Tag Archive for: RMC treatment

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.“

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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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Related Resources:

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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Armia’s Story

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Armia’s Story | Renal Medullary Carcinoma from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) patient Armia Austin was diagnosed at age 21. Watch as she shares details about her diagnosis and treatment journey, advice to others for sickle cell trait testing, and hopes and goals for the future.

Transcript:

Armia Austin:

I was diagnosed with RMC back in May of 2020. I was 21 years old when I was diagnosed and I was at college when I started getting symptoms. The timing couldn’t have been better because I had symptoms and then it was spring break and then the pandemic hit. So, I was able to come home, be with my family, and be able to attend all these doctors’ visits, ’cause I had to get CT scans, MRI all that kind of stuff. So, the timing was good because I was able to come home from college and get the testing that I needed to see exactly what was going on. Finding a doctor was very simple, because I went through my primary care doctor, and then I was referred to a doctor for my urinary tract, so I saw someone to get a CT scan on my bladder and all that stuff, and then they saw a tumor on my right kidney, so they didn’t know what it was, and they didn’t care if it was cancerous or not, I’d see a neurologist for that, so they didn’t care if it was cancerous or not, they just wanted me to remove the kidney all together as soon as possible because of the size of my tumor. So, in May, I got the kidney removed, my right kidney removed, and then I followed up with the doctor who removed my kidney, my urologist, and they noticed that it was called renal medullary carcinoma, that was the type of tumor it was, and they followed up with an oncologist that I was able to meet with immediately because they wanted me to be watched regardless if it has spread or not.

So, my treatment path was, it was a pretty easy transition because I was able to have a urologist set up right away. So it was actually, I’d say after three months of not having or, of getting my right kidney removed, I was set up for a CT scan three months, fast forward three months from the surgery, but I started getting symptoms probably three weeks after my kidney surgery. I had a very rough chest pain, it was very heavy on my chest, I had issues breathing, so I… fast forward, I got another CT scan and there was fluid, they were fluid all over my chest in the CT, it filled my entire right lung, so it went from my right kidney all the way up to my right lung and it filled the entire lung, so I was breathing off of one lung at the time, and I would have anxiety attacks, panic attacks, everything because it was so hard to breathe on its own, so it would freak me out, but then I was able to get tapped in my back, so they would numb my back and then drain the fluid so it would release the tension in my lung area, but then I was able to get on chemotherapy by August, I had an event where my friends came over and they all shaved their heads for me, so that was really nice.

So talking to friends and family was definitely a huge benefit for me because people were always praying, leaving me messages, checking in on me, making sure I was okay, and when you are a cancer patient, it’s really hard to understand or wrap your head around the fact that you actually are

sick in a sense of like it’s very different from anything, any kind of sickness you have encountered before, so it was hard, but definitely talking to friends and family made the difference. My advice to others is definitely get tested for the sickle cell trait as soon as possible. I think that is the most important thing because that’s where it all starts. So even if you have the sickle cell trait, it doesn’t necessarily mean that you will be prone to this cancer, but it’s definitely good to get the test so that if it were to come up in the future, you would know how to handle it sooner.

So, my hope for the future, I’ve been on chemo for about six months now, and it’s been going very well for me. I’m still a college student, I never took time off from classes, so I never took not even a summer off when I was diagnosed, I was still in summer classes, finished fall semester, and now I’m in Spring, so I will be scheduled to graduate this May, May of 21, and then eventually I plan to go to medical school and become a doctor myself. Because I love the idea of helping other people who are unable to help themselves, and I feel like if we have more leaders in the healthcare field who can relate to a perspective, then we’ll have a lot more better doctors in the world because of the relationship and the perspective of being on the opposite end of the spectrum.

Never take life for granted because you never know what will come out of it. And I can say that from my experience, cancer isn’t what I planned for myself. I never thought I would be diagnosed at 21 years old, but it really shaped me as an individual as far as how important and how crucial life is, and how important is to stay on top of your health and you know just life is very important and whoever is going through something, just be grateful that you have the chance to get the help you need and that it’s not too late to get help from any type of medical professional because everyone’s life is important, everyone’s life is crucial.

And renal medullary carcinoma should not go unnoticed because it’s a crazy and it’s a crazy cancer, but with more research and more help and people who are more informed because of the cancer, I feel like we’ll be able to stop a lot of cases in the future.

Lamar’s Story

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Lamar’s Story | Renal Medullary Carcinoma from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma patient and active-duty U.S. Air Force member Lamar Valentina shares important pieces of his RMC journey. Watch as he discusses the symptoms that led to his RMC diagnosis, his treatment journey, things he found helpful for support, and his hopes for how to educate others about sickle cell trait and RMC for better health outcomes.

Transcript:

Lamar Valentina:

I’m Lamar Valentina, I was diagnosed September 25th, 2019. What prompted me to be checked was I had a lump that was literally right here, it kind of protruded out, and I had some really bad abdominal pain as well as flank pain on my left side, it was really unbearable, so those three things combined — I got really concerned and decided to go to the hospital.

I’m in the military, active-duty military, so working out and kind of taking breaks, it’s common for me to get lower back pain, but it was definitely a different lower back pain, and then with the added lump that was between here, it was literally right here. And this kind of has actually gone down, so that’s a sign from my oncologist that says that the cancer is shrinking based off treatment. So diagnosed on September 25th, 2019. I started chemotherapy on October 11th of 2019. There were a few options. I had some friends that work in cancer centers, and my ex-wife actually works with foundation on medicine, and they had connections at Dana Farber in Boston, and that’s where she lives with my son who’s 12, who will be 13 in March. Starting chemo on October 11th, the first cycle that I was on was Carboplatin-Taxol, I did that for about six cycles, and there was shrinkage, but due to COVID, we took a break to give my body a break, ’cause chemotherapy did a big number on my body, I lost a lot of weight, obviously my hair and my eyebrows, my hair is still gone, my eyebrows are still gone, and it just…

With my body adjusting to chemotherapy was pretty rough, but I handled it well, so actually that break… During that time, I said about three months, two months through my break, I want to say we did that until about February, and then we started back up in April, so about three months and that was more so because of COVID and creating delays in between. But once we got a scan and 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.

Throughout this whole ordeal, it’s been family, friends. Throughout the beginning, you know you have a lot more support and it kind of balances out, which is fine, ’cause I’m a pretty introverted person anyway, but I have a great immediate circle that’s there to share positive affirmations and positive vibes and positive energy. And that’s honestly what helps me through that, along with music and staying productive, I’m still actively in school and still in the Air Force, active duty, I make 14 years, and next month in March, and my hope is that through this campaign and through everything else, we just continue to raise as much awareness as possible. I was always told growing up that sickle cell trait really was nothing to worry about, unless if I had a child with someone else that had the sickle cell trait, and then our child would be fully diagnosed with sickle cell, so I’ve never really even thought to be concerned about having a trait of sickle cell, so my hope is that through this campaign and through other everything else, we’re able to raise as much awareness as possible to grab the right people’s attention that are going to continue to put forth the proper research to help save more lives and of course, to live my life as long as possible, for as long as I’m here, and if I can hopefully inspire and motivate others along that through my hardships, hopefully that’ll help them to create a survival guide for their own lives moving forward. Whatever it is they may go through, but especially with RMC.

For anyone who’s recently diagnosed, my best advice is lean on your support team, your support circle, it’s going to be very, very hard, don’t be so quick to Google everything, but do try to make sure that you’re as informed as possible about your diagnosis about RMC, and then finding a community that fits. That’s exactly what I did as soon as I was diagnosed, of course. I did what I’m telling people not to do by Googling and everything, because once you Google everything, you’re going to get everything negative under the sun, but it is very important to be informed properly based off what you’re going to be going through, you’re down for the moment, but you’re not out, you just got a dig deep and make sure the people around you are sharing that positive energy and those positive vibes to continue to provide you with the motivation and then at a strength and the courage to fight, and it’s also okay to deal with the emotions that you may be going through. Some people feel that, “Oh, you got to be strong.” Being strong doesn’t mean not crying or not feeling sad, you’re going to feel every emotion imaginable once you are diagnosed.

So, it’s okay, the best thing is to do is to process that and hopefully have an outlet or somebody that you can share that with, and you can kind of unload it ’cause you don’t want to compartmentalize those feelings and those emotions because it doesn’t go anywhere, it just kind of festers, it’s like sweeping it under the rug, it’s going to pile up and just really, really become a lot.

So really, really lean on your support system, and if you don’t have a support system, I guarantee if you research it like I did. Reaching out to Cora Connor has been amazing, ’cause they put me in touch with other people that were going through what I’m going through, and talking with people who are going through, who can relate to what you’re going through is way different than talking to people who don’t really have an idea of what it is that you’re going through, not saying that they can’t help and they can’t be there for you, but it’s just, it’s a different type of comfort that comes from knowing someone that is literally sharing the same symptoms or going through the same treatment, or may have gone through the same treatment or the same procedures that you may be up against, and you can ask some questions and get a realistic answer from somebody with experience as opposed to getting assumptions or things from other people, but I would say stay positive. Stay as positive as possible. Don’t give up hope. Don’t give up hope.

It doesn’t have to be a significant other for other people that are going through if you’re single, it could just be your best friend, it could be a friend. Motivation and inspiration comes from the most strangest of places, and I’ll be witnessed. I’ll be the first to admit to that on the top of having someone, but there’s times when you often feel alone and you kind of think about how this impacts and affects them, those closest to you as well. So, I think taking that into consideration is something that people who are really diagnosed as well to guess we are the center of it, were the ones who actually are going through it, but the people that love and care about you, they’re going through it in a way as well too, they’re definitely affected and impacted by this too.