Tag Archive for: cancer

Understanding Your Role in Your Ovarian Cancer Care Resource Guide

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Understanding Your Role in Your Ovarian Cancer Care

 

What steps can ovarian cancer patients take to be proactive in their care? This animated video shares tips and advice for speaking up, engaging in decisions and tips for learning more about ovarian cancer.

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Related Resources:

Becoming Empowered and [ACT]IVATED After An Ovarian Cancer Diagnosis 

Comprender su Papel en su Cuidado del Cáncer de Ovario

Comprender su Papel en su Cuidado del Cáncer de Ovario

Optimizing Ovarian Cancer Care: Genetic Testing and Treatment Approaches

Optimizing Ovarian Cancer Care: Genetic Testing and Treatment Approaches

Transcript:

Dr. Thompson:

Hi! I’m Dr. Thompson, and I specialize in treating gynecologic cancers, which are a group of cancers that impact a woman’s reproductive organs.  

Today, I’m here with Sarah, who’s living with ovarian cancer. 

Sarah:

Hi everyone! In this video, Dr. Thompson and I will discuss the important role that patients play in their care and will share steps you can take to feel confident when making decisions WITH your healthcare team. 

Dr. Thompson:

And Sarah and I know firsthand that this starts with finding a healthcare team that supports you. Feeling at ease when discussing your thoughts and concerns is crucial, because sharing your input can impact your overall care.  

Sarah:

Absolutely. When I was first diagnosed, I felt anxious and overwhelmed, but Dr. Thompson encouraged me to ask questions, which helped me feel more in control.  

I also found that seeking care from a specialist made a big difference. Dr. Thompson, can you talk about why that’s so important? 

Dr. Thompson:

Of course, Sarah. Specialists, like gynecologic oncologists, have the expertise to provide the most up-to-date treatments and recommendations for ovarian cancer. They can offer a more personalized approach to your care, which can help manage the disease more effectively. 

Sarah:

Exactly—collaborating with a specialist boosted my confidence in my treatment choices. It also made me realize the importance of learning about my cancer, so I could participate in conversations about my care. 

Dr. Thompson:

Absolutely, Sarah. Educating yourself is another key step in feeling empowered. When you understand more about your disease, your diagnosis, and available therapies, it helps you make decisions that are best for you.  

And to help you learn more about your ovarian cancer, here’s my advice for where to start:  

  1. Learn about your specific diagnosis: Ask your doctor about the type and stage of your ovarian cancer. This information will guide your treatment options. 
  2. Additionally, ensure you have had biomarker testing, including genetic testing: The test results will help you and your care team better understand your diagnosis and may affect therapy.  
  3. Prioritize your mental health: Managing a cancer diagnosis can be emotionally challenging. Seek support from mental health professionals or support groups to help cope with anxiety and stress. 

Sarah: I completely agree, Dr. Thompson. And, there are also plenty of resources available which provide valuable information. Here are few reputable resources you can rely on: 

Dr. Thompson, what advice do you have for getting the most out of your time with your provider? 

Dr. Thompson: Great question, Sarah. Here are a few tips: 

  • First, be prepared: Write down any questions or concerns you have before your visit.  
  • Then, take notes: Bring a notebook or something to record details during your appointment. 
  • Also, bring a friend or family member: Having someone with you can provide emotional support and help you to remember the information shared. 
  • Finally, discuss your goals: Be clear about your treatment needs and any lifestyle concerns you may have. Don’t hesitate to speak up during the visit and to ensure all of your questions have been answered.  

Sarah:

Those are really helpful tips. Having my sister with me during appointments was comforting, and she often thought of questions I hadn’t considered. 

Dr. Thompson:

That’s a great point, Sarah. Remember, you are the center of your care team. Stay engaged and never hesitate to reach out if you have questions or don’t understand something. 

Don’t forget to download the guide that accompanies this video. And for more information about ovarian cancer, visit powerfulpatients.org. 

How Can CLL Patients and Providers Be Empowered for the Best Care?

How Can CLL Patients and Providers Be Empowered for the Best Care? from Patient Empowerment Network on Vimeo.

Experts Dr. Andres Chang from Emory University and Dr. Daniel Ermann from Huntsman Cancer Institute highlight the importance of educating patients about their disease, treatment options, and potential side effects, while emphasizing the value of a collaborative medical team.

Download Resource Guide  | Descargar guía de recursos

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Related Resources:

The Role of Patient Education in Managing Treatment-Related Side Effects in CLL

The Role of Patient Education in Managing Treatment-Related Side Effects in CLL

Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

Can Digital Tools Enhance Side Effect Management in CLL?

Can Digital Tools Enhance Side Effect Management in CLL?

Transcript:

Dr. Nicole Rochester:

I’d love to get closing thoughts from each of you. And I’ll start with you, Dr. Chang. What is the most important takeaway that you want to leave with those healthcare providers who are listening and watching this program?

Dr. Andres Chang:

Yeah, I think that the most important takeaways are actually two things, I think. One is really, really important to educate patients about their disease, about their treatment, about the potential side effects, and also to try to anticipate and mitigate those potential side effects so that patients know exactly what they’re expecting.

And then the second thing is really essential to have a great team around you because practicing medicine, particularly oncology, is not a solo practice. We really need a village to take care of our patients. And so having well-trained nurses, having excellent clinical pharmacists, all of them are essential members of the team that will help with patient care.

Dr. Nicole Rochester:

Wonderful, Dr. Chang. Thank you. And, Dr. Ermann, what are some closing thoughts you’d like to leave with our audience today?

Dr. Daniel Ermann:

I would say don’t be afraid. In medicine, there’s often this thought that reducing treatment doses or things like that is a bad thing and you shouldn’t do it. I would say I would empower providers to not be afraid to dose-reduce, especially to mitigate very undesirable toxicities. So I’d say don’t be afraid to dose-reduce. There’s a lot of, at least in some of our medications, good efficacy data showing that dose reductions can have similar, if not the same, efficacy profile while mitigating toxicity. So I would say don’t be afraid to dose reduce, especially if the toxicities are not improving. Don’t be afraid to dose-hold.

And when it comes to empowering our patients more, I’m a big advocate on empowering patients. Particularly diseases like CLL, where two-thirds of patients at diagnosis don’t require treatment, and they’re told that they have cancer, and then all of a sudden they’re told that they don’t need treatment can be very scary. And I think that’s when patients feel like they have their disease understood and that they’re doing the best that they can for their own disease, it makes it better for everyone involved.

So I think empowering both providers and patients is kind of the optimal way to do things. And those are the best patients. When you deal with someone who knows their cancer, knows what’s going on, sometimes I get patients they know as much or more than me and I’m like, wow, this is incredible. Those are the best.

Dr. Nicole Rochester:

That is such a perfect way to end this program. An empowered patient is the best patient.


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Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina discusses the importance of seeking third-party support for managing mental health issues and provides guidance on addressing sexual health concerns during myeloma treatment. 

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

Related Resources:

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

Myeloma Symptom Management | An Expert’s Approach

Myeloma Symptom Management | An Expert’s Approach

Transcript:

Katherine Banwell:

If a patient or a caregiver is having trouble managing the emotional side of myeloma, whether that be anxiety, depression, or other mental health issues, how do you encourage them to cope with those feelings?  

Daniel Verina:

I think it’s always good – multiple times I say they always should talk to a third party. So, either reach out to our social worker team who are phenomenal at helping support patients, but even reaching out to psychiatrists or psychologists and getting another perspective. It is good to have a friend. It’s good to have family to discuss and talk to, but sometimes, I think, sometimes having somebody so close may not have the best perspective.  

But so, getting a third opinion or a clear lens in discussion to help guide them is a great way to do it. I also advise caregivers because of the burden of the calendars and the different tasks they have to do, I tell – even with my patients, I tell them to journal. Journal their day. Be able to get out there their voice from their mind into a piece of paper to help clear the mind and give clarity to move on for their next steps. It is a challenge.  

Katherine Banwell:

And you’re saying that that psychological support for the caregiver is just as important.  

Daniel Verina:

Absolutely. It’s the patient who also has cancer so does the caregiver have cancer too. So, you’re treating two people, not just the person who you’re giving the therapy to.  

Katherine Banwell:

We were talking about supporting the care partner and the patient in terms of mental and physical well-being. There’s a sexual aspect to that as well, right? 

Daniel Verina:

Absolutely. I think sexuality or sexual health is extremely important. I think the fear, what I have seen in my personal experiences, and it depends on each. And each person, part of this chess game, has a different view. So, the patient is sometimes nervous because they don’t want to hurt their caregiver because they’re on chemotherapy. And then, the caregiver might feel that they’re not prepared because they don’t want to cause any injuries because they’re on chemotherapy, right? What are their counts? May I hurt them? Will I give them an infection? Things like those kinds of things.  

And sometimes in both directions that the patient may lose the libido, the desire, and it has nothing to do with the caregiver and their attraction, right? It’s a physical change that the therapies that we give may diminish some of this physicality. So, explaining that to the patient and their caregiver, but also giving them that support. Having them be able to talk to a social worker, having them being able to talk to a therapist and say, “This is what I’m experiencing. How do I cope with this?”   

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina discusses strategies to empower care partners and myeloma patients, emphasizing the long-term nature of the journey and providing guidelines for returning to activity post-treatment.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

Related Resources:

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

The Benefits of Shared Decision-Making for Myeloma Care

The Benefits of Shared Decision-Making for Myeloma Care

Transcript:

Katherine Banwell:

As a provider, Daniel, how do you empower care partners and their patients who have been diagnosed with myeloma?  

Daniel Verina:

I think with the cancer card or even myeloma, and I always say this, it’s truly a fact, I said it’s a journey. It’s a journey.  We are together. It’s the tortoise that wins the race, not the hare when it comes to myeloma. It’s very different because many patients may have an experience that a friend had a different type of cancer and their treatment ended in a year or two. So, and myeloma currently, it is a continuous type of treatment for many years.  

So, it’s getting them on board and understanding that there’s going to be wax and wanes in time. And we’re here for the long run together. I’ll ask questions continuously because every question is new to them. I might’ve heard the question 6 million times, but it’s their first time experiencing it and hearing it.  

Katherine Banwell:

Yeah. Well, and following treatment, how do you counsel patients who are returning to activity and exercise? Are there any guidelines they should follow?  

Daniel Verina:

Absolutely. I think it depends on how they feel, their physicality, depending on their age because myeloma really has now become a broad spectrum in age. Yes, it’s a more mature adult or older adult disease, but we’re seeing it happen in our patients in their 40s and their 50s. So, they want to return to activities. They say whatever they can tolerate. Making sure that they’re not doing heavy lifting because myeloma can affect the bone strength or cause fractures.

So, no power lifting or bungee jumping, I try to advise them not to do. But go back to what they enjoy the most. Bringing them back to close to what their normal living is, I think is one of the best ways that patients can tolerate it.  

Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support? from Patient Empowerment Network on Vimeo.

Where can myeloma care partners find out more about available financial support? Nurse practitioner Daniel Verina discusses avenues for navigating the financial burden of care through social workers and organizations like the International Myeloma Foundation (IMF), and the importance of asking your healthcare team for resources.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

Transcript:

 Katherine Banwell:

How can caregivers find out more about financial support? 

Daniel Verina:

I think the great thing is talk to your social worker and your institution to see what available funds, what grants that are available for them to help support them through that. Also, inquire at their employment what is available for them through there. What does their insurance actually cover, right?  

Going to the International Myeloma Foundation website or the Multiple Myeloma Research Foundation website and seeing the support that they can get through those institutions and organizations and the key tools that they have there for them.   

Katherine Banwell:

I mean, there could be something as simple as not being able to pay for parking.   

Daniel Verina:

Absolutely. And I always ask. I tell my patients, “Ask.” I’ll be honest, at my institution, I never know whether they can punch the card and get free parking or not, but I say to them, “Please ask at the front desk. Ask our social workers if there are ways.” And if they’re getting bills that we don’t understand, one thing patients need to do, and their caregivers is to bring us the bills that they have.  

Because many times, in my experience, the patient has brought me a stack of bills after four months and said, “Look what I’m getting.” I said, “Well, why didn’t you tell me a month into this, not waiting four months?” So, it’s allowing them to know bring it to us and let’s see what we can do can. We can never always guarantee that we can eradicate their bills. But what I’m saying to them is we can try.  

Katherine Banwell:

Absolutely. That’s great advice, Daniel. Thank you so much for joining us.  

Daniel Verina:

Oh, thank you so much. 

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner from Patient Empowerment Network on Vimeo.

How can care partners monitor side effects from CAR T-cell therapy? Nurse practitioner Daniel Verina discusses the unique aspects of CAR T-cell therapy, guiding care partners on recognizing side effects like cytokine release syndrome and neurological changes, emphasizing communication with healthcare providers.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

Is there anything you’d like to add about care partners and what they should know about the CAR T-cell process?   

Daniel Verina:

Absolutely. That some of the CAR T experience is that when patients reach the CAR T, they may already have a stem cell transplant earlier in their life, an autologous stem cell transplant. So, I will guide them and say there were some similar characteristics, meaning that there’s collection, there’s chemotherapy, and there’s a stay in the hospital.  

But some of the differences that their blood counts may not return as quickly as they did with an auto stem cell transplant.  So, they may see lower counts.  After a month or two, they may start to drop. So, to expect that some of these changes are normal or part of our pathway.  

But also, things that we need to look for and a caregiver should understand, that there are delayed effects, like cytokine release syndrome, or neurotoxicity’s that we see with CAR T can happen a couple of months down the line.  So, one of the important tools that a caregiver should have to watch and monitor patients longer on is being able to look for these toxicities. And there are many tools out there that are available through the IMF or the MMRF that the caregiver can say they’re not remembering as well, or I feel like they’re word searching.  

Even though the patient may come to us and sound and answer the questions appropriately, the caregiver says, you know what, I just feel like there’s something different.  And that’s a cue for us. I always call them the truth serum. The caregiver to me is the truth serum in the room.  So, I think one of those things is really teaching them to look for delayed side effects or adverse events that may occur even four, five, six months later.   

Katherine Banwell:

Can you give us an idea of what sort of side effects the care partner should be looking for? 

Daniel Verina:

So, in the hospital, patients can experience what we call cytokine release syndrome or fevers, fast heart rate, low blood pressures. And that could occur upfront, but it could happen later on in life.  Certain things also are neurotoxicity. So, having persistent headaches, memory loss, word searching, sometimes change in their gait, and sometimes even a little bit of a handshaking or tremor.  

So, neurological changes. Shuffling they may see. Weaknesses in their legs, things like that. So, they used to get up out of the chair very quickly, and now it takes them longer to do that. And those are signs that they should be calling their primary CAR T physicians and saying, “I’m seeing a change,” because the further out they go and if they’re doing successfully, we see them about every month or so compared to when they come out of the hospital. So, you want to alert the caregiver to call us as quickly and not wait until the next appointment. You never know.  

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized from Patient Empowerment Network on Vimeo.

What should care partners expect after CAR T-cell therapy? Nurse practitioner Daniel Verina offers tips for staying prepared, including advice on returning home, preparing the home post-therapy, and staying organized.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

We know that patients should be near a medical center for the first few weeks after the therapy. Do you have any organizational tips for how a care partner can best prepare for the return home?   

Daniel Verina:

Absolutely. So, yes, it is required. So, the patient generally stays in the hospital for two weeks and then it’s required for them to be very close to the hospital two weeks after that because it requires many visits. I think preparing for home is also knowing that they have adequate and support for transportation because sometimes the patient may have to come in two to three times a week for support usually in the bigger institutions.  

Also, reconnecting back with their local oncologist just to make sure that if something does happen and they can’t get to the cancer center quick enough, they have another support. And to also to be able to monitor that, make sure they have thermometers and blood pressure machines and things that are going to be there for them when they get home.  

Katherine Banwell:

Do you have any tips for making the physical space at home more comfortable?   

Daniel Verina:

You know, I always say that’s individualized and everybody’s home is different. So, it’s hard to say that. I always – I’m very minimalistic. So, I always say don’t have a lot of clutter because post-CAR T you may feel a little weak or tired. So, make sure that they’re not navigating around a lot of furniture. There’s not loose rugs, equipment like that.

They may need some support even in the showers. That they may need a shower chair depending on the patient’s physicality. But that’s a very good discussion to have before they leave the hospital. Maybe our social worker teams can set up DNS [Home Health Care] and be able to put some support into the home.    

Katherine Banwell:

Are there any supplies that care partners will need as they care for a patient at home?   

Daniel Verina:

Supplies are very simple; I’ll be honest with you. It’s generally thermometers and maybe an automated blood pressure machine, I think, and then a pad of paper and pens that work itself. And also, like I say, it’s having the transportation or having a backup of something if the patient doesn’t feel well to get there. But in supplies, no, the patient should eat what they normally eat. I would say not as spicy because they may not be able to tolerate it, but things like that.  

Katherine Banwell:

And a calendar, I would think would be pretty important.  

Daniel Verina:

I love calendars. I’m a calendar writer, so I like it usually on paper, but people like it on their phone. So, I always tell patients also to keep a diary of how they feel because they come to us and I think it’s very common where you go, I have a million questions to ask you, and then they forget. So, it’s always good to say, “Oh, he had a little – he might have had some loose stools or diarrhea on this day,” but then they forgot to tell you. So, I think it’s good to document those things. And even weight –    

Katherine Banwell:

Pardon me?  

Daniel Verina:

And even their weight. So, all their vital signs and weight should always be documented. 

Katherine Banwell:

Okay, thank you. Who is the best point of contact at a medical center if they need support?   

Daniel Verina:

It’s actually the medical team. The best support is the medical team, depending on it. So, and each institution, I’ll say, may have different ways of accessing it. We have a 24-hour hotline. So, when the patient doesn’t feel well, they can call directly in. If it’s simple questions, they can always use the EMR messaging services that we have at our institution. So, each institution may have a way of doing it, but I would say always reach out to the primary team.   

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina highlights the crucial role that care partners play during the CAR T-cell therapy process, offering advice on what they should expect throughout the journey, and emphasizing the importance of a support system and resources for patients and their care partners.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

Daniel, the care partner is a vital team member in the CAR T process. Can you explain the role of a care partner?  

Daniel Verina:

Absolutely. I think one of the key ingredients, I think, in cancer care across the board is the caregiver. I think many times it’s forgotten because we’re very focused on the patient’s needs. But entirely, it’s not just the patient who has the cancer, it’s the caregiver who actually has the cancer or bears some of the burden. So, I think it’s important to always have them involved in all of the roles and each step that the patient goes through, and also try to provide them support that they may need that’s extra, not that the patient gets.   

Katherine Banwell:

Yeah. As a nurse practitioner, Daniel, you educate care partners about the CAR T-cell process. What are three key pieces of advice you share with care partners for patients who are considering CAR T-cell therapy?   

Daniel Verina:

There’s a few. So big three key points to this is that it’s a journey. One of the things, it’s not just a quick we’re going to do this in a month and then we’ll be moving on. It’s going to be for a couple of months or a few years that we may be together during this CAR T experience, one.

There’s going to be also many trips to your facility, your institution, your cancer center that are required to even getting part of the CAR T, working up for the CAR T before even having the cells manufactured and given back to them. And I think also having an extra support for them, so the caregiver also has to have support outside of them. So, if they’re not able to make a meeting or come to an appointment, they should have a backup or somebody even just to talk to outside of just the cancer center.   

Katherine Banwell:

For care partners, what support and resources do you recommend for their mental and physical well-being when caring for a loved one who’s undergoing CAR T?   

Daniel Verina:

Absolutely. I think you could even broad span that to all of cancer care itself, but especially with CAR T. There’s many resources out there that are available. So, the International Myeloma 

Looking back at ASCO 2024

If you’ve been following PEN on social media, you know that we had a whirlwind of activity in Chicago 5/30-6/3. The American Society for Clinical Oncology (ASCO) annual conference, with more than 45,000 attendees, is more than anything else, a venue for significant results of clinical trials to be reported and – in many cases – celebrated.  

While the therapies being studied may be many years from approval for public use, we can still take hope from the positive results and innovative ideas presented. Here are a few of the exciting news items from ASCO24: 

  • Gene mutations took center stage, as advancements in therapies based on often difficult-to-treat mutations showed great promise. The KRAS gene mutation, in particular, often presents challenges in a variety of cancer types; results presented at ASCO24 show the potential of a continually expanding assortment of KRAS inhibitors. 
  • Cancer vaccines shared the spotlight, with multiple pharmaceutical companies collaborating to move innovation forward quickly. mRNA technology (in the news since 2020 because of the COVID vaccine) has been a subject of oncology research since the 1970s and stands poised to make possible a melanoma vaccine.  
  • Antibody drug conjugates (ADCs) continue to show promise, allowing targeted therapies with fewer side effects and better outcomes. With tremendous success in the already-approved ADCs for breast and lung cancers, studies proceed to learn the impact on other cancer types. 
  • We learned of promising clinical trials that improve on the standard of care in many specific cancer types. An example is a trial that showed using an immunotherapy drug, rather than a chemotherapy, is more effective in certain colorectal cancers than the standard of care. 
  • There is a growing research focus on prevention and understanding the increased cancer risk that factors such as obesity create. 
  • Trials on better testing and early detection yielded some great results, with a DNA blood test that can predict breast cancer recurrence garnering much interest. 
  • Over and over again, we heard the importance of patient involvement and how the patient voice is being incorporated earlier in clinical research. 

For a better understanding of the clinical trials process, read What’s Really the News You Can Use.

AI Allies: How Artificial Intelligence Can Support Patients To Cope with Cancer

A cancer diagnosis can be both physically and emotionally challenging. As cancer patients learn how to cope with the disease[1] and manage side effects[2], artificial intelligence (AI) tools like ChatGPT are emerging as valuable allies. This article explores ten ways ChatGPT can help you manage your cancer journey more effectively.

What is ChatGPT

ChatGPT is an AI language model developed by OpenAI[3], designed to simulate human-like conversation. Think of it as a smart chatbot that can craft responses that sound like they came from a person all based on what you ask or tell it.

ChatGPT 4 is the latest version, offering advanced features and improvements over previous versions. [4] However, you have to pay to get the full benefits of ChatGPT 4. ChatGPT 3.5, though older, is still available for free and is a reliable option for those who don’t need the full capabilities of ChatGPT 4.

Are there Alternatives to ChatGPT?

Yes, several other chatbots and AI language models can understand and generate human-like text. Examples include Microsoft Copilot and Perplexity.ai.

10 Ways To Use ChatGPT to Cope with Cancer

1. Explaining Medical Terms

Medical jargon can be confusing. ChatGPT can break down complex terms into understandable language. For instance, you could ask, “What does ‘carcinoma’ mean in simple terms?” This can help you understand essential terms without feeling overwhelmed by medical language.

2. Detailing Treatment Options

ChatGPT can provide an overview of various treatments. For example, you might ask, “Can you explain the different types of chemotherapy?” Understanding your options can empower you to make informed decisions about your care.

3. Treatment Side Effect Management

Knowing what to expect from treatment can ease anxiety. ChatGPT can inform you about common side effects and how to manage them. For instance, you can ask, “How can I manage nausea during chemotherapy?” ChatGPT can provide detailed, user-friendly responses, helping you prepare for and cope with treatment side effects.

4. Medication Questions

Managing cancer medications can be complex, especially with multiple drugs involved. ChatGPT can help you understand your medication schedules, potential interactions, and what to do if you miss a dose. Sample questions might include, “Are there any foods or drinks I should avoid while taking this drug?” or “What should I do if I miss a dose of my cancer medication?”

5. Managing Stress and Anxiety

A cancer diagnosis can take a heavy emotional toll. It’s common to feel anxious, fearful, and uncertain, and having a supportive resource can greatly reduce these feelings. ChatGPT can serve as a virtual companion, available 24/7. While it cannot replace human interaction, it can offer a comforting presence during lonely or anxious moments. For instance, you might express, “I’m feeling overwhelmed,” and in return receive a supportive response such as, “I’m here for you. Let’s discuss what’s troubling you.”

6. Finding Resources and Support Groups

ChatGPT can suggest resources, including support groups and educational materials, to help patients connect with others and stay informed. It can be helpful to ask, “Can you recommend any online support groups for cancer patients?”

7. Exercise Recommendations

Engaging in exercise while undergoing treatment can enhance both your emotional and physical health by boosting your mood and energy levels. If you ask ChatGPT, “What are some safe exercises for someone undergoing cancer treatment?” it will  give you some suitable options.

8. Nutritional Advice

Proper nutrition can support your body’s healing process and improve your overall health. Ask ChatGPT, “Can you recommend a diet that supports cancer treatment?”

9. Preparing for Doctor Visits

ChatGPT can help you prepare questions for doctor visits so you can get the most out of your appointments. For instance, you might ask, “What questions should I ask my oncologist about my treatment plan?”

10. Symptom Tracking and Management

ChatGPT can provide tips on how to monitor and manage your symptoms more effectively. For example, you could ask, “How can I track my symptoms and know when to call my doctor?” This can help you stay proactive about your health.

How to Ask Clear Questions to ChatGPT

If you want the best responses from ChatGPT, it’s important to ask questions that are clear and specific. Below are some tips to help you do this.

  • Be specific: Clearly state what you want to know. Instead of asking, “Tell me about cancer,” ask, “What are some common side effects of breast cancer treatment?”
  • Provide context: Give background information if relevant. For example, “I am undergoing radiation therapy for lung cancer. What side effects should I expect?”
  • Ask follow-up questions: If the initial response isn’t comprehensive, ask additional questions to get more detailed information.

Using AI with Discernment: A Word of Caution

While ChatGPT can provide valuable support, it’s important to use it with discernment. AI is not a doctor; it’s a sophisticated algorithm designed to process and generate human-like text. As much as ChatGPT aims for accuracy, it may occasionally produce incorrect or outdated information. Always cross-check with reputable medical sources before making decisions based on AI advice. As AI continues to evolve, its role in healthcare will likely expand[5], but human oversight remains indispensable.


[1] Optimizing ChatGPT: How Patients With Cancer Can Use AI as a Thought Partner | Cancer Nursing Today

[2] Artificial intelligence chatbots will revolutionize how cancer patients access information: ChatGPT represents a paradigm-shift | JNCI Cancer Spectrum | Oxford Academic (oup.com)

[3] Introducing ChatGPT | OpenAI

[4] GPT-4 vs. ChatGPT-3.5: What’s the Difference? | PCMag

[5] Walker H, Ghani S, Kuemmerli C, Nebiker C, Müller B, Raptis D, Staubli S Reliability of Medical Information Provided by ChatGPT: Assessment Against Clinical Guidelines and Patient Information Quality Instrument J Med Internet Res 2023;25:e47479

URL: https://www.jmir.org/2023/1/e47479

DOI: 10.2196/47479

Cancer Awareness Calendar 2024

January

Cervical Cancer Awareness Month

Blood Donor Month


February

National Cancer Prevention Month

Gallbladder and Bile Duct Cancer Awareness Month

World Cancer Day (February 4, 2024)

National Donor Day (February 14, 2024)

Rare Disease Day (February 29, 2024)


March

Colorectal Cancer Awareness Month

Kidney Cancer Awareness Month

Multiple Myeloma Awareness Month

Triple-Negative Breast Cancer Day (March 3, 2024)

International Women’s Day (March 8, 2024)

Anal Cancer Awareness Day (March 21, 2024)


April

Head and Neck Cancer Awareness Month

National Cancer Control Month

Esophageal Cancer Awareness Month

Minority Cancer Awareness Month

Minority Health Month

Testicular Cancer Awareness Month

World Health Day (April 7, 2024)

AML Awareness Day (April 21, 2024)


May

Bladder Cancer Awareness Month

Brain Tumor Awareness Month

Cancer Research Month

Clinical Trial Awareness Week

Melanoma and Skin Cancer Awareness Month

Skin Cancer Detection and Prevention Month

Melanoma Monday (May 6, 2024)

Women’s Check-up Day (May 13, 2024)

Women’s Health Week (May 12-18, 2024)


June

Cancer Survivors Month

Cancer Survivors Day (June 2, 2024)

Men’s Health Week (June 10-16, 2024)


July

UV Safety Awareness Month

Sarcoma and Bone Cancer Awareness Month


 August

Summer Sun Safety Month

World Lung Cancer Day (August 1, 2024)


September

Childhood Cancer Awareness Month

Uterine Cancer Awareness Month

Gynecologic Cancer Awareness Month

Blood Cancer Awareness Month

Thyroid Cancer Awareness Month

Ovarian Cancer Awareness Month

Prostate Cancer Awareness Month

MPN Awareness Day (September 14, 2024)

World Lymphoma Day (September 15, 2024)

Take a Loved One to the Doctor Day (September 17, 2024)


October

Breast Cancer Awareness Month

Liver Cancer Awareness Month

National Mammography Day (October 18, 2024)


November

Lung Cancer Awareness Month

National Family Caregiver Month

Carcinoid Cancer Awareness Month

Pancreatic Cancer Awareness Month

Stomach Cancer Awareness Month

Elevating Cancer Advocacy: 10 Strategies for Effective Information Dissemination

As patient advocates we not only want to educate and support cancer research and awareness, but we also want to inspire hope.  In this month’s article, I discuss 10 types of content that can help you communicate and disseminate information, advance cancer advocacy, and encourage and empower those affected by cancer.

1. Treatment Journey Timelines

Share informative timelines outlining the typical journey of a cancer patient from diagnosis to treatment and recovery.

What to share:

  • Key information about surgery, chemotherapy, radiation therapy, immunotherapy, and any other pertinent treatments.
  • Highlight the importance of support systems during treatment.
  • Address the common side effects associated with different treatments.
  • Include images that highlight the various stages of the journey, from diagnosis and treatment to recovery, providing a visual timeline of the cancer experience.
  • Conclude the timeline by exploring the phase of life after active treatment.

2. Visual Content

Use graphics, videos, or infographics to make your content more visually appealing  The human brain processes visual information much faster than text, making visual content not only more engaging but also more memorable. In addition to enhancing understanding and engagement, visual content is more likely to be shared across various social media platforms. People are more likely to share visually appealing and informative content with their networks, contributing to the dissemination of important medical information.

What to share:

  • Make complex concepts more accessible and easier to understand with infographics.
  • Live video streaming can be used to host interactive Q&A sessions and webinars with experts in the field who can answer questions and provide valuable insights. This real-time interaction provides valuable information as well as a more engaging experience for your audience.

3. Personal Stories

Use written narratives, images, and video testimonials to  describe the emotional and physical effects of being diagnosed with cancer.

What to share:

  • Explore the emotional roller coaster you experienced, detailing the shock, anxiety, and uncertainty that often accompany a diagnosis of cancer.
  • Share images that capture the visual aspects of the cancer journey.
  • Offer practical advice on managing the physical side effects of cancer treatment, such as nausea.
  • Share a range of coping strategies such as mindfulness techniques, support group recommendations, and mental health resources.
  • Highlight the importance of seeking professional counseling and the value of connecting with others who have faced similar challenges.
  • Acknowledge the ongoing challenges survivors may face, such as mental health concerns, or a fear of recurrence.
  • Offer words of encouragement and messages of hope. Remind others that they are not alone in their journey and that strength can be found in community and shared experiences.

4. Cancer Prevention Tips

As a cancer advocate, your aim is not only to raise awareness but also to empower others with practical advice that promotes a proactive approach to wellness and reduces the risk of cancer.

What to share:

  • Address common misconceptions surrounding diet and cancer, discussing evidence-based findings on the impact of various foods on cancer risk.
  • Provide practical tips on incorporating a balanced and cancer-preventive diet, emphasizing the importance of fruits, vegetables, whole grains, and lean proteins.
  • Provide actionable advice on incorporating regular exercise into daily routines, catering to various fitness levels and preferences.
  • Outline recommended screening guidelines for various types of cancer, stressing the importance of regular check-ups and screenings based on age, gender, and family history.
  • Collaborate with oncologists, researchers, and other cancer experts to discuss recent research findings related to cancer prevention. Address emerging trends, breakthroughs, and advancements in the field, providing your audience with up-to-date and credible information.

5. Clinical Trial Information

Clinical trials often explore novel treatments that may be more effective than standard therapies. By sharing information about ongoing trials, you can open doors for patients to access innovative and potentially transformative medical interventions.

What to share:

  • Start by providing educational content that explains the concept of clinical trials, their purpose, and their significance in advancing medical research. Break down the different phases of clinical trials, emphasizing how they contribute to the development of new treatments.
  • Acknowledge common concerns and misconceptions surrounding clinical trials, such as fear of receiving a placebo, uncertainty about side effects, or worries about being treated as a “guinea pig.” Provide clear, factual information to address these concerns and build trust in the clinical trial process.
  • Ensure that information is easily accessible to patients. Create user-friendly resources that list ongoing trials, their eligibility criteria, and contact information for trial coordinators.
  • Stress the importance of informed decision-making when considering participation in a clinical trial. Provide resources that guide patients on questions to ask, considerations to weigh, and how to engage in meaningful conversations with their healthcare team.
  • Emphasize the importance of diverse participation in clinical trials. Advocate for increased representation of various demographics to ensure that trial results are applicable to a broader population.
  • Establish partnerships with oncologists, nurses, research institutions, universities, and medical centers conducting clinical trials. Collaborate to amplify the reach of trial information and ensure that advocates are well-informed about the latest developments.

6.  Legislation and Policy Updates

By sharing  legislative changes related to cancer research funding, healthcare policies, and patient rights,  you can empower individuals facing a cancer diagnosis, ensuring that they are aware of their rights and can actively participate in their treatment decisions.

What to share:

  • Advocate for legislation that safeguards patient privacy. Stress the significance of maintaining the confidentiality of medical information and protecting patient data in the digital age. Help your audience understand their rights regarding the privacy of their health information.
  • Advocate for legislation that supports and emphasizes the active participation of patients in their treatment decisions. Share information on laws that empower patients to be partners in their healthcare journey, fostering a collaborative relationship with their healthcare providers.
  • Advocate for initiatives that promote transparent communication between healthcare providers and patients. Stress the importance of clear and understandable information, ensuring that patients have the knowledge needed to make informed choices about their care.

7. Conference Reports

Conference reporting facilitates the dissemination of the latest research, treatment updates, and policy discussions to a broader audience, which is a crucial aspect of cancer advocacy.

What to share:

  • Summaries of key sessions and presentations. Highlight significant findings, breakthroughs, and advancements in cancer research, treatment, and patient care.
  • Livetweet important points, quotes, and visuals to engage a wider audience.
  • Conduct interviews with keynote speakers, researchers, healthcare professionals, and fellow advocates. Gather their perspectives on emerging trends, challenges, and opportunities in the field of cancer.
  • Ensure that your conference reports are accessible to a diverse audience. Use clear language, provide explanations for technical terms, and consider different formats to accommodate various learning styles and preferences.

8. Cancer Awareness Days, Weeks, and Months

Compile a list of key cancer-related awareness days, weeks, or months throughout the year. These designated days are important for educating the public, destigmatizing the disease, and advocating for essential research funding.   Integrate these awareness days into your content calendar, dedicating specific time frames for planning, creating, and promoting content around each designated date.

What to share

  • Highlight significant dates such as World Cancer Day on February 4th, National Cancer Prevention Month, Breast Cancer Awareness Month, etc.
  • Plan focused campaigns during these dates, leveraging relevant hashtags and encouraging your audience to participate.
  • Develop a variety of content types, including articles, infographics, videos, and social media posts, to cater to different audience preferences. Ensure that your content is informative, emotionally resonant, and shareable.
  • Use relevant hashtags associated with each awareness day.
  • Provide educational resources including fact sheets, downloadable guides, and links to reputable sources. Empower your audience with accurate information to promote understanding and dispel myths.

9. Think Beyond Cancer

Thinking beyond cancer-specific days and aligning your advocacy efforts with impactful occasions like International Women’s Day can broaden the scope of your message and connect with a wider audience.

What to share:

  • International Women’s Day (March 8th): Highlight the impact of cancer on women’s health, emphasizing gender-specific cancers and advocating for gender equality in cancer research, treatment, and support.
  • International Day of Yoga (June 21st): Share information on how activities like yoga can complement cancer treatment, alleviate stress, and improve overall well-being.
  • World Mental Health Day (October 10th): Address the impact of cancer on mental health. Provide resources on coping strategies, discuss emotional aspects of cancer journeys, and advocate for increased mental health support.
  • World No Alcohol Day (October 2nd): Share information on the link between alcohol consumption and certain cancers, encouraging responsible drinking habits to reduce cancer risk.
  • World Osteoporosis Day (October 20th): Address the impact of certain cancer treatments on bone health. Provide information on how cancer survivors can maintain bone health and prevent osteoporosis.

9.  Interactive Content

By incorporating interactive content, such as online polls, information can be shared in a more dynamic and engaging way. Audiences are not only educated but also engaged and mobilized through a two-way interaction.

What to share:

  • Turn cancer awareness into an interactive learning experience by crafting polls that function as educational quizzes. Ask participants about cancer-related risk factors, symptoms, or prevention methods, providing instant feedback and valuable insights.
  • Combat misinformation and address stigma by using polls to confront prevalent myths about cancer. Create questions that challenge misconceptions, enabling participants to contribute to dispelling stereotypes and fostering a more informed and empathic online community.
  • Extend the impact of interactive content by promoting cross-platform engagement. Encourage followers to share poll results on various social media channels, multiplying the reach of awareness initiatives and fostering organic conversations about cancer-related topics.

I hope you’ve found these content suggestions helpful. Implementing these ideas can not only raise awareness about cancer but also inspire action, foster community, and contribute significantly to the advancement of cancer advocacy.

You might also like to read

The Patient Advocate’s Guide to Social Media Content Planning – Patient Empowerment Network (powerfulpatients.org)

Transforming Your Social Media Presence: 5 Steps to Foster Inclusivity and Advocate for All – Patient Empowerment Network (powerfulpatients.org)

Patient Empowerment Network joins CancerX Initiative

FOR IMMEDIATE RELEASE 

November 1, 2023

Patient Empowerment Network joins CancerX Initiative 

BOTHELL, WA. – Patient Empowerment Network (PEN) announced today that they have joined the CancerX Initiative, a public-private partnership announced by The White House as a national accelerator to boost innovation in the fight against cancer as part of the Cancer Moonshot campaign. CancerX’s goal is to reduce cancer deaths by 50 percent by 2047.   

“Key to achieving the goals of the Cancer Moonshot is having each and every cancer patient able to access the information they need to engage in shared decision-making,” said Tracy Rode, Executive Director, Patient Empowerment Network. “We believe Patient Empowerment Network (PEN) is an important addition to CancerX because of our focus on health equity and online literacy. We are proud to offer our expertise and energy to CancerX.” 

CancerX is convened and administered by Moffitt Cancer Center and the Digital Medicine Society (DiMe), alongside the Office for the National Coordinator for Health Information Technology and Office of the Assistant Secretary for Health.  

“Multi-stakeholder collaboration is critical to harness the potential of digital innovation in the fight against cancer, and we’re honored to partner with PEN to achieve the ambitious goals of CancerX,” said Smit Patel, Associate Program Director at Digital Medicine Society (DiMe). “Through this impressive collaboration, we will establish best practices, build capacity, and demonstrate the impact of innovation on the life of every person on a cancer journey.” 

PEN’s mission is to offer trusted information to empower anyone impacted by cancer, toward fulfilling our vision of every cancer patient having the knowledge they need to navigate the complexities of cancer.  

# # #  

About Patient Empowerment Network 

Patient Empowerment Network (PEN) is a virtually-based 501(c)(3) non-profit organization trusted by millions of cancer patients and care partners worldwide to achieve improved health literacy, equity, and treatment outcomes at every step of their journey. www.powerfulpatients.org. 

  


Media Contact:    

Emily Reed 

Early Light Public Relations 

Emily@earlylightpr.com