Tag Archive for: advocacy

12 Ways To Become A Stronger Advocate: A Month-by-Month Guide to Achieving Your Advocacy Goals in 2024

As we begin a new year, now is an ideal time to review your advocacy goals and determine how to make a bigger impact in 2024.

This article outlines 12 actionable approaches to enhance your advocacy efforts in the upcoming year. This list isn’t exhaustive, and you don’t need to complete all of the activities to make a difference.  Go at your own pace.  Be sure to set small, manageable goals to avoid getting overwhelmed. Tracking your progress from month to month will allow you to see the positive impact you’re making in the world.

January: Define Your Vision

Kickstart your year with a compelling vision for your advocacy. Structure and refine your vision using SMART principles. SMART stands for Specific, Measurable, Achievable, Relevant, and Time-bound.

Here’s how you might apply these principles to help you set SMART objectives for awareness-raising activities:

  • Specific: Develop a clear and specific objective, for example, increasing awareness about breast cancer early detection on social media.
  • Measurable: Set a metric for success, such as “achieve 1,000 shares of awareness posts.”
  • Achievable: Is this goal achievable? Consider how many social media followers you have, how much time you are willing to devote to the campaign, etc.
  • Relevant: Align the awareness campaign with Breast Cancer Awareness Month and leverage relevant hashtags to maximize impact.
  • Time-bound: Launch the campaign on the first day of Breast Cancer Awareness Month and conclude it by the end of the month.

February: Build Partnerships

Collaboration amplifies impact. Establishing meaningful partnerships not only broadens the scope of your activities but also infuses them with diverse perspectives and expertise. Do some research this month to find organizations and individuals with similar missions or advocacy goals to yours.  Aim to find partners who complement your efforts and have skills or resources you can use. Show how collaboration can benefit both parties by crafting a compelling narrative about your advocacy goals.  Identify influencers or thought leaders with a large following within your advocacy space. Provide them with a clear proposal on how their influence can help advance your cause.

March: Capitalize on Awareness Days

Take advantage of awareness days, weeks, and months to inform and educate your audience. Prepare a list of specific dates and create a content calendar dedicating specific time frames for planning, creating, and promoting content around each designated date.  You will need to brainstorm ideas, outline topics, and decide on the format (blog posts, videos, infographics, etc.). Add the dates to your social media calendar. Plan posts leading up to the event to generate anticipation, on the day of the event to participate actively, and follow-up content to sustain engagement. Use relevant hashtags to increase visibility.

April: Compile a Glossary of Medical Terms

One of the things I remember most when I was a newly diagnosed patient was how mystifying the world of cancer was for me. Having to learn unknown medical terms and scientific jargon was like learning a whole new language. Make the process less mystifying for newly diagnosed patients by putting together a useful list of medical and scientific terms (as I did with this Clinical Trials Jargon Buster). Think about adding interactive features to the glossary, such as hyperlinks to related terms, multimedia elements, and cross-references. This enhances the learning experience and engagement for users.

May: Optimize Your Social Profiles

Creating a compelling online profile is essential for building a strong digital presence. By investing time and effort into optimizing your online profile, you create a positive and impactful first impression. This, in turn, encourages individuals to follow you, engage with your content, and join your advocacy efforts.

  • Profile Picture: Choose a high-quality shot where your face is clear and easily recognizable. Adjust the dimensions of your profile picture to match each platform’s specifications.
  • Custom Header Image: Add a custom header image that complements your advocacy efforts. This could be an image of you engaged in a relevant activity, for instance holding a sign with a powerful message, or representing a current campaign.
  • Profile Information: Fill out all sections of your profile with relevant information. Include a concise yet informative bio that highlights your cause. Use keywords related to your advocacy to make your profile easily discoverable through search. If applicable, include highlights of your advocacy achievements, campaigns, or collaborations. This builds credibility and demonstrates the impact of your work.
  • Location Details: If you want to connect with local communities, specify your location.
  • Contact Information: If appropriate, include contact information such as an email address or a link to your website. This allows interested individuals or potential collaborators to reach out to you easily.

June: Conduct A Content Audit

This month, evaluate your existing content.   To ensure your existing content is relevant, accurate, and accessible, you need to review it regularly.

  • Review and Update Information: Begin by systematically reviewing all your content, including blog posts, articles, social media posts, and any other published materials. Check for outdated statistics, recommendations, or references that may have changed since the content was created. Be proactive in updating these elements to ensure that your audience receives accurate and reliable information. This not only maintains your credibility but also demonstrates your commitment to staying current and informed.
  • Assess Accessibility: Evaluate the accessibility of your content by considering language, literacy levels, and cultural sensitivity. Make sure your language is clear, concise, and easy to understand. Whenever necessary, provide explanations or definitions of medical terms.
  • Optimize Fonts for Readability: Pay attention to the fonts used in your digital content. Choose sans-serif fonts like Arial, Verdana, or Open Sans for better legibility on screens. Sans-serif fonts are clean and easier to read, especially in smaller sizes. Contrast and Color Considerations: Ensure sufficient contrast between text and background colors. High contrast improves readability, especially for individuals with visual impairments or those viewing content in different lighting conditions.
  • Alt Text for Images: If your content includes images, provide descriptive alt text for each image. Alt text, or alternative text, is a brief textual description of the content of an image, allowing individuals who use screen readers or other assistive technologies to understand and interpret the visual information on a webpage.

July:  Mid-Year Review and Adjustments

We’ve reached the halfway point of the year.  Now is a good time to take stock of what you’ve achieved in the first six months of 2024.

  • Reflect on Goals and Progress: Review the goals you set at the beginning of the year. Assess how each goal is progressing.
  • Revise Timelines and Strategies: If certain goals are behind schedule or not progressing as expected, consider revising timelines and strategies.
  • Assess Personal Advocacy Goals: Reflect on your personal growth and development as an advocate. Identify the skills and knowledge you’ve gained over the past six months.
  • Enroll in Training Programs and Workshops: Based on your self-assessment, seek out relevant training programs, workshops, or courses to enhance your skills. This could include social media strategies, communication skills, leadership development, or any other areas that align with your identified growth areas.
  • Seek Mentorship: Consider seeking mentorship from experienced advocates. A mentor can provide valuable guidance, share insights, and offer constructive feedback to help you navigate challenges and accelerate your growth.
  • Acknowledge and Celebrate Milestones: Celebrate the milestones and successes you’ve achieved in the first half of the year. Share these achievements with your audience to build momentum and inspire continued support.
  • Refine Strategies for the Second Half: Based on your mid-year review, refine your strategies for the remaining months of the year. Incorporate the lessons learned, capitalize on successful approaches, and leverage your newfound skills to propel your advocacy forward.

August:  Hone Your Writing Skills

Writing persuasively is a foundational skill for advocates aiming to communicate effectively, mobilize support, and drive positive change. Here are some tips to keep in mind:

  • Use Everyday Language: Using plain, everyday words ensures that your message is easily understood by a broader range of people. It promotes inclusivity and prevents confusion, aligning with the principle of clear and concise communication.
  • Speak Directly to the Reader: Personalizing your writing by using pronouns like “we” and “you” establish a direct and conversational tone. It creates a more approachable and inclusive communication style, building trust between the writer and the audience.
  • Follow Mark Twain’s Advice: In his advice “Don’t let fluff, flowers, or verbosity creep in”, Mark Twain stresses the importance of clarity and conciseness. Extraneous details and overly complex language can dilute your message’s impact.
  • One Idea per Sentence: Presenting one idea per sentence promotes clarity and prevents information overload. Readers can digest information in bite-sized chunks, making it more digestible and accessible. In addition, this approach ensures that readers who skim or scan the text capture essential information.
  • Edit for Clarity and Conciseness: After writing, take the time to review and edit your content. Ensure that each sentence serves a purpose, and eliminate unnecessary words or phrases.

September: Perfect Your Presentation Skills

Advocates with strong presentation skills can communicate their points clearly and persuasively to a variety of audiences. This month take time to explore resources and books that focus on effective public speaking and presentation skills. Look for renowned titles such as “Talk Like TED” by Carmine Gallo or “Presentation Zen” by Garr Reynolds. These resources provide insights into structuring compelling narratives, engaging audiences, and delivering memorable presentations.

Analyze speeches from accomplished advocates, leaders, or public figures. Observe their delivery style, how they structure their presentations, and the techniques they use to captivate their audience. Learning from successful speakers can provide valuable insights and inspiration for refining your own approach.

Enroll in online courses or participate in webinars dedicated to enhancing presentation skills. Platforms like Coursera, LinkedIn Learning, or Udemy offer courses on public speaking, storytelling, and presentation design.

Consider joining local or online public speaking groups where you can practice and receive constructive feedback. Toastmasters International is a well-known organization that provides a supportive environment for individuals to develop their speaking skills. Regular practice in a supportive community can significantly boost your confidence and proficiency.

October: Try Some New Tools

Let’s have some fun this month by trying some of the many available tools to enhance your online activities. Whether you need to edit an image, make custom graphics, or schedule your posts, there’s a tool for you.

  • Graphic Design Tools: Explore graphic design tools like Canva, Adobe Spark, or Piktochart. These platforms offer user-friendly interfaces with pre-designed templates, making it easy to create visually appealing graphics for social media posts, and other content.
  • Image Editing: Experiment with image editing tools to enhance and customize your visuals. Adobe Photoshop Express, Pixlr, or Fotor are excellent choices for editing images, adding filters, adjusting colors, and incorporating creative elements.
  • Social Media Schedulers: Simplify your social media management with scheduling tools like Buffer, Hootsuite, or Later. These tools often come with analytics features to track post performance.
  • Video Editing Platforms: Dive into the world of video content using tools like InVideo, Kapwing, or Adobe Premiere Rush. Create engaging videos, edit footage, and add special effects to convey your advocacy message in a dynamic and captivating way.
  • Survey and Feedback Tools: Gather insights and feedback from your audience using survey tools like Google Forms, Typeform, or SurveyMonkey.
  • Webinar and Virtual Event Platforms: Host engaging webinars or virtual events using tools like Zoom, Microsoft Teams, or Webex. These platforms offer features for presentations, Q&A sessions, and audience interaction, making online events more dynamic and participatory.
  • Podcast Creation Tools: Explore podcast creation tools like Anchor, Audacity, or Descript. Podcasts are a versatile and engaging medium for sharing stories, interviews, and information.
  • Data Visualization Tools: Turn complex data into compelling visuals with tools like Tableau, Datawrapper, or Infogram.
  • Browser Extensions: Enhance your online browsing experience with helpful extensions. Grammarly can assist with proofreading, Pocket allows you to save articles for later, and Bitly shortens URLs for cleaner sharing.

More tools to try: I’ve compiled a list of my favorite tools here.

November: Express Gratitude

Keep November’s theme of thanksgiving in mind this month by showing your appreciation to your supporters. This sense of appreciation not only encourages continued support but also deepens the emotional connection between advocates and their shared mission, fortifying the foundation of your advocacy efforts for sustained success.

Here are some suggested ways to show your appreciation:

  • Send sincere and personalized thank-you messages that go beyond generic expressions of appreciation. Whether through handwritten notes, emails, or personalized social media shout-outs, individualized messages demonstrate that you value and recognize the distinct roles each person has played.
  • Create social media posts or graphics that highlight the contributions of specific individuals. Include photos that showcase the impact they’ve made.
  • Consider organizing an appreciation event to celebrate and thank your supporters. This could be a virtual gathering, a webinar, or an in-person event.
  • Launch a gratitude campaign that spans the month. Encourage supporters to share their experiences and express gratitude to others within the community.

December: Reflect and Plan for the Future

The year’s end offers another opportunity to reflect on your advocacy journey and evaluate its progress.  Dive into the data and metrics associated with your advocacy initiatives. Assess the reach and impact of your campaigns by analyzing social media analytics, website traffic, email engagement, and other relevant metrics. Identify patterns, trends, and areas of improvement to inform future strategies.

Reflect on both successes and challenges encountered during the year. Identify the strategies that resonated most with your followers and contributed to success. Equally important, analyze the challenges faced and the lessons learned. Use this information to refine your approach and address any recurring issues in the future.

Finally, develop a strategic plan for the upcoming year based on the insights gained from your reflections and analyses. Outline specific goals, action steps, and timelines. The key to elevating your advocacy in 2024 will be consistency, commitment, and collaboration. Following this guide will  give you the framework to take your advocacy to new heights.  Let’s work together to make a positive difference in the new year.

Mastering Instagram for Patient Advocacy: 10 Tips for Success

Boasting more than two billion active users, Instagram provides an excellent platform for patient advocates to reach a wide audience and inspire change.

Here are 10 tips to help you achieve more on Instagram and make the most of your advocacy efforts.

1. Craft A Compelling Profile

  • Your Instagram profile is an essential part of establishing your digital identity and expressing your advocacy mission. Visitors and potential followers get their first impression from your profile.
  • Choose a profile picture that’s easily recognizable and relates to your advocacy. It could be your logo or a photo that represents your cause. Ensure that it’s clear and easily identifiable even in a small thumbnail.
  • Your username, also known as your handle, should ideally be related to your advocacy and easy to remember. If your exact name is taken, consider adding an underscore or a simple modifier to make it unique while still relevant.
  • Your bio is a brief space to explain your cause and what you stand for. Use clear and concise language to convey your mission. Incorporate relevant keywords related to your advocacy in your bio. This can help your profile appear in search results when users look for related topics. You might also include a call-to-action or a link to a website or donation page if applicable.
  • Strategically use emojis to enhance your bio. Emojis can add visual appeal and personality to your profile while conveying emotions and messages succinctly.
  • Instagram allows you to have one clickable link in your bio. If you have a website, blog, donation page, or a specific landing page for your cause, make sure to include it here. You can also use tools that allow you to create link trees to direct users to multiple destinations. If you’re open to inquiries, consider including a contact email or other relevant contact information in your bio.
  • Highlight specific accomplishments, milestones, or awards that you or your advocacy have achieved. These could include successful campaigns, collaborations, events, media coverage, or any other noteworthy achievements.
  • As your advocacy work evolves, make sure to update your bio accordingly. Whether it’s mentioning recent accomplishments, upcoming events, or new partnerships, keeping your bio current ensures that visitors are getting the latest information about your cause.

2. Share Stories

  • Sharing authentic stories – your own or others – is a powerful way to connect with your audience on Instagram and convey the impact of your advocacy.
  • Whenever possible, let the individuals whose stories you’re sharing speak in their own words. This adds authenticity and allows your audience to connect directly with the emotions and experiences of those affected.
  • When sharing others’ stories, ensure that you have obtained proper consent from the individuals involved. Respect their privacy and avoid sharing sensitive or identifying information without permission.
  • Showcase a diverse range of stories and voices. Different perspectives help your audience better understand the breadth and depth of the impact your advocacy cause has on various individuals and communities.
  • Create a comprehensive storytelling experience with both visual and written elements. Use a mix of images, videos, and graphics to complement the narrative in your captions. Visual elements can evoke emotions and help your audience better understand the individuals behind the stories.

3. Optimize Visual Content

  • Optimizing your visual content is essential for grabbing attention and effectively conveying your advocacy message. Visual content is more likely to be shared and remembered, helping you reach a wider audience.
  • Use clear, high-resolution images that are relevant to your cause.
  • Use visuals to evoke emotions that resonate with your cause. Happy, inspiring, or even somber imagery can effectively communicate the mood you want to convey.
  • Overlay impactful quotes, statistics, or brief messages onto images. Quotes can capture the essence of your advocacy and inspire your audience to take action or reflect on their own experiences.
  • Use simple animations to add movement and engagement to your posts. Animated graphics can be a creative way to share information.
  • Complex information and statistics can be more digestible when presented in the form of infographics. Create informative graphics that break down facts, figures, and data related to the condition, treatment options, or advocacy goals.
  • Instagram’s carousel feature allows you to share multiple images or videos in a single post. Use this to showcase various aspects of your advocacy, or present different perspectives.

4. Create a consistent visual identity

  • Maintaining a consistent color palette and visual style on Instagram can significantly enhance your profile’s overall appeal and recognition. Choose a primary color or a small palette of complementary colors. This helps in creating a cohesive and visually appealing feed.
  • Create templates for quotes, statistics, or announcements that incorporate your color palette. You can also use filters that align with your brand’s aesthetics.
  • If you use filters to enhance your images, choose a filter or set of filters that align with your visual identity. Consistently applying these filters gives your profile a polished and harmonious look.
  • Consider the overall aesthetic of your Instagram feed. Plan how your posts will look when they are viewed together on your profile. Plan your grid layout in advance to ensure a visually pleasing arrangement of posts.
  • Design custom covers for your story highlights that follow your color palette and style. This adds a polished and consistent look to your profile.

5. Use Hashtags Strategically

  • Using relevant and strategic hashtags can significantly expand the reach of your advocacy content on Instagram. Use tools like Instagram’s search function, and hashtag generator tools to discover relevant and trending hashtags
  • Include a mix of popular and niche hashtags in your posts. While popular hashtags can expose your content to a larger audience, niche hashtags help you connect with a more targeted and engaged community.
  • If your advocacy efforts are local or tied to a specific event or region, use location-based hashtags to reach individuals in that area.
  • While it’s tempting to use a lot of hashtags, focus on quality over quantity. Include around 5-10 relevant and well-chosen hashtags per post to avoid appearing spammy.
  • Don’t forget to use hashtags in your Instagram Stories. While they’re not as common here, they can still increase the discoverability of your stories.
  • Change your hashtags periodically to avoid being seen as repetitive by Instagram’s algorithms. This can also help you reach new audiences.
  • Regularly review the performance of the hashtags you’re using. See which ones are driving the most engagement and reach. Adjust your hashtag strategy based on this data.

6. Leverage Story Highlights

  • Instagram Story Highlights can be a great resource for patient advocacy. Create separate Story Highlight categories for different aspects of your advocacy. For example, you could have highlights for patient stories, educational resources, events, news updates, and more.
  • If you’re hosting events, campaigns, or awareness drives, use a dedicated Highlight to keep your audience informed about the latest updates, schedules, and details.
  • Highlight the milestones and achievements of your patient advocacy efforts. This can include successful campaigns, partnerships, media coverage, and more.
  • Keep your followers informed about policy changes, research developments, or advancements in medical treatments by creating a highlight dedicated to advocacy updates.
  • Compile a highlight with answers to common questions about the medical condition, treatment options, or lifestyle adjustments. This can help provide quick information to your followers.
  • Choose visually appealing cover images for each Highlight that reflect the content within. This adds a professional touch and makes it easier for users to identify the content they’re looking for.

7. Engage and Interact

  • Social media is a two-way street. Engage with your audience by responding to comments, answering questions, and acknowledging their support. Meaningful interactions help in building a loyal community around your cause.
  • If followers ask questions related to your advocacy, provide detailed and accurate answers. This establishes you as a reliable source of information and builds trust.
  • Whenever someone shows support or provides feedback, acknowledge it with gratitude. This can be as simple as liking their comment or responding with a heartfelt thank you.
  • Mention and tag individuals or organizations that are relevant to your posts. This can broaden your reach and potentially lead to collaborations.
  • Pose open-ended questions in your captions or stories to encourage your followers to share their thoughts and experiences. This initiates conversations and invites them to contribute to the dialogue.
  • Periodically host Instagram Live sessions or Q&A sessions in your Stories. This gives your audience an opportunity to ask questions in real time and engage directly with you.
  • Create an environment where people feel comfortable sharing their stories and opinions. This safe space encourages more meaningful discussions.

8. Collaborate and Amplify

  • Collaborations with other advocates, influencers, and organizations can greatly expand your reach. Collaborations can range from joint social media campaigns, co-hosted events, and Instagram takeovers to shared resources and materials.
  • Look for advocates, influencers, and organizations that align with your advocacy mission. Ensure that the collaboration makes sense in the context of your advocacy. The partnership should enhance the message you’re trying to convey.
  • Collaborations should be mutually beneficial. Clearly communicate what each party stands to gain and how the partnership will help advance the cause
  • Initiate conversations with potential collaborators. Engage with their content, leave thoughtful comments, and establish a genuine rapport before proposing a collaboration.

9. Include Calls to Action

  • A clear and compelling call to action (CTA) is an important aspect of turning your Instagram advocacy efforts into real-world impact. Clearly state what you want your followers to do. Use strong action verbs that motivate them to take immediate steps.
  • Guide your followers on how to take the action. If it’s signing a petition, provide the link. If it’s attending an event, share the date, time, and location.
  • Keep your CTA succinct. A short and impactful statement is more likely to grab attention and be remembered.
  • Tie your CTA to the content of your post. For example, if you’re sharing a personal story, your CTA could be to engage in a discussion or share their own experiences.
  • Make your CTA relatable and personal. Explain how each follower’s action can make a difference and contribute to the advocacy’s success
  • Make your CTA visually stand out. Use contrasting colors, bold fonts, or stickers to draw attention to the call to action.
  • Place your CTA at the end of your caption or post, making it the last thing your followers read. This increases the likelihood of them taking action.
  • Experiment with different types of CTAs to see which ones resonate the most with your audience. You can rotate between calls to sign up, donate, share, attend, and engage.

10. Measure and Adapt

  • Measuring and adapting based on data is crucial for refining your Instagram advocacy strategy. If you haven’t already, switch to a business or creator account on Instagram. This provides you with access to Instagram Insights, a powerful tool for analyzing your profile’s performance.
  • Review which posts are getting the most likes, comments, and shares. Identify patterns in the type of content that resonates with your audience.
  • Look at metrics like likes, comments, shares, and saves. These metrics reflect how your audience is interacting with your content and can guide your content creation strategy.
  • Analyze your Stories’ engagement metrics such as taps forward, taps back, and exits. Stories offer real-time engagement and valuable insights.
  • Identify the times when your audience is most active. Schedule your posts during these peak periods to maximize visibility and engagement.
  • If you have a website link in your bio, track the clicks to see how effective it is in driving traffic to your external resources.
  • Keep an eye on your follower growth rate. If certain types of content or campaigns lead to spikes in follower count, consider replicating those strategies.
  • Insights aren’t static. Regularly review your performance metrics and make adjustments based on the changing dynamics of your audience and the platform.

Mastering the art of Instagram for patient advocacy requires a balance of compelling storytelling, strategic content creation, and meaningful engagement. By creating a strong online presence, patient advocates can amplify their messages, raise awareness, and drive change in healthcare. The key to success is consistency. With dedication and a well-executed strategy, Instagram can become a powerful tool in your patient advocacy arsenal.

Advocacy Tips From an AML Patient

Advocacy Tips from an AML Patient from Patient Empowerment Network on Vimeo

AML patient and Empowerment Lead, Sasha Tanori, shares her advocacy tips, and the importance of being honest and open with your oncologist.

See More from [ACT]IVATED AML

Related Resources:

How Does One’s Culture Impact AML Care

How Does One’s Culture Impact AML Care

What I Wish I Knew Before My AML Diagnosis

What I Wish I Knew Before My AML Diagnosis

How I Overcame Biases During AML Treatment


Sasha Tanori:

Okay, so my number one thing, I guess I could…a tip sort of that I can give to women specifically or non-gendered people, if you want kids, I would definitely say to talk to your doctor as soon as you find out, even before you start doing the chemo, if you can just really, really talk to them and see, I think there’s anything that they can do for preserving your eggs for the future, because even though it may seem like you know it’s just no, not big deal. Not everyone gets the opportunity again. I know there are some people out there who might be able to, but it’s not a guarantee. And it sucks to have that opportunity kind of taken from you in a way, and I know it’s not something that you’re thinking like, “Oh well, it’s life for death.” And…yeah, I understand, and I get that, but in the moment, it may feel that way, but you never know how are you going to feel five, six years down the line when you’re pushing 30 and you’re like, “Oh my gosh, My opportunity is gone. You know, there’s nothing I can do about it.”

So that would be my number one tip. Definitely to be honest. Be honest and open with your oncologist, find some type of tips or tricks, or even if you just need someone to talk to about the infertility…it’s definitely worth it. Another thing I would say is to be really, really open with your oncologist about everything you’re going through. Nothing is too embarrassing and I know that’s a lot easier said than done, but I think being honest about what you’re going through, whether it’s mentally, if you’re going through depression, anxiety, if you’re having suicidal thoughts or tendencies, that’s definitely something you should talk to your oncologist about, so they can help you reach out to find some type of counseling. Mental health is very, very important when it comes to this. Your mental health will make or break you during this journey, and you have to find some type of close community, whether it’s your friends, your friends, your family, or just your oncology team, like someone that you could reach out to and talk to about everything, lay it all on the table and now I’m feeling guilty because I survived that my friend didn’t, or I’m feeling anxious because I have the scan coming up, and this is the third one in like two months, you know? There’s so much things that are going on in your head and to keep it to yourself, it’s a lot and it’s not fair to you, you need to be able to speak up and tell people what you’re going through, it doesn’t matter who it is if it’s your friend, your mom, even your oncologist, but they’re going to understand and they’re going to help you.

There are lots of resources out there that will definitely make this a lot easier. Another tip I would say is, talk to your oncologist about the good, the bad, and the ugly when it comes to your side effects because if you stay quiet about it, you’re going to really regret it. There have been many times where I was just too embarrassed to be like, :Oh you know what, I have this really bad rash on my butt, and I don’t know what to do about it.” So finally, they’re like, “Why didn’t you say something? Oh yeah, we can give you a cream, or we can do this or that for you.” And you’re just like, “Oh, okay, that feels so much better. Thank you.” But at the time, you’re probably just like, “Oh my God, I’m so embarrassed, I don’t want anybody to know about this. I don’t even want to tell my parents, I don’t want to tell my friends.” But I mean, this is all related to your cancer journey, one bad side effect can lead to something else, which could lead to something else. So it’s very, very good to try and be open and honest when it comes to your side effects, your emotions, your body, if you’re gaining weight or losing weight, if you’re losing your hair again, if you’re losing your eyebrows, you know talk to them, find out if there’s any solutions that can help because…

It’ll definitely make a big difference. I would say definitely another big thing would be to try and build a community through social media. Having friends or even just strangers on your feed that you see go through the same things you go through makes you feel so much less alone. I have been able to… I’m very happy that I’ve been able to make friends on social media through Instagram, Facebook, Twitter, just start adding everybody goes on Facebook groups that are specifically for AML, so you can just type in AML recovery, AMLl survivors, AML, family groups, caregivers. There’s a lot of things out there that are definitely beneficial and it helps to talk to others about it, so you feel less alone. Definitely. So I think those would be my biggest tips for expressing your advocacy.

Share Your Feedback About [ACT]IVATED AML

The Role of a Myeloma Specialist on Your Care Team

The Role of a Myeloma Specialist on Your Care Team from Patient Empowerment Network on Vimeo.

Why should you seek a consultation with a myeloma expert? Dr. Krina Patel discusses the important roles a specialist can play in your myeloma care, even from a distance.

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Patel, here.

Related Resources:

Expert Advice for Newly Diagnosed Myeloma Patients

Relapsed and Refractory Myeloma Defined

Myeloma Induction and Consolidation Therapy Defined



You mentioned the healthcare team. Dr. Patel. How does a myeloma specialist fit into that care team?

Dr. Patel:

So, I will say, as a myeloma specialist, I probably have three different ways that I am involved in different patient’s care. So, I have patients who are from Houston, where I’m at, that come to MD Anderson for their treatment. So, I see them on a regular basis if they’re on treatment, or I’m following them to make sure their disease is stable, what’s going on. So, I see them regularly, and I’m their main doctor for their cancer. And then, I have patients who are maybe a little bit farther away, and I see them as part of the team.

So, they have their own oncologist in their community that they’re seeing and they come see me either virtually or in person every few months, or if something’s happening; if their myeloma’s returning or they’re having toxicity, then they reach out to me so I can talk about different ways we can change therapy. And then, the third really is for second opinions where patients don’t necessarily  want to come see me all the time but they might want to be on a clinical trial that we might have at MD Anderson. So, they come just for that trial and then they go back to their doctors again. So, we sort of do whatever works best for the patient.

Expert Advice for Newly Diagnosed Myeloma Patients

Expert Advice for Newly Diagnosed Myeloma Patients from Patient Empowerment Network on Vimeo.

Myeloma expert and researcher Dr. Krina Patel shares key advice for patients newly diagnosed with myeloma, encouraging patients to take an active role in their care.

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Patel, here.

Related Resources:

The Role of a Myeloma Specialist on Your Care Team

Relapsed and Refractory Myeloma Defined

Myeloma Induction and Consolidation Therapy Defined



Myeloma can be a complex diagnosis. What are three key pieces of advice for patients who has just been diagnosed with myeloma?

Dr. Patel: 

I think any diagnosis of cancer, of course, is really hard, but multiple myeloma is so rare in the sense that people don’t know about it; that sometimes it’s the first time they’ve heard of it, when they’re diagnosed. And so, I think the biggest thing about more rare diseases in general, the best advice I could give is getting a myeloma specialist as part of your team. That doesn’t mean they have to treat you, but having them as part of your team. And we can talk about that in more detail. But the second part is really learning as much as you can and not necessarily all on the Internet.

Not everything on the Internet is correct. But really asking questions to your doctors, your nurse practitioners, your nurses, they all have different perspectives that asking questions for all of them is really worthwhile to kind of understand what you’re going through and what’s to be expected. And then, the last piece. I think with multiple myeloma patients, there are so many amazing patient support systems, especially after COVID but even before COVID, in terms of different groups that are sponsored by patients where you can listen when people come to give talks, et cetera. I think those are all phenomenal resources for patients.


What do you think the role is of the patient in their own care?

Dr. Patel:     

So, gone are the days of paternalistic medicine, especially in the U.S. My job is not to tell you what to do, but my job is to really give you options as to what is the best possible therapy for you at that time. And really, your job is, as a patient, to make sure that they tell me all the information that’s important for them. So, for instance, if they can’t come to chemo every week because they just don’t have a ride or they have some other medical problems that maybe I didn’t know about, those types of things. We just have to have that open communication, so we can come to that best next therapy together with those decisions.

What Role Can Care Partners Play in Advocacy?

What Role Can Care Partners Play in Advocacy? from Patient Empowerment Network on Vimeo.

Care partners can play many roles in advocacy. Diahanna, Sherea, and Patricia discuss that as a care partner you have to stay knowledgeable and up to date about various treatments and discussions happening in your loved one’s disease area. Diahanna shares a time where she had to advocate for her late husband by speaking up to the nurse and nearly saving her husband’s life. She also expresses that as care partners, you cannot be afraid to ask questions on behalf of your loved one.

Care Partner Tips for Communicating with Healthcare Teams

Care Partner Tips for Communicating with Healthcare Teams from Patient Empowerment Network on Vimeo.

Ensure that you are in a position to ask the right questions of your healthcare team. Diahanna suggests familiarizing yourself with various online resources so you are aware of the potential needs of your loved ones. Watch as care partners, Diahanna, Sherea and Patricia share more crucial tips to help others communicate with one’s healthcare team.

Resources for New Care Partners

Resources for New Care Partners from Patient Empowerment Network on Vimeo.

Sherea explains that you cannot move forward, unless you are able to acknowledge all the feelings that may come with the initial diagnosis of your loved one. Watch as care partners Diahanna, Sherea, and Patricia also share their tips and go-to online resources for new care partners.

What Key Steps Should Follow a Myeloma Diagnosis?

What Key Steps Should Follow a Myeloma Diagnosis? from Patient Empowerment Network on Vimeo.

A myeloma diagnosis can be overwhelming, so where do you start? Donna Catamero, a nurse practitioner specializing in myeloma, shares key advice for patients and encourages self-advocacy to access the best care.

Donna Catamero is Associate Director of Myeloma Translational Research at Icahn School of Medicine at Mount Sinai Hospital in New York City.

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How Can Myeloma Patients Take an Active Role in Their Treatment and Care?



Donna, would you please introduce yourself for us?


I’m Donna Catamero. I’m a nurse practitioner at the Mt. Sinai Hospital in New York City, where I focus on clinical research and treatment of myeloma patients.


So, as a nurse practitioner specializing in myeloma, what’s your role in the healthcare team?


So, I have several roles. So, the first role is caring for multiple myeloma patients, in particular, treating patients on clinical trials, managing their side effects, managing their treatment. My other role is a nurse educator. So, I help train our nursing staff and our research staff on myeloma, new therapies, “Myeloma 101”. So, I really help train and on-board our new staffing.


Excellent. When first diagnosed with myeloma, what three key pieces of advice do you have for patients and caregivers?


So, number one is be your best advocate. So, learn everything you can learn about your disease. Learn about the treatments, the side effects, the treatment schedules. Don’t be afraid to ask questions and it’s okay to ask a question multiple times because we might not commit it to memory. So, learn as much as you can; learn how the drugs work. That’s why I’m saying knowledge is power and really, knowledge will lead to you being your best advocate.

And number two, it’s okay to have a second set of ears with you. So, sometimes the situation might be overwhelming and we might not hear or understand what’s being told to us. So, it’s important to have someone, a loved one, a caregiver, with us, so that they can also hear what the healthcare team is telling them. And I know in the day and age of COVID, there may be restrictions for visitors in the healthcare setting, but we can do recordings. We can have loved ones on the phone, so that they can hear what’s being told. And number three, is do not be a martyr. There’s no need for anyone to suffer.

If you’re in pain, let your team know. We can provide a lot of supportive care and get you through the most difficult times of your diagnosis.


Why is it important that patients engage in their care and treatment decisions?


We have many options we can offer patients. Back in the day when I first started in my nursing career, we had only a handful of treatment options for patient. Now, we have an entire toolbox of treatments we can offer patients. So, it’s important to understand the treatments, the side effects, the schedule, and see if that aligns with your treatment goals so that this way you can make a very informed decision. 

Newly Diagnosed With Colon Cancer? Key Advice From an Expert

Newly Diagnosed With Colon Cancer? Key Advice From an Expert from Patient Empowerment Network on Vimeo.

Dr. Smitha Krishnamurthi, a colon cancer specialist from Cleveland Clinic, shares steps to take following diagnosis to ensure patients are receiving optimal care.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

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Katherine Banwell:

What three key pieces of advice would you have for a patient who has just been diagnosed with colon cancer?

Dr. Krishnamurthi:

Okay. Yes, when somebody received a diagnosis of colon cancer, of course it’s a very serious diagnosis. I would always encourage patients to seek out expert care. Meaning see a person who specializes in treatment of colorectal cancer. So, a colorectal surgeon and a colorectal medical oncologist. I am a medical oncologist who specializes in treatment of patients with gastrointestinal cancer.

These sorts of specialists are typically found at high-volume cancer centers. Look for National Cancer Institute-designated comprehensive cancer centers. That designation implies very high quality of care and that there’s a lot of basic science research, clinical research, and what we call translational research. Like trying to bring lab discoveries to the bedside. I would encourage that for everybody. Of course, not everyone lives near such a center, but what we’ve learned through the pandemic is that we can use telemedicine far more than we ever did before.

We do a lot of virtual visits with patients who may live many hours away. I think it’s important, even if you have one visit for a second opinion, a treatment plan, that you could then receive that treatment with the local oncologist. I think that’s very helpful, and I would encourage everyone to seek out an expert opinion.

Also, I think it’s very important to seek out as much support, because this is a major diagnosis and a lot to go through. There is a lot of support out there that people may not be aware of besides, of course, family and friends. There are excellent patient advocacy groups and groups like your organization, trying to bring information to patients. Patients can ask their doctor or nurse about what’s local in terms of support groups, but there are also large internet presences by patient advocacy organizations. They are giving people high-quality, evidenced-based recommendations, advice.

People get to learn from other peers who have gone through treatment. I can’t name them all, but just for example, like the Colon Town and Colorectal Cancer Alliance. I believe just launching today is My Bluem, B-L-U-E-M.org.

I happen to be executive board member of that, so full disclosure. But it’s an organization created by colorectal cancer survivors for patients to come to one website to access information about all of these different organizations. There is a huge community out there for people who are diagnosed with colorectal cancer. The third piece of advice, I would just say when you’re looking for information, make sure it’s from a reliable source like these patient advocacy organizations. I tend to look myself for websites that end in .org, .gov, .edu, and also .net.

Our American Society of Clinical Oncologists organization is ASCO.net, where you can get great advice about cancers. Cancer.gov, cancer.org. Because the internet is full of suggestions which may not be based in good science.

It’s important to have a good source.

Katherine Banwell:

Good advice. Thank you for that.

How to Play an Active Role in Your Myeloma Treatment and Care Decisions

How to Play an Active Role in Your Myeloma Treatment and Care Decisions from Patient Empowerment Network on Vimeo.

How can you actively participate in your myeloma care and treatment decisions? Engaging with your healthcare team is essential and may lead to better overall outcomes. In this program, Dr. Rafael Fonseca provides tips for how best to advocate for yourself or a loved one, as well as tools for making treatment and care decisions.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Katherine Banwell:    

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to explore how to engage with your healthcare team when diagnosed with myeloma, and we’ll discuss the patient’s role in care decisions. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Let’s meet our guest today. Joining me is Dr. Rafael Fonseca. Dr. Fonseca, welcome, and would you please introduce yourself?

Dr. Rafael Fonseca:   

Yes, of course. Happy to do that. Thank you very much, Katherine.  

I am a hematologist/oncologist, but I specialize in the area of multiple myeloma. I work at the Mayo Clinic in Arizona. I currently serve also as interim executive director for the Mayo Clinic Cancer Center that is at large across the Mayo Clinic enterprise. But at heart, I’m a myeloma doctor and I love to take care of myeloma patients. I devote my research and the rest of my academic activities to the field of myeloma.


Excellent. Thank you so much for joining us today. Let’s start with a question that’s on the mind of many of our audience members. We’re hearing that the COVID-19 vaccine is safe, but how effective is it for myeloma patients?

Dr. Fonseca:               

Thank you. I think that’s a fundamental question. It’s hard to know precisely how to gauge effectiveness when it comes to vaccination because historically, we know that is done by measuring antibodies and there’s a number of publications that are addressing this.

The concern has been two-fold. One is that because the disease itself is something that starts from the person’s immune cells become cancerous, that perhaps that would prevent them from having a very good response. Number two, and perhaps more importantly, will the treatments that are used for myeloma, etc. or lymphoma, can they interfere with our ability to mount an effective immune response? I think the response is mixed right now. I think I tell all my patients the upside is much better than the downside. I think we have a good record now of the safety of this product. I encourage everyone to get their vaccination.

I think it’s important to discuss this with your healthcare provider because sometimes people say, “Should I stop a little bit so that I can get a better response?” While it’s theoretically possible, we don’t want people to stop treatment if they don’t have to do that. Just my very last quick comment, the good news is that the community transmission is clearly going down as more and more people have participated in the vaccination.

We have more people who now have participated in this level of immunity that we have in the community. Hopefully, for patients as well as for their families, the risk of contracting this will continue to decrease.


Yeah. We can only hope. Well, let’s learn a little bit more about the disease itself. Dr. Fonseca, to level set with our audience, can you help us understand myeloma?

Dr. Fonseca:               

I’m happy to do so. Multiple myeloma is a cancer form of the bone marrow that arises when the cells that under normal circumstances protect us by the formation of antibodies. These are called the plasma cells. They become malignant. Myeloma is the last stage of a process where a plasma cell can go through a benign tumor or benign phase, if you may, something we call the monoclonal gammopathy, which by the way is quite common. About two percent of people over the age of 50 have this abnormality. Think of it like the colon polyp, a precursor condition.

There’s an intermediate stage that we call smoldering multiple myeloma, which is just more growth, but not quite at the level that it creates problems for the individual.

Then lastly, what we just simply call multiple myeloma, and that is when the growth of those cells becomes of such magnitude that a person starts having problems or starts having symptoms related to that. These cells live predominantly inside the bones in the space we call the bone marrow. They can do a number of things that actually lead to the symptoms and to the clinical presentation. As they grow in the bone marrow, they take some of that real estate.

A person may experience fatigue and that is because they have anemia.

The myeloma cells are also very characteristic because they can erode into the structure of bones, so destruction of bone is another feature that we see in patients with myeloma. That can be either seen on x-rays or sometimes people will present with symptoms related to bone pain or discomfort with movement or weight bearing. Those are signs that we look for.

Lastly, the myeloma cells product proteins and some of the fragments of those proteins can be damaging to the kidneys. Occasionally, people will present with decreased kidney function and sometimes outright failure of the kidneys. Those are the common presentations. It is a disease that mostly affects people in their 70s. It is not something that you can detect through routine testing; it’s just indirectly we start seeing abnormalities and then we do the right testing. If anyone is hearing this, of course, they need to have a detailed discussion with their own provider.


Of course, yeah. When a person is diagnosed with myeloma, they usually have a whole healthcare team. Who is typically on that team?

Dr. Fonseca:               

Absolutely. Let me start by saying the key to the successful management of myeloma is to have a well-organized team. It’s a disease that requires an integrated approach that usually brings around the patient a physician.

As part of my team, we also have advanced practice providers. We work with nurse practitioners that help us do the longitudinal care of patients. We have the nursing team. Every time I meet a new patient, I make it a point to bring my nursing team into the room so they can put a name and a face together, as patients will be interacting, of course, with a nursing team through the portal and the various visits. We have a team that is in charge of the chemotherapy administration. That is usually a separate a nursing team that is in charge of the administration of the medications. But we really don’t stop there.

We have pharmacists who help us review the medications for our patients. Very importantly, we have social workers that help us address psychosocial needs, as well as some of the practicalities that become inevitable when one deals with a serious diagnosis like multiple myeloma.


Yeah. Lately, we’ve been hearing this term, “shared decision making,” which basically means that patients and clinicians collaborate to make healthcare decisions, and it can help patients to take a more active role in their care.

I’d like to get your thoughts, Dr. Fonseca, on how best to make this process work.

Dr. Fonseca:               

We are very fortunate to live in this time of medicine, where ultimately, we recognize that the patient is the person expert. It is the patient decisions that should drive what is to be done in a situation. Whenever I interact with patients, I tell them, “Listen, I’m going to be like your counselor. I will provide you with options of what I think is reasonable. I will go to different degrees of effort in trying to convince you one way or another for a particular intervention. But at the end of the day, I only do a good job if I present you with the options and the pros and cons of those various approaches.”

I weave that into my language on every single conversation we have with patients. I think we’re way past the time where a physician would come and say, “This is what you’re going to do,” or “This is what will happen.” My language always includes, “I would recommend this.”

“I think the next best step for you to consider would be X, Y, or Z.” But ultimately, I look at patients and not infrequently at the person next to them, a family member or a close friend, and I say, “You’re the boss and with the person next to you providing additional support, comment, and guidance, we can together reach the best decision of what should proceed.” I think we’re incredibly fortunate because patients have access to sophisticated information, especially patients that have serious conditions such as would be cancer and, in my case, myeloma.

As an example, when I work with general internal medicine residents that work with me learning about hematology, I sometimes tell them, “You’re gonna walk into a room. Are you gonna be seeing what I say, this is like a tennis match between professionals. Are you gonna see the level of questions that patients are going to be asking me? They’re going to be asking me about the latest study that was presented at this meeting and the P value and this and that.”

“I can guarantee you that you would not have the tools to be able to address all those questions, simply because there’s such an in-depth understanding of the disease.” I realize this is not everyone. I’m giving you an extreme example. There are individuals that need additional support, more resources. But just to interact with someone who has such commitment to understand their disease and to help us by that understanding make the right decision makes my job so much more rewarding.


What do you think is the role of a patient then in their care?

Dr. Fonseca:               

I think it needs to be … I’m describing in some detail and there’s a lot to unpack there. Of course, patients are dealing with a very serious diagnosis. It’s okay to have periods where they are in a pause moment and they’re reflecting of what their facing, and that they can gather information from close family members.

I think we, as providers and the medical team, need to deliver a message that provides clear options for them as far as what the best next phase of their treatment or their management might be, including observations or supportive care. But the patient ultimately is a person who has to make that decision. I frequently get the question, and this is not surprising, and it happens all the time. A patient tells me, “What would you do if this was a family member?” I always tell them, “I always talk to you as if you were my family member, as if you were my brother, my mother, my father.

So, I try to live deeply to that fiduciary responsibility I have to your well-being. I recognize that there are circumstances, and that’s part of the finesse and the art of medicine, that I have to help a little bit more walk you through that step. Sometimes, it’s just human that one may want to say, I just want to disconnect. Maybe I’m not the person that wants to go and read in detail. But perhaps I have my daughter or my son who are helping me and understand better where things are.”

I think one of the key aspects of my role is to make sure that I have a sense that the person has a good understanding to be able to make an informed decision. At the end of it all, if the person decides to proceed in such way that doesn’t necessarily align with what I’m trying to do, I’m deeply respectful of that choice. I will go to extra lengths. So, if someone is foregoing treatment, when I know their treatment has a high likelihood of improving their quality of life, relieve a symptom, or improve survival, I don’t think I would do a good job if I don’t present why that’s so important. But ultimately, it is the patient’s decision.


Related to what you’ve just been speaking about, we have a question from the audience. This one is from Sarah. Her question is, “What advice do you have for caregivers? How can I be supportive during appointments?”

Dr. Fonseca:               

That’s a great question.

I have experienced this both as a physician, as well as a caregiver myself to someone who has had a cancer. I think I’m gonna say that there are several roles that caregivers play. Some of them are obvious and I’m gonna call them practical or perhaps even pedestrian, you know, organizing the activities of every day. That’s important, but a lot of people can do that. The second role is to be in assistance for the knowledge that is needed for some of this decision making. Sometimes patients can be overwhelmed, and we need some support and some vetting and peer process from a trusted and loved person so you can go through that.

That is very helpful, but what is essential, and the number one thing is you are first and foremost the loving family member or friend of that individual who is living through a very profound human experience. I think the first role of a caregiver has to be to express that role.

I, myself, reflect on moments where perhaps in a quick, reactive way I wanted to solve some of the immediate practicalities and what was needed most was a direct support. Even if I face a situation today, if I was, again, a caregiver for someone with a serious diagnosis with cancer, I would start with that priority. Number one, you are the support and the loving person. Number two is I will try to provide information. And number three, hopefully you can help with meals and the driving and what have you. But there’s many more people who can come and help in that regard. Not a lot can do the first part.


Right, absolutely. Yeah, those are excellent points. Let’s talk about treatment goals. What are the goals of myeloma treatment from a clinical perspective?

Dr. Fonseca:               

I’ve been very fortunate, also, to live through this era when we have seen a plethora of studies and new drugs being approved for the treatment of myeloma.

When I first started, I used to say no one wanted to do myeloma because we didn’t have good treatments. People wanted to study leukemia, lymphoma. It just turns out that this is probably one of the most vibrant areas of hematology from a science and from a clinical research perspective, of course. If I see young patients who have multiple myeloma, I have essentially two goals. The first one is to induce the deepest possible response I can do so in a safe manner. I also repeat, “in a safe manner.” But I really have the goal to try to induce the deepest response possible because that has translated and continues to translate, and in many ways proven to be associated with an improvement on their longevity and the time we can control the disease.

And it leads me to second goal, and that is that I firmly believe there is a subset of myeloma patients that are cured from their disease.

Now, this is possible because of the availability of these new treatments. I will only be able to say that in 10 and 15 years from now, when we have monitored patients for a long period of time, and we have been able to see that became true. But by all indicators, we have patients that are living many, many years without the disease coming back. I think that would be important. Now, we have patients that with more advanced age sometimes it’s difficult to propose some of the most intense form of treatments like stem-cell transplants.

We don’t do a lot of that in individuals over the age of 72 just because the toll that it takes on a person is very high, and the risks become higher. But still, in that population, providing the best treatment possible becomes a goal because I think more and more, we’re seeing patients in that age category that can start to get close to what normal life expectancy would be. It’s not there. It’s not perfect, but you start to get close. Lastly, if someone asked me, I have that balance between quantity and quality, the good news in myeloma, if you do it right, quantity and quality go hand in hand.

So, effective treatment provides symptom relief and provides durability of responses.


That’s excellent. What other factors do you consider when determining a treatment approach?

Dr. Fonseca:               

The human experience that comes to the bedside as we consider treatments is so multi-factorial and multi-complex that all that needs to be brought into consideration. Whenever I walk into the room, I tell residents usually the medical part can be resolved pretty quick, but we’re reading how much we can communicate? What’s the level of understanding? What do I understand about the support system for this person? Is there someone who can drive to the treatment center? Is there someone perhaps whose other medical conditions would create certain challenges in how they’re gonna be treated?

This person is telling me they do daily hikes for four miles. Well, that’s different from someone who I see comes into the clinic and has to use a cane. We try to integrate all of that information to make the right decisions. I’ve made a lot of my career in the early years working and showing how, for instance, genetic factors are important. I’ve come to realize later in my career and through some of the very elegant work that other colleagues have done, that these factors are just as important in determining the ultimate outcome of patients. Whenever I talk about that clinical experience, there’s two things I always tell the residents.

I use the residents a lot because I think it’s a good example of how we aspire to interact with patients. Number one is every single encounter is a final exam. You have to put your best foot forward. Every single encounter should be considered a final exam. Number two is when I walk into that room, there are three things I do, particularly the first time I meet a person.

Number one is connect, right? We cannot have a conversation and I’m not gonna be able to move forward unless we have a human connection and I have gained the trust of the patient and the family members that are there. That’s number one. The second point is decide. That is usually okay, we’re gonna do this treatment or that. That is a small part. Most of the time for me, that’s a very small fraction of the time and of the mental energy that I consume. There’s cases that are more complicated, but most of the time it’s pretty straightforward. So, it’s connect, decide do very small, and then on the other end is explain.

So, that’s how I can connect. I propose we do this, and then why we are gonna do it and what can you expect. If you can do those three things, I think that goes a long way in establishing a fruitful and a productive relationship with a patient and their families.


I would suspect that you also take into consideration the patient’s health, their age, maybe test results, side effects, things like that?   

Dr. Fonseca:               

Of course. So, we look at the medical record and with the advent, of course, of the electronic record and all the tests that we do, our consideration is quite complex. We have to look at all those factors, and the age, and comorbidities. It’s rare that we would take one factor alone that would trump everything else. We usually have to integrate the information. The same is true when we manage myeloma patients and we’re monitoring their protein levels and their response to treatment. I tell patients, they ask me, “What would you do? What’s the magic number for this or that?”

I say, “It’s a little bit like you’re flying a Cessna plane and you have all these dials in your dashboard, and that’s how we manage the situation is the integration of all of that information.”


Right. Can you help us understand, Dr. Fonseca, how test results may affect treatment options?

Dr. Fonseca:               

Sure. Happy to do that. In myeloma, we are very fortunate in that we have, and it’s not the topic for today, but we have the best biomarker that exists for any cancer. That is that we can measure the proteins that are associated with the growth of the cells. We have multiple tests that we can do. We do them in the blood and we do them in the urine. They’re simple tests that have been done for decades now that allow us to monitor how a person is doing with regards to their disease. I use the following analogy. Myeloma cells live inside the bones, as I mentioned, in the bone marrow.

They don’t come out into the blood. So, we cannot measure them. Indirectly, we can measure how many they are and how they are behaving by measuring this protein. I use an analogy of imagine you’re walking in a street, and you see smoke coming out of a building. There are two things you can do. First is you diagnose that there is a fire inside the building, right? We see that with myeloma by measuring these abnormal proteins.

Then as a firefighting team comes on, you can gauge whether they’re making progress or not by the amount of smoke that comes out. That’s exactly what we do when we monitor myeloma. We monitor the M-Spike, the serum free light chain, the urinary proteins. That’s how we make those determinations.

At the same time, we do that, we have to look indirectly at the rest of the body. We have to look at the kidney function. We have to look at the blood counts. We have to look at the hemoglobin and the red cell count because that can (A) start on the wrong foot because of the myeloma itself, but (B) can also suffer as a consequence of our treatment.

It is, again, that idea of having the multiple dials in the dashboard that allow us to reach our practice. We have to be adjusting. So, if we measure the proteins and we’re doing great, but then at the same time we see we’re suffering in blood counts, and we may need to adjust those as we provide supportive treatment. If we don’t see the proteins go down, then that may mean we need to change to a different form of treatment or that the person is unfortunately a refractory or relapsing to something.

So, that’s how we integrate the test results into our management.


What sort of questions should patients consider asking about their treatment plan?

Dr. Fonseca:               

I think it’s important that patients understand a few things. They can be described in multiple ways. Number one is, of course, what? What is it that is being used? I think that includes a description of what to expect, the practicalities, the names of the medications, their side effect profile, and what to report when you use those medicines. I think that’s very important because if you’re empowered with that information, you’re gonna be better off as you react for symptoms that may come along. I always tell patients when you have a cancer diagnosis, your self-awareness goes through the roof because we’re gonna be paying attention to everything, every skin change, every pain we have.

So, I think having a bit of that proactive discussion becomes important as they think about the treatments that they want. I think the how-to on the practicalities are very important. The best where the nursing team and the pharmacists help us a lot too. Do you take the medicines at night? Do you take them with meals? Is there something that you shouldn’t be mixing? How much time would it take for me to get a refill? It’s different to get a medication from a specialty pharmacy versus your down-the-street Walgreens. So, all of those things are important that patients, again, participate in the understanding.

If not them, at least the caregivers that are a part of this team. I think it’s important that patients ask also some brief descriptions of (A) the biology of the disease. If I have myeloma, what type of myeloma do I have? Does that matter as far as what treatments I’m going to be using? What treatment options may be available to me because of my specific subtype? We have subsets of myeloma that have options that are not available to others.

Also, I think it’s important that patients also ask a sense from the physicians as to where they are. I’d like to describe this a little bit more. Sometimes, patients ask us specific questions about, am I in a complete response? Am I in a very good partial response? What is a PFS? Those terms work very well when we talk about clinical trials, but they don’t necessarily describe in a great way the situation for an individual patient. I’d use a lot more objectives than I’d use technical terms when I describe where patients are. I say, “You have an excellent response. You have a very deep response.”

Then I’d provide more details if they want. “Yes, you’re MRD-negative at 10 to the -6.” But sometimes I find that it’s harder for patients to understand where they are if they completely focus on the staging system or the response criteria, etc. Because maybe a VGPR, a very good partial response, doesn’t sound very good.

But then you can be in a very good partial response for 15 years and it doesn’t matter. You my want to be in an MRD-negative status, but you still have a good outcome. That’s why the general description of the status by a physician becomes important.


Do you think patients should get a second opinion consult with a specialist?

Dr. Fonseca:               

In general, my answer is going to be yes. This is not self-serving. I think myeloma has become so complex that trying to integrate at least once, or if not, in some infrequent basis, an opinion of a myeloma specialist becomes important. This is no one’s fault. If you’re a community oncologist somewhere where myeloma represents only a small fraction of your practice, I can guarantee you, you cannot stay on top of the literature. I cannot stay up with everything that goes on with myeloma, even though that’s what I do 100% of the time.

I get an email every week with all the articles, all the publications, and I have to integrate that. I have to think, okay, does this matter or not? I go to the professional meetings. I see all the abstracts and I still feel like I’m missing out. How could you do that if that is only a small fraction of your practice? I’m sure that the same applies for other cancers, breast and colon. You can’t move. You cannot uproot yourself and leave your community and your family, but I think there should be ways by which patients at least have an opinion from someone who has more expertise. Fortunately, there are many centers across the nation now that have that expertise for the management of myeloma.


Dr. Fonseca, we have a question from a newly diagnosed myeloma patient. Barbara says, “I am just about to begin my first myeloma treatment. What can I expect?”

Dr. Fonseca:

Thank you, Barbara, for the question. I think if you start on treatment, first of all I hope they already went through a good description of what the treatments are, the frequency by which you’re gonna have to go to the center, and also what are the toxicities to look out for.

One of the most common toxicities that we face and one of the most challenging parts of initial treatment is the use of steroids. So, we use dexamethasone as part of every single regimen we use for myeloma. I tell patients, “Dexamethasone is a simple drug at first glance, but it’s oftentimes the most complicated part of treatment.”

The human brain works at triple speed when you’re on dexamethasone. So, it’s hard to sometimes be able to sleep properly. People can become anxious and even the sweetest person in the world can become a little bit edgy on dexamethasone.

I always say Mother Teresa on dexamethasone would be an edgy person. Just be patient. Work with the team. Just know that on the other side of treatment there is a return to normal life.

Our goal as we embark on treatments and, for instance, is I see patients that are going to go through transplant, I tell them, “Our goal is you finish, you recover, and you go back to your life. You back to work. You go back to your family, your kids, your sports.” That’s really what we strive for when we treat patients with myeloma.  


Yeah. Once on therapy, how is the disease monitored and how do you know if the treatment is working?

Dr. Fonseca:               

Well, fortunately, we use the same markers. Once a person is in therapy, we will be monitoring. We monitor at least on a monthly basis of those myeloma protein markers. Once a person reaches a great level of response, sometimes we complement that with an analysis of the bone marrow. Of course, it’s more invasive, so we don’t like to do a lot of them, but we do them as needed. As we go forward and monitor patients, we will be looking for signs that those proteins remain in a low level as stable as an indicator that the disease is under control.

Now, if I saw someone and then I start seeing that there’s an increased concentration of those proteins or we see something else clinical, we might need to do a little bit of a regrouping and test again in great detail to determine if the person is experiencing regrowth and the disease is so-called relapsed.           


Why is it so important for patients to speak up when it comes to symptoms or treatment side effects?

Dr. Fonseca:               

Well, that’s a great question. If you don’t speak about them, we don’t know about them. It seems very obvious, but then we cannot make the proper adjustments. I’ll give you a couple of examples. I already talked about dexamethasone, but a common drug we use is something called bortezomib. Bortezomib is a proteasome inhibitor.

That’s a mouthful, but it’s one of the key type of drugs we use. It’s given as an injection under the skin. Not to be confused, by the way, with daratumumab. Faspro is the name of that medication, so not to be confused with that is bortezomib, which we have been using for many years.

Bortezomib has a potential toxicity that is called peripheral neuropathy. If patients have peripheral neuropathy, that can go from very mild where you have some numbness and tingling, to the more extreme cases that it’s associated with pain, discomfort, even weakness and disability.

Well, if we don’t know that’s happening, then we can’t react to it and we can’t adjust doses or switch to something different altogether. You can imagine now we have more options, but in the old days, I always tell patients, “You might be tempted not to say anything about this because you might be thinking, boy, this is working. I don’t want to interfere with my treatment. I can live with the peripheral neuropathy.” But if it gets worse, despite the fact that the treatment is working, the person might have a very significant impingement on their quality of life.

More so now that we have so many alternatives, it’s important not to get us into a path that we might reach a point of an irreversible chronic complication from treatment.


No, and that would be awful.

Dr. Fonseca:               



Before we end the program, Dr. Fonseca, have there been any recent developments in myeloma treatment in research that make you hopeful? 

Dr. Fonseca:               

Absolutely. I would say that the one area of work that makes me most hopeful is what we’re seeing with immunotherapy. We have seen that both as the ASH meeting, as well as the ASCO meeting in this year, where people are presenting updates with the various clinical trials with either bi-specific antibodies or CAR T cell therapy as a new avenue for the treatment of myeloma.

In fact, at the last ASH meeting, we had 14 presentations of different compounds or different constructs that are active. I think the future is bright in that regard. We’re seeing their application right now. A lot of these updates have also been made as ASCO.

We’re seeing the update of the treatment of treatments with fairly advanced and aggressive disease where we can still show very significant responses. I participate in some of these trials. I can tell you in my institution, using some of the bi-specifics, I see patients who have previously exhausted all of their options and now are MRD negative at 10 to the -6.

If we’re seeing that in the very advanced disease, I cannot wait to see what happens when we start using these treatments in either early relapse and why not in the near future as frontline part of our therapy? I think to me, that whole field of T-cell engagers, where there’s bi-specifics or the CAR T cells remains one of the most exciting areas for future research.


How can patients stay up to date on information like this?

Dr. Fonseca:               

I think what we alluded to before is very important to work with groups like yours and other patient support organizations that can keep them up to date. I think they’re doing a very good job at also providing updates post some of the large meetings. I know there’s a lot of patients out there that are very sophisticated that will even join the medical meetings. That happens with some frequency; that they want to learn, and patients that go and ask me details about the statistics of the trial. That’s a whole spectrum, right?

But at the minimum, I would say a strong connection with a support group, or a patient support organization becomes an imperative as you deal with this. Also, that would help you because with this whole concept of the information not always being complete and truthful, that can be scary as well, too.

If someone goes and just looks for, I would say even some of the resources that are out there in a textbook today, just keep in mind that textbook was probably written five years ago, and it represents the studies of about 10 or 15 years ago. How that relates to you, it’s very distant. So, it is because of this continuous process of research that we know better what’s going on at the present time.


Dr. Fonseca, thank you so much for taking the time to join us today.

Dr. Fonseca:               

Oh, it’s my pleasure. Thank you for the opportunity.


And thank you to all of our partners. To learn more about myeloma, and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.

Myeloma Treatment: When Should a Clinical Trial Be Considered?

Myeloma Treatment: When Should a Clinical Trial Be Considered? from Patient Empowerment Network on Vimeo.

 At what point should a clinical trial be an option for myeloma treatment? Dr. Joshua Richter shares his perspective on the appropriate time to weigh clinical trial participation and the potential benefits.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

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When should a clinical trial be considered for myeloma treatment?

Dr. Richter:

So, clinical trials are an extremely important component of how we manage myeloma. And I think there are a lot of myths and misconceptions about trials. Trials are not always things to do after everything else failed. From my standpoint, at every point along the way, we should always consider clinical trials, because they offer something really amazing. They offer us access to drugs way before they’re approved.

And the benefit of not waiting until the end, after you’ve been through everything else, is two-fold. One, in order to get on a trial, you need to fit certain criteria, inclusion, and exclusion criteria. You need to have myeloma, but you can’t be so sick from other medical problems that you’re not going to tolerate that treatment well. As such, unfortunately, some patients after they’ve been through all the other therapies may not qualify for a clinical trial, and that can be really upsetting.

The other benefit of doing a clinical trial early on is if you go on a new drug and it doesn’t work, you have all of the other standard of care options available at a moment’s notice. But if it does work and you gain access to a drug way before it’s approved, and it happens to work extremely well in you, you can have an unbelievably long remission and still have all of the drugs that are available. And, potentially, in that time on the drug, new standard of care drugs are approved. It even deepens the well that you can reach into to grab more options. So, at all times along the way, it’s always important to weigh the risks and benefits of what we call standard of care treatment versus clinical trial options.

Advocacy Through Various Mediums with an MPN Patient and Caregiver

Advocacy Through Various Mediums with an MPN Patient and Caregiver from Patient Empowerment Network on Vimeo.

What is patient advocacy and how can you advocate? MPN Network Managers Jeff and Summer discuss the various ways in which they advocate. In addition to volunteering with PEN, Jeff actively participates in a support group. Summer who is living with MPN has decided to advocate through her humor. Make sure to watch to see a snippet of her stand-up routine! 

“Our challenge to you is, as a patient find a way to give your knowledge of how you’re handling your disease to others and you too can become a strong patient advocate.” 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

How Can Myeloma Patients Advocate for the Best Care?


How Can Myeloma Patients Advocate for the Best Care? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg shares advice for myeloma patients on why it’s important to speak up about symptoms and side effects, how to become a better partner in their care, and the role of a second opinion.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

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What Should You Know About Myeloma Treatment Options?



What is some key advice that you give patients when they’re considering their treatment options?

Dr. Forsberg:             

Well, I think one important one is to always feel comfortable communicating with your provider. I think that there no by the book questions, list of questions, that’re the right questions to ask. I think the more important thing is trying to establish a good working relationship with your treatment team. Myeloma is much more of a marathon than it is a sprint. So, getting comfortable with your team, getting comfortable with a relationship and a partnership that can be often many years in duration, are really critical steps.

So, I think laying that foundation, feeling comfortable asking questions, trying to understand why. Understand how and what are tools to monitor what the myeloma will be and what indicates success or a need for something else. Those would all be critical pieces that I would encourage patients to feel empowered to be part of.


Patients can sometimes feel like they’re bothering their healthcare team with the comments and the questions. So, why is it important for patients to speak up when it comes to their symptoms and side effects?

Dr. Forsberg:             

Well, I think feeling comfortable being vocal about what’s going on is one of the key issues to navigating myeloma successfully. Being aware of issues, even if they may seem minor or insignificant, they may be an indicator for something that is emerging in terms of a treatment related side effect that we wanna be aware of. There are treatment side effects that we are willing to work through. But it can be very broad in terms of the spectrum of how we maneuver through different side effects.

And additionally, we always want to be aware of any issues that may be going on that could be a sign for what’s happening with the myeloma. So, trying to be vocal. Not only to understand what’s going on, what our treatments are, how successful are we at any given point in time, where things stand. But also, to make sure that you are putting things on your provider’s radar are key. So, lots of folks want to be good and compliant patients and we certainly appreciate that hope. But being assertive in terms of issues that may be coming up or questions that you may have, can really make for a much more successful long-term relationship in terms of how we manage the myeloma.


Well, do you have suggestions on how a patient could feel more confident in speaking up and becoming a partner in their care?

Dr. Forsberg:             

Well, certainly using tools like, if you found your way to this material, I think is a great first step.

Becoming a little bit more versed in the myeloma, in the language of the myeloma, what these tests that we use are. What their results might be. Using a number of great patient specific organizations are great first steps. So, being proactive about learning, to some degree about the myeloma. And then feeling comfortable asking that first questions. Once you begin the process of unlocking the myeloma and demystifying what it is and what these tests mean and where we stand, then that can really build on itself and allow folks to feel more in control of their myeloma and their myeloma journey.


And if a patient isn’t feeling confident with their treatment plan or their care, do you recommend that they seek a second opinion or consult a specialist?

Dr. Forsberg:             

Well, I never think it’s a bad idea to think about a second opinion or seeing a myeloma specialist. Even if you feel very comfortable with your treatment plan. Myeloma’s a unique disease and our approaches for it may be somewhat different, person to person.

And your needs as a myeloma patient my change and they may change somewhat abruptly. So, having seen someone who specializes in myeloma as part of your care team, and usually it is a care team. And there’s different models we sometimes work with in terms of both local or primary oncologists, as well as more specialized academic oncologists. We’re used to working through all sorts of models to provide the best possible care for patients. So, I never think it’s a bad idea to ask about that. Because having that more robust team is usually mostly benefit without adding a lot of headache. 

Is My Myeloma Treatment Working?

Is My Myeloma Treatment Working? from Patient Empowerment Network on Vimeo.

How can a myeloma patient know if their treatment is working? Dr. Peter Forsberg explains tests involved in determining if myeloma treatment is effective and factors that may indicate that it’s time to switch therapies.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

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Once a patient has started treatment, how do you know if it’s working?

Dr. Forsberg:              

So, we’re lucky in myeloma in that we have some pretty easily accessible tools to evaluate how our response is going. How the myeloma is responding to treatment. How we’re sustaining that response and if we may be losing it at some point in time. And a lot of those come down to those blood tests I mentioned before.

The tools that measure protein levels or antibody levels in the blood, whether that’s intact antibodies or fragments of antibodies. So, that is that serum protein electrophoresis or serum free light chain levels.

Sometimes in conjunction with urine collections, which can measure abnormal antibodies in the urine. Those are ways that we can monitor on a month-to-month basis, how well the myeloma is responding to treatment. How well we are sustaining in a response or remission status. Or if it might be starting to come back.

We do at times use those in conjunction with other tests that look at things like bones using X-rays, MRIs or higher resolution scans like a PET scan. Or things like bone marrow biopsies which we may do at specific time points to evaluate the myeloma in different ways.

Whether that’s to evaluate a remission and see how deep that response might be, correlating it with blood work. Or if the myeloma come back, making sure we understand the characteristics of it. So, we’re lucky to be able to draw on tools that are not very invasive using bloodwork and sometimes urine. But we may couple that at certain other points in time with more substantial evaluations as well.


What could indicate that it’s time to switch therapies?

Dr. Forsberg:              

So, the most common indicator may be a change in one of those tests that I just mentioned. If we notice that there’s an increasing level of an abnormal antibody in the blood, one that’s usually produced by the myeloma, that may be our first indicator that the myeloma has become more active and that we need to change our treatment approaches. Other times people may develop symptoms from the myeloma that shows that it is becoming active and those would be our indicators. So, those are different ways that we help to monitor the myeloma. One is assessing the bloodwork and other things that we monitor pretty closely.

The other is being vigilant for new problems that may come out. So, we end up spending a lot of time with folks over the years with the myeloma and some of that may feel a bit routine, but we’re always trying to make sure that we’re attentive to new issues as they come up.