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Becoming an Empowered and [ACT]IVATED DLBCL Patient

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the diffuse large B-cell cancer (DLBCL) community. DLBCL treatment options are ever-increasing with research advancements in treatments and testing, and it’s essential for patients and families to educate themselves with health literacy tools and resources on the latest information in DLBCL care. With this goal in mind, PEN kicked off the [ACT]IVATED Diffuse Large B-Cell Lymphoma (DLBCL) program, which aims to inform, empower, and engage patients to stay abreast of up-to-date information in DLBCL care.

The [ACT]IVATED DLBCL program is aimed at newly diagnosed DLBCL patients, yet it can help patients at any stage of disease. The initiative aids patients and care partners stay abreast of the latest options for their DLBCL, provides patient activation tools to help overcome barriers to accessing care, and powerful tips for self-advocacy, coping, and living well with cancer.

Diffuse Large B-Cell Lymphoma Disparities

Clinical trials are the primary way to forge DLBCL research and treatment advancements. Yet Black and Hispanic patients have been subject to clinical trial exclusion criteria at a higher rate than white patients. A recent DLBCL study showed that levels of lab test criteria of platelet count, hemoglobin, neutrophil count, bilirubin, and creatinine was responsible for the exclusion of 24 percent of patients who applied for clinical trial participation. And Hispanic and non-white DLBCL patients were more likely to be excluded from trials based on these lab test values – a clear disparity in DLBCL care.

Dr. Shah's [ACT]IVATION Tip

Access to specialized DLBCL care and clinical trials are important for all patients. Cancer patient Lisa Hatfield interviewed Dr. Nirav Shah, Associate Professor at the Medical College of Wisconsin. He explained about the barriers to care that some patients experience. “…I think that just simple geography is an issue that creates accessibility and impacts the type of care that a patient is able to get. I think beyond that, there are obviously economic factors that drive a patient’s ability to get specialized treatment. Do they have money to afford the gas to get to a larger center? Do they have the resources or the support system available to get a complex therapy where you would need those treatments, especially for relapsed disease? And then I think there are always going to be racial factors and accessibility issues that happen, where patients aren’t referred in time or patients aren’t getting necessarily the best care that they can.

Solutions for Improved DLBCL Care 

Dr. Nirav Shah shared about the impact of clinical trial participation. “We wouldn’t have CAR T if hundreds of patients didn’t go on these clinical trials and be willing to be a subject and go through a treatment that was at the time undefined and without knowing how efficacious it was going to be.…clinical trials are important because without patients participating in clinical trials, how can we do better?”

In order to improve and refine DLBCL treatments, more research must be carried out. Dr. Nirav Shah shared where things stand with DLBCL types and how optimal treatments may be found in the future. “…there’s something called the germinal center phenotype. The other one is called the activated B-cell phenotype and prognostically, these sort of behave differently. Currently, we’re treating them the same, but we’re hoping that in the future, we’ll actually have algorithms that are more refined so that they are giving the best treatment for each subtype. 

“So I know that in the world of diffuse large B-cell lymphoma, we have lots of great treatments, which is the exciting part for me. My biggest concern remains that not all of those treatments are accessible to all the patients that they need them, and I think we all need to do a better job of educating our community, of making people aware that these options are available, and then also facilitating patients who have less money, patients who have less resources to be able to provide them what they need to be able to get the treatments that are best for them.

Healthcare providers are available to help DLBCL patients. Make sure to ask about a phone number for you or your loved one experiences concerning side effects. Dr. Nirav Shah explained the importance of staying in touch with the care team. “…call us. Let us know what’s going on. We can’t help you with your symptoms if we’re not aware, and we don’t mind those phone calls because we want to help patients through that journey.”

Dr. Shah also shared his perspective about DLBCL treatment advances and how hopeful he is about the future of DLBCL treatment. “…there have just been incredible advances, not just in chemotherapy, but immune therapy and targeted therapy, and so the goal is to keep getting better. I see a future where more and more patients with diffuse large B-cell lymphoma are cured in the front line, and more and more patients are cured in the second line.”

[ACT]IVATED DLBCL Program Resources

The [ACT]IVATED DLBCL program series takes a three-part approach to inform, empower, and engage both the overall DLBCL community and patient groups who experience health disparities. The series includes the following resources:

Though there are DLBCL disparities, patients and care partners can take action to educate themselves to help ensure optimal care. We hope you can take advantage of these valuable resources to assist in your DLBCL care for yourself or for your loved one.

[ACT]IVATION Tip:

By texting EMPOWER to +1-833-213-6657, you can receive personalized support from PENs Empowerment Leads. Whether you’re a DLBCL cancer patient, or caring for someone who is living with it, PEN’s Empowerment Leads will be here for you at every step of your journey. Learn more.

How Is Renal Medullary Carcinoma Diagnosed?

How Is Renal Medullary Carcinoma Diagnosed? from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) diagnosis involves testing that patients may need to follow up on. Expert Dr. Nizar Tannir explains common RMC symptoms, typical imaging tests that are involved, and advice to patients to be proactive to ensure their best 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

“…follow up after they have that imaging study…I would like patients to be aware and to be informed of what the symptoms mean. And that warning that blood in the urine or pain needs to be followed up and should not be dismissed or assumed that this is an infection or a stone that passed and you’re young, you don’t have to worry about cancer. They need to really follow up if that facility, that physician did not order the test, they need to follow up with their personal family physician and obtain those tests.“

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Related Resources:

What Is Renal Medullary Carcinoma?
What Are the Symptoms of Renal Medullary Carcinoma?
What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

What Are the Challenges of Diagnosing Renal Medullary Carcinoma?


Transcript:

Cora:

Given how rare RMC is, we know many people have a long road to diagnosis, like my brother Herman, which can cause tremendous stress. How is renal medullary carcinoma diagnosed?

Dr. Tannir:  

Renal medullary carcinoma is diagnosed by imaging. Symptoms typically include pain, blood in the urine, and, of course, if the cancer has spread to organs, cough, fever, weight loss…so the diagnosis is made by imaging first. And typically this is done at a facility, hospital, clinic or emergency room, with an ultrasound or a CAT scan or an MRI, which typically shows a mass in one of the kidneys. Renal medullary carcinoma arises more commonly in the right kidney than the left kidney and three-quarters of the time it arises in the right kidney. So, but it can arise in the left kidney. So once there is a mass in the kidney, that obviously needs to lead to a biopsy.

And ultimately the diagnosis of RMC is made by obtaining a piece of that tumor, whether it’s from the mass in one of the two kidneys or a biopsy of a site that the cancer has spread to. So my activation tip is for a patient who has these symptoms and they seek medical advice at a hospital or a clinic or emergency room, is to follow up after they have that imaging study. Occasionally the facility may report the findings on the CAT scan, let’s say, but patients may not get that report; and, unfortunately, this may not be followed later with a phone call to the patient or family to alert them about the findings. So they need to…

Patients need to be proactive and participate in their care by getting the report, by finding out, by following up what showed up on the CAT scan or ultrasound or MRI, and then follow up further with a facility that is specialist in this type of disease.  So my activation tip is be involved, be engaged, be proactive, follow up after you had a test. And if you..if the patient goes to a facility and they just get dismissed without doing the test, because unfortunately I’ve seen it in my practice time and again, where a patient goes to a facility complaining of blood in the urine or pain, and they’re treated with antibiotics and they’re told that they have an infection and the patient doesn’t follow up and they haven’t done an imaging study, a CAT scan or an MRI or ultrasound.

So I think it is important, I would like patients to be aware and to be informed of what the symptoms mean. And that warning that blood in the urine or pain needs to be followed up and should not be dismissed or assumed that this is an infection or a stone that passed and you’re young, you don’t have to worry about cancer. They need to really follow up if that facility, that physician did not order the test, they need to follow up with their personal family physician and obtain those tests. So that’s really my activation tip for patients. 


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Ovarian Cysts and Uterine Fibroids: Is There a Connection to Ovarian Cancer?

Ovarian Cysts and Uterine Fibroids: Is There a Connection to Ovarian Cancer? from Patient Empowerment Network on Vimeo.

Are ovarian cysts and fibroids a concern for ovarian cancer patients? Expert Dr. Ebony Hoskins shares her perspective about fibroids and cysts, what she looks for in patients, and her advice to patients to ensure their best care.

Dr. Hoskins is a board-certified gynecologic oncologist at MedStar Washington Hospital Center and assistant professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center. Hoskins sees women for gynecological malignancies, which include the treatment of endometrial, ovarian, vulva, vaginal and cervical cancers.

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Related Resources:

Sexual Health After a Cancer Diagnosis: An Expert Weighs In

Sexual Health After a Cancer Diagnosis: An Expert Weighs In

What Are Common Symptoms of Ovarian Cancer

What Are Common Symptoms of Ovarian Cancer?

What Should Ovarian Cancer Know About Immunotherapy and Targeted Therapies

What Should Ovarian Cancer Know About Immunotherapy and Targeted Therapies

Transcript:

Mikki:

Okay, Dr. Hoskins, are fibroids or ovarian cysts related to ovarian cancer?

Dr. Ebony Hoskins:

So from a gynecologic oncology standpoint, when I see someone who has a documented uterine fibroid, I don’t think that it’s related to ovarian cancer. Certainly when I see a woman that has ovarian cysts, that’s something that potentially could be an ovarian cancer. But then I’m looking at whether it’s a cyst, whether there’s fluid. So there’s other characteristics in the imaging that I have obtained. So I think the question is, are fibroids and ovarian cysts related to ovarian cancer? Not really, but I think it’s important that we are basing this on some objective data, right? So I can press on someone’s belly and say, “Oh, that’s fibroids.” But asking my activation tip would say, “Hey can I get an ultrasound to look at my pelvic organs?” Not just randomly, but if you, if a patient feels like it’s fibroids, let’s prove it, let’s get an ultrasound. And that will look not only at the uterus, it looks at the adnexa, which is the fallopian tubes and the ovaries, and have an objective diagnosis for what’s going on in the GYN organs and pelvis.


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What MPN Patient Type Is a Good Candidate for Telemedicine Visits?

What MPN Patient Type Is a Good Candidate for Telemedicine Visits? from Patient Empowerment Network on Vimeo.

What myeloproliferative neoplasm (MPN) patient type makes a good candidate for telemedicine visits? MPN expert Dr. Jamile Shammo shares her perspective of patient situations that work well for telemedicine and those who can benefit from in-person visits as part of ongoing care.

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Related Resources:

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

How MPN Providers Want You to Prepare for Telemedicine Visits

Transcript:

Lisa Hatfield:

As more institutions start to have in-person visits instead of only telemedicine visits, you might be wondering if you should keep doing telemedicine visits or move back to seeing your physician in-person. Some people might want to continue doing telemedicine for a number of reasons, including convenience/no travel involved and  limiting your exposure to colds/infection from other patients. There are certain MPN patients that could be seen with telemedicine visits or fewer in-person visits. Listen as Dr. Jamile Shammo explains.

Dr. Jamile Shammo:

So, when I think of the patient that might benefit most from seeing the physician via televisit, for example, it would be someone who perhaps has a stable disease, someone who I may want to monitor perhaps every three to six months, someone who may have stable counts, and we’re just talking to about their symptoms and monitoring those types of things every so often. And perhaps I look at the labs, and you can discuss their symptoms and whether or not they have splenomegaly and issues like that. 

Lisa Hatfield:

As Dr. Shammo notes, if your MPN is considered stable and you typically only see your doctor every three to six months, it might be worth continuing telemedicine visits instead of going back to in-person visits. 

Dr. Jamile Shammo:

Someone who may already be on a stable dose of medication and we don’t have to do any dose adjustments and even if we have to do those adjustments, perhaps we could do labs a little more frequently, so that would be all right too.

Lisa Hatfield:

If you are on a stable dose of your medication and don’t need any modifications or just have minor adjustments, you could consider staying with telemedicine visits. 

But what patients should consider doing more in-person visits, now that COVID-19 precautions are lighter? Dr. Shammo goes on to explain THAT patient could be…

Dr. Jamile Shammo:

Someone in whom I would like to initiate in treatment, someone in whom the disease may be progressing a little too quickly, someone who I may want to do an exam and assess their spleen, I suppose you could send them to an ultrasound facility and obtain an MRI or a CT, or an ultrasound of the imaging study that is. But there’s nothing like an actual exam of the patient. You are thinking about the disease progression, so those sorts of patients in which the disease is actually changing its pace, you may want to take a look at it, the full smear look and examine the skin for certain TKI and signs and symptoms of low platelets and that sort of thing. Look in the mouth for ulcers and things of that nature. 

Lisa Hatfield:

As always, please discuss with your health care team before deciding to switch to only telemedicine visits or going back to in-person visits. They know your history and can help decide what is best for you and your care at this particular time. 


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How Is Diffuse Large B-Cell Lymphoma Explained to a Newly Diagnosed Patient?

How Is Diffuse Large B-Cell Lymphoma Explained to a Newly Diagnosed Patient? from Patient Empowerment Network on Vimeo.

How do diffuse large B-cell lymphoma (DLBCL) experts explain this cancer to newly diagnosed patients? Expert Dr. Nirav Shah shares his perspective on how he leads patients through their diagnosis and treatment phases and key points that he shares to educate his patients.

Dr. Nirav Shah is an Associate Professor at the Medical College of Wisconsin. Learn more about Dr. Shah.

[ACT]IVATION TIP:

“…learn as much as they can about this diagnosis and take notes, because I know that often patients in that first visit don’t really register everything. Just because they’re feeling overwhelmed.”

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Related Resources:

What Is the Ann Arbor Staging System for Diffuse Large B-Cell Lymphoma

What Is the Ann Arbor Staging System for Diffuse Large B-Cell Lymphoma

How Can Your Diffuse Large B-Cell Lymphoma Care Team Help in Treatment Decisions

How Can Your Diffuse Large B-Cell Lymphoma Care Team Help in Treatment Decisions

Why Is Clinical Trial Participation Vital for Diffuse Large B-Cell Lymphoma Patients

Why Is Clinical Trial Participation Vital for Diffuse Large B-Cell Lymphoma Patients


Transcript:

Lisa Hatfield: 

Okay. So, Dr. Shah, you have a patient that comes into your office newly diagnosed with DLBCL, maybe from their…or they’ve heard it from their primary care provider, they understand, they looked it up on the Internet, diffuse large B-cell lymphoma, they see the lymphoma, I would anyway, I’d see lymphoma, and I know it’s cancer. What’s included in your initial evaluation, how do you explain in basic terms to a newly diagnosed patient what DLBCL is? 

Dr. Nirav N. Shah: 

Yeah, great question, Lisa. I think that any time somebody gets that diagnosis with a cancer label on it, it’s incredibly overwhelming, and so what I try to do when I see my new patients is first simply just learn about them. How did this come about, what symptoms led to this diagnosis? Learn about their past medical history, which impacts how I might treat them and what options I’m going to give them, and sort of learn about who they are a little bit, learn about their family, what they do for a living, because I think those are important values to know about your patients, when trying to make a treatment decision.

What I try to explain to these patients is that DLBCL, yes, it is a cancer. Yes, it is, unfortunately, an aggressive cancer, one that can be very rapidly growing, but unlike a lot of cancers, it is a curable type of cancer, and I really try to highlight that like all cancers, unfortunately, not every single patient is cured with diffuse large B-cell lymphoma, but initially, I think there’s reason to have optimism and hope because the goal is, for me, when I meet a new DLBCL patient to provide a curative intent treatment approach for them.

As a part of that initial evaluation, we need to know more about where their disease is and in lymphoma. We often use a PET-CT, which is a special type of scan that sort of lights up areas that can be involved with lymphoma. In some cases, we do a bone marrow biopsy, although that is less indicated now because of how good the PET scans are, and then we talk about other testing, a lot of the chemotherapies can cause problems to your heart, so we often do an ultrasound of your heart to make sure it’s healthy enough to be able to tolerate some of the regimens that we consider for this disease, and then we talk about access in terms of how are we going to get the chemotherapy into the patient, and whether or not they would need a device like a port. But the main focus of the conversation is explaining the disease, teaching about the disease and focusing on that unlike other cancers, even stage III or IV diffuse large B-cell lymphoma is a curable entity, and the key is moving promptly getting the workup done in an efficient but complete manner and then initiating a treatment plan. 

Lisa Hatfield:

Right, thank you. And if you had one tip for patients when they first come in, what would you tell this patient that’s coming to see you in? 

Dr. Nirav N. Shah:

Yeah. I think my activation tip would be to learn as much as they can about this diagnosis and take notes, because I know that often patients in that first visit don’t really register everything. Just because they’re feeling overwhelmed.


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[ACT]IVATED DLBCL Resource Guide

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