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Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Treatment and Clinical Trials, RMC Video ND, RMC Video TC /by Kara Rayburn

Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal from Patient Empowerment Network on Vimeo.

What do renal medullary carcinoma (RMC) patients need to know about clinical trials? Expert Dr. Nizar Tannir explains the importance of clinical trial participation, what is examined in clinical trials, and advice for patients who are considering clinical trials.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…you should not be afraid of trials, you should embrace them and you should participate in them…the role of the physician is to explain the rationale and the potential benefits and potential toxicity, because everything has a price. Unfortunately, there are some drugs that could cause side effects, but hopefully it’ll be worthwhile to achieve to break the barrier of cure.”

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See More from [ACT]IVATED RMC

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A Renowned Expert Weighs in on the Future of Renal Medullary Carcinoma

Transcript:

Cora:

Why is clinical trial participation so critical in RMC, and what advice do you have for RMC patients considering a clinical trial?

Dr. Tannir:

Clinical trials are important in oncology in general, and specifically in tumors that are rare and aggressive. For decades now, I would say for the past 20 plus years since the initial reports of RMC were made back in the mid ’90s, I will recognize that RMC was a cancer that affects individuals who have sickle cell trait, chemotherapy has been the mainstay, and it’s still a reliable and good treatment to start with. But we can’t stop with just chemotherapy, we can’t just have chemotherapy. We need more effective drugs, we need more drugs, because, unfortunately, not every single patient with RMC will respond to chemotherapy like Herman did and be cured and alive and are living well 10 years, 11 years and beyond.

Patients may respond to treatment and has often happened, unfortunately, the resistance sets in so the cancer cells become resistant to the chemotherapy that you gave to the patient. And then the disease will start progressing again. So you need to think about other therapy. So while we have more than one chemotherapy regimen we can treat our patients with, we still need to identify relevant targets for RMC that we can develop new therapies. And this is where clinical trials become important. And so my activation tip is for patients with RMC to consider participating in clinical trials with the hope that we will bring to FDA approval, newer drugs, and not just chemotherapy. I can mention to you, Cora, that with the first trial we launched in RMC was in 2015 with a drug called tazemetostat (Tazverik).

We opened this trial. We launched this trial with this drug, which was oral, in many rare tumor types and I lobbied, I worked hard with the Epizyme, the company at the time, which was subsequently bought up by another company to have a cohort of patients with RMC to treat them with this drug. And people were skeptical that I will be able to recruit and enroll any patient on this trial. And I said, “I know if we have this trial, patients will come.” As the saying goes, you build it and they’ll come. We opened the trial. Within six months, I had nine patients enrolled within six months. Whereas in the past, we used to see one, two patients per year. In six months, we had nine patients enrolled in the trial. The trial, we finally finished the trial.

Unfortunately, the drug did not provide durable benefit to patients, although we saw dramatic responses that were brief lasting only weeks, but there were dramatic responses. So, but we cannot achieve success without having to go through failures. We cannot be discouraged by negative trials, by negative results or disappointing results or results that are gratifying, but for a short period of time and then the cancer progresses. So my activation tip is for patients and their loved ones to support clinical trials that are well thought out that bring the opportunity to patients with RMC and other cancers, the opportunity to test some novel therapies based on grounded in biology.

You really have to do the research first. You really have to identify relevant targets, and you develop these therapies against those targets to really be able to say, you know I believe this will work and it may not work, but we have to try it. And so my activation tip is trials…you should not be afraid of trials, you should embrace them and you should participate in them. But, of course, you know the role of the physician is to explain the rationale and the potential benefits and potential toxicity, because everything has a price. Unfortunately, there are some drugs that could cause side effects, but hopefully it’ll be worthwhile to achieve to break the barrier of cure.

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What Are Renal Medullary Carcinoma Noted Disparities?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Access and Affordability Archives, RMC Activated, RMC Activated Expert, RMC Programs, RMC Video AA /by Kara Rayburn

What Are Renal Medullary Carcinoma Noted Disparities? from Patient Empowerment Network on Vimeo.

What are the disparities seen in renal medullary carcinoma? Expert Dr. Nizar Tannir explains how grassroots movements are so important in rare diseases like renal medullary carcinoma and his hope for equitable policy change.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“My activation tip is work with your representatives in Congress with your local politicians and with different organizations to raise the decibel to try to make this happen and I hope it will happen in the near future.”

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Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

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Transcript:

Cora:

Dr. Tannir, what are the noted disparities seen in RMC and what are some of the actions being taken?

Dr. Tannir:

RMC affects predominantly African Americans in this country. Unfortunately when you say African American and healthcare, in the same sentence, there it is, there is healthcare disparity. Healthcare disparity is a fact we live in, is something I face all the time in our citizens who are minorities, people of color in this country, whether they’re African American or Hispanic or other citizens.

Unfortunately, they don’t have the same healthcare access to like other patients, like other individuals. So that right there is a healthcare disparity. We need to remove those barriers and that’s the only way we’re going to address healthcare disparities, is by making it not disparity anymore. And how you do that, you give healthcare access, equal healthcare access to those individuals, because those individuals want to live, people want to live, people want to take care of themself, of their bodies, their health, they want to live longer, they want to be cured if they have cancer. But we have to provide them the access to the best, be it the treatments that are available right now even clinical trials, even clinical trials of drugs that may not be FDA-approved, they should have access to those as well, they’re equal citizens in this country.

They have to have access. The same way I have access, if I got cancer, I have access to clinical trials at MD Anderson. A patient with RMC should have that same equal healthcare access. I hope that this, it takes a village, as they say, it takes a village for all of us to work together, it’s not going to happen overnight this is going to be grassroots like you, Cora, are doing, grassroots movement from the ground up. Healthcare policies will change only when all the citizens in this country realize and believe that healthcare is a right, it’s not a privilege, it is a right, it is a right. The most important right is health, life high, this is important so the only way we can achieve that is when we believe as a country, as citizens of this country, that we’re all equal, God has created us equal. We have to have access to healthcare. My activation tip is work with your representatives in Congress with your local politicians and with different organizations to raise the decibel to try to make this happen, and I hope it will happen in the near future.

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Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Treatment and Clinical Trials, RMC Video ND, RMC Video TC /by Kara Rayburn

Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) treatments are starting to expand, but where do things stand? Expert Dr. Nizar Tannir provides an update about current RMC treatment options and his perspective about RMC research and hope for emerging treatments.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…patients need to be well-informed and empowered, trust their physicians and work together to, on the road, to recovery and cure.”

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Advice for Newly Diagnosed Renal Medullary Carcinoma Patients

Transcript:

Cora:

Yes. How do you work with your RMC patients to make treatment decisions? What should RMC patients consider when deciding on treatments?

Dr. Tannir:

It’s always a partnership, Cora, this applies actually not just for RMC, not just between a physician, an oncologist like myself, and a patient with RMC. It is the partnership between every patient and every and their physician. They are treating oncologists, whether it’s RMC or any other kidney cancer type, or any cancer type, or any other health issue. It’s a partnership built on trust, built on knowledge and so the role of the physician is to explain to the patient their diagnosis, the prognosis, the treatment options, give them the facts. Patients need to be informed that’s why we have the informed consent when we offer a therapy. Informed consent is based on the physician or medical provider providing the information about the treatment, what benefits are, what potential complications or adverse events we call these. And the patient has to be aware of these things and they need to participate in their care.

And the decision-making is joint, it’s partnership. That’s the empowerment that we as physicians should give to our patients. They should be empowered in their care, empowered to know their disease, and they should know their disease very deeply. And only then that relationship is cemented through the trust, mutual trust, then the physician will offer the patient the treatment or treatments, there may be more than one treatment and it’s our role to go through these treatments and look at pros and cons. This treatment will offer you this, the treatment will offer you that. I think I can’t underscore more the importance of clinical trials. Clinical trials are important the treatment we are testing today may be experimental today, they may be the standard of care tomorrow.

So it’s important for individuals to see that participating in a clinical trial is not an experiment. Just we’re using subjects or human beings as guinea pigs it’s not, it is for their benefit because the results, the findings of the trials could directly or indirectly help those patients who participate in trials, but also help future patients. So participating in trials will not only help them, but help others after them. My activation tip is patients need to be well-informed and empowered, trust their physicians and work together to, on the road, to recovery and cure.

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What Renal Medullary Carcinoma Treatment Options Are Available?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Treatment and Clinical Trials, RMC Video ND, RMC Video TC /by Kara Rayburn

What Renal Medullary Carcinoma Treatment Options Are Available? from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) treatments are starting to expand, but where do things stand? Expert Dr. Nizar Tannir provides an update about current RMC treatment options and his perspective about RMC research and hope for emerging treatments.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…chemotherapy is good, but we hope to develop more effective therapies in the future…please engage, enroll, participate in clinical trials only through research. We can advance the field and ultimately conquer this devastating disease.“

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With RMC Being an Aggressive Cancer, What Is the Prognosis?

Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

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Transcript:

Cora:

What promising treatments are available for patients facing an RMC diagnosis?

Dr. Tannir:

Although RMC carries a guarded prognosis because of its aggressive nature and because of its clarity, we have been able to change this bleak outcome, changed prognosis over the past, I would say decade from back in the ’90s and 2000s early on, patients unfortunately with RMC, unfortunately lived only few months because people didn’t know how to treat it. And it requires the knowledge to build the knowledge, and that’s important infrastructure that really builds the program, that it’s the little things that matter that ultimately in aggregate improves the survival. So chemotherapy is available everywhere, people can get chemotherapy in even small cities, hospitals that have chemotherapy that treat patients with other common cancers like breast cancer and lung cancer and colon cancer.

Chemotherapy is available, but it’s not just having chemotherapy on the shelf and the pharmacy. So there are urologists surgeons that operate on patients with cancer, good hospitals, but it’s not enough and it’s not, you need to put all those things together. It’s like a board, with pieces of the puzzle. You just have to really have the knowledge to put these pieces together, to know when to operate, when not to operate, to know what chemotherapy to give and when to give it. And there are advances. We are making those advances. But chemotherapy remains the mainstay for now in 2023 and in 2022. And prior, for the last several years, as long as I’ve been at MD Anderson, we came up with the first-line chemotherapy regimen.

That has been our first-line backbone for treatment of patients with RMC and have been successful in it. Unfortunately, not every patient responds to it, but a good number of patients will respond to it, and we can build on that chemotherapy with further chemotherapy. And we have some newer therapies that we are developing. We have some clinical trials. I am very hopeful and optimistic about the future, but chemotherapy remains the mainstay for first line therapy. So a patient with RMC needs to start chemotherapy, there are two drugs that we’ve used and I’ve used them on Herman as you know, Taxol or paclitaxel, and carboplatin. Unfortunately, not every patient with RMC is going to benefit from this for a long time, but this will be the start.

I think it’s very important for a patient with RMC that has specially if they have spread of their cancer outside the kidney, to not have the surgery up front, that’s not wise it is important to start with the chemotherapy only after the patient achieves an excellent response to the chemotherapy where you controlled the disease in these organs or other sites outside the kidney, then one can proceed and remove the kidney as we did with Herman, we gave him the chemotherapy first, he had a fantastic response. We were able to remove his right kidney, and there was a very minute focus of residual cancer in the right kidney, I remember, but even then, we had to go back and give him chemotherapy afterwards.

But beyond chemotherapy, we have newer therapies that we are exploring. Dr. Msaouel in my group on my team has been leading some of these trials, and we believe that we have some key targets that we have identified that are relevant for RMC that we are developing novel, we hope more effective therapies in the future, only through clinical trials. We are going to make progress. So my activation tip is chemotherapy is good, but we hope to develop more effective therapies in the future. So my activation tip is please engage, enroll, participate in clinical trials only through research. We can advance the field and ultimately conquer this devastating disease.

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How Do You Explain RMC to Newly Diagnosed Patients and Families?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Video ND /by Kara Rayburn

How Do You Explain RMC to Newly Diagnosed Patients and Families? from Patient Empowerment Network on Vimeo.

What’s most vital for renal medullary carcinoma (RMC) patients to know? Expert Dr. Nizar Tannir explains the urgency of RMC diagnosis and shares advice for patients and families to find the best possible care.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…tell the patients to seek care if or when you have the diagnosis of RMC at the best place, hopefully you’ll be able to have access to an institution, an academic institution, or a hospital that has the expertise, that has the experts in medical oncology and in surgery and radiology and all the nursing staff, the support staff to get the best care…Time is of the essence.”

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Transcript:

Cora:

Dr. Tannir, how do you explain RMC to your newly diagnosed patients and families?

Dr. Tannir:

I explain RMC to my patients and their families as it’s an aggressive cancer that afflicts young people. And, of course, by the time they come to me, they know already they were sent with that diagnosis. Often the diagnosis has been made before they come, but if they come with a suspicion, we proceed and do the workup, the biopsy and prove that this is what it is. You explain it to them as an aggressive cancer that requires urgent treatment. This is where urgency comes in. RMC is not a diagnosis that you can sit on for months and delay the initiation of effective important therapy so you explain it to them as a cancer, that in the vast majority of patients, by the time it’s diagnosed, it has already spread outside the kidney to organs, to lungs, or bone or liver, lymph nodes invariably, the vast majority of these patients will have metastasis or spread of the cancer to lymph nodes.

So you have to be honest with the patient and you tell them it is advanced. And the treatment would be after we establish the diagnosis with a biopsy to initiate our first-line therapy. For patients with RMC, unlike common types of kidney cancer, the most common is clear cell, where the treatment there is totally different, it’s not chemotherapy. For RMC, it is chemotherapy.

So my activation tip is, tell the patients to seek care if or when you have the diagnosis of RMC at the best place, hopefully you’ll be able to have access to an institution, an academic institution, or a hospital that has the expertise, that has the experts in medical oncology and in surgery and radiology and all the nursing staff, the support staff to get the best care. That’s really the activation tip once a patient is faced with the diagnosis of RMC, but it is cancer arising in the kidney and it’s aggressive, and, but there is hope and we have a plan, and the treatment plan should be initiated on an urgent basis, there’s no time to be wasted when a diagnosis of RMC is made. Time is of the essence, that’s my activation tip. Time is of the essence and valuable time, unfortunately, can sometimes be wasted, trying to get to the right place, especially if the patient doesn’t have insurance. I think this is really the urgency that patients and their loved ones have to really be aware of.

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What Do Renal Medullary Carcinoma Patients Have in Common?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Video ND /by Kara Rayburn

What Do Renal Medullary Carcinoma Patients Have in Common? from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) patients share some common traits, but what are they? Expert Dr. Nizar Tannir explains common traits seen in RMC patients and how families and patient advocates can work toward improved care for all RMC patients.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…work with your congressmen and congresswomen, work with patient advocacy programs, raise awareness. Let’s get everybody the healthcare insurance that they deserve, like members of Congress so that nobody is turned away from going to the best facility that can help them.”

Download Guide | Descargar Guía

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Transcript:

Cora:

What do patients living with renal medullary carcinoma have in common?

Dr. Tannir:

Patients living with renal medullary carcinoma have supportive families in my 22 years at MD Anderson treating patients with kidney cancer. And since we were involved with establishing an RMC program for research education and clinical trials treatment for patient with RMC, what I have noticed socially is these individuals have wonderful, wonderful family support. I can’t think of one patient with RMC and this has nothing to do to medicine right now, or about medical facts. I’m talking about the social fabric African Americans, because these are the people, these are the subjects who have RMC. The 95 percent of patients with RMC are African Americans in this country. People of the Black race. I am so impressed with their family support, not one individual came to me with…if it’s a teenager or even a young person without their mother with them, I am so impressed with that.

So they’re not alone that’s really what impressed me, what’s common about these RMC, patients with RMC is the love and the family support that these individuals, their mothers go a long way out of their way, they make it their mission to help their child and that child could be 18 or 28 or 30, and the mother is there helping them. They come from everywhere seeking the best for their child and that applies to siblings as well.

And, Cora, you’ve been, again, the support for Herman along his journey, I can’t think of any sibling who has done what you have done for Herman. So I can’t escape, but say, Black people have families who love them, they’re not alone and they support them, they’re able to get them to the top of the mountain, to the top of the mountain to the top of mountain to get them through the desert and the marsh and the oceans to get them to be cured if there is a cure that can be achieved.

And if not, they want to make sure they give them the best chance to survive. So that’s what I have seen in patients that’s common to patients with RMC. Unfortunately, there is another side of that story that is common to patients with RMC because they are young and many of them are either students or they’re working at different jobs, they don’t have…many of them do not have health insurance unless they serve in the military.

And that’s what’s been frustrating, we can discuss this later that’s been frustrating to see that young individuals with RMC want to come to MD Anderson, want to go to the moon if they can get the cure there, but they don’t have the health insurance that can give them access to the best place. And in RMC, it is MD Anderson. So I hope this will change. My activation tip is work with your congressmen and congresswomen, work with patient advocacy programs, raise awareness. Let’s get everybody the healthcare insurance that they deserve, like members of Congress so that nobody is turned away from going to the best facility that can help them. I hope before I retire that I will see this achieved. Because that’s really, I think if the number one on my list of things to do is this…is have equal healthcare access to everybody with an RMC diagnosis, so that they get the best care they deserve.

This is about, you’re talking about diversity, equity, inclusion. This is at the core, at the heart of what equity is. How can we be equal in the society if we don’t provide equal healthcare access to all our citizens, especially the young, especially the young the vulnerable, these people serve their country. They deserve to have the best healthcare or equal healthcare provision and like members of Congress, like the rest of us.

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Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Video ND /by Kara Rayburn

Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection? from Patient Empowerment Network on Vimeo.

Is there a link between renal medullary carcinoma (RMC) and exercise? Expert Dr. Nizar Tannir explains the specific type of exercise that has been a risk factor for certain patient types and shares patient advice to ensure their optimal health.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…stay well-hydrated. Get the information you need about the benefits of exercise. We do not want to say, for individuals with sickle cell trait, to not exercise at all, because there are advantages and benefits to staying physically active. But again, avoid the extreme, strenuous exercises.”

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What Are Renal Medullary Carcinoma Noted Disparities?

What Do Renal Medullary Carcinoma Patients Have in Common?

Advice for Newly Diagnosed Renal Medullary Carcinoma Patients

Transcript:

Cora:

Dr. Tannir, is there a connection between intensive exercise and RMC? What do we know about the two?

Dr. Tannir:

Well, we made an observation many years ago and this has been strengthened with, data provided later on by Dr. Msaouel, my colleague and team, our researchers. We made the initial observation that patients with RMC who came to us while the vast majority were in their 20s, somewhere in their teens, somewhere in their 30s and 40s, and rarely older than 50, we observed that many of these young individuals were either athletes or served in the military.

So that really, raised the question, why is there a link between being athletic, serving in the military, of course, we know bootcamp, we know the intense, physical training that our men and women in the military go through, and Dr. Msaouel and his team and the research team we assemble to tackle this, through looking at clinical data of patients as well as going to the lab and doing experiments on mice, we came up with a link, a sort of a modifiable risk, if you will, that could be a factor in…contributing factor in addition to the sickle cell trait to that leads or, contributes to the diagnosis to the pathogenesis of RMC. But this is still, I would say, work in progress.

I do not want people to take exercise equate again, as we said, equate RMC and sickle cell trait and do not want to equate exercise with development of RMC. But my message is, as is needed, as is well-known for patients with sickle cell trait in general, you have patients with, individuals with sickle cell trait have to be careful, intense, strenuous exercise, can lead to health problems unrelated to RMC health problems. So it is important in addition, as they do, as we recommend for individuals with sickle cell trait, to stay well-hydrated, to avoid extreme intense exercise.

Again, also, it is an advice that is should be headed for an individual with sickle cell trait. Well, good hydration, avoid strenuous, extreme intense exercise. But again, the activation tip here is stay well-hydrated. Get the information you need about the benefits of exercise. We do not want to say, for individuals with sickle cell trait, to not exercise at all, because there are advantages and benefits to staying physically active. But again, avoid the extreme, strenuous exercises.

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How Can Patients With Sickle Cell Trait Lessen RMC Risk?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Video ND /by Kara Rayburn

How Can Patients With Sickle Cell Trait Lessen RMC Risk? from Patient Empowerment Network on Vimeo.

How can renal medullary carcinoma (RMC) risk be decreased by those with sickle cell trait? Expert Dr. Nizar Tannir explains the frequency of RMC in sickle cell trait patients and advice for patients to decrease their RMC risk.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…seek information, seek facts, surround yourself with people, and get the information, get the knowledge. You can get it from several sources out there.”

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Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection

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Transcript:

Cora:

For some patients watching, one question might be, I have sickle cell trait. How can I minimize my risk of getting RMC?

Dr. Tannir:

RMC is a rare disease, it’s a rare cancer, I do not want individuals, subjects who have sickle cell trait to panic that they are doomed, they’re going to have RMC. The vast, vast, vast majority of individuals, of citizen subjects who have sickle cell trait will not develop RMC. So I don’t want to equate the two. I do not want to equate having sickle cell trait with RMC and scare everyone. The millions of our citizens in this country and the millions of citizens in Sub-Saharan Africa, in Greece, in Brazil, everywhere in, there are people with sickle cell trait to scare them that they are destined to have RMC.

But it is important to be aware of the link and to be vigilant and to be diligent and to seek information. And I think having educational programs and by what you do also yourself, or what you’ve done, through your RMC Inc. Support Group, that information is incredible, is valuable. And I think my activation tip for individuals is seek information, seek facts, surround yourself with people, and get the information, get the knowledge. You can get it from several sources out there.

Obviously, you [Patient Empowerment Network] have been a beacon of hope, Cora, for so many, who came to you, asking you for information, for guidance, and I hope you continue to do that, which you made it your mission after Herman, hopefully now is cured, from RMC this month April is a month that in 2012, I had an email from Herman, April 12th, 2012 I remember in April, 2012 and here we are 11 years later. That’s the hope that patients with RMC and their caregivers should have, should know about that there is hope. And Herman who had stage IV RMC is alive 11 years later, there is hope, and it’s cured.

Cora:

Dr. Tannir, are patients living with sickle cell disease likely to develop RMC?

Dr. Tannir:

To be honest with you, in 22 years at MD Anderson, I have not seen a patient with sickle cell disease who came to me, had RMC. It could happen, theoretically it could happen, but sickle cell disease is so rare compared to sickle cell trait is much, much less common. But I have not seen it. I have seen one or two patients who had RMC and had other sickle cell hemoglobinopathy, but not sickle cell disease. I think again, the vast, vast majority of patients have sickle cell trait and not sickle cell disease, it’s just a matter of numbers.

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With RMC Being an Aggressive Cancer, What Is the Prognosis?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Video ND /by Kara Rayburn

With RMC Being an Aggressive Cancer, What Is the Prognosis from Patient Empowerment Network on Vimeo.

What is the prognosis for renal medullary carcinoma (RMC) patients? Expert Dr. Nizar Tannir explains RMC prognosis and how patients and healthcare providers can work together to ensure their best care and more treatment options in the future.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…never, ever give up. Get the facts, seek care at the hands of the experts, and we’re here to help. And there is hope.”

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Transcript:

Cora:

Sometimes searching online, you see statistics, and they look extremely grim. What is the prognosis for RMC?

Dr. Tannir:

RMC is a very aggressive type of cancer. And it is, unfortunately, the most aggressive kidney cancer type. Whereas the most common type of kidney cancer we see and treat in the clinic, in the hospital is clear cell. And that type of cancer has many treatment options. Some of them have been FDA-approved, and it’s a common type of cancer where we can do large clinical trials that lead to new therapies. RMC, unfortunately, because of its rarity, because of the difficulty of doing large trials we still do not have all the therapies that we would like to test as we test in other more common types of kidney cancer.

So far, the diagnosis carries a guarded prognosis because of the aggressive nature of RMC. But as I tell my patients with RMC, and you know this, Cora, when I met Herman and patients before Herman and after Herman. I tell them we have to be frank and honest with the patients. They have to be aware, they have to be engaged and to get them engaged, to get them to be trusting of the provider, physician, and the institution, you have to level with them and look them in the eye and share with them that the prognosis is guarded. But there is hope.

And I think I always start my message before they leave the clinic, before I leave their hospital room, if I have seen them in the hospital, is that it’s a difficult cancer. It’s an aggressive cancer, but we’re in this together and there is hope and we have a plan. And I think we can’t separate the two. We can’t, yes, it is aggressive, the prognosis is guarded, but there is hope and you have to give them a plan. So I think once you establish that relationship with the patient, then they trust you and they will do whatever it takes for them to get well. You get them on the road to recovery and hopefully cure.

But it starts with hope. We can’t just say it is guarded prognosis, bleak prognosis, poor prognosis, and stop there. Yes, it is aggressive cancer. So my activation tip here is never, ever give up. Get the facts, seek care at the hands of the experts, and we’re here to help. And there is hope.

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What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Video ND /by Kara Rayburn

What Are the Challenges of Diagnosing Renal Medullary Carcinoma? from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) diagnosis may sometimes run into changes, but what are they? Expert Dr. Nizar Tannir explains what healthcare providers examine in RMC diagnosis, diagnosis challenges that can arise, and advice to patients to ensure they receive standard testing.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…make sure that they…with that suspicion of having a mass in the kidney, blood in the urine symptoms, et cetera, to if they have not already known about their sickle cell trait status, to really have the test, which we call hemoglobin electrophoresis.”

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Transcript:

Cora:

What are the challenges with diagnosing RMC?

Dr. Tannir:

RMC is a rare tumor and it requires a special stain as well as the knowledge the clinical knowledge that comes with it. So to make the diagnosis of RMC, we typically get a biopsy of the mass in the kidney and/or a metastatic site, a site that the cancer has spread to, let’s say the lymph node. And then the pathologist examines this material, the specimen under the microscope, and the diagnosis is confirmed when the pathologist reads that the tumor is poorly differentiated, because that’s what RMC looks like under the microscope and is described by the pathologist as poorly differentiated adenocarcinoma. But the specific strain that clenches the diagnosis is called I-N-I 1.

INI1 and that is negative or worse. So when we see poorly differentiated carcinoma from a lymph node or a biopsy of a kidney mass, and then we have to link it with the history. And it’s important to ask then the subject, the patient, if they have sickle cell trait or if they’re aware that they have some sickle cell hemoglobinopathy. And if they do have sickle cell trait or another sickle cell hemoglobinopathy with that finding and the biopsy of poorly differentiated carcinoma, INI1-negative, that’s then it confirms the diagnosis of RMC. My activation tip is for the subject to make sure that they…with that suspicion of having a mass in the kidney, blood in the urine symptoms, et cetera, to if they have not already known about their sickle cell trait status, to really have the test, which we call hemoglobin electrophoresis. So that’s actually an activation tip for the provider when they face a patient with suspected diagnosis of RMC. If that information is not already known is to order the hemoglobin electrophoresis, which will then tell them that the patient, the individual has sickle cell trait or not. So, I think it requires awareness by both the individual, the subject as well as the healthcare provider.

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How Is Renal Medullary Carcinoma Diagnosed?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Video ND /by Kara Rayburn

How Is Renal Medullary Carcinoma Diagnosed? from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) diagnosis involves testing that patients may need to follow up on. Expert Dr. Nizar Tannir explains common RMC symptoms, typical imaging tests that are involved, and advice to patients to be proactive to ensure their best care.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…follow up after they have that imaging study…I would like patients to be aware and to be informed of what the symptoms mean. And that warning that blood in the urine or pain needs to be followed up and should not be dismissed or assumed that this is an infection or a stone that passed and you’re young, you don’t have to worry about cancer. They need to really follow up if that facility, that physician did not order the test, they need to follow up with their personal family physician and obtain those tests.“

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Transcript:

Cora:

Given how rare RMC is, we know many people have a long road to diagnosis, like my brother Herman, which can cause tremendous stress. How is renal medullary carcinoma diagnosed?

Dr. Tannir:

Renal medullary carcinoma is diagnosed by imaging. Symptoms typically include pain, blood in the urine, and, of course, if the cancer has spread to organs, cough, fever, weight loss…so the diagnosis is made by imaging first. And typically this is done at a facility, hospital, clinic or emergency room, with an ultrasound or a CAT scan or an MRI, which typically shows a mass in one of the kidneys. Renal medullary carcinoma arises more commonly in the right kidney than the left kidney and three-quarters of the time it arises in the right kidney. So, but it can arise in the left kidney. So once there is a mass in the kidney, that obviously needs to lead to a biopsy.

And ultimately the diagnosis of RMC is made by obtaining a piece of that tumor, whether it’s from the mass in one of the two kidneys or a biopsy of a site that the cancer has spread to. So my activation tip is for a patient who has these symptoms and they seek medical advice at a hospital or a clinic or emergency room, is to follow up after they have that imaging study. Occasionally the facility may report the findings on the CAT scan, let’s say, but patients may not get that report; and, unfortunately, this may not be followed later with a phone call to the patient or family to alert them about the findings. So they need to…

Patients need to be proactive and participate in their care by getting the report, by finding out, by following up what showed up on the CAT scan or ultrasound or MRI, and then follow up further with a facility that is specialist in this type of disease. So my activation tip is be involved, be engaged, be proactive, follow up after you had a test. And if you..if the patient goes to a facility and they just get dismissed without doing the test, because unfortunately I’ve seen it in my practice time and again, where a patient goes to a facility complaining of blood in the urine or pain, and they’re treated with antibiotics and they’re told that they have an infection and the patient doesn’t follow up and they haven’t done an imaging study, a CAT scan or an MRI or ultrasound.

So I think it is important, I would like patients to be aware and to be informed of what the symptoms mean. And that warning that blood in the urine or pain needs to be followed up and should not be dismissed or assumed that this is an infection or a stone that passed and you’re young, you don’t have to worry about cancer. They need to really follow up if that facility, that physician did not order the test, they need to follow up with their personal family physician and obtain those tests. So that’s really my activation tip for patients.

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What Are the Symptoms of Renal Medullary Carcinoma?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Video ND /by Kara Rayburn

What Are the Symptoms of Renal Medullary Carcinoma? from Patient Empowerment Network on Vimeo.

What renal medullary carcinoma (RMC) symptoms do high-risk patients need to be aware of? Respected expert Dr. Nizar Tannir shares common symptoms that can signal RMC and advice for patients to help ensure they receive urgent care when needed.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…if an individual who has sickle cell trait sees blood in the urine or they have flank pain, that those are warning signs, they need to seek medical attention, they need to contact their physician or go to a local emergency room or healthcare facility, and be checked. They can start with having an ultrasound or a CAT scan to really evaluate the kidneys, to look at the kidneys.”

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Transcript:

Cora:

For those who may be considered high-risk, what are the symptoms of renal medullary carcinoma?

Dr. Tannir:

RMC, is the most aggressive type of kidney cancer so as any kidney cancer, the symptoms relate to the tumor in the kidney, so there will be blood in the urine, that’s one symptom another symptom is pain, flank pain or abdominal pain, belly pain, those are the symptoms related to the, these are local symptoms related the finding of the tumor in the kidney, but if there is a spread of the cancer and RMC, the reason it is one of the most aggressive cancers any person can get, and the most aggressive kidney cancer type is because of its propensity to spread to organs, and, of course, if there is a spread of the cancer or RMC to organs, there will be symptoms related to the spread of the cancer to these organs, for example, if they cancer spread to the lungs, the patient or the subject, we have cough or shortness of breath, or chest pain, if it spreads to bone they have bone pain, they may have weight loss and fever, and these are called constitutional symptoms.

So fatigue, so these are symptoms related to advanced cancer as it is with any advanced cancer, but specific local symptoms related to RMC would be flank pain and or blood in the urine. These should be warning signs. So my activation tip is if an individual who has sickle cell trait sees blood in the urine or they have flank pain, that those are warning signs, they need to seek medical attention, they need to contact their physician or go to a local emergency room or healthcare facility, and be checked. They can start with having an ultrasound or a CAT scan to really evaluate the kidneys, to look at the kidneys. So this is an important activation tip for individuals who see, who experience or encounter any of those symptoms I just mentioned.

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What Is Renal Medullary Carcinoma?

May 16, 2023/in Kidney Cancer, Renal Medullary Carcinoma (RMC), RMC Activated, RMC Activated Expert, RMC Newly Diagosed, RMC Programs, RMC Video ND /by Kara Rayburn

What Is Renal Medullary Carcinoma? from Patient Empowerment Network on Vimeo.

How is renal medullary carcinoma (RMC) defined? Expert Dr. Nizar Tannir explains RMC, who is most often impacted, and the risk factors for developing RMC.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“for individuals who have sickle cell trait, first is to not panic, please. Sickle cell trait is very common as we know, at least 3 million in the United States have that. Vast majority of patients will not develop RMC. So people with sickle cell trait should not panic that they will…they are destined to develop RMC, because only very, very few will develop it.”

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See More from [ACT]IVATED RMC

Related Resources:

What Are the Symptoms of Renal Medullary Carcinoma?

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What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

Transcript:

Cora:

What exactly is renal medullary carcinoma? And is this disease exclusive to those with sickle cell trait?

Dr. Tannir:

Renal medullary carcinoma is the most aggressive type of kidney cancer and it afflicts young people who are African American in the United States, and the vast majority of these patients or these individuals, have sickle cell trait. But the reason the vast, and I would say 95 percent of subjects or patients who have RMC have sickle cell trait, is because sickle cell trait is much, much more common than sickle cell disease. And so statistically-speaking, sickle cell trait is much more common than we see, the vast majority of patients with RMC have sickle cell trait. So sickle cell trait…but in general, a broader sickle cell hemoglobinopathy is the most important risk factor for developing RMC. That’s the link, the most important link between the renal medullary carcinoma. That most aggressive kidney cancer type and sickle cell hemoglobinopathy.

There is a close type of kidney cancer where individuals will have similar tumor type. Aggressive, but they don’t have the sickle cell trait or other sickle cell hemoglobinopathies and that entity is called renal cell carcinoma, unclassified with medullary phenotype. Medullary phenotype is the resemblance with the RMC. My activation tip for individuals who have sickle cell trait, first is to not panic, please. Sickle cell trait is very common as we know, at least 3 million in the United States have that. Vast majority of patients will not develop RMC. So people with sickle cell trait should not panic that they will…they are destined to develop RMC, because only very, very few will develop it. So, I think it’s important to be aware of that link of RMC and sickle cell trait but not to really make it, and worry every day that this is…that they’re doomed.

I want people to really not panic and understand the link and have the awareness, and if they haven’t been tested for sickle cell trait, they should be tested. And I think nowadays all hospitals test the newborns for sickle cell trait, but it should not be a scare for people who have it already.