Small Cell Lung Cancer and Immuno-Oncology | What Patients Need to Know

/in , , , , , , , , , , , , , /by

Small Cell Lung Cancer and Immuno-Oncology | What Patients Need to Know from Patient Empowerment Network on Vimeo.

What do immuno-oncology advancements mean for limited stage and extensive stage small cell lung cancer (SCLC)? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains the research advancements in immuno-oncology and the status of these treatments and clinical trials for LS-SCLC and ES-SCLC patients.

[ACT]IVATION TIP

“…patients who are diagnosed with small cell lung cancer should ask a doctor, ‘What about immunotherapy? Is that the right thing for me?’”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Road with options of paths to take

 Question marks

 Doctor speaking with male patient

Key Resources for Small Cell Lung Cancer Patients and Families

Transcript:

Lisa Hatfield:

Could you please explain research advancements in immuno-oncology and what this means for limited and extensive stage small cell lung cancer patients? And which patients have access to that?

Rafael Santana-Davila:

So, immuno-oncology is something that has completely changed the paradigm of treatment of patients with cancer, and very rough explanation, very simple is treatment that augments a patient’s own immune system so the immune system can recognize the cancer. This has changed dramatically how we, treat many cancers and many cancers, or sorry, many patients, when this is successful, can have very long survivals thanks to development of immunotherapy.

So, a few years ago, there were clinical trials that showed that the addition of PD-L1 inhibitors, which are a type of immunotherapy added to chemotherapy can both extend the duration of what we call progression-free survival, which is the amount of time before the cancer grows, as well as overall survival, which is obviously how long a patient lives.

But the addition of these medications can extend both of these numbers and is helping patients live longer. This was an extensive stage. So today there are two drugs that are approved by the FDA to add to the addition of chemotherapy. There are atezolizumab (Tecentriq), and durvalumab (Imfinzi). They are, in our eyes, equal.  One is not better than the other. And they are added to chemotherapy. Chemotherapy is continued for, in the majority of cases, for four cycles, and then patients go on to receive immunotherapy by itself. This is an extensive stage lung cancer. A limited stage lung cancer, there are current clinical trials that are asking the question of whether these medications are also worth it, do they improve things?

We do not know the answer to that question as of today. We are also very hopeful that they do, but we’re waiting for the results of those clinical trials. So which patients have access to it today is those patients that have extensive stage disease and that is the standard of care. So an activation tip for this is patients who are diagnosed with small cell lung cancer should ask a doctor, “What about immunotherapy? Is that the right thing for me?”

And in the great majority of extensive stage disease, they will be eligible for unless there are contraindications. Some very main contraindications is a history of autoimmune diseases or patients that are in immunosuppressive drugs, but that is a minority of patients.

Share Your Feedback:

Create your own user feedback survey

Small Cell Lung Cancer Care and Outcomes in Underrepresented Communities

/in , , , , , , , , , , , , , /by

Small Cell Lung Cancer Care and Outcomes in Underrepresented Communities from Patient Empowerment Network on Vimeo.

How does small cell lung cancer (SCLC) care look in underrepresented communities? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains how health outcomes differ in some ZIP codes and shares advice for questions to ask your doctor to access optimal SCLC care.

[ACT]IVATION TIP

“…patients should ask their doctors, ‘What are the latest advances in this disease? Am I eligible for it to receive those advances? And where can I see a sub-specialist in this disease? And is it a worthwhile point?’”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Body showing lung cancer

 Question marks

 Doctor speaking with male patient

Key Resources for Small Cell Lung Cancer Patients and Families

Transcript:

Lisa Hatfield:

Does treating small cell lung cancer patients in underrepresented communities look different than the general population? And are there specific considerations or recommendations SCLC patients from underrepresented communities when it comes to treatment options, including clinical trials or targeted therapies?

Rafael Santana-Davila:

In the majority of cases, patients treated in underrepresented communities do not look different than in the general population in small cell lung cancer. Why? It’s because community oncologists are very good. So they have a hard job, but they’re very good. So the majority of patients get the standard of treatment.

Although we know though that patients with underrepresented communities do fare worse.  And we do not know the reasons for that. A lot of that is because of poverty or many other things. I’ve seen people say that one of the main factors that will determine how long you live is what ZIP code you were born in. So underrepresented communities do do worse in general, not specifically for small cell, but in general.

I do think that what we..like we said before is what patients need to do is advocate for themselves and ask their doctors, “Am I eligible for a clinical trial? Am I eligible for what is the latest and greatest for the disease? Any new advances that you see coming?”And like we said before is seek a second opinion with a sub-specialist in the treating of this disease.

So as like we said before in terms of activation, is you need to…patients need to ask their doctors, “What are the latest advances in this disease? Am I eligible for it to receive those advances? And where can I see a sub-specialist in this disease? And is it a worthwhile point?” Many times it may not be an initial diagnosis, but when patients have recurring disease, that’s when clinical trials are really important because that’s where we’re making the most advances in the treatment of small cell lung cancers, when patients have disease that has recurred despite chemo-immunotherapy.

So my activation tip for this is that patients should ask their doctors, “What are the latest developments in the treatment of this lung cancer? And am I eligible to receive those treatments? And is this a time where I should seek a second opinion or be referred to a clinical trial and another center?”

Share Your Feedback:

Create your own user feedback survey

What Treatment Options Are Available for Small Cell Lung Cancer?

/in , , , , , , , , , , , , , /by

What Treatment Options Are Available for Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

What do extensive stage small cell lung cancer (SCLC) and limited stage SCLC patients need to know about treatments? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares a status update on where treatment options stand and discusses how he works with patients on treatment decisions.

[ACT]IVATION TIP

“…patients need to make sure that they know what the goals are. ‘What is…where am I going to…how am I going to feel in the next month? What is the likelihood that this cancer is going to shrink and this cancer is going to make me live longer?’”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Body showing lung cancer

 Question marks

 Doctor looking at a scan of lungs.

Small Cell Lung Cancer | Hope for Treatment Advancements

Transcript:

Lisa Hatfield:

So what is the latest information related to treatment options for limited stage LS and extensive stage ES small cell lung cancer? And how do you work with your patients to make treatment decisions about that?

Rafael Santana-Davila:

So this is, unfortunately, a disease where little progress has been made throughout the years because it’s a very aggressive disease. And the main improvement that has been made in the last five years is the addition of immunotherapy to chemotherapy in patients with extensive stage disease. There have now been several clinical trials that have shown that adding immunotherapy improves overall survival. That means that patients live longer.

And there is a very small, but a few patients that have, that see survival into the many years, which is something that was unthinkable before the era of immunotherapy. We do not know if the addition of immunotherapy to limited stage disease, which treatment is, in the majority of cases, chemotherapy and radiation, we do not know if that works or not, that there are clinical trials that are going on, most of them have completed accrual, so we’re just waiting for the data to mature to let us know if that is something that also works there.

We have a lot of hope that it’s the case, but right now, in September 2023, we do not know the answer for that. What I work…how I work with patients to make treatment decisions is I present them with the options of the treatment. So there are always options from being as aggressive as we can to treat it, to try to shrink the cancer, which, many times, comes at the price of side effects to just doing best supportive care, which is we know that sometimes shrinking the cancer is not what is going to make people live longer.

So it’s a conversation that we constantly have with patients where we say, “This is what we propose, this is what the consequences of treatment is going to be, and these are the alternatives.” And you have to work with them depending on their goals, depending on what they want to achieve, you make treatment decisions.

Ultimately, what I tell my patients is, “You’re the captain of the ship. I’m here just to help you navigate these rough waters, but, ultimately, you’re the one that needs to tell me where we want to go.” Okay. An activation tip is patients need to make sure that they know what the goals are. “What is…where am I going to…how am I going to feel in the next month? What is the likelihood that this cancer is going to shrink and this cancer is going to make me live longer?” Those are the questions that they need to make sure they understand.

And something that also they want to know is, what are the goals? It’s very different when you see a very young patient, their goal is to see their high school kid enter college than a 90-year-old patient that their goal is maybe to live the rest of their life with the least intervention or with the least side effects possible. So every patient has different goals. 

Share Your Feedback:

Create your own user feedback survey

Key Questions to Ask About Extensive Stage Small Cell Lung Cancer

/in , , , , , , , , , , , , , /by

Key Questions to Ask About Extensive Stage Small Cell Lung Cancer from Patient Empowerment Network on Vimeo.

What should small cell lung cancer (SCLC) patients ask to help prepare themselves? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares how he explains small cell lung cancer, particularly extensive stage SCLC to patients and key questions to ask about treatment and care.

[ACT]IVATION TIP

“…you need to talk to your doctors and say, ‘Okay, what am I looking at? What are the goals of treatment? How am I going to feel in the next month? How am I going to feel in the next three months? And where am I going to be in the next six months? And what is my prognosis? And what do you expect to happen?’”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Body showing lung cancer

 Sign saying what you need to know.

 Doctor looking at a scan of lungs.

Small Cell Lung Cancer | Hope for Treatment Advancements

Transcript:

Lisa Hatfield:

Dr. Santana-Davila, how do you explain extensive stage small cell lung cancer to your newly diagnosed patients? And what are key questions that patients and families should ask at the outset of their care?

Rafael Santana-Davila:

Oh, great. Thank you. Thank you for that. That is a great question. So patients who have metastatic small cell lung cancer, which is the majority of those with extensive stage, it’s a disease that is not curable, that we treat with chemotherapy and immunotherapy, that the majority of patients have a great response to treatment.

But our goal of treatment is to make patients feel better and have patients hopefully live longer. One of the key questions that families should ask at the outset of care, and this is for extensive stage cancer as well as any other cancer, is “What are the goals of treatment? What do I expect it to be? How is my life going to look a few months from now? And what can I expect?” That is, for me, very important that patients know before they start on the journey of treatment.

How do I explain what extensive stage is? What does it mean…how I explain this to patients is this is a cancer that has arose in your lung and has moved to other places. So we cannot cure it. We can treat it. We can hopefully shrink it and help you to live longer and live better. The majority of patients that present with this disease present with a lot of symptoms. They present with symptoms from the cancer. And many times it’s an emergency to try to treat them as soon as possible.

So this is a conversation that we have with them that we tell them, “It’s very likely that you will feel better, that you’ll respond to treatment.” But again, an activation tip is you need to talk to your doctors and say, “Okay, what am I looking at? What are the goals of treatment? How am I going to feel in the next month? How am I going to feel in the next three months? And where am I going to be in the next six months? And what is my prognosis? And what do you expect to happen?” 

Share Your Feedback:

Create your own user feedback survey

What Is the Difference Between Limited Stage and Extensive Stage Small Cell Lung Cancer?

/in , , , , , , , , , , , , , /by

What is the Difference Between Limited Stage and Extensive Stage Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

Limited stage and extensive stage small cell lung cancer (SCLC) are two different types, but how do they differ? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains limited stage SCLC versus extensive stage SCLC, treatment methods for each type, and the importance of communication.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Question marks

 Lungs with lung cancer ribbon

 Doctor looking at a scan of lungs.

Small Cell Lung Cancer | Hope for Treatment Advancements

Transcript:

Lisa Hatfield:

Can you explain the difference between limited stage and extensive stage small cell lung cancer, please?

Rafael Santana-Davila: 

So this is actually a historical definition. Back in, I don’t know the date exactly, but somewhere in the 1980s, how we treated this was when patients…the radiation doctor could treat all the area of disease with radiation, then we call that limited. And limited stage disease means that the person, the patient can get radiation and chemotherapy with the goal of eradicating the disease. Extensive stage is when the disease cannot be treated with a single area of radiation.

In the majority of cases, there’s a very clear distinction, for example, patient has metastatic disease to the liver, that clearly is extensive, stage, but there are occasions where, limited and extensive is very hard to know and the radiation doctor would…two different radiation doctors will give you two different things.

And the important thing in this case is that this is a…all of medicine is a team sport, but treatment of cancer is more because the medical oncologists need to talk to the radiation oncologists to make sure that we’re on the same page as to what is the best treatment we can offer a patient. 

Share Your Feedback:

Create your own user feedback survey

Battling Small Cell Lung Cancer | One Man’s Journey

/in , , , , , , , , , , , , , /by

Battling Small Cell Lung Cancer | One Man’s Journey from Patient Empowerment Network on Vimeo.

Terrence’s diagnosis with extensive stage small cell lung cancer (SCLC) came as a shock. He learned the value of a positive attitude and how “just as in battle, I understood early on that a solid partnership with my healthcare team would be crucial to my outcome.” He shares his perspective, lessons learned, and how to stay [ACT]IVATED in your care.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Lessons From a Small Cell Lung Cancer Care Partner

 Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains

 Small Cell Lung Cancer Care | Communication As a Key

Small Cell Lung Cancer Care | Communication As a Key

Transcript:

My name is Terrence, and I’m living with extensive-stage small cell lung cancer (SCLC). This diagnosis came as a shock, but I decided to persevere and fight. Cancer care can feel like a marathon, and certainly not a sprint – particularly for patients like me. As a small cell lung cancer survivor, I want to share my perspective and lessons learned from my cancer journey about staying ACTIVATED in your care.

My symptoms started with a cough that wouldn’t go away. As a military veteran, I assumed the cough was something I picked up years earlier. And even though I had been a smoker, my doctor didn’t order any scans as a pre-emptive screening measure, nor did I know what questions to ask. It wasn’t until I found a lump under my arm that further testing was done. It was at that time that I also put the other pieces of the puzzle together, which included symptoms of higher than normal blood pressure and knee pain.

I received chemotherapy and radiation, and also quickly learned that despite the challenges of treating my cancer, maintaining a positive attitude was the most critical part of my regimen. I was fortunate to have a medical team that listened to me and didn’t dismiss my concerns. Just as in battle, I understood early on that a solid partnership with my healthcare team would be crucial to my outcome.

Under the care of my healthcare team, I continue to receive scans of my lungs and brain every three months and feel grateful to be doing well. My care team and I also actively look for clinical trials that may be right for me. I urge other small cell lung cancer patients to ask your care team questions to learn about treatment options and what to expect during and after treatment – you matter. 

For the past decade, there have been a lot of research advancements about non-small lung cancer (NSCLC) treatment, but our small cell lung community is feeling left out of conversations about investments to improve lung cancer diagnosis and treatment. The SCLC patient community also deserves improvements in care and treatment. Fortunately, things are changing. Progress in personalized medicine has allowed scientists to develop targeted therapies tailored to a patient’s body using their genes to prevent, diagnose, or treat an underlying disease. Clinical trials are one opportunity to be on the ground floor of these developments where you may be able to get tomorrow’s medicine today. I hope sharing my perspective will make a difference for others. 

While the battle ahead has uncertainties, stay [ACT]IVATED with these tips:

  • Don’t allow stigmas to keep you from getting the best care, now is the time to get the right care no matter how you got the cancer.
  • Ask your care team questions to learn about small cell lung cancer treatment options and what to expect during and after treatment.
  • Ask if a clinical trial may be a potential treatment option for you.
  • Stay abreast of small cell lung cancer treatment options and research advancements.

Whether it’s combat in war or fighting cancer, no matter who you are, take it from me, attitude is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in your small cell lung cancer care.

Share Your Feedback:

Create your own user feedback survey

Lessons From a Small Cell Lung Cancer Care Partner

/in , , , , , , , , , /by

Lessons From a Small Cell Lung Cancer Care Partner from Patient Empowerment Network on Vimeo.

As a small cell lung cancer (SCLC) care partner, Anita learned things during her husband Terrence’s cancer journey that she’d like to share to help others. “Communication with the healthcare team and learning about your loved one’s cancer are key to supporting their cancer journey.” She shares lessons learned and specific advice for how to support your loved one in their cancer care.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Battling Small Cell Lung Cancer | One Man’s Journey

 Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains

 Small Cell Lung Cancer Care | Communication As a Key

Small Cell Lung Cancer Care | Communication As a Key

Transcript:

Staying ACTIVATED in your loved one’s cancer care is essential to becoming informed, empowered, and engaged in their care, take it from me. My name is Anita. As a care partner to my husband Terrence who has extensive-stage small cell lung cancer (SCLC), I want to share my perspective and lessons learned from his cancer journey. 

It was difficult seeing my husband Terrence struggle with a cough that wouldn’t go away. We also now know that he should have received lung cancer screening due to his past history of smoking. As a care partner, I blamed myself for not speaking up at his earlier appointments. How could I have advocated differently?

Though it was challenging learning that the extent of his cancer may have been prevented with recommended screening, I want to share my lessons learned to help other patients and care partners who may be struggling with the impacts of cancer.

Ongoing communication with the healthcare team and learning about your loved one’s cancer are key to supporting their cancer journey. To help your loved one, you can join them at their doctors’ appointments to serve as a second set of ears, to take notes, to ask questions, and to assist in the shared decision-making process. Staying [ACT]IVATED as a care partner continues to be key in helping Terrence connect to the right care at the right time.

My [ACT]IVATION tips for other care partners are to:

  •   Ask the stage of the cancer and what the lab test results mean.
  •   Inquire about treatment options and what the doctor recommends for treatment.
  •   Find out if there’s a clinical trial that is a treatment option.
  •   Pose questions about the goal or goals of treatment.
  •   Learn what to expect from treatment impact on daily life and ask about support services.
  •   Inquire about who you can contact about side effects or other issues.
  •   Avoid care partner burnout, ask someone for help to ensure you get some self-care and time to recharge.

If you’re a care partner helping a loved one in the fight against small cell lung cancer, knowledge is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in their care.

Share Your Feedback:

Create your own user feedback survey

Why Test Results Matter | Accessing Personalized Non-Small Cell Lung Cancer Treatment Resource Guide

/in , , , , , , , , , , /by

Download This Guide

PEN-182_InsistLC_ResourceGuide_100323_F

Download This Guide

See More from INSIST! Lung Cancer

Cancer Patient First Office Visit Planner

/in , , , , , , , , , , , , , , , /by

Download Planner

Patient First Office Visit Planner

Download Planner

Cancer Patient Follow Up Visit Planner

/in , , , , , , , , , , , , , , , , , , , , , , , , , /by

Download Planner

Patient Follow Up Visit Planner

Download Planner

[ACT]IVATED NSCLC Patient and Care Partner Stories

/in /by

From a Swallow Test to an NSCLC Diagnosis: Heather’s Story

From a Swallow Test to an NSCLC Diagnosis Heather’s Story from Patient Empowerment Network on Vimeo.

Transcript:

My name is Heather, and I was diagnosed with stage IV non-small cell lung cancer (NSCLC). My diagnosis came as a shock after going to my doctor due to a sensation of food getting stuck in my throat. It wasn’t the first time that I felt this in my throat, so my primary care physician sent me for a swallow study to further investigate. They also took a biopsy of a stomach polyp at this time, which turned out to be cancerous. 

I was surprised to learn I had cancer but was even more shocked after scans revealed that I had metastatic lung cancer. Of course, I know now that nonsmokers can get lung cancer too. With being a wife and mother, I wanted to get back to my life with my husband and three children. 

Further testing revealed that I had EGFR exon 19 mutation, which causes cancer cells to grow out of control. I was placed on the standard of care treatment of osimertinib (Tagrisso) that I received in three-month increments. Though I experience some treatment side effects, I continue taking the medication as prescribed to continue life with my family. I want to see my children grow up, and I’ll continue with osimertinib as long as possible. I also feel hopeful that clinical trial participation will continue to bring new effective NSCLC treatments to patients who eventually need additional treatment options.

Some things that I’ve learned on my lung cancer journey include:

  • If you feel that something is not right with your health, go see your doctor as soon as possible.
  • If you’re unsure about anything with your diagnosis, ask questions to ensure you’re getting all the testing that you need for optimal care.
  • Get a second opinion and don’t rush to initial treatment, as it may disqualify you from a clinical trial.
  • Clinical trials play a vital role in prolonging life and giving hope to further the number of FDA-approved drugs.

For me, these actions are key for staying on the path to empowerment.

My Dad’s Lung Cancer Diagnosis Shridhar’s Care Partner Story

My Dad’s Lung Cancer Diagnosis Shridhar’s Care Partner Story from Patient Empowerment Network on Vimeo.

Transcript:

My dad Kisan was diagnosed with stage IV non-small cell lung cancer in September 2021. I’m his son Shridhar, and we live in Mumbai, India. My dad was diagnosed in his late 50s, and his symptoms began with severe headaches that were misdiagnosed by the general physician as symptoms of COVID-19. 

When he went to another doctor about the headaches, his symptoms worsened to the point that he couldn’t even walk. He then received an MRI the next day, and we were shocked to learn that the MRI showed he had 12 to 15 brain tumors, which suggested malignancy.

My dad was then sent to a neurosurgeon who suggested brain surgery for him followed by a PET CT scan to rule out malignancy. We then sought a second opinion from a medical oncologist, and he advised against having the surgery. However, he did recommend getting a PET CT scan done right away. After my dad received the PET CT scan, he received his cancer diagnosis and was referred to a radiation oncologist for SBRT for the brain tumors.

My dad also has an EGFR mutation, and lung cancer has progressed three times, but he’s been able to switch treatments each time and is doing well. His treatments have included radiation, followed by oral targeted therapy of afatinib, followed by chemotherapy and osimertinib, followed by radiation again and then chemotherapy. He then had a biopsy that found he had a MET mutation and is currently on targeted therapy and is doing well.

Even though he was given a prognosis of 6 months left to live by the radiation oncologist, he chose not to believe that and is living a normal life over a year-and-a-half later. I think it’s also important to note that my dad didn’t research on the Internet after he was diagnosed with NSCLC.

Our whole family has learned a lot on his cancer journey. Some of the things we’ve learned on his lung cancer journey include:

Educate yourself and ask your doctors questions. Learn about the available treatment options and discuss each one with your doctor. There’s nothing wrong with asking questions, and doctors expect patients and loved ones to have questions.

It’s always a good idea to seek a second opinion; especially in the cases of risky procedures like brain surgery. Seeking a second opinion is nothing to feel guilty about, and you or your loved one’s life depends on an accurate diagnosis.

Avoid negative doctors and don’t believe a death sentence in a cancer diagnosis. Just because a member of your care team says you don’t have long to live doesn’t mean it’s written in stone. My dad has defied the 6-month prognosis given by his radiation oncologist.

Ignorance can sometimes be bliss. Learning too much about your cancer may lead to a lot of worry, anxiety, and stress. Could it serve your health better for a care partner or family members to learn more about your cancer to ease some of your stress level?

Become comfortable with the idea of death no matter what age you are. Death is a natural part of life. Everyone dies sooner or later. Nobody is immortal. Worrying about death too much causes undue stress, and stress isn’t good for anyone.

As a care partner, these actions were key for staying on the path to empowerment. 

Three Factors That Determine Myeloma Treatment Decisions

/in , , , , , , /by

What are the key factors under consideration to determine a multiple myeloma treatment approach? In “Key Factors That Guide Myeloma Treatment Decisions” program, expert Dr. Joshua Richter from Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai explains how to determine optimal approaches.

 1. Disease-Related Factors

The growth rate of myeloma – whether fast-growing or slow-growing – is a key factor in treatment decisions. Treatment in pill form may be an option for slow-growing myeloma, while intravenous or other treatment methods may be necessary to treat fast-growing myeloma. 

2. Treatment-Related Factors

A myeloma specialist will also take treatment-related factors into account. Some of these considerations will include issues like whether a patient stopped responding – or was refractory – to another treatment. Or if a patient experienced treatment side effects that couldn’t be lessened enough through adjusting dosage or by other means, that should be considered as well.

3. Patient-Related Factors

Myeloma treatment options must also take other patient health concerns into account. Considerations like physical fitness, kidney health, heart health, and medical problems like high blood pressure and diabetes must be considered. In addition, the patient’s myeloma symptoms must be weighed in the analysis for treatment decisions.

Myeloma specialists have some key factors to consider in narrowing down an optimal treatment approach. If you’d like to learn more about multiple myeloma, check out our multiple myeloma information.

INSIST! on Better Lung Cancer Care Resource Guide

/in , , , , , , , , , , /by

Download This Guide

InsistLC_DownloadableGuide_F

Download This Guide

See More from INSIST! Lung Cancer

Internet Access, Digital Literacy, and Bridging the Digital Divide

/in , , /by

In the modern healthcare era along with navigating COVID-19 infection concerns, Internet service and digital literacy are more important than ever for cancer patients and their loved ones. Telemedicine serves cancer patients with multiple benefits, some of which include protecting them from infection and virus risks, providing easy ways to refill prescriptions, schedule appointments, and view test results; and reducing time, costs, and stress of traveling to and from appointments. 

Internet Access, Digital Literacy, and the Digital Divide

Yet cancer patient advocates must look closely at Internet access, digital literacy, and the digital divide to support more underrepresented patients. A recent National Cancer Institute study of cancer patients and caregivers showed that 90 percent had Internet access, and 82 percent owned a smartphone. While these statistics look promising, there is still more work to be done to help underrepresented patients. Examining results from a recent study of rural cancer survivors reveals a digital divide. Medicare-covered cancer survivors in rural areas had telehealth availability 53 percent of the time compared to 63 percent in urban areas. Rural cancer survivors are also less likely to own desktop computers, laptops, smartphones, or tablets at a rate of 67 percent versus urban cancer survivors at 82 percent. Internet access also needs improvement with Medicare-covered rural cancer survivors at 58 percent access versus 79 percent in urban areas. 

Furthermore, Black and Hispanic survivors had lower technology ownership, with 65 percent of Black survivors and 67 percent of Hispanic survivors owning a desktop computer, laptop, smartphone, or tablet versus 82 percent of white survivors. “Despite the potential of telehealth to meet the unique healthcare needs of cancer survivors (e.g., surveillance, comorbidities, primary and survivorship care), some patient groups face greater barriers to technology access,” the study authors wrote. “These patterned differences in use and access underscore a need to engage multilevel interventions to mitigate the underlying barriers to telehealth use.” 

U.S. Financial Support of Digital Healthcare Access

What can vulnerable cancer patients do to improve their situation if they’re lacking in Internet service or technology literacy? Fortunately, President Biden has put racial equity at center stage of his agenda and is working to end disparities in healthcare access and education. The  Coronavirus Aid, Relief, and Economic Security (CARES) Act helped provide telehealth and connected care services to patients, and the proposed infrastructure bill could help extend support. The U.S. federal government has taken action to help those in need of Internet service or improved Internet service. As part of the Bipartisan Infrastructure Law, President Biden and Vice President Harris operated with Democrats, Republicans, and Independents to create the Affordable Connectivity Program (ACP), as part of the Bipartisan Infrastructure Law. The ACP provides eligible households with a high-speed Internet plan for no more than $30 per month. The Biden-Harris Administration has received commitments from some leading internet providers to offer ACP-eligible families who pair their ACP benefit with one of these plans to receive high-speed Internet at no cost. You can easily check to see if you qualify here.

Digital Literacy Training

For those looking to improve their digital literacy, Patient Empowerment Network can help people build their skills. The PEN digital sherpa® Program and Digitally Empowered® Course help cancer patients (mainly 65 and older) and their families become better prepared for their cancer journey. The goal is for participants to learn to use technology to their advantage and to become more tech-savvy. The program’s workshops help educate patients and care partners in basic Internet and social media skills to help them in their search for information about their illness and support resources for themselves and their families.

University students, known collectively as “sherpas,” have been specially trained by the Patient Empowerment Network to offer technology skills and are paired with program participants. The sherpas empower patients and care partners by training them in skills such as: 

  • Safely navigating online healthcare resources
  • Finding credible online resources
  • Forming online disease support communities
  • Using telemedicine
  • Navigating your health with social media
  • Using rideshare and wellness apps
  • Following and connecting with experts online

The Digitally Empowered Course opens access to a whole new world of knowledge and tools to assist you in researching your condition, asking informed questions, and taking an active role in shared decision-making with your care team. The 10-module Digitally Empowered course trains participants in:

  • How to access the Internet
  • Identifying credible resources and websites
  • The benefits of your patient portal
  • Using social media to connect and learn
  • Navigating your health with mobile devices
  • Apps to use for convenience and fun
  • How to use telemedicine
  • Accessing and joining online support communities

The pandemic brought some issues to light about gaps in Internet service and digital literacy. But vulnerable and underrepresented cancer patients and their loved ones no longer need to remain in that state. They now have options to move them toward becoming empowered and informed. 

Empowered and tech-savvy patients have the ability to build more support for themselves and to build knowledge and confidence. With increased confidence, patients feel more at ease to ask questions when they interact with their healthcare team members. This fortified knowledge and confidence then empowers them to make more informed decisions for optimal health outcomes and improved quality of life for patients. These results make a clear win-win for formerly underrepresented cancer patients and for those who work to support these patients.

Sources

https://mhealthintelligence.com/news/rural-cancer-survivors-report-low-telehealth-availability-internet-access

https://pubmed.ncbi.nlm.nih.gov/34428075/

https://www.whitehouse.gov/getinternet/?utm_source=getinternet.gov