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

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A Renowned Expert Weighs in on the Future of Renal Medullary Carcinoma from Patient Empowerment Network on Vimeo.

What does the future of renal medullary carcinoma (RMC) care look like? Expert Dr. Nizar Tannir shares his perspective on the progression of RMC care, issues that still need advocacy, and his hopes for 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

“So, my hope and my plea is for all of us to work together to realize this dream that I hope I will see before I die and before I retire, that RMC deserves the support, not only RMC, but all aggressive, rare tumors require and deserve the support from funding and equal healthcare access.”

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 Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

Transcript:

Cora:

Dr. Tannir, you’ve dedicated your life to patients like my brother Herman, and we are so grateful for your genius and that of your colleagues, what is your hope for the future of RMC?

Dr. Tannir:

Cora, it’s been a privilege, an honor to have been with Herman and you on his journey from April 2012 and today, April, we are in April 2023, 11 years. He came with stage IV, and it took several months trying to get to a place that will take his symptoms and his diagnosis, seriously, get to the bottom of it and initiate therapy urgently. I am so happy for the outcome that Herman has achieved with your support, I could not think of how he could have done it without you on his side. You have dedicated, in fact, I know you have three sons, you’ve raised three wonderful young men, but you had Herman always.

So my hope is Herman’s success story. Herman triumph over RMC, will not be just one singular story that we talk about, but that story, I hope will be the common story we will tell about other patients with RMC. It will require research. It will require funding for the research, it’ll require raising awareness. It’ll require working with our policy makers, our congress, members of Congress and administration to open the gates, remove the barriers for patients with RMC, who are in this country, who are U.S. citizens, to allow them the care that members of Congress get that I get and I can get at MD Anderson any time. I think it is important, it’s not just important to have the tools, the scientific tools, the research tools, but also if those tools, if those clinical trials are not made available to people with RMC who need it in every city and town in the United States, well, how good our tools are if they can be only offered to only a few.

So, my hope and my plea is for all of us to work together to realize this dream that I hope I will see before I die and before I retire, that RMC deserves the support, not only RMC, but all aggressive, rare tumors require and deserve the support from funding and equal healthcare access. We really need to remove those disparity barriers. But from the scientific research and medical standpoint, I really see that we have seen a sea of change over the past 10 years and more so over the past five, six years. We are confident that we can, we can with a red pen mark, cross that RMC I hope in the next few years.

I know we can do it, there has been, So much excitement about RMC, whereas 10 years ago when Herman was diagnosed, not too many people were excited or interested or knew about RMC and what to do, now many, I can say many investigators in the U.S. and in Europe and other places are interested. They’re doing research. They’re applying for grants on RMC. So I am optimistic, I am glad. I look back and I see that all that hard work, and I think Herman is a beacon, a bright light in this dark field that has been dark field RMC, that light that has shone it was shining, and you’re helping there to lead to improvement. I can tell you, Cora, that patients with RMC now have a much better chance of surviving many years compared to years ago when they only had a few months to live. Now people are living two, three, four, five, and seven years, and 10 years and longer. So progress has been made, but there is more…more progress to achieve towards the cure.

I am confident that we will conquer RMC in the future. It takes a village. It takes the world to do it, and I am happy to see that we have made that progress. So thank you for all the support you provided to all those patients. Not just your brother, but all these people who contacted you to get guidance and wisdom from you and for sending many of those my way and to MD Anderson. So it’s my privilege and honor to have been at MD Anderson in this field to be able to have helped your brother and help other patients with RMC together, we will do it, we will conquer RMC. 

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Advice for Newly Diagnosed Renal Medullary Carcinoma Patients

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

What renal medullary carcinoma (RMC) advice should patients know about? Expert Dr. Nizar Tannir shares advice about seeking RMC information and ways to help maintain health and things for RMC patients to avoid.

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.

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“…get the facts, get the right information, right facts, medical facts from reliable sources…get the rest they need, they should avoid strenuous, extreme intense exercise. They should eat healthy food well-balanced food, stay well-hydrated, seek the care at the best place they can have access to, and keep the hope alive…do not panic. There is hope.”

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 Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

Transcript:

Cora:

Dr. Tannir, what do you advise your newly diagnosed RMC patients and their care partners to not do?

Dr. Tannir:

The main message I have for patients with RMC and their caregivers partners is to not panic and important my advice is to tell them to get the facts, get the right information, right facts, medical facts from reliable sources, because there is a lot of stuff on social media that some of it may not be accurate. And so in terms of what they should not do other than they should not panic I think they should support their loved one in their journey as you supported Herman. They should get the rest they need, they should avoid strenuous, extreme intense exercise. They should eat healthy food well-balanced food, stay well-hydrated, seek the care at the best place they can have access to, and keep the hope alive. That’s my activation tip. Do not panic, do not panic, there is hope. 

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Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?

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Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know? from Patient Empowerment Network on Vimeo.

What is known about the renal medullary carcinoma (RMC) biomarker called CA-125? Expert Dr. Nizar Tannir explains how the CA-125 biomarker has been analyzed and further studies of the biomarker used along with other RMC 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

“…another valuable information to have, but it has to be interpreted in the context of other things in the context of how the patient is doing, whether they have symptoms that are improving or getting worse, and imaging studies. So all of this has to be incorporated, integrated together as one package and not just look at it individually and make decisions, right, only based on that. So it’s a good tool, it’s something to use, and we are learning more about it, and pretty soon, hopefully we will publish our results about that.”

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

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 What Renal Medullary Carcinoma Treatment Options Are Available?

What Renal Medullary Carcinoma Treatment Options Are Available?

 Should Families of Renal Medullary Carcinoma Patients Undergo Genetic Testing?

Should Families of Renal Medullary Carcinoma Patients Undergo Genetic Testing?

Transcript:

Cora:

Dr. Tannir, there is news about monitoring levels of the biomarker CA-125 and renal medullary carcinoma and how it may help predict disease development. What do we know about CA-125 as a biomarker in renal medullary carcinoma?

Dr. Tannir:  

The CA-125 biomarker has been established as a good serological marker that you test in serum in women with ovarian cancer. So in women with ovarian cancer or suspected to have ovarian cancer, that blood test can be very valuable and elevated blood level of CA-125 in women with suspected ovarian cancer or established already women already diagnosed with ovarian cancer can provide information about the activity of the disease and response to therapy. So when a patient with ovarian cancer, for example, a response has, say, a debulking surgery and then the blood test is drawn, is tested after surgery the blood level will go down. You give them chemotherapy and the blood level goes down indicating that they’re responding. If they achieve a complete remission, complete response that CA-125 level could go down to undetectable level or normal range level as physiologic and women who don’t have ovarian cancer. Likewise, we use it in ovarian cancer to see if it’s rising, that the patient could be developing a recurrence of that disease. So it’s been very helpful in that regard.

And actually the pioneer this researcher, the physician scientist who led the initial work with CA-125 as a biomarker in cancer, was Dr. Robert Bast from MD Anderson. Now recently Dr. Msaouel and our team at MD Anderson looked at a battery, a panel of serology to really see if one of them is associated or could be linked to RMC and among a battery, a panel of several of these serological biomarkers. We found that CA-125 actually is a valuable blood test that we use to monitor RMC, not just in women like ovarian cancer, women with ovarian cancer, but in men and women with RMC the CA-125 could be valuable. Now, it’s not as they say panacea, it’s not like it’s if a patient has…the patient could have high tumor burden with obvious disease when you do CAT scans and MRIs and PET scans and other imaging studies.

But CA-125 may not be elevated but in many patients it can track the disease response to therapy that you are treating the patients with. And it could be valuable in that sense. But more recently we found that this could be also a relevant or a potentially relevant and important target to use therapy against RMC with that. So we are developing, Dr. Msaouel is preparing and hopefully we will launch this trial before the end of the year where we are using novel therapy based on that link based on that CA-125, whether this therapy will be more effective than chemotherapy, time will tell. So my activation tip on this is it’s good information to have, I encourage providers who treat patients with RMC at other institutions to test draw the blood order this test on their patients and see if in their patients it’ll be valuable.

It’ll be helpful to help them to track the disease. So that’s my activation tip is another valuable information to have, but it has to be interpreted in the context of other things in the context of how the patient is doing, whether they have symptoms that are improving or getting worse, and imaging studies. So all of this has to be incorporated, integrated together as one package and not just look at it individually and make decisions, right, only based on that. So it’s a good tool, it’s something to use, and we are learning more about it, and pretty soon, hopefully we will publish our results about that. 

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Should Families of Renal Medullary Carcinoma Patients Undergo Genetic Testing?

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Should Families of Renal Medullary Carcinoma Patients Undergo Genetic Testing? from Patient Empowerment Network on Vimeo.

Does renal medullary carcinoma (RMC) warrant genetic testing for any relatives of patients? Expert Dr. Nizar Tannir explains the frequency of RMC in siblings and shares advice for blood relatives of 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

“…please do not panic. Hopefully, you will live a normal life, and you will not have RMC, but you should be diligent.”

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

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

 Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

 Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?

Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?

Transcript:

Cora:

Dr. Tannir, newly diagnosed RMC patients may be worried about their family members getting RMC as well. Is this something that patients and their families need to be worried about?

Dr. Tannir:

I don’t think so, Cora. I tell you I get this question asked by patients and their families, because you know that again we said that the cardinal finding in RMC is the individual has sickle cell trait and they got the sickle cell trait from one of the parents, or both parents have sickle cell trait or one of them do. So, and there may be other siblings to that individual to that subject patient with RMC who has sickle cell trait. I don’t think having a sibling or a child with RMC if the other family members, first-degree, blood relatives should be equated with RMC. So my activation tip here is do not panic, you know just because your brother or sister has RMC and they have sickle cell trait and you may have sickle cell trait, that you are not necessarily going to get it.

In fact, I’ll be honest with you, I have not seen two family members with RMC, I have not seen it. I mean not that it will never happen or had not happened, could have happened, I’m sure, but it is so rare that I think one should not equate if my brother, my sister has and I have sickle cell trait, I’m going to get it too. There is a lot we do not know about why that sibling with sickle cell trait got it. And I who has sickle cell trait didn’t get it. You know that’s what we’re trying to understand and the knowledge that we need to acquire to really get to the bottom of it. But my activation tip for this is, please do not panic. Hopefully, you will live a normal life, and you will not have RMC, but you should be diligent. 

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Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

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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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What Renal Medullary Carcinoma Treatment Options Are Available?

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

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?

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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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How Can Patients With Sickle Cell Trait Lessen RMC Risk?

 Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

 Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?

Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?

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

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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.”

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

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Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection

Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection

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

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

 Advice for Newly Diagnosed Renal Medullary Carcinoma Patients

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?

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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.“

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

Related Resources:

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

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

 Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

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

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

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?

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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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What Do Renal Medullary Carcinoma Patients Have in Common?

What Do Renal Medullary Carcinoma Patients Have in Common?

 Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

 Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?

Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?

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?

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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.”

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What Are Renal Medullary Carcinoma Noted Disparities?

What Are Renal Medullary Carcinoma Noted Disparities?

 How Can Patients With Sickle Cell Trait Lessen RMC Risk?

How Can Patients With Sickle Cell Trait Lessen RMC Risk?

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

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

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?

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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 Are Renal Medullary Carcinoma Noted Disparities?

 What Do Renal Medullary Carcinoma Patients Have in Common?

What Do Renal Medullary Carcinoma Patients Have in Common?

 Advice for Newly Diagnosed Renal Medullary Carcinoma Patients

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?

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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

Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection

 Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

 Should Families of Renal Medullary Carcinoma Patients Undergo Genetic Testing?

Should Families of Renal Medullary Carcinoma Patients Undergo Genetic Testing?

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?

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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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See More from [ACT]IVATED RMC

Related Resources:

Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection

Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection

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

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

 What Are Renal Medullary Carcinoma Noted Disparities?

What Are Renal Medullary Carcinoma Noted Disparities?

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?

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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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Related Resources:

What Is Renal Medullary Carcinoma?
What Are the Symptoms of Renal Medullary Carcinoma?
How Is Renal Medullary Carcinoma Diagnosed

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?

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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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See More from [ACT]IVATED RMC

Related Resources:

What Is Renal Medullary Carcinoma?
What Are the Symptoms of Renal Medullary Carcinoma?
 What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

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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