Tag Archive for: progression

Are There Predictors That an MPN May Be Progressing?

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Are There Predictors That an MPN May Be Progressing? from Patient Empowerment Network on Vimeo.

Many people living with MPNs are worried about progression. Dr. Raajit Rampal talks about possible indicators and discusses ongoing research to learn more about disease progression. 

Dr. Raajit Rampal is a hematologist-oncologist specializing in the treatment of myeloproliferative neoplasms (MPNs) and leukemia at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Rampal.
 
 

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 Understanding MPN Treatment Options _ What’s Available for MF, PV, and ET

Understanding MPN Treatment Options | What’s Available for MF, PV, and ET?

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Understanding and Managing Common MPN Symptoms and Side Effects

Transcript:

Katherine Banwell:

How do you know when it’s time to change treatments? 

Dr. Raajit Rampal:

Well, I think really two things. One is if we aren’t meeting our goals like we just talked about. But the other aspect of that is if we are incurring toxicities that are just not tolerable to the patient and that’s a reason to change therapy always. 

Katherine Banwell:

Many patients, of course, worry about disease progression. Are there key predictors or tests for progression that patients should know about? 

Dr. Raajit Rampal:

This is a key area of investigation currently. I think one of the things that patients say to us so often when we meet them is what’s going to happen to me. And right now, we don’t have great prediction tools. We can say on a population level well, there is X percent of chance of progression at 15 years. That’s useful if you’re talking about a population. That’s not really useful if you’re talking to an individual. Because if I say to somebody there’s a 20 percent chance of your disease progressing to leukemia, it doesn’t really make a difference. That’s a meaningless statement because if you’re in the 20 percent who progress, it’s not a relevant statistic anymore. 

It’s sort of a binary thing. We’ve got to do better at developing this. This is something that the MPN Research Foundation is really heavily invested in in trying to identify predictive biomarkers. 

If we can do that, then perhaps what we can do is say to a patient this is really what we think your actual risk is. And then, the next step is asking the question if we intervene early, can we prevent that progression from occurring. So, that’s where I think we need to go. We aren’t there yet. 

Katherine Banwell:

What signs or symptoms do you look for that may indicate that the disease is progressing? 

Dr. Raajit Rampal:

The blood counts are often the canary in the coal mine regardless of the disease. They can tell us if ET or PV is progressing into MF or whether MF is progressing to more of a leukemic phase. Changes in symptoms sometimes can be a harbinger of disease progression. So, Patient 2, for example, is doing really well and now, he’s having drenching sweats and losing weight. So, those types of symptoms are a sign that physical findings is the size of the spleen if it’s increasing. All of those things together give us a hint about progression.  

Katherine Banwell:

Well, is there any way to prevent progression? 

Dr. Raajit Rampal:

That is the million dollar question. Again, that’s where we ultimately need to be. We want to be able to intervene to a point where patients don’t get that sick. It would be amazing if we’d come to the point where we can intervene early and nobody progresses to late stage MF. Nobody gets leukemia. And I think that’s a worthy goal. That’s not something that we should think is too lofty of a goal. That should be our ultimate goal here. And a number of groups are investigating this exact question. It’s complicated and it’s going to take time. But I think that’s a worthwhile investment. 

Why Should People With Prostate Cancer Share Emotional Issues With Their Team?

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Why Should People With Prostate Cancer Share Emotional Issues With Their Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Tanya Dorff explains common emotional issues that arise during treatment and monitoring, and why it’s important for patients to speak up about any feelings that may be causing distress.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 
 

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How Can Palliative Care Help People With Prostate Cancer?

 Strategies for Treating Advanced Prostate Cancer Symptoms

 What Is Personalized Prostate Cancer Medicine?

Transcript:

Katherine:

Beyond treatment, another large part of thriving with prostate cancer is dealing with the emotions that come along with the diagnosis, like fear and anxiety. Whether it’s the stress of being in active surveillance or worrying about progression, many patients need help coping emotionally. Why do you feel it’s so important for patients to share these emotions with their doctor or their healthcare team? 

Dr. Dorff:

I think it’s a conversation that’s not held enough between patients and their physicians, and if we don’t remember to ask our patients, we will just focus on the medical because that’s our main wheelhouse, that’s what we’re best at. So, if a patient brings forth that they’re having some emotions related to the cancer, it is helpful to us in remembering – we ought to do everything 100 percent all of the time, but let’s face it, we’re physicians with time pressures and certain areas of comfort and expertise. So, if a patient brings it up, that is super helpful because then we know someone’s needing assistance, which probably every patient is, whether they tell us or not, but that triggers us to then offer appropriate referrals. 

And also, it tells us they’re open to it. If we have to ask every patient, “Are you having any emotional distress?”, even if someone answers yes and then we make a referral, they may not have actually been ready for it or open to it. So, having the patient come forth and raise that, I think, is really helpful and important. 

How Can Palliative Care Help People With Prostate Cancer?

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How Can Palliative Care Help People With Prostate Cancer? from Patient Empowerment Network on Vimeo.

Some prostate cancer patients may receive palliative care, but how is it used exactly? Expert Dr. Tanya Dorff explains research studies about palliative care and how it can be used to improve quality of life for patients.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 

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 Strategies for Treating Advanced Prostate Cancer Symptoms

 What Is Personalized Prostate Cancer Medicine?

Transcript:

Katherine:

What is palliative care, and how can it help men with prostate cancer? 

Dr. Dorff:

Palliative care is something that we think about more towards the end of life, where we’re focusing on cancer symptoms more than treating cancer. However, some studies have shown – very prominent studies – that early palliative care in some malignancies is associated actually with better survival, meaning that paying attention to the patient’s symptoms is actually a really important part of keeping them well and keeping them alive as we treat the cancer. 

So, more and more, we’re starting to integrate palliative care earlier in the disease.  

I think that can sometimes signal a little alarm for patients – “Oh, I’m being referred to palliative care, that means my doctor doesn’t really think they can treat my cancer anymore” – and it’s gonna take some education to really help people transform their thinking about palliative care as a strategy that’s not for the end, but something that really should be part of our treatment all along. 

So, our palliative care team, or what we call supportive medicine at City of Hope, uses treatments to manage pain. They have a broader spectrum, they’re more focused on all the different modalities to treat pain, so an oncologist or urologist can treat pain, but when we refer to palliative or supportive medicine, you get just that extra expertise, especially if people are having a lot of side effects from pain medicines, but our supportive medicine doctors aren’t only pain management doctors. 

They help with other symptoms, like nausea or constipation, to some extent urinary symptoms for my prostate cancer patients, although we rely heavily on urology for that, and also just the existential, or spiritual, or emotional components. 

Our supportive medicine team typically includes not only an MD, an advanced practice provider like an NP, but also someone from psychology, someone from social work, because dealing with cancer is really stressful and challenging, and in an ideal world, palliative care is not only taking care of the symptoms of the cancer that are physical, but also helping the whole being, the whole family unit that’s going through this experience have less emotional distress as well. 

Is There MPN Research Underway to Help Understand Progression?

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Is There MPN Research Underway to Help Understand Progression? from Patient Empowerment Network on Vimeo.

How and why do MPNs progress? MPN specialist Dr. Joseph Scandura shares an update on research being done to better understand–and possibly prevent–disease progression.

Dr. Joseph Scandura is an Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura.

See More From Thrive MPNs

 

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What Are the Signs of MPN Progression?

What Are the Signs of MPN Progression?

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What Are Indicators of MPN Progression?

Expert Perspective: Hopeful MPN Research and Development

Transcript:

Katherine Banwell:

Is there research being done on MPN progression to understand how it happens or even prevent or slow progression? 

Dr. Scandura:

Yeah. There’s a lot. I think there is a – from both the sort of basic laboratory using animal models to try to understand what are the kind of systems that are involved in how these diseases change. What genes are involved? How do they talk to each other? You know, these are not cells that live in a vacuum, right? They live in a special microenvironment. What are the signals that crosstalk between the MPN cells, the MPN stem cells, and their microenvironment?  

And so, there’s a lot of research on that and the basic side of things. In humans, there’s a lot that has been done over the years in terms of trying to understand what are some of the genetic features of progression. And I think we’re beginning to get a little bit of a better understand of what are the non-genetic things that are associated with progression.  

I was part of an effort from the MPN Research Foundation and still am.  

They have what they call the Progression Network, where they tried to put together a number of investigators from really across the world to share ideas about the nature of progression and how we might look at studying this and understanding ways to prevent progression.  

I think we do have some drugs now that show some promise in terms of being able to prevent progression. I think interferons have shown this in polycythemia vera in terms of a promise for improved long-term outcomes and delayed risk progression. I think that the gold standard randomized trials are maturing and are sort of bearing out some of the same findings that have been observed retrospectively, so sort of kind of looking back in time.  

But the difficulty is that it can take a long time for patients to progress. And you say, “Oh, that’s great.” And that is great. But, from a research – from a statistical side, it means things are really slow. If you have to wait 15 years to assess whether or not people progressed less in one treatment versus another, it’s really slow going. And so, we have to do a compromise of what’s – you know, what do animal studies say? What does retrospective analysis, when we might have people who started treatment 30 years ago, and now we’re just seeing how did it all work out? It’s not a perfect study, because biases can creep in, but it’s what we have now. And so, there’s a lot. And I think, increasingly, progression is being recognized as a goal of therapy, to prevent progression.   

Personally, it is one of my major goals, because I think we do a pretty good job at preventing clots with available treatments. But I don’t think we do a very good job at preventing progression, mostly, because we don’t exactly understand what’s driving that. And so, I think until we develop that deeper understanding and really invest the time and effort in terms of learning which approaches can help prevent progression, we’re going to continue to have these questions.  

What Are Common Symptoms of DLBCL?

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What Are Common Symptoms of DLBCL? from Patient Empowerment Network on Vimeo.

What symptoms could diffuse large B-cell lymphoma (DLBCL)patients experience? Dr. Kami Maddocks defines DLBCL and explains the diagnosis, symptoms, sub-types and progression of the disease.

Dr. Kami Maddocks is a hematologist who specializes in treating patients with B-cell malignancies at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Maddocks.

See More From The Pro-Active DLBCL Patient Toolkit

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Transcript:

Katherine:

Now, let’s learn more about DLBCL. For those who may be newly diagnosed, what is it?  

Dr. Maddocks:

Diffuse large B-cell lymphoma is a type of non-Hodgkin’s lymphoma. So, this is considered a blood cancer. Lymphomas are a cancer of the lymphocyte, which is one of the types of blood cells that form your immune system. So, when you think about your nodes, these are part of the cells that help fight different types of infection. So, diffuse large B-cell lymphoma is one of the types of non-Hodgkin’s lymphomas, it’s aggressive, and it is considered an aggressive form of lymphoma. And it’s when you get a cancer of those lymph cells that often involved the lymph nodes but could also involve bone marrow, blood cells, other sites outside of the lymph nodes.  

Katherine:

Do we know what causes DLBCL?  

Dr. Maddocks:

For the most part, we don’t know what causes diffuse large B-cell lymphoma. So, most of the time, it’s going to arise with patients not having risk factors. We know that age is the most common risk factor with the median diagnosis of a patient in their 60s.  

Although, we also know that diffuse large B-cell lymphoma, why it’s more common to be diagnosed later in life, can occur across all the age spectrum. So, you see this in pediatric adolescents, young adults, and older adults. There are some causes. These represent more than minority of cases but certain viruses, including HIV virus, can be associated with the development of lymphoma. Certain other medical conditions, like rheumatologic conditions and some of the treatments for these, can be associated, and then, some chemical exposures. But in general, most of the time, we’re not going to have an identified cause.  

Katherine:

What are the symptoms?  

Dr. Maddocks:

They can look a little bit different for different patients. So, because this is often a cancer, most of the time there will be lymph node involvement. For some patients, they can actually feel or somebody will see a lymph node that grows. Most of the time, when this occurs, it’s going to be in the neck, under the armpits, or in the groin area.  

Patients can start to have symptoms from other sites, of those lymph nodes growing or disease so that they can get pain or shortness of breath. Or they can have what’s called B symptoms. So, B symptoms are inflammatory like symptoms from the lymphoma, and these include weight loss. So, a rapid change in weight for no reason. Night sweats. So, daily night sweats, we call them drenching night sweats. They wake up the patient, they soak their clothes, sometimes they soak the whole bed. And then, fatigue. So, extreme fatigue, not able to do your daily activities. And then, occasional people will have cyclical fevers.  

Katherine:

Are there different types of DLBCL?  

Dr. Maddocks:

So, in general, diffuse large B-cell lymphoma, there’s one major subtype. You can divide it into different pathological or molecular subtypes.   

So, where the cell develops lymphoma during the cell’s development, there are different chromosome abnormalities. So, there are different categorizations but in general, diffuse large B-cell lymphoma itself is considered – it’s treated, often, the same even with these different subtypes. So, there are different subtypes but in general, they’re all considered a form of diffuse large B-cell lymphoma.   

Katherine:

They’re under this umbrella of DLBCL.  

Dr. Maddocks:

Yeah. Yeah.   

Katherine:

Yeah.

Do patients usually get diagnosed after they experience some symptoms?  

Dr. Maddocks:

So, because this is an aggressive lymphoma, there are a lot of patients that will have symptoms with this, and that’s how they’ll present via either noticing the lymph nodes, having the B symptoms, or having pain, or other abnormalities from the lymphoma progressing.   

Occasionally, whereas indolent lymphoma is more commonly found of incidentally. Occasionally, that’ll be the case with these, but I would say a fair number of patients have some sort of symptom or something that brings them to medical attention.  

Katherine:

How does DLBCL progress?  

Dr. Maddocks:

So, they’re different, as far as there’s more aggressive and less aggressive. So, some patients can develop symptoms, really, over days to weeks. Whereas, some patients are more weeks to months.  

What Is the Patient’s Role in Their DLBCL Care?

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What Is the Patient’s Role in Their DLBCL Care? from Patient Empowerment Network on Vimeo.

How can patients engage in their DLBCL care? Expert Dr. Kami Maddocks explains how disease-specific education empowers patients, and stresses the importance of patients playing an active role in decisions.

Dr. Kami Maddocks is a hematologist who specializes in treating patients with B-cell malignancies at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Maddocks.

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Transcript:

Katherine:

Now, let’s learn more about DLBCL. For those who may be newly diagnosed, what is it?  

Dr. Maddocks:

Diffuse large B-cell lymphoma is a type of non-Hodgkin’s lymphoma. So, this is considered a blood cancer. Lymphomas are a cancer of the lymphocyte, which is one of the types of blood cells that form your immune system. So, when you think about your nodes, these are part of the cells that help fight different types of infection. So, diffuse large B-cell lymphoma is one of the types of non-Hodgkin’s lymphomas, it’s aggressive, and it is considered an aggressive form of lymphoma. And it’s when you get a cancer of those lymph cells that often involved the lymph nodes but could also involve bone marrow, blood cells, other sites outside of the lymph nodes.  

Katherine:

Do we know what causes DLBCL?   

Dr. Maddocks:

For the most part, we don’t know what causes diffuse large B-cell lymphoma. So, most of the time, it’s going to arise with patients not having risk factors. We know that age is the most common risk factor with the median diagnosis of a patient in their 60s.  

Although, we also know that diffuse large B-cell lymphoma, why it’s more common to be diagnosed later in life, can occur across all the age spectrum. So, you see this in pediatric adolescents, young adults, and older adults. There are some causes. These represent more than minority of cases but certain viruses, including HIV virus, can be associated with the development of lymphoma. Certain other medical conditions, like rheumatologic conditions and some of the treatments for these, can be associated, and then, some chemical exposures. But in general, most of the time, we’re not going to have an identified cause.  

Katherine:

What are the symptoms?  

Dr. Maddocks:

They can look a little bit different for different patients. So, because this is often a cancer, most of the time there will be lymph node involvement. For some patients, they can actually feel or somebody will see a lymph node that grows. Most of the time, when this occurs, it’s going to be in the neck, under the armpits, or in the groin area.  

Patients can start to have symptoms from other sites, of those lymph nodes growing or disease so that they can get pain or shortness of breath. Or they can have what’s called B symptoms. So, B symptoms are inflammatory like symptoms from the lymphoma, and these include weight loss. So, a rapid change in weight for no reason. Night sweats. So, daily night sweats, we call them drenching night sweats. They wake up the patient, they soak their clothes, sometimes they soak the whole bed. And then, fatigue. So, extreme fatigue, not able to do your daily activities. And then, occasional people will have cyclical fevers.  

Katherine:

Are there different types of DLBCL?  

Dr. Maddocks:

So, in general, diffuse large B-cell lymphoma, there’s one major subtype. You can divide it into different pathological or molecular subtypes.  

So, where the cell develops lymphoma during the cell’s development, there are different chromosome abnormalities. So, there are different categorizations but in general, diffuse large B-cell lymphoma itself is considered – it’s treated, often, the same even with these different subtypes. So, there are different subtypes but in general, they’re all considered a form of diffuse large B-cell lymphoma.  

Katherine:

They’re under this umbrella of DLBCL.  

Dr. Maddocks:

Yeah. Yeah.  

Katherine:

Yeah. Do patients usually get diagnosed after they experience some symptoms?  

Dr. Maddocks:

So, because this is an aggressive lymphoma, there are a lot of patients that will have symptoms with this, and that’s how they’ll present via either noticing the lymph nodes, having the B symptoms, or having pain, or other abnormalities from the lymphoma progressing.  

Occasionally, whereas indolent lymphoma is more commonly found of incidentally. Occasionally, that’ll be the case with these, but I would say a fair number of patients have some sort of symptom or something that brings them to medical attention.  

Katherine:

How does DLBCL progress?  

Dr. Maddocks:

So, they’re different, as far as there’s more aggressive and less aggressive. So, some patients can develop symptoms, really, over days to weeks. Whereas, some patients are more weeks to months.  

When Is It Time to Treat Waldenström Macroglobulinemia?

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When Is It Time to Treat Waldenström Macroglobulinemia? from Patient Empowerment Network on Vimeo.

Waldenström macroglobulinemia (WM) is a condition that may not require treatment right away. WM expert Dr. Jorge Castillo explains the watch-and-wait period and discusses factors that may indicate treatment is necessary.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

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Transcript:

Katherine:                  

Help us understand when it’s time to treat. Certain patients, as you said, don’t really need treatment right away because they’re asymptomatic. So, which patient type should begin to get treatment?

Dr. Castillo:               

That’s really the most important aspect of the discussion, I would say, because from my perspective – you know, I’ve been doing this for almost a decade, seeing probably 3,000, 4,000 patients with Waldenstrom’s in my career, I think one of the most important decisions is when to treat.

A number of our patients will be asymptomatic, and they will remain asymptomatic for years. So, really, treatment initiation in this scenario is not reasonable. Number one, we don’t cure the disease. Number two, patient have a long survival. I’m talking about 15, 20 years of survival in a large proportion of patients. So, a treatment that is going to last a year is not going to change a 20-year survival, so we don’t extend the survival of our patients in most cases.

Katherine:                  

Right. If a patient has been on watch and wait, how do you know when it’s time to begin therapy?

Dr. Castillo:               

Yeah, so essentially, when we see patients in whom we decide to monitor, right, watch and wait, which is monitor them, we follow them over time, and we see them sometimes every three months or every six months, and we get bloodwork.

We do bloodwork on those patients to look at the hemoglobin, just to see if there’s anemia or not, to look at the IgM to see if it gets too high or not. And if the IgM is too high, sometimes, we’ll have the patients have eye examinations on a yearly basis to make sure that there’s no changes in the vessels in the back of their eyes, in their retinas. That’s an indication of hyperviscosity. And every time we see them, not only do we look at the numbers, which I think is important, but we also look at the symptoms.

So, I classically ask my patients, “How’s your energy level, how well you’re doing, still able to do everything you want to do? Any numbness in your feet? Right? Any nosebleeds, any headaches, any blurred vision, right? Any lumps? So, I just go over this list of different symptoms that patients can experience. Are you having fevers? Are you having night sweats? Are you losing weight for no reason? Right? So, it’s a monitoring process.

Just to clarify further, for example, a patient can come to see me with anemia, and I know that Waldenstrom’s causes anemia, as I said before. But it is my duty as a doctor to make sure that there’s no other reason why the patient might be anemic. So, even though in the scenario, which is very likely that the disease is causing this problem, I still need to make sure that it is not something else driving this anemia for the patient, and then the anemia is severe enough. You know, some patients say, “Yeah, I’m a little tired, but I’m still able to do everything I want to do.”

So, really that’s a very minor process. And there are people who tell me, “You know what, I cannot play with my children anymore, right, because I’m so tired,” then that’s a different process. So, the severity of the symptom and how related to the disease it is, that combination is what really tells us who needs to be treated or not.

So, what I would say in terms of treatment timing for Waldenstrom’s patients, it’s not that you need treatment and then you don’t need it, and then you need it. It’s not like that. It’s more like you don’t need it; you don’t need it; and then it is reasonable to treat. And there is a period in which it’s reasonable to treat, and that period can last sometimes months to years. Some patients can decide to be treated a little earlier in the process with less symptoms. And some patients can decide to be treated a little bit later with more symptoms.

So, it has to do a lot with the patients, how they feel, how they’re tolerating the symptoms, how dangerous or potentially threatening those symptoms are. And that’s a conversation that it needs to take place between the doctor and the patient, understanding the patient’s preferences.

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.