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

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.

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

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.

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“…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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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?

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.”

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

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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