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.

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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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What Do Renal Medullary Carcinoma Patients Have in Common?

What Do Renal Medullary Carcinoma Patients Have in Common?

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

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

 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?

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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.

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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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 What Renal Medullary Carcinoma Treatment Options Are Available?

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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?

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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.

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“…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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RMC Patient Profile: Lamar Valentina Part 2

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Read the first part of Lamar’s RMC journey here…

Part of Lamar’s cancer treatment occurred during the COVID-19 pandemic. He had to quarantine to keep himself safe, and it was scary to him at times. “But now that COVID-19 has subsided a little bit. It’s still around, I recommend doing some things that you enjoy. Don’t let cancer take away the joy that you still have. If you’re someone who’s active, maybe you just need to scale back on how active you are. Of course, you want to be safe. If you’re someone who likes to travel, find ways that you can still do it safely.”

Lamar found some activities that were helpful for him physically and mentally. “What helped me was being more involved in nature. I would do walks. I would sit outside and watch the clouds. I’d watch the stars at night. And I try to still continue to play basketball with my son. Obviously, he’s starting to get a little better than me. He’s getting bigger and faster, and I’m a little weaker. But I try to still do things that are fun and enjoyable.”

During part of COVID-19 restrictions, Lamar started missing the ability to do things, being self-sufficient, and even getting back into work. People asked why he was in such a rush to get back to work, but work helped him feel a sense of purpose. He felt like he had become a burden to his loved ones who had to cared for him. Lamar recommends striking a balance between accepting help and doing some things yourself. “Let others who want to help you actually help you. If you feel up to doing other things on your own, don’t shy away from that. Don’t let cancer take away a little bit of independence or a little bit of your purpose that you feel. I enjoy doing these PEN interviews, because I think we need that voice, and people shouldn’t shy away. Obviously, I’m not saying go out and be reckless. Be safe but try to do the things that bring you joy.”

People often tell Lamar that he looks so healthy and that he doesn’t look sick, which can be frustrating, since he wakes up with pains and has tumors all over. His biggest takeaway from this journey is how resilient he is. Lots of people tell him that he makes cancer look easy but don’t realize that it’s very difficult. “I just feel like life is short as it is. We all have an expiration date, and we don’t know when it’s going to come. And that’s the only thing guaranteed in life. For me, I really just feel like I want to live each day as if I’m trying to make a mark, at least be as happy as possible, chasing my goals and my dreams. I try to make sure with every encounter that I have with people that I’m not angry or bitter. I don’t want that to rub off on them, so I try to make sure that I greet everyone with a smile.”

If people don’t know specifically from his appearance since his eyebrows and hair are gone or know from someone else, Lamar prefers others to not know what he’s going through. “I don’t want people to feel sorry for me. Just treat me like a normal person, and hopefully I can pass on some positive energy and some happiness to everybody else regardless of what they’re going through to make it a kinder place here on earth.”

Lamar feels blessed about his overall quality of life. He’s at work and still travels for work as a flight chief in the Air Force. I’m not as physically active as I’d like to be. He’s doing chemo every three weeks, and will be starting radiation soon for a spot that’s remaining. The ultimate goal is to achieve no evidence of disease. He’s been in outpatient care for his entire treatment process and has been able to go to the hospital for chemo and then returns home and to work. “It’s been an absolute blessing that I cannot take for granted. But I still go through ups and downs. I have slight pains here and there. I’d love to be able to work out three to four days a week. But I’d rather take it easy and focus on my body healing from the inside out, and I’ll get back to working out more sooner or later.”

His biggest advice to renal medullary carcinoma (RMC) patients and cancer patients is don’t give up hope. “A lot of this fight is mental. Your body follows physically what you think mentally. So speak positive affirmations. Every day when you wake up even on the tough days, speak healing into your body. What you’re eating, whatever you’re drinking, it’s going to provide healing and substance. It’s going to rid your body of cancer. No matter how dark it looks or how dark it gets at any point, do not give up hope. Do not lose your spirit. Make sure you’re smiling and laughing and doing the things you love with the people you love.”  

Lamar looks forward to ongoing research of RMC. “This has been a huge purpose added to my life. Anything I can do while I’m here, I’ll do it. I’m a big advocate for more support and more research for RMC. I know each day we’re getting closer to a cure, and hopefully this won’t impact families as negatively as it has in the past.”

What’s Lamar’s parting advice to other patients? “When you come out of the storm, you won’t be the same person that walked into it, that’s what the storm is all about. When you can’t control what’s happening to you, control how you respond to it, that’s where your power is.”

RMC Patient Profile: Lamar Valentina Part 1

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When Lamar Valentina shares his renal medullary carcinoma (RMC) patient journey, you can tell that he loves serving and helping others in his work and free time even as a cancer patient. As an active duty Technical Sergeant in the U.S. Air Force, Lamar has continued to work throughout his cancer treatment. When a lump on the side of his neck combined with extreme abdominal pain and flank pain concerned him, Lamar decided to have his symptoms checked out at the hospital. His RMC diagnosis came shortly before he turned 35, and his chemotherapy started about two weeks after his diagnosis.

Lamar is fortunate to have some friends who work in cancer centers, and they were connected with experts at Dana-Farber Cancer Institute, which is in Boston where his son also lives. The COVID-19 pandemic created a delay for some of his chemo, but it ended up as a benefit to give his body a break. Lamar recalls feeling some measure of relief about his tumor scans, “…we saw that there was a little bit of growth, it wasn’t alarming growth, but there was some growth, but it still hadn’t gone to where it was when I first was diagnosed, so that was the good thing that it wasn’t as aggressive as it’s known to be.”

After the things he’s gone through during his cancer journey, Lamar feels he has much to share to help other patients with what they’re going through. For newly diagnosed patients, he recommends that patients take advantage of resources and oncology therapists that most cancer centers provide. “Take the time to process the news of your diagnosis. I was sort of like a deer in headlights. Everything went blank, and I felt like I was in a nightmare of a dream, trying to wake up. So process your diagnosis and go through the emotions. You’re going to feel sad. You’re going to be depressed. You’re going to be angry. You’re going to be curious as to why you. But once you process those emotions, make sure you don’t compartmentalize those emotions and you express them to somebody whether it’s a friend, a caregiver.” 

Early after his diagnosis, Lamar decided to go full-on vegan and lost a lot of weight. “It was very frightening, because losing weight made my body become a lot more frail and weak. So I started to eat fish and chicken. His advice to other patients, “I think specific things like that definitely talk it over with your primary doctor, your medical team to make sure you’re doing what’s best for yourself and that you’re not going to hinder your treatment.”

Lamar feels fortunate to have connected with the Patient Empowerment Network (PEN) RMC Empowerment Lead Cora Connor through a Google search and found R.M.C., Inc. He also feels that the RMC community is a very tight-knit community, “I really like to pay homage to those we have lost. One of the first friends I met was Chad Alexander, Ava Cummings, Kai Penn, Da’Corey Kimbrough, Seth Calhoun, Caleb Wheeler, Feninna Vasilou, and there are so many other people I’ve met…they’ve since passed away. These are a few of the RMC warriors we have lost. I continue to fight for them and to everyone still battling RMC, I wish nothing but clear scans as we fight on the front lines together! Finding people who are going through this whether RMC or another form of cancer, I think you can relate more to cancer patients, because they understand what you’re going through.” 

Lamar advises patients to empower themselves. “You want to be able to at least know what questions to ask. And it starts with educating yourself. So I think you want to be able to go into those appointments and know what questions to ask, know if you get a certain answer to that question to know what a good follow-up question would be.” Early on in his care, he would record his conversations with his doctor to ensure he got all the information. Lamar also advises writing down questions before you go to your appointments to make sure you don’t forget about them. 

According to Lamar, being involved and learning about trial treatments are vital ways for patients to take part in their own care. “A lot of people have asked me about my treatment plan, but we’re all different. Our bodies are different. The way we can handle certain treatments are very different. So I try not to compare my care and the chemotherapy to what other people had. Because if you go based off that, you may turn down a treatment that may possibly work better for you with your genetics, and it may not have worked well for someone else, and you deny that based off their reaction to that treatment when it could be really helpful for you.”

Read the second part of Lamar’s RMC journey here…