Tag Archive for: kidney cancer

RMC Patient Profile: Lamar Valentina Part 2

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

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…

Armia’s Story

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.

What Health Disparities Exist for Patients with Renal Medullary Carcinoma?

This video was originally published by Diverse Health Hub here.

What Health Disparities Exist for Patients with Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

Dr. Pavlos Msaouel broaches the disparities that exist for patients with Renal Medullary Carcinoma (RMC). He contends that RMC afflicts a very vulnerable population, that is young African Americans. The disparity exists due to the young age of these patients who aren’t part of a work force with health insurance. Secondarily, this has caused RMC to be underdiagnosed, preventing optimal treatment for patients.

On a global scale, Nigerians face the same disparity, as traits of RMC affect a large number of the population. There are virtually zero reports of its existence and patients again are underdiagnosed. Dr. Msaouel argues we need to research questions that answer where and how RMC affects particular populations in order to equalize the disparity of underdiagnosed patients. Currently the US is gathering data and creating RMC patient communities and advocates. Dr. Msaouel stresses this research is needed on a global scale as well.


Transcript:

Rebecca Law:

Dr. Msaouel, what disparities exist for patients with Renal Medullary Carcinoma?

Dr. Pavlos Msaouel:

Now that is a wonderful and very important question because there are certainly disparities in caring for individuals with RMC (Renal Medullary Carcinoma). Think about it these are people who are young and young people in general — you know they do not have necessarily for example, in the U.S. that kind of insurance when they’re in their twenties or teenagers that they will have later in life or even you know are not part of the work force in that sense. But it’s even more challenging if you think that the vast majority of individuals with RMC are young African Americans. So, this is a disease that particularly afflicts a very vulnerable population, so there is no doubt that health disparities afflict individuals with RMC and this may be part of the reason why for many years this was an underdiagnosed disease.

Dr. Pavlos Msaouel:

We are finding out now that this cancer is more common than we originally thought. It’s still a rare cancer, there is no doubt about that, but it is more common than we originally thought to the point that nowadays in our clinics we see about 1 new case, 1 new patient with RMC per month. So that’s certainly more common than the about 100 cases that have been published thus far in the literature—there are many more that we do not know of. And think about it also in a different way, from a more global perspective. So, there is about let’s say 3 million individuals in the U.S. who carry the sickle cell trait. Most would be African Americans, other ones will be Caucasians so there are many different people who can have the sickle cell trait, but it’s mainly African Americans, but there are 300 million people in the world that carry the sickle cell trait — mainly in Africa.

Dr. Pavlos Msaouel: 

So, let’s take for example, Nigeria – there are many people in Nigeria who have the sickle cell trait yet how may reports are there about the existence of this cancer in these countries, essentially almost 0 and so that is a disparity in itself. This is a cancer that can be difficult to diagnose especially if you do not know about it, if you’ve never heard of it, but even if you do – even if a physician or healthcare personnel knows about this cancer it still needs specific tests to be done and many of them cannot be done in most countries so that’s also a disparity.

Dr. Pavlos Msaouel:

So the mere fact that this cancer cannot be diagnosed in many countries in the world is a disparity in itself, so if we were able to correct this and understand more about where it happens and how often it happens we know much more nowadays thankfully through the work of many people in the U.S. now that are becoming passionate about helping individuals with RMC (Renal Medullary Carcinoma) so we are gathering a lot of data, a lot of information, we have patient communities in the U.S., we have patient advocates that help immensely in the U.S, but this is very likely a global phenomenon, so that’s a disparity that will need to be addressed.

How Can Providers Combat Inequities in the Care of Renal Medullary Carcinoma Patients?

This video was originally published by Diverse Health Hub here.

How Can Providers Combat Inequities in the Care of Renal Medullary Carcinoma Patients? from Diverse Health Hub on Vimeo.

Dr. Msaouel tackles the question of how providers can combat inequities in the care of Renal Medullary Carcinoma (RMC) patients. He states that patients go undiagnosed because providers don’t know about the disease. Dr. Msaouel urges that healthcare providers raise awareness about RMC and in doing so be diligent about screening patients with particular symptoms.

According to Dr. Msaouel, young African Americans possessing sickle cell traits and blood in the urine must be taken seriously and screened with ultrasound to check for suspicious kidney masses. They must be thoroughly checked with proper diagnosis. Dr. Msaouel says providers in the US know more about RMC but efforts must be increased to raise optimal awareness not only here in the states but around the world.


Transcript:

Rebecca Law: Dr. Msaouel, what can providers do to combat inequities in the care of Renal Medullary Carcinoma patients?

Dr. Pavlos Msaouel: So that’s a wonderful question. One way to be able to address this is to help as a provider raise awareness. So, one of the things that is happening is that very often in these cases, patients with RMC are undiagnosed because people don’t know about it. So, if healthcare providers know about this then they can think about it, and then they can start having it in mind. And so, if a young individual — especially if it’s a young African American who has the sickle cell trait — comes with blood in the urine in the ER you have to take it seriously.

Dr. Pavlos Msaouel: You have to do potentially an ultrasound of the kidney and if you do an ultrasound of the kidneys and you find something that’s suspicious like a mass, you have to take that very seriously. This is thankfully happening more and more often in the United States, but not necessarily always and it needs to happen more often around the world as well. So, that’s a simple step that we can do to address the inequity for this cancer.

Are Sickle Cell Disease Patients More Susceptible to Renal Medullary Carcinoma?

This video was originally published by Diverse Health Hub here.

Are Sickle Cell Disease Patients More Susceptible to Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

Are sickle cell disease patients more at risk for developing renal medullary carcinoma? In this highly informative interview, Dr. Pavlos Msaouel, a respected clinician at The University of MD Anderson Cancer Center specializing in treating RMC, shares why sickle cell disease patients and those with sickle cell trait may be more at risk for developing RMC.


Transcript:

Rebecca Law: 

Dr. Msaouel, are sickle cell disease patients more susceptible to renal medullary carcinoma?

Dr. Pavlos Msaouel:

So that is a wonderful question. So, it is not just individuals with sickle cell disease that are more susceptible to developing RMC, it also individuals with sickle cell trait. And there are many more individuals who have the sickle cell trait than those with disease.

Dr. Pavlos Msaouel:
About for every one individual with sickle cell disease there will be about 40 — that’s 4-0 — individuals with sickle cell trait. And many of them that carry the sickle cell trait will not know that they carry the sickle cell trait. So having either sickle cell disease or sickle cell trait increases substantially the risk for developing RMC. And why does that happen? It happens because when you carry either the sickle cell trait or sickle cell disease, your red blood cells — these are the cells in the blood that carry oxygen — normally, they will have this round shape, but if you have the sickle cell disease that shape is changed, it’s like a sickle, it changed to the form of a sickle.

Dr. Pavlos Msaouel:
If you have the sickle cell disease that will happen everywhere in your body. If you have the sickle cell trait, then your red blood cells will look normal in most areas of your body. However, there is one area in the kidney called the medulla of the kidney where the cells will look sickles whether you have sickle cell trait or sickle cell disease. And to our understanding, having these cells that look like sickles in the medulla damages the medulla in a way that increases the risk for developing this cancer. So RMC stands for renal medullary carcinoma and the medullary part in the middle of the name means that it comes from the medulla.

What is Renal Medullary Carcinoma?

This video was originally published by Diverse Health Hub here.

What is Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

What is renal medullary carcinoma (RMC)? Dr. Pavlos Msaouel, a medical oncologist treating rare forms of renal cell and urothelial carcinomas, gives an overview of RMC, a rare, deadly type of kidney cancer predominantly afflicting young adults of African decent with sickle cell disease. Dr. Msaouel shares what symptoms have often led to diagnosis and points out that 75% of all RMC cases originate in the right kidney.


Transcript:

Rebecca Law:

Dr. Msaouel, what is renal medullary carcinoma and how is it diagnosed?

Pavlos Msaouel, MD, PhD:
RMC is the acronym for a kidney cancer named Renal Medullary Carcinoma. Renal Medullary Carcinoma or RMC is one of the deadliest kidney cancers, and it predominantly afflicts young people mainly of African descent that carry the sickle cell trait or sickle cell disease.

Pavlos Msaouel, MD, PhD:
It is often diagnosed after patients start developing symptoms, and those symptoms can be blood in the urine — the medical term is hematuria — or they may have pain in their flanks on their side where the kidneys would be, on the right side or on the left side.

Pavlos Msaouel, MD, PhD:
Interestingly RMC mainly happens on the right kidney, so about 75% of all RMC cases will happen in the right kidney. And unfortunately, in the vast majority of cases when it does present, it will be what we call stage 4 — meaning metastatic — meaning it will have spread to other organs.

Notable News February

At this point in the year many of us have already given up on our New Year’s resolutions, but if your resolution was to lose weight this year, it might be time to revisit it, especially if you are a young adult. A study reported by cnn.com reveals that obesity-related cancers are increasing among the 24 to 49 year old age group, and the risk is increasing at progressively younger ages. There are six cancers that showed increases in younger adults — colorectal, endometrial, gallbladder, kidney, pancreatic, and multiple myeloma. These cancers are traditionally found in people in their 60s and 70s, but now the risk of these cancers in millennials is almost double what it was for baby boomers when they were the same age. More information about the study and the connection between obesity and cancer can be found here.

The increase in cancer rates in younger adults is alarming, but being able to detect the disease at an earlier stage increases the chance for survival. Pancreatic cancer is a cancer that is difficult to diagnose early. It is almost always diagnosed at an advanced stage and about 95 percent of people diagnosed with it will die of it. Now, Norwegian researchers may have a clue into better understanding pancreatic cancer which could eventually lead to earlier diagnosis, reports sciencenordic.com. The researchers learned that there may be a connection between blood type and pancreatic cancer. People with blood type A have a slightly increased pancreatic cancer risk and people with blood type O seem to have a slight protection from the disease. The differences in risk are small, but the data is consistent to studies in other countries and may provide insight into better understanding the disease. Researchers hypothesize that intestinal flora, the immune system, and digestive enzymes may play a role in the contraction of the disease and give researchers a direction for further study. Learn more here.

While not on the list of cancers being found more often in younger adults, prostate cancer remains the most common cancer among men. Typically, it can be successfully treated, but the cancer often spreads making more aggressive treatment necessary. Unfortunately, there’s been no way of knowing when or if the cancer will spread — until now. There’s a specific gene responsible for the spread of prostate cancer, reports medicalxpress.com, and a study at Rutgers University has found it. The NSD2 gene, which indicates when patients are at high-risk for the cancer to spread, was found through a computer algorithm. Researchers were able to turn off the gene in mice and prevent the cancer from spreading. Being able to identify when the cancer may spread will allow for more targeted treatment and prevention. Also, it might be possible to use the algorithm for other cancers as well, which is good news for everyone. More information about the NSD2 gene and the computer algorithm can be found here.

No matter what age someone gets cancer, pain can often be a side-effect of the cancer itself or of the treatment. Pain occurs in up to 50 percent of people with cancer. Cancer-related pain is real, and it can last long after treatment, but cancer.gov says that there is renewed interest in seeking new, non-addictive pain medications, as well as other pain management solutions, for cancer patients and survivors. Medications are being developed, and options such as cannabinoids (chemicals found in marijuana), are being explored to treat bone pain and pain in the head and neck from oral cancers. Pain is also a side-effect of treatments such as chemotherapy, and prevention is being sought for that type of pain as well. Non-drug treatments that are being considered are yoga, Tai Chi, and mindfulness meditation. There is much, much more to be explored about the potential for pain management, but more about what is already being done can be found here.

Alleviating the pain of cancer whether through pain management, early diagnosis, or preventing the disease from spreading is definitely a step in the right direction for ensuring that all patients are empowered patients.