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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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.”

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

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

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

 What Renal Medullary Carcinoma Treatment Options Are Available?

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 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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