PEN Blog Archives

#patientchat Highlights – Patient Advocacy: Boosting Online Presence

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Last week we hosted a “Patient Advocacy: Boosting Online Presence” Empowered #patientchat on Twitter with special guest Marie Ennis-O’Connor (@JBBC). Take a look at the top tweets and full transcript from the chat.

Top Tweets

What are the benefits and/or disadvantages of taking your patient advocacy to online communities/platforms?

 

What are your go-to tips for starting on social media whether it’s starting a blog or just trying to find community?

Full Transcript

Three Factors That Determine Myeloma Treatment Decisions

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

 1. Disease-Related Factors

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

2. Treatment-Related Factors

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

3. Patient-Related Factors

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

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

Arranging Comprehensive End-of-Life Care for Elders with Cancer

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Cancer is a disease no one wants to face. But whether you are the one with cancer or caring for a loved one, contending with a cancer diagnosis inevitably takes a toll. Sometimes, the outcome does not come in the form of remission. Sometimes, it is greeting the new day or taking the next breath.

For some, the outcome is making one’s final days comfortable, meaningful, and peaceful. The reality is that all of us will someday transition out of this life and, for some, cancer will be the reason.

If you or someone you love is facing a terminal cancer diagnosis, planning for end-of-life care makes it possible to meet this last stage of the disease with the dignity, comfort, and peace of mind you and your loved ones deserve.

The Benefits of Remaining at Home

Many people faced with a terminal diagnosis find security and comfort in the ability to remain in their own homes. However, there are some steps that should be taken to ensure that the home is safe and comfortable for someone with an advanced stage of cancer.

Many of the same steps that can be taken to prepare a home for a senior can be used to ensure accessibility for those with cancer. This would include, for example, securing down rugs, removing other obstacles that may pose a fall risk, installing grab bars in bathrooms, and retrofitting doorways and shower stalls for wheelchair access.

In addition to ensuring that the home is safe, secure, and comfortable, it’s also helpful to recruit in-home caregivers to address patients’ evolving needs. For example, home-based caregivers can run errands, help patients with household chores and personal care, including bathing and dressing, and provide much-needed companionship and support.

In-home caregivers can also greatly amplify the benefits of enabling patients to remain at home when nearing the end of life by making it possible for them to remain with friends, family, and their beloved companion animals.

There are few things more comforting than the love of a family pet, and for those facing aggressive cancer, the benefits of simply stroking a purring feline or cuddling with a fluffy puppy cannot be overstated. Companion animals have been shown to reduce blood pressure and heart rate, alleviate depression and anxiety, and promote an overall sense of happiness and well-being. And there is perhaps nothing more precious or more important when you are facing the end of your life than that.

Enlisting Hospice and Palliative Care

For a patient confronting terminal cancer, the love and care of family and friends can be an incomparable source of support, comfort, and companionship. Nevertheless, there are times when a patient’s needs surpass the capabilities of non-professional caregivers.

In times like this, enlisting the services of skilled care providers can mean all the difference to a patient’s comfort and overall quality of life. Hospice care services, for example, are by no means limited to the final stages of a patient’s life.

Hospice care can be enlisted relatively early on following a terminal diagnosis. Similar to palliative care, these skilled nurses and clinicians can offer in-home services to help with disease management and pain control; supporting patients’ physical, mental, and emotional well-being to the greatest extent possible and for as long as possible.

Financial Planning

Anyone who has faced a cancer diagnosis knows that, even with the best medical insurance, cancer can be an obscenely expensive disease. Financial stress relating to cancer treatments can be devastating. Patients who are nearing the end of their lives may experience extreme distress over the perceived financial burden they are leaving their loved one.

This is why effective financial planning is an essential aspect of comprehensive end-of-life care. As profound as the financial weight of cancer care may be for families, there is a range of resources available to help fund treatment and travel, including grants and stipends made available through the American Cancer Society and related organizations. In addition, medical debt forgiveness and low or no-interest repayment plans are available through many health systems.

Proactively pursuing a strong financial plan when you or someone you love is facing the end stages of a terminal diagnosis can provide immense peace of mind, allowing you and your loved ones to focus on what matters most: building memories and cherishing your time together.

The Takeaway

Cancer is cruel and sometimes the best outcome is not allowing it to rob you or your loved one of peace and joy in the final stages of life. Creating a comprehensive end-of-life plan for yourself or someone you love is a difficult, highly emotional journey. Nevertheless, being proactive regarding end-of-life care is an important and empowering act — one that ensures that you and your loved ones find peace, comfort, and security in this final stage of life.

Top Two Reasons Why CLL Patients Should Participate in a Clinical Trial

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Why exactly should a chronic lymphocytic leukemia (CLL) patient think about joining a clinical trial? In In the “Why Should CLL Patients Consider a Clinical Trial?” program, expert Dr. Adam Kittai from The Ohio State University Comprehensive Cancer Center – The James explains the motivation of clinical trials and the benefits CLL patients may receive from clinical trials. 

1. Improve Future CLL Treatments

Clinical trials examine the benefits of a specific treatment for a specific cancer and cancer stage. If you or your loved one participates in a clinical trial, there can be a double benefit to participation. The data gathered from clinical trials assists researchers in improving future CLL treatments for the patient who participates in addition to other CLL patients. Clinical trials can often have underrepresentation by BlPOC patient groups, and it is important for these groups to be represented in trials in order to develop the most refined treatments for all patient races, ethnicities, and genders.

2. Gain Access to Unavailable Therapies

In addition to improved treatments, clinical trial participation has other patient benefits as well. If you or a loved one participates in a clinical trial, the patient gains access to treatments or therapies that may not be accessible in another way. Clinical trials sometimes use different combinations of treatments that haven’t been used previously for a specific stage or type of cancer. Or clinical trials may offer access to a cutting-edge therapy that may ultimately be both more effective while also causing fewer side effects, which could result in a major win-win for patients.

By participating in CLL clinical trials, patients can help improve future CLL treatments for themselves as well as for others. If you have additional questions about clinical trials, ask your doctor or other healthcare provider. If they don’t have information about trials for your specific cancer and stage, they can check with specialists who would more familiarity. You can also find a database of clinical trials at clinicaltrials.gov.

#patientchat Highlights – Let’s Talk Toxic Positivity

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Last week we hosted a “Let’s Talk Toxic Positivity” Empowered #patientchat on Twitter. Take a look at the top tweets and full transcript from the chat.

Top Tweets

 Toxic positivity can cause you to minimize the feelings of others or yourself. What are other signs of toxic positivity and how else can it be harmful?

toxic positivity #patientchat

How can you avoid toxic positivity in yourself and towards others?

Toxic Positivity #patientchat

Closing Thoughts

Toxic Positivity #patientchat

Full Transcript

Elevate Your Online Presence:

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A 12-Month Plan To Increase Visibility and Amplify Your Advocacy in 2023

Are you looking to enhance your online presence and make your cause more visible in the coming year? 

By following the monthly suggestions in this article, you can strengthen your online presence, increase your cause’s visibility, and achieve your goals.

Get ready to take action and make a difference in 2023!

January

Set SMART Social Media Goals

Let’s start the new year off by setting some SMART social media goals. 

Identify what you would most like to accomplish with social media this year, and then set specific and actionable goals to achieve them. To become a reality, a goal should be specific, measurable, attainable, realistic, and time-bound. We call these SMART goals. By setting SMART social media goals, you’ll be able to focus your efforts and measure your progress in a clear and meaningful way.

Here’s how to make a goal SMART:

Specific —the more specific your goal is, the easier it will be to see what you’re trying to accomplish. As an example, let’s say you set a goal to increase your Instagram followers by 10%.

Measurable —  how will you measure success? Using the Instagram example of growing your Twitter followers by 10%, you can measure your progress by checking your follower numbers.

Attainable —  do you think your goal is attainable? Consider whether your goal of achieving 10% Instagram growth is realistic (or whatever goal you have set for yourself).

Relevant —  social media goals need to be relevant.  Is Instagram the most effective platform to achieve this goal? Is another platform more likely to help you grow followers?

Time Specific — lastly set yourself a deadline for your goal, such as achieving 10% more followers by the end of the month.

February

Perfect Your Social Profiles

This month, take some time to review each of your existing social media profiles and ask yourself the following questions:

  • Are the quality of my profile picture and cover pictures consistent across all platforms?
  • Do I have a complete bio and about section? Do they accurately describe me?
  • Is my bio keyword-rich so that others can easily find me?
  • Is my social media handle consistent across all platforms?
  • Are my contact information and website links prominently displayed?
  • Do I have any outdated information pinned at the top of your timeline?
  • Is there any information that needs to be added or changed?

March

Conduct a Social Media Audit

An audit is a great way to figure out where you’re at with social media and what you can improve.

To start, you can create a spreadsheet with columns for each social media platform, such as Facebook, Instagram, Twitter, etc. In each row, you can include the account name, username, and any other relevant information.

Next, track your posting activity for each account by noting the date and number of posts for each day or week.

Finally, analyze the results by looking at metrics such as the number of likes, comments, and shares for each post, as well as the overall engagement and reach of each account. This will give you a sense of which platforms are performing well and which may need improvement. Based on the analysis, you can adjust your strategy for each platform to optimize your results.

Want to dive deeper? Download my step-by-step guide to conducting a social media audit at http://bit.ly/3pvjVa5

April

Conduct a Content Audit

The purpose of a content audit is to evaluate and analyze all your existing content to determine what’s working and what’s not. 

By conducting a content audit, you can identify gaps in your content strategy and make more informed decisions about future content.

 Here are the steps to conduct a content audit:

  1. Collect all of your existing content, including blogs, social media posts, videos, images, etc.
  2. Sort and categorize your content by topic, format, and date.
  3. Assess the performance of your content using metrics like engagement, shares, and views. Consistency, relevance, and quality should also be considered.
  4. Find gaps in your content strategy and identify patterns in your analysis of content. Videos, for example, may be particularly popular with your audience, so you may want to produce more videos.
  5. Gather all the information you’ve gathered during the audit into a spreadsheet or document.
  6. Use the information you’ve gathered to create an action plan for your content. Consider creating more of a certain type of content, improving the quality of your content, or focusing on a certain topic.

May

Create a Content Calendar

Using April’s content audit as a springboard, create a content calendar that outlines the themes and topics you’ll be focusing on in the upcoming months.

A content calendar will help you stay on track with your social media goals and ensure that your content is consistent and relevant. Use a mix of text, images, and videos that are tailored to the platforms you are using. Review your calendar regularly and make adjustments to your posting schedule as news and events arise, to ensure the content remains current.

June

Repurpose Your Content

Review your content audit and determine if any content can be repurposed

By repurposing content, you can increase engagement, reach new audiences, and gain more mileage from your content. In addition, you will be able to refresh old content and make it more relevant.

Here are a few ways to repurpose content:

  1. Make social media posts using bite-sized chunks of information from long-form articles.
  2. Highlight quotes in your blog post and turn them into a quote graphic using a tool like Canva, Quotes Cover, or Adobe Spark.
  3. Video is the most engaging form of content. Break down a popular blog post into video tips.
  4. An audio podcast episode can be turned into a video by adding images, text, and animation.
  5. If you have a video that performed well, you can create a blog post or podcast episode that summarizes the main points.

July

Create Visual Impact

Let’s get creative with our visual assets this month. 

With the help of your visual assets, you can create shareable and engaging content that will help you build your online presence and raise awareness for your cause. Additionally, this is a great opportunity to connect emotionally with your audience and stand out from the crowd.

These are a few ideas to get you started:

  1. Using a tool like Canva or Adobe Spark, create custom images that can be used to create social media posts, blog headers, and more.
  2. Use an infographic maker to create infographics that explain complex information in an easy-to-understand way.
  3. Create shareable images by using quotes from thought leaders in your field.
  4. Add a touch of humor or personality to your social media posts with GIFs created with tools like Giphy.

For more tips read: 

Patient Advocacy: 6 Tips for Making A Visual Impact on Social Media

August

Host a Live Virtual Event

Hosting a virtual event or webinar can build community and engage supporters.

Connecting with your audience in real-time can help you create an interactive and engaging experience. Participation and engagement can also be encouraged with interactive features like polls, Q&A sessions, and breakout rooms. 

Tips for hosting a successful virtual event:

  1. Decide what you want your event to accomplish and plan your content accordingly.
  2. Select a platform that allows you to host your event and engage with your audience in real-time.
  3. Encourage people to register for your event by using social media channels, email, and other marketing channels.
  4. Take advantage of interactive features during the event, such as polls, Q&A sessions, and breakout rooms, to engage your audience.
  5. After the event, follow up with attendees to thank them and to provide them with additional information or resources.
  6. If possible, record and share your event. People who couldn’t attend can watch it later.

September

Build Your Authority on LinkedIn

LinkedIn is flourishing right now and has released some new features to make it an even more engaging place for users.

Discover how top patient advocates are using LinkedIn to build their thought leadership. You’ll find them consistently publishing thought-provoking commentary and original think pieces and engaging with industry leaders. As with all social media, LinkedIn allows you to compete on an equal footing. Use your LinkedIn profile to build online visibility this month to take full advantage of these opportunities.

You can learn more here:

Patient Advocacy: How To Optimize Your LinkedIn Profile

Patient Advocacy: How To Boost Your Visibility on LinkedIn

October

Increase Twitter Engagement

Twitter might not be as popular as Facebook, Instagram, or YouTube, but it still has a large following among healthcare professionals and patient advocates.  

Using Twitter effectively can help you stay informed, encourage collaboration, and amplify advocacy.

Follow these steps to get the most out of Twitter:

  1. Follow relevant accounts and hashtags to stay on top of research, news, and developments.
  2. Build relationships by joining Twitter chats and retweeting content.
  3. Promote your cause by sharing upcoming events and petitions.
  4. Share information and resources that can help educate people about your cause.
  5. Make your content discoverable with hashtags.
  6. Live-tweet events, conferences, or other activities related to your cause. This will allow you to provide real-time updates and engage with a wider audience.

More tips can be found here:

Patient Advocacy: How To Increase Twitter Engagement

November

Try Some New Tools

By taking advantage of the right tools, you can improve your social media activities and maximize your online time.

I have put together a list of my favorite social media apps that I use on a daily basis. The tools in this list will let you edit images, create graphics, and schedule social media posts. Every tool listed is free, so you can try it out before deciding if you want to upgrade.

Check out the list at:

Patient Advocacy: 21 Tools To Help You Achieve More With Social Media

December

Evaluate Your Progress

As the end of the social media year approaches, it’s time to evaluate and measure your progress.

Here are a few steps to help you evaluate your social media efforts over the past 12 months:

  1. Review the goals you set at the start of the year to see how many of them you achieved.
  2. Track your progress with tools such as Google Analytics and native social media analytics. Some key metrics to track are followers, social media channels driving the most traffic to your site, comments, and shares. Analytics and measurement tools are usually available on social media platforms so you can monitor their performance.
  3. Determine what types of content performed well over the last year and what didn’t. By doing this, you’ll be able to figure out what resonates best with your audience. Pay attention to what’s working for you – do more of it – and drop things that aren’t generating much engagement.
  4. Make a plan for the future based on the insights you gained from your evaluation. Set new goals for the year and identify areas for improvement.

By following these tips and strategies, you can build a strong online presence, increase visibility for your cause, and reach your goals over the coming months. 

Here’s to your social media success!

Quizartinib in FLT3-ITD-Positive AML

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Introduction 

I generally think of treatments for AML as old, meaning they were around when I was diagnosed in 1992, or new ones that were developed after that. In the first 25 or so years since I was diagnosed, there were very few new treatments. In the last 5-7 years, however, there have been several new treatments. There are targeted treatments like, Ivosidenib (which I wrote about in November: Ivosidenib and Azacitidine for IDH1-Mutated AML) as well as Ventoclax which is used with a number of different drugs (Azacitidine, Decitibine and low dose Ara C). This post is about a new (to the U.S. anyway) drug, Quizartinib, which is used in AML patients who have a specific mutation FLT3 (fms-like tyrosine kinase 3), specifically a FLT3-ITD (internal tandem duplication) mutation. 

Overview of FLT-3 

There are two different mutations in the FLT3 gene, ITD and tyrosine kinase domain mutations (TKD). The most common mutation in AML is in the FLT3 gene. About 30% of AML patients have an FlT3 mutation, with FLT3-ITD mutations more common than FLT3-TKD ones. Some of the existing drugs for FLT3 mutations treat both. Midostaurin (Rydapt) and Gilteritinib (Xospata) are used in patients with either FLT3 mutation. Quizartinib is only used to treat patients with a FLT3-ITD mutation. 

Current Study of Quizartinib 

The current study, the results of which were presented at the 2022 European Hematology Association (EHA) Annual Meeting in Vienna, tested standard chemotherapy with Quizartinib or with a placebo, followed by maintenance with Quizartinib or placebo for 3 years. More than 500 patients with a FLT3-ITD mutation were treated in the trial. Quizartinib or a placebo were added to the “7+3” standard induction therapy, which consists of 7 days of cytarabine (Ara-C) plus 3 days of daunorubicin or idarubicin. Patients who were in remission after induction either went on to up to 4 rounds of high dose cytarabine consolidation with Quizartinib or placebo and/or an allogeneic (donor) stem cell transplant, followed by up to 3 years of maintenance therapy with Quizartinib or placebo. 

The patients who received Quizartinib had a median overall survival of more than double the patients who received the placebo. Almost all patients in both arms experienced side effects of the treatment (emergent adverse events or AEs). This is not a surprise, most patients treated for AML have significant side effects. Patients who received Quizartinib had more side effects, in particular there was a higher incidence of significant neutropenia (low white counts) and more patients who received Quizartinib discontinued treatment because of adverse events. There were 56 treatment related deaths in the trial, somewhat more in those who received Quizartinib. 

Quizartinib looks like a promising treatment for FLT3-ITD AML patients. I believe that this is the only randomized (Phase III) trial that has been completed of a drug that treats mutations in the FLT-3 gene along with standard chemotherapy. It will be interesting to see how it compares to other drugs for patients with FLT-3 mutations. On the downside, it is only used for FLT3-ITD mutations, unlike Midostaurin and Gilteritinib. 

Further Reading 

Quizartinib Doubles Overall Survival in FLT3-ITD-Positive AML, article from Medscape on the trial of Quizartinib and Chemotherapy, June 13, 2022. 

Quizartinib Prolonged Survival VS Placebo Plus Intensive Induction and Consolidation Therapy Followed by Single-Agent Continuation in Patients Aged 18-75 Years With Newly Diagnosed FLT3-ITD+ AML, from 2022 European Hematology Association (EHA) Annual Meeting in Vienna. 

Daiichi Sankyo’s survival data mean it may finally be ready to compete with Novartis’, Astellas’ marketed AML meds, an article from Fierce Biotech, which covers the biotechnology industry. 

Xospata FDA Approval History, from Drugs.com, gives a history of the FDA approval of Xospata (gilteritinib). 

Overcoming Resistance: FLT3 Inhibitors Past, Present, Future and the Challenge of Cure, Capelli, D.; Menotti, D.; Fiorentini, A.; Saraceni, F.; Olivieri, A. Cancers 2022, 14, 4315. A long journal article on treating FLT-3 AML (I have not read all of it). 

FLT3 Inhibitor Quizartinib Improves Survival in AML reports on an older study showing patients with relapsed/refractory FLT3-ITD-positive AML have improved survival with Quizartinib, given as a single agent compared with standard-of-care chemotherapy. Medscape, July 02, 2018. 

Cancer Awareness Calendar 2023

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January

Cervical Cancer Awareness Month

Blood Donor Month

February

National Cancer Prevention Month

Gallbladder and Bile Duct Cancer Awareness Month

World Cancer Day (February 4, 2023)

National Donor Day (February 14, 2023)

Rare Disease Day (February 28, 2023)

March

Colorectal Cancer Awareness Month

Kidney Cancer Awareness Month

Multiple Myeloma Awareness Month

Triple-Negative Breast Cancer Day (March 3, 2023)

International Women’s Day (March 8, 2023)

Anal Cancer Awareness Day (March 21, 2023)

April

National Cancer Control Month

Esophageal Cancer Awareness Month

Minority Cancer Awareness Month

Minority Health Month

Testicular Cancer Awareness Month

World Health Day (April 7, 2023)

National Oral, Head, and Neck Cancer Awareness Week (April 11-17, 2023)

AML Awareness Day (April 21, 2023)

May

Bladder Cancer Awareness Month

Brain Tumor Awareness Month

Cancer Research Month

Clinical Trial Awareness Week

Melanoma and Skin Cancer Awareness Month

Skin Cancer Detection and Prevention Month

Melanoma Monday (May 1, 2023)

Women’s Check-up Day (May 8, 2023)

Women’s Health Week (May 14-20, 2023)

June

Cancer Survivors Month

Cancer Survivors Day (June 4, 2023)

Men’s Health Week (June 12-18, 2023)

July

UV Safety Awareness Month

Sarcoma and Bone Cancer Awareness Month

 August

Summer Sun Safety Month

World Lung Cancer Day (August 1, 2023)

September

Childhood Cancer Awareness Month

Uterine Cancer Awareness Month

Gynecologic Cancer Awareness Month

Blood Cancer Awareness Month

Thyroid Cancer Awareness Month

Ovarian Cancer Awareness Month

Prostate Cancer Awareness Month

MPN Awareness Day (September 14, 2023)

World Lymphoma Day (September 15, 2023)

Take a Loved One to the Doctor Day (September 19, 2023)

October

Breast Cancer Awareness Month

Liver Cancer Awareness Month

National Mammography Day (October 20, 2023)

November

Lung Cancer Awareness Month

National Family Caregiver Month

Carcinoid Cancer Awareness Month

Pancreatic Cancer Awareness Month

Stomach Cancer Awareness Month

Managing MPN Fatigue During the Holiday

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Managing MPN Fatigue During the Holiday from Patient Empowerment Network on Vimeo.

MPN Care Partner and Patient, Jeff and Summer discuss how to manage fatigue during the holiday season. Summer tracks her and ensures she’s walking daily. Jeff shares to never overschedule yourself and make sure you prioritize your rest.

Transcript

Jeff:

Hi I’m Jeff. 

Summer:

Hi I’m Summer and this is Zelda. Say hi. Say hi, Zelda. 

Jeff:

And we’re your Patient Empowerment Network Leads for the myelofibrosis blood cancer, myeloproliferative neoplasms. And we’re here to talk to you today about fatigue. Oh my gosh, Summer, we’ve got improv in half an hour. 

Summer:

We’ve got two Starlighters parties. 

Jeff:

And we’ve got a Christmas party on the 11th. 

Summer:

And we’re going to go to a concert and the Nutcracker Ballet. 

Jeff:

All of those things happening during the holiday season. 

Summer:

And Christmas shopping. 

Jeff:

Oh, Christmas shopping, I forgot. That’s exhausting. Are you going to be able to handle it? I know fatigue is a real symptom of it, of myelofibrosis. 

Summer:

Well, it’s a symptom of it as long as you handle it. But I always get eight hours sleep and on my phone, my Apple Watch records my sleep. And I get a 100 sleep score. And it makes a huge difference. Plus I go to the gym and I do exercise and walking for one hour every day to get my 10,000 steps. 

Jeff:

And the exercise helps with your fatigue? 

Summer:

Yeah, it makes me tireder. Of course. 

Jeff:

So, you sleep well and you track it so well. She’s even got me tracking my sleep and I don’t have myelofibrosis. But we check in with each other to see that we get enough sleep. And we’ve also adjusted our schedule, haven’t we? 

 Summer:

Yeah, we have our performances at our theater a lot more matinees which is good because older people, no matter what, like to do things earlier anyway. 

Jeff:

So, we’ve made significant adjustments in our life to deal with the fatigue portion of myelofibrosis. And we’ve made even more in this holiday season by scheduling things correctly and doing what you’ve just described. 

Summer:

I mean, at 1:15 we’ve got a rehearsal, improv rehearsal. Then we have people that want to check our theater. Then I have another comedy rehearsal and Jeff has a guitar singing rehearsal. 

Jeff:

We would encourage you folks to do the same thing in this holiday season. Don’t over schedule yourself. Get enough rest and have a happy holiday. Bye from Jeff. 

Summer:

Bye from Summer. Bye from Zyada. Say bye bye. 

Jeff:

We’ll see you next time. 

8 Tips For Coping With Christmas When You Have Cancer

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Christmas is traditionally a time of celebration, feasting on festive foods and drinks and gathering with family and friends. However, if you have cancer, this may also be a time of overwhelming emotions, exhaustion, or physical discomfort. Add in concerns about the current coronavirus pandemic, and you’ve got a recipe for a stressful holiday.  “As our second COVID Christmas is fast approaching and with our world so desperately wanting to return to normal comes a lot of holiday festivities, says Marissa Holzer, who has been living with metastatic breast cancer since 2014.  “Some of these parties and gatherings may bring unnecessary stress and anxiety, even during normal times, or they may make an immunocompromised individual feel unsafe.”

Let’s take a look at some ways we might reduce the stress of the festive season.

1. Plan Ahead

Consider what aspects of Christmas may be difficult for you, and plan ahead of time for what will help you cope.  You may find it useful to write a list. For example, keep snacks, hand sanitizer, and masks in your bag when traveling away from home.

2. Listen to Holiday Music

This tip comes from two-time breast cancer survivor, Terri Coutee, who finds listening to holiday music lifts her spirits. “It can be in the form of quiet instrumental when I am feeling peaceful and reading or resting,” she explains. “When I am cooking or decorating I might put on a favorite artist with a little jazz or swing to it and dance a bit while preparing for the holidays.

3. Ask for Help

The run-up to Christmas is a hectic time filled with food shopping, gift wrapping, decorating, and extra household jobs. Now is the time to call on the assistance of those who offered to help when you were first diagnosed.  Reach out to them and ask for practical help with Christmas chores. Also, do as much of your grocery and gift shopping online as possible.

4. Schedule Rest Time

Don’t expect to be able to do what you could do before cancer. Know your limits and don’t expect too much of yourself. You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.

Cathy Leman, who works with post-treatment survivors of hormone-positive breast cancer, says that “one thing that helps my clients cope during the holidays is being deliberate in creating space for themselves; ideally before they start their day. As little as ten minutes devoted to setting an intention, doing deep breathing or journaling can help you feel grounded and balanced.”

5. Adjust Your Expectations

Arising out of the previous tip, Jennifer Douglas, who was diagnosed with DCIS, suggests keeping expectations flexible. “Since our energy fluctuates so much during and after treatment it can be really difficult to know how much to put on one day,” she explains. “I found that giving myself grace to do a lot, or a little, with regards to holiday preparations, enabled me to feel more at peace. Some days I felt good and could do a lot, and other days I didn’t have the energy. Either way, I listened to my body and did what I could. Having flexible expectations of myself helped me get through the busy season while preserving my precious energy.”

6. Set Firm Boundaries

When you visit with friends and family the subject of your diagnosis and treatment may come up at some point. It’s perfectly acceptable to tell someone that you don’t want to talk about cancer if you don’t. It can be helpful to plan ahead of time how you will respond to these questions.

Rod Ritchie who was diagnosed with breast cancer in 2014 (followed in 2016 with a diagnosis of prostate cancer), steers clear of cancer conversations as much as he can. “Because I don’t want to turn a Christmas party into a pity party, I don’t mention the ‘C word’ unless it comes up for discussion,” he says. “ It doesn’t hurt me to have a day off the topic as well!”

7. Feel What You Feel

Christmas is a time of high expectations and the reality of our experience doesn’t always match these expectations. Tell yourself that’s ok. Let yourself feel whatever it is that you are feeling. Even if how you feel doesn’t correspond to what others expect, your feelings are still real and valid.

Breast cancer survivor, Nancy Stordahl, still grieves the death of her mother from breast cancer and finds Christmas can be a challenging time. “There is nothing wrong with honoring your grief by feeling it,” she says. “No one should feel guilty about grieving during the holidays or during any time of year, for that matter.”

Prostate cancer survivor, Gogs Gagnon, who lost his sister to ovarian cancer says he finds “comfort in sharing stories at family gatherings. Reliving my favorite memories and allowing myself to cry without fear of judgment is incredibly healing and therapeutic.”

8. Prioritize What is Best For You

You get to decide the kind of Christmas you want. It’s ok to say no to certain things, such as not visiting friends or family. Discuss your needs with friends and family, but remember that it’s ok to prioritize what’s best for you, even if others don’t seem to understand. In the words of Marissa, “My motto this season:  If it doesn’t bring peace, joy and love to your heart it is absolutely okay to say no.”

My wish for you this holiday season is that it will be a time filled with an abundance of peace, joy and love, and that the new year will bring good health and happiness to us all.

Merry Christmas.

Three Ways Patients Can Access Clinical Trials

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What are some ways that cancer patients can access clinical trials? In the “How Can Clinical Trials Be Accessed?” program, expert Dr. Seth Pollack from Robert H. Lurie Comprehensive Cancer Center and cancer survivor and patient advocate Sujata Dutta share three ways cancer patients can access clinical trials and advice to patients about clinical trials.

1.Talk to Your Doctor or Healthcare Provider

If you or your loved one would like to learn about available clinical trials, ask your doctor or other healthcare provider. They can find clinical trial information for you, or they can check with a specialist who might have clinical trial information readily available about your specific type of cancer.

2. Get a Second Opinion

If you or your loved one’s doctor does not find any clinical trials or if you want to find some additional options, getting a second opinion could help with locating clinical trial options. If you can schedule a second opinion consult at an academic medical center, you are more likely to find some clinical trial options. Academic medical centers are often connected to research universities that carry out clinical trials and research studies.

 3. Check Reliable Patient Advocacy Websites

Cancer patients and their loved ones can also reliable patient advocacy sites for information about clinical trials. In addition to the Patient Empowerment Network (PEN) website, try resources like the American Cancer Society and The Leukemia & Lymphoma Society (LLS) websites. The National Institutes of Health also maintains a large database of clinical trial options on the ClinicalTrials.gov website.

By taking advantage of clinical trial opportunities, cancer patients can access tomorrow’s medicine today, receive closer monitoring of their cancer, and help improve and refine treatments for future treatments. If you’d like to learn more about clinical trials, check out our Are Clinical Trials Safe? program.

Navigating Thyroid Cancer: Tips from Someone Who’s Been There

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So you’ve been diagnosed with the “C” word, specifically thyroid cancer, and now you’re seeing a whole new care team. This usually includes an endocrinologist who specializes in disorders of the endocrine system, including the thyroid. As a patient who has been living with thyroid cancer on and off for the past 5 years, here is a non-exhaustive list of tips about treatment and how to manage, including questions to ask your care team and tips for your appointments as you go along your own cancer journey.

11 Tips for Navigating Thyroid Cancer

  1. Have a good relationship with your endocrinologist, as they will be treating you for life. 
  2. Make sure your values, morals, and opinions are respected as part of the treatment process. The cure isn’t the only part of the cancer journey. 
  3. Ask about different treatment options (i.e. surgical removal). 
  4. Inquire about potential side effects of each treatment and how to mitigate them, especially if you undergo chemotherapy and/or radiation. 
  5. Ask for clarity on medical jargon, such as thyroid-specific blood tests. 
  6. Bring in a list of questions to each appointment. 
  7. If possible, have a caregiver, such as a family member or friend, come with you to each appointment as a second set of eyes and ears. 
  8. Join support groups that are available both online and in-person. 
  9. Utilize your patient portal, if you have one, for messaging your care team, renewing prescriptions, and viewing lab and ultrasound results. 
  10. If you end up having to take synthroid, keep a diary or log of how you feel at each dose to be able to report back to your care team. 
  11. Advocate for yourself if something doesn’t feel right. 

As a patient in a new and very unique environment with a disease you never thought you would get, knowing how to navigate this beautiful, yet terrifying journey is hard. However, if you stick to your values, ask questions, create a strong relationship with your care team, and advocate for yourself, it’ll make the process a lot smoother. 

MPN Patient and Care Partner Share Clinical Trial Experience

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MPN Patient and Care Partner Share Clinical Trial Experience from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share their experience participating in a COVID-19 clinical trial. Jeff believes that if you get an opportunity to participate in a clinical trial, you should take it. There are so many new medications in the pipeline for MPNs and you can help change the standard of care for future patients.  

See More from Jeff & Summer

Transcript

Jeff:

Hi, I’m Jeff. 

Summer:

Hi, I’m Summer and hi, I’m Zelda. 

Jeff: And we’re your Network Empowerment Leads for the Patient Empowerment Network and we’re the leads for the myelofibrosis section, which Summer is a myelofibrosis patient. And we’re here today to talk to you about clinical trials. And we’ve had some experience, but what we’re going to tell you about today is not a trial that deals with myelofibrosis. But our experience in the COVID-19 vaccine trial for Moderna at University of California San Diego. And tell us about how it started, Summer. 

Summer: Well, I’ve never been in a trial test before, and neither have Jeff. We went to UCSD, to where it’s conducted, and they were very friendly, very nice, very encouraging. But the strange thing, one of the things is I thought there’d be a huge waiting room. And they took us right in, and the whole time we were there, I didn’t see anyone other than the staff. So, I went in one of the rooms, and various doctors and nurses and assistants came in to take blood, to take my temperature, to ask me medical questions, things like that. The whole thing took probably about an hour and a half, and they were very encouraging. And then the last person that came in said, well, I’ll be back in a few minutes, and I’ll bring the vaccine in. So, I thought, oh, I guess I made it. But then when they came in, he said, no, you consulted with another doctor, because I have myelofibrosis that could slant the test. So, I wasn’t able to sign up and help people. But I do remember another thing about COVID. I was in the first group, because I’m older and have a disease, to get the vaccine. And I remember it was at Petco Park in San Diego, and there were so many people there that people had to park blocks from there. And that’s fine. Walking is no big deal. There were a lot of really old people that could barely walk, and they were going, I’ll never forget that. 

And there was one woman that was very overweight. She was in a walker. The poor old thing could hardly walk. So, I remember I walked behind her the whole time, because I thought I can call for help if anything happens. But I still have that picture. And here’s Jeff’s view. 

 Jeff:

So, I went up with Summer to sign up for the vaccine test as well with UCSD. We thought we could make a difference and help. So, I went through the same, they gave everybody the same thing. Different doctors and nurses and assistants came in. They took your blood. They took your medical history and so forth. And then they went out of the room and left me there. And they came back in, just like Summer. And for me, they came back in with a hypodermic needle filled with vaccine or placebo. And they gave me the shot. And of course, they don’t tell you whether you had the placebo or the vaccine. And they sent me home. But before I went home, they had me load this little app onto my phone. And I have to fill it out every Sunday. I’ve been doing that now for about two and a half years, I guess. Whether you just got a couple of questions and you submit it. It’s part of their program. And they also periodically… I have to come back for other appointments. And they actually, of course, made a second appointment. So, I got the second shot in the Moderna combination. And they kept, each time I came back, they’d take blood. They wanted to see how the blood was forming antibodies, I guess. And so, I kept coming back. And they didn’t tell you what was happening until finally, I got an email that said the doctor was going to have a Zoom presentation or a web presentation. And basically, he came on and he gave the statistics that they had collected and said that the vaccine seemed to be working very well which was really nice to see. But we stayed in the… We would still stay with them because they wanted to see how long it lasted. And whether your antibodies would last. 

 So, I’ve been still going regularly. Eventually they gave us the third shot, the booster shot. And I haven’t had any word whether I’m supposed to have the next booster shot. I have an appointment with them in about two weeks to go. They call you back so they can check your blood. And presumably I might get another vaccine. So, it was a very interesting experience. And like Summer mentioned, I didn’t hardly ever see any people there except the staff. The place was clean. They were very, very friendly. It seemed to be well organized and run. And we felt happy. I felt happy to be part of the solution for COVID anyway. And that’s my experience. 

So, our thought to you all was if you get an opportunity to participate in a trial, take it. Especially for those of you with myelofibrosis, there’s a lot of medicines coming down the pipe. They may need some people to be in trials. If you meet the requirements, go ahead and take it. It’s a worthwhile experience. And you can maybe be helping medicine. That’s it for this week. I’m Jeff. 

Summer:

I’m Summer. I’m Zelda. 

Jeff:

See you next time. 

Summer:

Bye. 

Ivosidenib and Azacitidine for IDH1-Mutated AML

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There has been another significant advance in the treatment of Acute Myeloid Leukemia (AML) at least for the small subset of patients (6-10%) who have a mutation in one of their genes called IDH1 (isocitrate dehydrogenase 1).   

Until 5-7 years ago, the typical initial treatment (called induction) for patients with AML consisted of relatively high doses of cytarabine (Ara-C) and another chemotherapy called an anthracycline (usually either daunorubicin or idarubicin).  Cytarabine is given as a continuous infusion for seven days and a daunorubicin or idarubicin is given on the first 3 days (this is commonly referred to as “7 + 3“regimen). There are other regimens that are sometimes used although most contain cytarabine.  This regimen is effective, but quite toxic and usually reserved for healthier fitter patients (generally under 65 without comorbidities like diabetes, or certain heart conditions). 

In 2018, the Food and Drug Administration (FDA) approved venetoclax and azacitidine for use in older patients or those with comorbidities.  Earlier this year, FDA approved Iivosidenib (used in combination with azacytidine) for newly diagnosed AML patients an IDH1 mutation.  The approval was for “adults 75 years or older, or who have comorbidities that preclude use of intensive induction chemotherapy”.  This was based on a clinical trial reported in the New England Journal of Medicine (NEJM): Ivosidenib and Azacitidine in IDH1-Mutated Acute Myeloid Leukemia,.  Ivosidenib is not a brand new drug, it was approved in 2018 for relapsed or refractory AML. 

The current approval was based on a global, double-blind, randomized, placebo-controlled trial comparing AML patients with an IDH1 mutation treated with ivosidenib and azacytidine with patients treated with azacytidine alone.  The primary end point of the trial was event-free survival (EFS), defined as the time until treatment failure (i.e., the patient did not have complete remission by week 24), relapse or death.  The first group of patients, who received ivosidenib had an EFS at 12 months of about 37% versus 12% in the placebo group.  In addition, the median overall survival (that is half of the patients lived at least this long) was 24.0 months with ivosidenib and azacitidine versus 7.9 months with azacitidine alone.  This is a big difference, although there is still a lot of room for improvement.  In addition, there were fewer infections in the ivosidenib, group although there were more incidences of low white blood counts (neutropenia) and bleeding in that group. 

While this is good news, showing ivosidenib (Tibsovo) and azacitidine (Vidaza) is better than azacitidine alone, most patients with AML with an IDH1 mutation who are not good candidates for intensive induction chemotherapy during the time period of the trial would likely have been treated with azacitidine and venetoclax (Venclexta).  The combination has been shown to be much more effective than azacitidine alone.  My guess is that azacitidine alone was chosen as the comparison, since the ivosidenib trial started enrolling patients in March 2018 (presumably the protocol for the trial was completed several months before that) and venetoclax was not approved until November, 2018.  The question remains, which is better ivosidenib and azacitidine or azacitidine and venetoclax.  I believe we will probably never know.  Given that AML is already a rare disease and no more that 10% of AML patients have an IDH1 mutation, it is not likely such a trial would be done.  Instead, it seems more likely that trials will look at the 3-drug combination of ivosidenib, venetoclax and azacitidine.  Perhaps a trial with 3 arms may be done, comparing azacitidine with ivosidenib, or venetoclax or both.  I hope the 3-drug combination will be more effective than either ivosidenib or venetoclax combined with azacitidine.  If the side effects are not much worse, then standard therapy for AML patients with an IDH1 mutation who are not good candidates for intensive chemotherapy would become the 3-drug combination.  This would happen faster than first comparing ivosidenib to venetoclax and then comparing the better of those two to the 3-drug combination.   For younger healthier patients, ivosidenib is being combined with intensive chemotherapy in clinical trials.

Further reading: 

Ivosidenib and Azacitidine in IDH1-Mutated Acute Myeloid Leukemia, the original article from the New England Journal of Medicine (N Engl J Med 2022; 386:1519-1531). 

Ivosidenib and Azacitidine for IDH1-Mutated AML, mostly a repeat of the abstract of the above NEJM article, but also includes some commentary. 

Ivosidenib with Chemotherapy New Option for Some People with AML an article on Ivosidenib and Azacytidine from Cancer Currents: An NCI Cancer Research Blog. 

This AML Treatment Option is an Alternative to Induction Therapy an article on Ivosidenib and Azacytidine from PatientPower. 

FDA approves ivosidenib in combination with azacitidine for newly diagnosed acute myeloid leukemia an article about the drug approval, from Practice Update (registration may be required). 

Ivosidenib or enasidenib combined with intensive chemotherapy in patients with newly diagnosed AML: a phase 1 study, an article in Blood (Volume 137, Issue 13, April 1 2021) about a preliminary study of Ivosidenib and Enasidenib (for patients who have a mutation in IDH2) along with intensive chemotherapy (“7+3” induction, Ara-C consolidation). 

FDA grants regular approval to venetoclax in combination for untreated acute myeloid leukemia, an article from the FDA on the approval of Venetoclax for treating AML (October, 2020). 

FDA approves first targeted treatment for patients with relapsed or refractory acute myeloid leukemia who have a certain genetic mutation, an article from the FDA on the initial approval of Ivosidenib for treating AML (July, 2018).FDA approves first targeted treatment for patients with relapsed or refractory acute myeloid leukemia who have a certain genetic mutation, an article from the FDA on the initial approval of Ivosidenib for treating AML (July, 2018). 

#patientchat Highlights – The Power of Giving

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Last week we hosted a “The Power of Giving” Empowered #patientchat on Twitter. Take a look at the top tweets and full transcript from the chat.

Top Tweets

What does giving mean to you and how do you actively give?

What talents do you utilize when giving?

Who gives or gave to you that now inspires you to give to others?

The Power of Giving #patientchat

Full Transcript