this, Dr. Mesa, Dr. V [Verstovsek], and Dr. Jamieson – all the people that are really the movers and shakers. They speak. And you also get a chance to hear other patient’s stories and how they’re dealing with it. And that will give you a much better idea of what you’re facing. And you can really understand things from there. And you can get your knowledge.

Fear comes from lack of knowledge. In my job as a pilot, I flew for 50 years. I very, very rarely was afraid because my knowledge was so great and was reinforced every year by continual training that I felt prepared to handle anything that might come across to me. Knowledge is really important. It will allay your fears dramatically.

When I started online and heard about people that had been journeying with this for 10 or 15 years, initially, I had thought – well, this is a year or two, and it’ll be the end. And then I realized, plenty of people have lived with this for a long, long time. And they had a journey, and they’re doing it successfully. And that gave me confidence.

The more people you can talk to about it, the more you can put your journey in perspective. And it’s really hard to put in perspective for this particular disease because it affects everybody vastly differently. Some cancers – the progression is very, very linear. Everybody kind of goes through the same thing. This one – it depends on the mutations you have in your blood and all kinds of things like that, and some people get really bad symptoms quickly.

Others, they don’t. But the more you know about how those things affect you, the more you know and can understand about what to expect. And the more people you talk to who have it, you can find out about their journeys. It helps put yours in perspective.

I’m optimistic because I really keep up to date on what’s going on. And I see the doctors that are in the forefront of this and the research that they’re putting in and the care they have for working on this disease and the knowledge they have, and I just am quite optimistic. And as I say, I’m following the medical developments extremely closely.

I went to the ASH Conference last year. And I’ve gone to another conference that our doctor spoke at. And I’m just kinda blown away by – I’m fascinated by the science.

My advice would be find out as much as you can about it and support each other in a way that works in your own marriage.

Summer and I approach life a little bit differently. And yet, one of the reasons we do so well together is we kinda have both ends of the spectrum covered. And I sensed that when I met her 20 years ago. And we brought something to the table that each of us needed. And if you can find that in your relationship with your significant other that has the disease, what you can bring to it, what they can bring to it, you can be a tremendous support for each other.

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis

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A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell shares how he and his wife, patient advocate Summer Golden, have dealt with her myelofibrosis (MF) diagnosis. Jeff explains how online support and finding an MPN specialist were essential steps in helping them continue to live life to the fullest.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

 

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Transcript:

Jeff:

The worst part was initially. We didn’t get a myelofibrosis diagnosis.

It took about a month because in order to definitively diagnose it they have to take a bone marrow sample and send it to a pathologist and so on and so forth. So, all that time, I’m worrying about the possibilities. It could be leukemia or this, that, or the other thing. My way of handling and dealing with scariness – I’m a retired pilot – is to find out things, knowledge.

I spent a huge amount of time on the internet. The LLS Society has papers about it, and I read those.

And the more I got into it – once we found out it was myelofibrosis, I’ve read almost all of the papers that the doctors write for each other to find about this. That doesn’t interest Summer in the slightest. It interests me greatly. So, when we have an appointment with the doctor – when I’m talking to the doctor, it’s like two doctors talking to each other.

When Summer’s talking to her, they talk on a different plane. It’s much more about mental approach to things and that kind of thing.

And for me, when I think back to the beginning of when we had this and where we are now two years later, we’re living the life that we lived before she was diagnosed to be real honest with you.

We do everything that we did before she was diagnosed the same way we did it before, and it was a trip that probably everybody who gets diagnosed or deals with a person that has the disease takes. When it first happened, it hit us like bricks coming out of the sky hitting us on the face. Literally, when we first went to the hospital and she got the word that there was a problem – as I say, we lived in two separate houses – I literally was afraid to call her phone figuring she might be not there. I was that scared. And then, after we met our doctor, which was extremely fortuitous – when we went to the emergency room, the person that was there, she said these look like leukemia things.

So, she called the oncologist. The oncologist on call is our current doctor, Dr. Tiffany Tanaka, and she’s a specialist in this disease. It was like it was meant to be. And Dr. Tanaka asked the guy to do some other tests and then said, “Send her home, but tell her I need to see her this week.” So, we’re thinking all these horrible things. And its New Year’s weekend, so the clinic is closed for about five days, you know? We’re worrying and worrying and worrying.

We finally saw Dr. Tanaka, and it was like a breath of fresh air. This wonderful doctor has the ability to just communicate with the patients. I’m interested in the disease, so she communicated on my level. Summer is not interested in all the medical jargon, so she was able to explain to Summer what was going on and just very, very reassuring, very reassuring.

And then, I went and started getting information. That’s my way of coping with things. The first place I went was – I went to Patient Power and found a lot of information there.

And then I found the online myelofibrosis support group at Facebook. And that was very, very useful. When I started reading about the fact that some people had this for many, many years – then I said this is not – nothing’s gonna happen in the next year or two. We can go back to living. And once we learned more about it and spent more time with our doctor and Summer was able to live her life once she got taking the medicine – she takes Jakafi.

That controlled the basic symptoms, and we haven’t looked back. We just started living our life the way we had been living it before.

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs

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Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs from Patient Empowerment Network on Vimeo.

Could laugher really be the best medicine? Patient advocate Summer Golden explains how she uses comedy to cope with her myelofibrosis (MF) diagnosis and shares her mission to inspire others.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

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Transcript:

Summer:

When I was initially diagnosed after some other false starts with an MPN, I was kind of shocked because I’ve never really been sick, and I don’t take medications, but I didn’t think about it – that sounds crazy; I can’t explain it. I just figured I’d be okay, and the main thing – I didn’t wanna give up this theater.

You know how when you’re my age, people talk about nothing but their illness sometimes? I just never been into that, so it wasn’t part of my personality.

I started doing comedy two years ago because a friend of mine was taking a comedy class, and I went to her showcase, and I thought, “I should try that, even though I’ll never be funny, I have no jokes, and I don’t know what I would say.” But, I went, and I did comedy in clubs for a while, and then I didn’t – I don’t really like drinking and dirty jokes, so I kind of got away from it off and on, and then, when I got into doing it about my myelofibrosis, then I saw a purpose in it, so I went back to it.

I was thinking about whether my life was gonna be changed, how this was gonna change me, so I emailed my comedy teacher in the middle of the night, and I said, “Do comedians ever talk about cancer, having it?” And, he said, “Only if they have it.” So, I emailed him back and I said, “I’m coming back to your class,” so I did. He assigned everyone to be in a showcase. I was gonna do mine about cancer. It was six weeks, so I had to find humor. I don’t know how I find it. I just kind of see things.

I was shocked because I thought people were gonna hate it, and I was gonna quit, and then I’d invited my doctor and two friends, so I thought I’d better not just not show up. But, people came up and said they were inspired. I was just amazed because I mainly –I don’t go out of my way to think of – I do think of things that are funny, but it’s just – it’s a real thing. I try to keep my comedy real.

It’s helped me by being in control. I don’t pay much attention to the symptoms because I’m kind of over them.

Just helped me feel like I’m doing what I can do, and so far, it seems to be working, as long as I get enough sleep.

How do I think comedy could help other people who have health problems? I can tell you one way I thought to help somebody. I wanna start a class for people, but so far, there hasn’t been a lot of interest, but I think I could really help people doing that because I know how to write comedy.

If they really wanna do that, they would be a type of person that has humor, and they could do it, but you’ve gotta realize sometimes, people get a lot out of being sick. There are a lot of rewards, and so, they might prefer to have those rewards. For my way of thinking, if they wanna do humor, it’ll make a big difference, and if somebody wants to do it, they could call me, and I’ll help them.

Could an MPN Clinical Trial Be Right for You?

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Could an MPN Clinical Trial Be Right for You? from Patient Empowerment Network on Vimeo.

Is a clinical trial your best MPN treatment option? Dr. Ruben Mesa explains the clinical trial process and how patients may benefit from participating.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Transcript:

Dr. Ruben Mesa:

There is much exciting research in myeloproliferative neoplasms. First, research trying to understand, why do people develop MPNs, and why do they progress. This is crucial research, and that this basic research to better understand the diseases will help us asses whether our treatments are having an impact slowing down the progression of the disease, and help us better design therapies that, hopefully, can cure these diseases.

Be reassured  that our goal as a scientific community is to cure the MPNs. Now, until we’re able to do that, we want to be able to best control them as best we can. So, the next level of research is really in new therapies; primarily drug-based therapies, but future therapies using the immune system; potentially using vaccine therapy to try to better control the disease to make the disease as neutral in your life as possible.

Our goal, short of curing the disease is to make the disease as invisible in your life as possible. Hopefully, minimal side effects, minimal symptoms, protected against risk of blood clots or bleeding, ideally, decreasing the risk of progression, and hopefully without any significant side effects from the medication your receiving.

So, that really is our goal.

 Clinical trials are a crucial way for us to improve the treatments that we have for any diseases. And in particular, in areas like myeloproliferative neoplasms where we have therapies, but we don’t have cures, clinical trials are crucial. Clinical trials are a structured way for you to be able to receive a new treatment. That treatment is closely monitored, and starts with a strong belief that that treatment is going to be beneficial for you.

Being on a clinical trial has many steps, but you are in the driver seat in each of them. So, you’re able to enroll in a study, and you’re able to decide at any point whether or not you’d like to continue on in that study. You are made clearly aware of what you’re receiving; what dose; what to expect at each and every step of that therapy.

It’s a treatment just like any other, but we use them because we are hoping that it will be better than the treatments that we have, and we do it on a clinical trial so that we can learn from that experience. If that drug is better, then we should probably expand its use and give it to other people, and have it be approved and used around the world. Or for whatever reason that therapy is not as helpful as we would like, then we learn from that, as well.

Why was it not helpful? Was it the wrong therapy? Was it targeting the wrong aspect of the disease? Were there side effects that made the therapy not beneficial? So, we learn a lot about it in either direction. Hopefully, individuals who participate in clinical trials will have a direct benefit themselves by being able to experience a new therapy that is, hopefully, better. But also, they do have the ability to help other patients now and in the future that will be facing the same disease they have.

How Does Genetic Testing Impact Your MPN Treatment Options?

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How Does Genetic Testing Impact Your MPN Treatment Options? from Patient Empowerment Network on Vimeo.

How can genetic testing results impact your treatment and treatment response? Dr. Ruben Mesa provides an overview of common mutations associated with essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF) and how identification of these mutations are moving research forward.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Transcript:

Dr. Ruben Mesa:

We are learning much more about the genetics of Myeloproliferative Neoplasm, as we truly are about the genetics of many diseases. First, when I speak of genetics, these are not the genes we think of of inherited genes that are passed from mother and father, to son or daughter. These are the genes in ourselves that potentially can change over the course of our lives, and those changes or mutations can be associated with diseases.

So, what we have learned is that the genetic changes that are associated with myeloproliferative neoplasms are important, both in terms of predicting how the diseases might behave, and also, potentially in terms of therapies. The genetic changes fall into two different groups.

There’s a first group of the most common mutations that we think are important in driving the disease. The most common is the mutation in a protein called JAK2. That’s a mutation in about half of the patients with ET, half with PV – or half with myelofibrosis, and the majority with polycythemia vera. There is mutations in calreticulin. That’s about in a third of patients with ET, and a third with MF. And then, there’s mutations in MPL, which are present in a handful of patients with ET and with MF.

But in addition to those three mutations that tend to be mutually exclusive; patients tend to only have one of those, and there’s a small group of patients that do not have any of those three. But there’s another group of mutations that we have learned about.

That we are able to obtain on panels of sometimes anywhere from 40 to 100 genes that may or may not be changed or mutated in diseases like MPNs and the implications of what those pattern of changes in those mutations have for those patients. 

Newly Diagnosed With an MPN? Start Here.

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Newly Diagnosed with an MPN? Start Here. from Patient Empowerment Network on Vimeo.

If you’ve been diagnosed with an MPN, such as essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF), Dr. Ruben Mesa outlines key steps you should take, including a visit with an MPN specialist.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Transcript:

Dr. Ruben Mesa:

Patients who have a Myeloproliferative Neoplasm should consider seeing an MPN specialist at least at some frequency. The myeloproliferative neoplasms are not common illnesses. They’re not exceedingly rare, but they’re not common. And there is many nuances in terms of how we best diagnose the disease; the discussion we have with you regarding what are the treatment plans and goals, and then putting that plan into effect.

So, frequently, there’s a value in seeing someone who focuses on MPNs to help to establish that plan, and then frequently, there is a home physician, hematologist, or medical oncologist that works together along with the specialist in terms of managing the patient.

When patients first come for their visits related to an MPN, they have many questions. You know, they’re not common diseases, and people typically don’t have much experience with them. They’ve not had a family member that’s afflicted or someone at work. So, frequently, it comes on out of the blue. People will frequently, sometimes, go online and get a lot of information, but sometimes too much information; information that may or many not be appropriate for them.

So, there are many questions that are valuable, and I always advise patients to write down their questions ahead of time because sometimes in the heat of the moment, having a conversation, particularly with a new physician or provider, those questions may not, necessarily, be top of mind for them. So, we can go through those questions clearly.

I think key questions, I wouldn’t limit it to one key question, but I’d say I would put them in categories. 1.) Truly understanding the diagnosis; what’s the actual diagnosis that that patient has. 2.) What does the physician think are the risks that patient has? With each of the diseases, there are different risk classifications, and that will also help to give patients a frame of reference if they read other information about their disease online from highly reputable sources, or other educational sort of materials.

To understand, what is the recommended treatment plan. The plan may or may not included medications and understand what those medications are intended to do, and what their side effects may be, or what to anticipate.

It may or may not include aspirin, it may or may not include phlebotomy, or it may or may not include other therapies. So, understanding that diagnosis, understanding the risk, and understanding, what is the recommendation in terms of treatment.

Could an MPN Clinical Trial Be Your Best Treatment Option?

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Could an MPN Clinical Trial Be Your Best Treatment Option? from Patient Empowerment Network on Vimeo.

Lindsey Lyle discusses the role of clinical trials as an MPN treatment option and how research is advancing the field.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

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Diagnosed With an MPN? Why You Should Consider a Second Opinion.

Improving Life with MPNs: The Latest Research and How to Get Involved

An Expert Summary of Current MPN Treatment Options

Transcript:

Lindsey:

When considering treatment, remembering that clinical trials are an option – and often, a very good choice – is something that I really try to communicate to my patients. Generally, there’s a stigma around clinical trials as patients feeling like a lab rat or some sort of a study subject, and there is a perception that they’re not receiving as good of care as they would if they were not on a clinical trial. However, in my patients, I really try to dismiss this thinking because at this point in time, we do have really fairly good options for treatments with MPNs.

However, we do not have a cure for MPNs outside of a transplant, and our treatments are not perfect, and so, enrolling in a clinical trial really should be considered by patients and their providers as a very viable option.

It’s generally introducing perhaps a new way of approaching the disease treatment. Oftentimes, clinical trials are using a combination of agents, which is not necessarily available outside of the clinical trial.

And so, with clinical trials, we’re always trying to make something better. We’re trying to learn something, we’re trying to, No. 1, help the patient – so, my No. 1 goal in enrolling one of my patients in a clinical trial is to, first of all, help them, help control their disease, help them to feel better, and to live a long and good life. No. 2, we learn as we go along. Clinical trials are critical for drug development and for the future of treatment in patients with MPNs.

So, not only are our patients helping themselves, but hopefully, they are helping the future MPN patients who may come along and need a treatment. So, I always like to keep this really in the conversation when discussing treatments, and it may be up front, and it also may be after a treatment has stopped working that we consider a clinical trial.

So, there are also a lot of things that kind of go into clinical trial management and different requirements, so if a patient lives very far away, it may be challenging for them to come back to the academic center on a regular basis for routine clinical trial monitoring that’s required by the study, but if they live close by, I generally do recommend this. They are also associated with clinical research coordinators or clinical trial nurses.

And, these patients are monitored really very closely, and it’s kind of nice to have that extra person in it with you in the clinical trial, just another point person to discuss, perhaps, how you’re feeling or different questions or concerns as the clinical trial proceeds. So, when talking about treatments, in my opinion, especially in MPNs, clinical trials really should be one of the options that is first discussed when thinking about starting treatment, and especially if a treatment has stopped working.

So, there are very many exciting possibilities in MPN research right now. We have a lot of combination therapies, which I think I am most excited about, because we have a decent backbone of therapy at this point, but building on that and trying to maybe enhance the way that the backbone therapy works, and also to perhaps change the microenvironment of the bone marrow – basically, trying to reverse fibrosis.

So, there is currently a drug in clinical trial that is looking at this, and we are proceeding with this trial, and really hoping for the best, but I think that to combination therapies where we can put two things together that we think work really well together to help produce good outcomes – I think I’m most excited about that at this point.

Ready to Start an MPN Treatment? What You Need to Consider.

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Ready to Start an MPN Treatment? What You Need to Consider. from Patient Empowerment Network on Vimeo.

Lindsey Lyle discusses the factors that should be considered when choosing a therapy.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Diagnosed With an MPN? Why You Should Consider a Second Opinion.

Essential Lab Tests for MPNs

An Expert Summary of Current MPN Treatment Options

Transcript:

Lindsey:

When deciding about a treatment, it’s really important for the healthcare professional and the patient to discuss the patient’s goals.

The patient really is the key player here, and we as medical professionals are here to support the patient’s goals. So, what might work for one patient is not going to be necessarily the same treatment I would choose for a different patient. So, right off the bat, identifying the patient’s goals – and really, what are we trying to fix in one specific patient is going to look different from the next patient I see in that day.

For example, there are certain clinical manifestations of MPNs that need specific treatment approaches and maybe honing in on trying to help one clinical issue.

So, first of all, identifying the disease process – that’s No. 1. What is the diagnosis? No. 2: Coming up with a goals of care plan with the patient. What is causing them the most difficulty in their everyday life, and how are we going to fix that? That’s generally where I start.

Then, I discuss with the patients the different options for treatment, which either include therapies that are FDA-approved or enrolling in a clinical trial. And then, we really talk about pluses and minuses for each of these therapeutic decisions.

Patients may have different comorbidities, so they may suffer from different chronic diseases that may impact the treatment that is chosen with the patient and their provider, as well as discussing stem cell transplant, which we haven’t talked much about, but stem cell transplant is an option, and at this point, the only curative therapy for patients with myelofibrosis. And so, determining whether or not transplant is in the patient’s best interest is also a topic of discussion when deciding on therapy approach.

Diagnosed With an MPN? Why You Should Consider a Second Opinion.

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Diagnosed With an MPN? Why You Should Consider a Second Opinion. from Patient Empowerment Network on Vimeo. 

 Physician assistant Lindsey Lyle explains the importance of seeking a second opinion when diagnosed with an MPN.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Am I Meditating Correctly? Getting the Most out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved

Transcript:

Lindsey:

When a patient is initially diagnosed with an MPN, seeking a second opinion is generally a very good idea, especially if patients are perhaps in an area where they do not have access to academic medical center.

The reason is that MPNs are such a small percentage of blood cancers – and, blood cancers in and of themselves are very rare, so MPNs are very rare, and especially in rural places, physicians do not have access or experience so much with MPNs. So, especially in those scenarios, I always advise a second opinion.

However, even within the academic medicine world, for example, if a patient is referred to me by their primary care physician or our institution, we always offer patients to seek a second opinion. Really, this is to gather information and either encourage the patient because the recommendation is the same or also to perhaps have a different idea for treatment that may fit the goals of the patient better, and so, I’m always telling patients to seek second opinions.