Tag Archive for: renal medullary carcinoma treatment

What Renal Medullary Carcinoma Treatment Options Are Available?

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.


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

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Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

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

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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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Lamar’s Story

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.


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.