Patient Stories Archives

From Cancer Diagnosis to Healing: 21 Tips and Resources for Body, Mind, and Spirit

December 6, 2024/in Patient Stories, PEN Blog /by Marie Ennis-O'Connor

Last month, I quietly marked a significant milestone—20 years since my breast cancer diagnosis. It’s a strange thing, this “20-year cancerversary”. It feels like a lifetime ago, yet it still feels raw and surprisingly recent. The shock of that day, hearing the words “you have cancer”, and the surreal weeks and months that followed, remain forever etched in my memory.

Looking back, I often think about the things I wish I had known back then—truths and lessons that could have eased the journey or offered comfort in moments of anxiety. That’s why I want to share some of those insights with you if you’re beginning your own cancer journey. I hope these tips will provide guidance, strength, and perhaps a little light to help you navigate the challenges ahead.

1. Become Your Own Best Advocate: Take charge of your healthcare journey. Ask questions, seek second opinions, and clearly communicate your needs and concerns to your medical team. Don’t hesitate to advocate for information that is tailored to your specific situation, age, and lifestyle.

Further Reading: Patient Advocacy: Understanding Your Illness – Patient Empowerment Network

2. Educate Yourself: Learn about your specific cancer type, treatment options, and the latest research. Knowledge is power and can help you make informed decisions. Use trusted sources like your medical team, cancer organizations, and support groups. Understand that the right information, provided at the right time, empowers you to make informed decisions.

Further Reading: How to Read and Understand a Scientific Paper – Patient Empowerment Network

3. Participate in Shared Decision-Making: Shared Decision Making (SDM) means you and your doctor work together to make choices about your healthcare. You’ll learn about the pros and cons of different treatments, how likely they are to work, and what side effects might happen. Don’t be afraid to ask lots of questions until you feel comfortable with the options presented to you.

Search here for articles on SDM.

4. Explore All Treatment Options: Discuss various treatment approaches with your doctor, including standard medical treatments, clinical trials, and complementary therapies like acupuncture or massage alongside your regular medical care.

Search here for articles on clinical trials.

5. Understand Cancer-Related Fatigue (CRF): Cancer-related fatigue is different from the tiredness you feel after a long day. It’s like having your battery completely drained, and no amount of sleep or rest seems to recharge it. This kind of fatigue can be overwhelming and make it difficult to do even simple everyday tasks. It’s important to talk to your doctor if you’re experiencing this, as there may be ways to manage it and improve your energy levels.

Read How To Cope With Cancer-Related Fatigue for more tips and information.

6. Be Aware of “Chemobrain”: Understand that cancer treatment can affect cognitive function. This is often called “chemobrain,” even if you didn’t have chemotherapy. It can feel like a mental fog, making it hard to remember things, focus, or think clearly. This can be frustrating, but it’s important to know that many people experience this. Staying mentally and physically active can help your brain recover. This could include things like puzzles, reading, socializing, and light exercise.

Further Reading: Is Chemobrain Real? Coping With Cancer-Related Cognitive Changes – Patient Empowerment Network

7. Manage Your Energy Bank: Be mindful of your energy levels. Think of your energy as a bank account – balance energy expenditure with rest and relaxation to avoid “overdrawing” your reserves. Prioritize tasks and schedule activities for times when you have more energy. Build in rest breaks throughout the day.

8. Engage in Light Exercise: Even though you may not feel like it, regular light exercise can help reduce fatigue and improve your mood. This doesn’t have to be anything strenuous – a short walk, some gentle stretching, or chair exercises can make a difference. Start small and gradually increase your activity level as you feel able. Listen to your body and don’t push yourself too hard. Even a little bit of movement can go a long way in improving your overall well-being.

Watch: What Role Does Exercise Play in Cancer Treatment? – Patient Empowerment Network

9. Eat a Healthy Diet: Nourish your body with a balanced diet that supports energy levels and avoid processed foods. Choose a variety of fruits, vegetables, whole grains, and lean proteins. Drink plenty of water throughout the day. Dehydration can worsen fatigue and other side effects. If you’re struggling with taste changes or nausea during treatment, consult an oncology dietitian for personalized advice and support. They can offer strategies to manage these side effects and maintain adequate nutrition.

Further Reading: Nourishing Your Body and Mind: Nutritional Advice For Cancer Survivors – Patient Empowerment Network

10. Prioritize Your Well-being: Facing cancer can be incredibly stressful, and it’s easy to get caught up in appointments, treatments, and worries. But taking care of your emotional and mental health is just as important as taking care of your physical health. Engage in activities that bring you peace and relaxation, such as meditation, spending time in nature, or pursuing hobbies. Even a few minutes of quiet reflection can help calm your mind and reduce anxiety. There are lots of apps and online resources to guide you.

11. Build a Support System: Connecting with others can make a huge difference in your emotional well-being and help you cope with the challenges of cancer. Support groups offer a safe space to connect with others who truly understand what you’re going through. If you’re not feeling up to in-person meetings, online forums and communities can be a great way to connect with others from the comfort of your home.

Check out this list of Online Cancer Support Groups and Organizations by Type of Cancer – Patient Empowerment Network

12. Allow Yourself to Feel Your Emotions Fully: It’s perfectly normal to have a rollercoaster of emotions when you’re dealing with cancer. You might feel scared, sad, angry or frustrated. Don’t judge yourself for having “negative” emotions. They are a natural part of the human experience, especially during difficult times. Allowing yourself to feel your emotions fully is an important part of processing what you’re going through.

13. Tune into Your Feelings: Taking time to check in with your emotions can help you understand your feelings with more awareness. Think of it like taking your emotional temperature. Set aside a few minutes each day when you can be still and undisturbed. Take a few deep breaths, inhaling slowly and exhaling fully. This helps to calm your mind and body. Ask yourself “What am I feeling right now?” Don’t overthink it, just notice the first emotion that comes to mind. Name the emotion without judgment. For example, “I’m feeling anxious,” or “I’m feeling sad.” Pay attention to any sensations in your body associated with the emotion. Is your chest tight? Are your shoulders tense? Do you feel a knot in your stomach? Don’t try to change the feeling or push it away. Simply acknowledge it and let it be.

Important Note: If the emotion intensifies or becomes overwhelming, stop the exercise and try again later. You can also seek support from a therapist or counselor if you’re struggling with difficult emotions.

14. Write Down Your Feelings: Sometimes, it’s easier to make sense of your emotions when you put them into words. Journaling can be a powerful tool for processing your experiences and navigating the emotional ups and downs of cancer. Looking back on your journal entries can also help you see how far you’ve come and recognize your own strength and resilience.

Further Reading: The Power of Journaling During Cancer Treatment – Patient Empowerment Network

15. Pay Attention to Grief Triggers: Anniversaries of your surgery, diagnosis, and other cancer-related milestones can reawaken difficult memories and emotions. Be mindful of these dates and plan ahead for ways to cope with potential emotional triggers. This might involve scheduling time for self-care, talking to a loved one, or engaging in a relaxing activity. You might also consider creating a meaningful ritual to acknowledge the anniversary or milestone such as lighting a candle or visiting a special place.

Further Reading: Grief, Loss, and the Cancer Experience – Patient Empowerment Network

16. Accept Anxiety as a Normal Response: Anxiety is a natural response to a challenging situation. It’s like an alarm system that gets triggered when your body perceives a threat. In this case, the threat is the cancer diagnosis and all the unknowns that come with it. When you acknowledge and accept your anxiety, you can start to develop healthy ways to manage it. There are many effective strategies for coping with anxiety, such as relaxation techniques, mindfulness practices, and exercise. However, if you find that your anxiety is overwhelming or interfering with your daily life, reach out for help and support.

Further Reading: Coping With Scanxiety: Practical Tips from Cancer Patients – Patient Empowerment Network

17. Identify Your Body’s Stress Response: Stress can manifest in many ways, and often, our bodies give us clues long before we consciously register feeling stressed. Learning to recognize your unique stress signals can help you manage anxiety and take steps to calm yourself down. For example, when you’re anxious, you might find yourself taking short, shallow breaths, or your heart might pound or feel like it’s skipping beats, Once you’re aware of your physical stress response, you can take steps to interrupt it. This might involve deep breathing exercises, progressive muscle relaxation, or mindfulness techniques.

18. Acknowledge Emotional Trauma: Cancer is more than just a physical disease; it can be a deeply emotional and psychological experience. It can shake your sense of self, challenge your beliefs about the world, and bring up difficult emotions like fear, vulnerability, and grief. Recognizing the emotional trauma of cancer validates your experience and allows you to give yourself the compassion and care you deserve.

Further Reading: Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery – Patient Empowerment Network

19. Honor Your New Reality: For many of us cancer is a life-altering experience. It can shift your priorities, change your outlook on life, and even redefine who you are. It’s important to acknowledge and honor this new reality, even as you grieve for the life you had before. Even in the face of adversity, there is potential for growth and transformation. Cancer can teach you valuable lessons about resilience, gratitude, and the importance of living each day to the fullest.

Further Reading: Finding Your New Normal: 7 Steps To Navigating Life After Cancer – Patient Empowerment Network

20. Find the Joy: Don’t let cancer overshadow the beauty and goodness in your life. Actively seek out experiences that bring you happiness and fill you with gratitude. Spend time outdoors, breathe in the fresh air, and appreciate the beauty of the natural world. Share laughter, stories, and hugs with the people who matter most to you.

Watch: Meditation on Joy – Patient Empowerment Network

21. Live with Purpose: A cancer diagnosis can be a profound wake-up call, prompting you to re-evaluate your priorities and consider what truly matters in life. This is an opportunity to connect with your deeper values and live each day with intention and purpose. Cancer may strip away the illusion of certainty, but it also illuminates what truly matters. Let this heightened awareness guide you as you rebuild your life, find hope in unexpected places, and honor the resilience you never knew you had. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

Wishing you strength and healing on your journey.

Marie Ennis-O'Connor

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

hcsmmonitor.com/

Men Get Breast Cancer Too: The Forgotten Face of Breast Cancer Awareness Month

October 17, 2024/in BC Blog ND, BC Blog WN, Breast Cancer, Patient Stories, PEN Blog /by Marie Ennis-O'Connor

There is a popular misconception that breast cancer is a disease that only affects women, but it can affect anyone, no matter what their gender. Rod Ritchie, a male breast cancer survivor and advocate, is working to dispel this misconception, advocating for men with breast cancer to receive the recognition and support they deserve. In this interview, Rod discusses the stigma surrounding male breast cancer, critiques the pink-washing of breast cancer awareness and the exclusion of men from these campaigns, and shares his vision for a more inclusive approach to education and support in the future.

Rod, you’ve spoken about how the ‘Pinktober’ campaign can feel exclusionary to men with breast cancer, and how this can impact awareness, support, and even diagnosis for men. Can you elaborate on these impacts and suggest ways to create a more inclusive campaign?

The pink issue for men starts with many of them being unaware they are even susceptible to the disease. A subsequent later diagnosis can lead to a poorer prognosis. The pink charities need to double down on their efforts to explain and publicize the genderless nature of the disease.

You’ve mentioned that receiving a breast cancer diagnosis was especially challenging as a man. Can you tell us more about that?

My first emotion was the reminder that my mum died from breast cancer when I and my three brothers were young. That said, I quickly sought treatment and was pleased that the pink dollars had funded much research which obviously benefited all genders presenting for treatment.

You and Rob Fincher created the “Male Breast Cancer Manifesto”, which aims to raise awareness and improve outcomes for men diagnosed with breast cancer. Can you highlight some of its key action points,

The Manifesto is now seven years old and I’m really pleased to see how much progress has been made in achieving its goals. These include a reduction of sexual stereotyping, a day set aside in October for men, more inclusive imagery, and better information. Remaining on the list are, more research on men and the disease, and advocacy for screening programs for men with a genetic propensity and/or a family history of breast cancer. Unfortunately, Rob is not around to see if these last two points are achieved.

For someone who wants to raise the issue of male breast cancer but feels hesitant, what advice would you give them to confidently and constructively engage with a charity?

Breast cancer charities are generally keen to get feedback, so I’d say make a list of changes you’d like them to consider and send them to the director. And, if at first you don’t succeed, hang in there. All real change takes time.

Sharing personal stories is a powerful advocacy tool. What was the most impactful or surprising response you received after sharing your story publicly?

I was surprised by how readily and enthusiastically my story was received by the breast cancer community, how widely it was shared, and how much media attention I received. I must say this has kept me optimistic about change and is the reason I’m still on the case 10 years later.

Looking ahead, what are the most critical areas where you believe we need to focus our efforts to improve the support and outcomes for men with breast cancer?

More research on breast cancer in men and other genders would help refine treatments and improve their effectiveness. Additionally, providing better access to screening for everyone at risk is crucial for early detection and successful outcomes.

About Rod Ritchie

Rod is a Sydney-born writer, internet publisher, and breast cancer patient activist, diagnosed in March 2014, with Stage IIIB IBC. Two years later, he was diagnosed with prostate cancer. Currently he’s NED for both cancers. He has a website MaleBC.org and you can follow him on X @malefitness.

Male Breast Cancer Manifesto

https://malebc.org/?page_id=875

Marie Ennis-O'Connor

hcsmmonitor.com/

A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis

June 20, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Programs, Patient Stories, PEN Blog /by Kara Rayburn

A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis from Patient Empowerment Network on Vimeo.

Meet Paloma, a 58-year-old acute myeloid leukemia (AML) survivor. After experiencing breathlessness, sore gums, and other symptoms that were initially misdiagnosed, she trusted her instincts and sought further medical support, leading to her AML diagnosis. Discover Paloma’s journey and the vital importance of being proactive and staying [ACT]IVATED in your cancer care.

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

How an AML Survivor’s Resilience Saved Her Life

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Transcript:

Being ACTIVATED in your cancer care is critical and also a continuous journey. My name is Paloma, and I’m eager to share my journey as an acute myeloid leukemia patient in the hopes that it will help other patients and families. AML doesn’t discriminate; it can affect anyone, regardless of lifestyle or healthy eating habits.

I was 58 when I was diagnosed with AML, and my diagnosis was pretty shocking to me. I learned that you really need to trust your instincts when it comes to your health. I felt like something was off with my body, but my initial symptoms were only some breathlessness upon exertion and sore gums. But then additional symptoms started including a dry cough, some flu-like symptoms, and lumps under my armpits. I saw my primary care provider, and she prescribed antibiotics and sent me for a chest x-ray that came back without issues.

When my breathlessness worsened along with profound fatigue, my doctor then sent me to get an ECG and additional blood tests to help determine what might be wrong. While I was waiting for my test results, my co-workers noticed that I looked thinner with my skin also being paler than usual. This was just the beginning of my AML journey. My blood tests came back with abnormal hemoglobin and blast levels, and my doctor arranged for me to be admitted to a well-regarded cancer center. I was fortunate that it was only 20 miles away but realize that not all cancer patients are this fortunate.

After seeing my AML specialist at the cancer center, he wanted to start my chemotherapy right away to fight the cancer. I was fortunate that I didn’t have issues with my intravenous line for receiving my chemotherapy. But I learned that this can be a common issue for AML patients after I joined an online AML support group. I had my first round of chemotherapy, and my daughter was able to visit me during this time. However, my care team kept monitoring my neutrophils and decided that I needed to start a second round of chemotherapy. It was now during the COVID-19 pandemic, and hospital visitors weren’t allowed.

I counted myself as fortunate that I could still continue with receiving chemotherapy. What would have happened if I’d gotten seriously ill during the early pandemic? I shudder to think that things likely would not have been easy. The hospital staff helped to keep my spirits up and also with setting up a tablet for me to do video calls with my family and friends while I was in the hospital.

Though that round of chemotherapy put me into remission for a period of time, I later came up as MRD-positive and received a targeted chemotherapy as a third round of therapy followed by a stem cell transplant. I had some graft-versus-host disease issues but got through them. I feel fortunate that there are some different treatment options for AML and would like to participate in a clinical trial to help advance treatments if I need another option on my journey. I’ve kept in touch with other patients in my AML support group during my journey from diagnosis, treatments, and recovery. I know that I couldn’t have gotten through my physical and mental challenges without them.

Though AML sounded scary at first, the future of treatment looks bright to me with emerging research and treatment options. I hope that sharing my story will make a difference for other AML patients and especially those who may come up against barriers.

No matter who you are, being proactive is a critical step in your AML journey. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.

Share Your Feedback About [ACT]IVATED AML

Tips for Parenting with Cancer

April 25, 2024/in Bright Spot Network, Partner Resources, Patient Stories, PEN Blog /by Haley Pollack

In November 2018, I was diagnosed with Stage IIIc colon cancer. I was 37 years old and I just returned to work from my parental leave. When I heard those dreaded words “you have cancer” my first thoughts were of my small children. At the time of my diagnosis, I had a 6 month old baby and a 3 year old. I was terrified. How would we weather this storm? How would I care for my baby through surgery and chemo? How would I help my curious and observant 3 year old understand everything that was going on? On top of all of those questions, I often felt like the youngest person at the infusion center and the ONLY person navigating cancer, preschool drop-offs and middle of the night wake-ups.

Juggling two small kids is hard work on a good day; when you add a cancer diagnosis and treatment to the mix, an already full plate can simply overflow. Here are some tips to help you if you are doing the seemingly impossible work of parenting with cancer.

Talk to your kids.

I was nervous to talk to my curious three-year old about my cancer. I knew that she was picking up on hushed tones, tears, and changes to our family’s routine. It was scary to start the conversation but I knew that she needed to have an age-appropriate understanding of what was happening in order to best cope. Kids are magical thinkers and left to their own devices may create a story about what is happening that is even scarier than what is actually happening.

When you talk to your kids remember to be honest, clear, and to use age-appropriate language. If you are having a hard time getting started, read a book about cancer together. Sometimes reading together can take the edge off just enough to start a larger conversation.

It’s o.k. to not know all the answers.

You’ll have more than one conversation with your child about cancer and that is o.k. Let them know that they can come back to talk with you at anytime. If they ask you something that you don’t know, let them know that you’ll try to find the answer. (And then you actually have to try to find it!) You’ll be building trust with them.

Maintain your child’s routine.

Ok, so this can be hard when you are balancing never-ending doctor’s appointments but the more you can keep your child’s routine the same as it was before cancer, it will help to reduce their stress and the big emotions that can come alongside a parent’s cancer. If you can’t maintain a routine, make sure that you talk to them about it. Or, I’m a big fan of visual calendars (you can always make your own or there are plenty to purchase on-line) to help kids know what’s going on day-to-day.

Parent from the couch (or bed!).

You may be too tired to go to the park, so invite your child to meet you where you are at. From a couch or the bed, you can still color, complete a simple puzzle, read, or play I Spy. If they want to play, but you are too tired, just stay on the couch and WATCH your child play on the floor. You won’t believe how excited they will be to tell you all about the games they are playing. I really like the book Horizontal Parenting: How to Entertain Your Kid While Lying Down by Michelle Woo. It’s not written for a parent with cancer but it is perfect for those of us horizontal parenting on the regular.

Ask for help.

It can be hard to ask for help, especially when you are in the thick of treatment and doctor’s appointments… when you might need it most. Make a list of things that will ACTUALLY be helpful to you and your family, so when someone says to you “let me know how I can help,” you’ll just say, “walking the dog on Wednesday afternoons would be so great!” Or, “if you could take out the trash for the next month, that would be really helpful.” I guarantee your friends will be so glad to help in the ways you most need.

Seek out community.

Being a parent with cancer can be lonely but know that you are not alone. Having the support of people in the same or a similar boat not only helps to cut some of the isolation you may be facing but they can also provide practical advice (i.e. How did you get your toddler to stop bumping into your port? My child is having BIG feelings… how did you help them cope? How do you make dinner when nothing tastes good?”). Look into support groups at your hospital or check out virtual options.

Tell your child(ren) you love them. They already know it but telling them again will feel good to you and to them!

Haley Pollack

Haley Pollack is the Executive Director and co-founder of Bright Spot Network, an organization dedicated to supporting young parents and guardians with cancer as they raise small children. Haley is a cancer survivor, diagnosed with Stage IIIc colon cancer at 37, with a 6 month old baby and toddler at home. Experiencing the resource gap for young families navigating a cancer diagnosis herself, Bright Spot Network was born. Haley lives in Oakland, CA with her two kids, husband, and dog.

Your Cancer Journey is Yours

March 7, 2024/in Patient Stories, PEN Blog /by Tracy Rode

I’ll never forget how I felt on October 1, 2010, when a phone call changed my life. After a routine annual “neck check” turned out to not be routine at all, I learned that I had thyroid cancer. That day, I became a member of a family of over 18 million cancer survivors in the United States.

I overshare all the time. I figure if I’m going through something, I might as well let someone else learn from it. I started sharing my diagnosis with friends, who in turn told others. And wow, did those people rally around me! Offers to drive my kids (4th and 5th grade at the time), food, gifts; people were excited to be part of my journey and to meet milestones and revel in good news. I truly felt like a “trophy patient.” And I quickly met a “scar sister,” whose surgery preceded mine by three weeks, allowing her to be an unparalleled source of information and support.

Fast forward 13½ years, I’m still here! While I still have active cancer cells (thanks to a recurrence with metastasis in 2012), I’ve been stable since 2013. I had a squamous cell carcinoma removed from my left eyebrow in 2019, so I’ve now got two very visible scars to show for my three diagnoses.

How does my story tie to the title, “Your cancer journey is yours”? Because YOU don’t have to overshare, or even share. YOU don’t have to be, as a friend experiencing a recurrence put it, “everyone’s inspiring cancer patient.” YOU don’t have to do blog posts, appear in videos or be in support groups. YOU don’t have to wear a ribbon or dye your hair pink or teal or whatever your cancer color is. As my kids say, “YOU do you.” Many of us feel tremendous support from the community of people who’ve faced cancer, but it’s your choice whether and with whom to share your experience.

The National Cancer Institute defines a survivor: “An individual is considered a cancer survivor from the time of diagnosis through the balance of life. There are many types of survivors, including those living with cancer and those free of cancer.” That’s the one thing I want you to take away from this post: YOU ARE A SURVIVOR. Whether you’re newly diagnosed or have been living with or beyond cancer for years, YOU are a survivor. Survivorship is on your terms, whether you shout it from the rooftops or keep it a secret.

If you’ve been less public with your cancer journey and would like to connect with others like you, here are some options for connection:

PEN’s Empowerment Leads: these wonderful volunteers are the heart of our efforts to connect survivors with support.
PEN’s partner organizations that offer survivor support
- Cancer Support Community: in addition to online support, CSC and Gilda’s Club locations are around the country
- Imerman Angels: one-on-one mentoring with experienced survivors
For support related to your exact diagnosis, visit PEN’s web site, which shares resources by cancer type.
Please feel free to reach out to me at tracy@powerfulpatients.org. It would be my honor to help you find your people.

I never thought anything would mean more to me than the support I got from fellow survivors. I was wrong. Being that survivor is the most meaningful experience, and it’s why I am honored to lead the Patient Empowerment Network.

Tracy Rode

Tracy Rode is the Executive Director of Patient Empowerment Network. Learn more about Tracy here.

Cancer Patient Profile: Linda Ryan

November 16, 2023/in Patient Stories, PEN Blog, Women Patient Stories /by Kara Rayburn

As a survivor of thyroid cancer, adenocarcinoma in situ of the cervix, and seven cancer recurrences, our PEN Gynecological Cancer Empowerment Lead Linda Ryan has learned a lot about cancer treatment and about life. She’s discovered the value of self-education, clinical trials, and friendships among many other things.

Linda’s first cancer experience occurred in 2002 with her thyroid cancer diagnosis. She received successful treatment and then two years later, as a result of a routine pap exam, she was diagnosed with stage 0 adenocarcinoma in situ of the cervix. Linda had a hysterectomy and no other treatment. And then seven years later, she found a lump on her neck that her doctors diagnosed as thyroid cancer recurrence. She had a radical neck dissection scheduled but found some lymph nodes in her groin area ahead of her surgery date. The sense of urgency for treatment increased considerably after the physician assistant knew Linda didn’t have thyroid cancer.

Linda learned that the standard of care option had a 15 percent response rate for her diagnosis, and the clinical trial was seeing a 31 percent response rate. She chose the clinical trial since it increased her chances by 16 percent. She traveled from Florida to Houston for treatment, and she did that for eight rounds every three weeks and then had no evidence of disease.

Clinical trial participation wasn’t something that Linda would have known to ask about initially, but she’s participated in a few trials. Patients can find all clinical trials on clinicaltrials.gov. “It’s important for patients to ask their doctors about trials and to do research on trials, knowing that they may not be eligible for certain ones if they don’t have certain cancer mutations or other treatment factors. Trials are available to patients in community settings and not just teaching institutions. I feel like I’m using them and getting the benefit of kind of cutting-edge medicine that isn’t available. So I think it’s important for people to seek out trials and educate themselves if there is something available for them.”

One key piece of advice from Linda is don’t give the cancer any more power than it deserves. “So I think it’s important to always remember you’re in charge, and you’re more powerful than the cancer. The words you use to talk about your cancer are very important. So knowing that when I exercise, I feel stronger than the cancer, even if I’m not lifting weights, but I’m moving.” She also recommends using mental exercises or spiritual practice as a way to keep your personal power during your cancer journey and to keep excessive anxiety at bay.

At the beginning of her cancer journey, Linda asked her doctor if she could keep running. Her doctor advised her to keep moving as much as she could. A group of Linda’s friends decided to host a 5K in her honor. “The goal was just to get our community moving and to hear that message of the importance of exercise. And it gave me a lot of mental strength.”

Reflecting back on the initial 5K event, Linda and her friends set out with specific goals for the event. They wanted the community to hear their message and wanted 300 people to participate in the first race. They were simply overwhelmed with joy when 900 people registered. They only needed 300 people to register to cover the expenses. The large event turnout meant that they had plenty of money left to donate.

And we had a small amount of money at that time, but we thought, “Well, we can do something good with this money.” And so we created a 501(c)(3) charity, and it became an annual event and an event for our small town in Florida to land, and Central Florida really embraced it. Fast forward to 2020, right before the pandemic we had 6,000 participants. It was just us five women running it. We all had different talents and decided it was time for someone else to take it over.”

Up until the time that the new organization took over in 2023, Linda’s efforts with her friends gave a little over $2 million. “So many good things came out of it, we’ve touched so many lives of people living with a cancer diagnosis and going through that process. But in addition to what the beneficiary money went to, the event united our community.”

While Linda was enduring her cancer journey, her whole town was looped in on what was happening with her. “When I would have a recurrence, I’d be in the grocery store in tears, because someone would know it was just like everyone knew. And so lightning in a bottle was such a great way to describe it. And then the other thing is because there aren’t a lot of recurrent cervical cancer survivors, especially six, seven-time survivors, I’ve been able to, hopefully, be a voice for other women.”

Linda has formed an educated opinion about cancer information. “Having more information can help all of us patients make better decisions and more informed decisions and talk to the doctors about things that they weren’t necessarily thinking would be specific to you. But getting more information can be a double-edged sword. Sometimes the more information we have, we can fall down rabbit holes and our cancer might not be this exact mutation, and we might read something on the Internet that isn’t necessarily relevant for our own situation. Make sure to talk with your doctor about information that you find.”

As for patients navigating their cancer journeys, Linda feels it’s important for patients to be empowered and to handle their cancer journey how they want to go through it. “Some patients may want someone else directing everything, but that’s their choice. Some people only tell their spouse. I think caregivers need to respect what the patient wants. That doesn’t mean the patient doesn’t need a reminder from time to time that they need to get up and put a smile on once in a while. I wouldn’t want to be the caregiver. It’s so hard for them, since they can fix the cancer.”

Last November, Linda had a scan that showed no evidence of disease, but she remained on pembrolizumab (Keytruda) as a precaution. “I receive it every three weeks through my port, but it’s super easy. I don’t have side effects. It’s 30 minutes. It’s not life-changing at all. So I hope to be on it for a really long long time, and I get scans every three months. I feel great.”

Though she never could have imagined enduring two types of cancer and seven cancer recurrences, Linda remains grateful for the good things that have come from her journey. “My prayer the last two years was, ‘Please let me live and use me as however I need to be used to help other people.’”

Let’s Talk About NETs

November 10, 2023/in NET Blog ND, NET Blog T, NET Blog TC, NET Blog WN, NET Blog WPS, NET Newly Diagnosed, NET Testing, NET Treatment & Clinical Trials, NET What's Next, NET Whole Patient Support, Neuroendocrine Tumors, Patient Stories, PEN Blog /by Nicole Normandin Rueda, LMSW

Neuroendocrine (NET) cancer is a challenging diagnosis for patients, care partners, and medical providers alike. On NET Cancer Day, our Director of Marketing and External Affairs, Nicole Normandin Rueda, shares her family’s NET story. We are so grateful to Nicole for her candid account of her family’s experience, and for the passion with which she serves the cancer community. For information about neuroendocrine cancer organizations, please see below.

Nicole’s Story

Throughout my life, I have seen firsthand – both personally and professionally – what true inner strength is. I walked alongside my dad through his battle with pancreatic neuroendocrine tumors and held his hand as he took his last breath. I have also stood alongside patients with rare vascular malformations as they hear news of a poor prognosis or been seated with the parents of a 5-year-old patient who was so full of life, that no one could even begin to comprehend the significance of a diagnosis like DIPG with a 0% chance of survival. I guess it’s safe to say that I have seen my fair share of illness and adversity; however, in each of these scenarios, I have also been fortunate enough to see some incredible moments of hope and encouragement. Today, November 10, 2023, World NET Cancer Day, I am here to share a little bit of my experience, and what I have learned along the way to remind all of us that no one is in this alone.

“We cannot change the cards we are dealt, just how we play the hand” – Dr. Randy Pausch

As many who have any experience with NET cancer know, it is often the delay in receiving a proper diagnosis that is one of the initial challenges. This was no different for my dad, taking over a year from the time he first reported symptoms to the time of his official diagnosis. In early September 2005, my dad saw a gastroenterologist in Laredo, TX after he was unable to keep water down for a week. The doctor did an endoscopy and saw what he described as “scar tissue lesions” on my dad’s stomach and decided to prescribe Nexium to lower his astronomically high gastrin levels. Fast forward to January 2006, the doctor recommended that my dad stop the Nexium to ensure the gastrin levels lowered. Within three weeks of stopping Nexium, my dad was throwing up again. Finally, after more than three months of scans, and the requirement that my dad carry medical documentation explaining his “atomic state” from all the nuclear testing, it was determined that my dad had Zollinger-Ellison Syndrome, which we were told could cause tumors. This realization created the momentum to get my dad referred to MD Anderson for treatment. He was informed he met protocol, and we made the 6-hour drive to Houston, TX for the litany of tests required before MD Anderson would provide clarity on diagnosis and treatment.

At the time, we were looking for all the answers, and MD Anderson was able to confirm that my dad had Stage IV Neuroendocrine gastrinoma tumors with the primary site in his pancreas and metastases in the liver and lymph nodes. In hindsight, it is astonishing how little our family knew when it came to cancer treatment, language/jargon, protocols, etc. My paternal grandfather had just passed away from mouth cancer that metastasized to his brain, so it was not that we were naïve, but we just had no idea what aggressive treatment for Stage IV cancer looked like. My dad was 52 years old at the time, and he was my hero – a symbol of perseverance and strength. He was the Vice President of Operations at a manufacturing plant, he walked 18 holes of golf in 108-degree weather because he enjoyed the exercise – he thought he was invincible. He was also very stubborn – so much so that 20 years earlier, he was insistent on teaching himself Spanish and did so in a matter of months so that he did not have to rely on paid translators for his job. Initially, we all felt overwhelmed – we got the diagnosis, but we still wanted answers. There is a reason that I strongly discourage families from consulting Dr. Google –I can remember googling neuroendocrine carcinoma originating in the pancreas and only seeing information on Stage IV Pancreatic Adenocarcinoma, which was discouraging, to say the least.

That feeling – you know the one, like you have just been sucker punched in the gut – is very familiar when I reminisce on this time in my life. Quite literally, I stopped breathing for a second, it was a moment of panic and fear, a future flashing before me without my dad in it. It happens to the best of us – the news of a cancer diagnosis is life-altering in so many ways for each person in the family. And so often, the person delivering these messages can be a little numb to the impact their words are having, these oncologists see new diagnoses all day, every day. At the time, there was such limited information available on NETs that it got to be confusing and quite frankly, disheartening. My mom tells the story of an oncologist trying to help us differentiate his diagnosis by explaining that my dad had the ‘best kind of the worst kind of cancer’. Infuriating, and not helpful. For all intents and purposes, at the time, he had pancreatic cancer. There were quite literally no resources that we could find for his NET and the pancreatic cancer resources we did find were limited at best.

Instead, what got us through the first 2 years was hope. Despite the rollercoaster of emotions that a Stage IV cancer diagnosis is, my dad’s mindset was to focus on finding the strength to overcome the odds and keep a positive outlook. It was the attitude with which my dad, and so many others, chose to have throughout the life-changing cancer diagnosis that gave everyone in our circle a sense of strength. My dad went from feeling invincible to wanting to cherish every moment he could, he knew that cancer was now a chapter of his story, but it was not going to write his book. Don’t get me wrong, he had days where he was mad at the world, but he also had days that he was grateful for the chance to fight another day alongside his favorite people.

“So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. “ – Steve Jobs

As so many impacted by cancer know, the struggle to keep the faith and positivity is the difficult part. The fact that one test result can disqualify you from a potentially life-saving treatment is distressing. It was difficult to remain positive when there were medical professionals giving us information that was borderline incomprehensible. We asked his medical team if it was okay to record all the updates they were giving because while we knew the words coming out of their mouths were important, we had no idea what most of them meant. This was a game changer, and something I encourage every single patient and family member to do if their medical team allows it. If not, ask for everything in writing (either printed or via a portal). As PEN says, the best cancer care happens when you’re empowered to ask the right questions at the right time. The person who did this was my mom – she was the one making sure my dad took all his meds, ate enough protein, and asked all the questions she needed to ensure we walked out of the room feeling like we were part of the decision-making process. Having a strong care partner is invaluable – but finding a support network (if you don’t already have one) is equally as important.

That is the thing about cancer, it takes so much away from everyone it impacts. The ability to keep faith and trust in something (whatever that may be) is incredibly difficult. There are so many situations that are just unfair – from not meeting protocols for a new treatment option to being pushed to extend life that has no quality because you do meet certain protocols. It is overwhelming to think about the infinite possibilities. What can be helpful is to focus on the things you can control and trust yourself. Cancer cannot take away the relationships with those around you. Personally, I am grateful that a Stage IV NET diagnosis was not able to take the memories I made with my dad, the priceless gifts that I keep with me every single day. I have no regrets – I carry him (and others whom I have met along the way) with me in everything that I do. My advice to others when asked how I have been able to cope with the incredible amount of loss I have experienced in my life is to make sure you stop and appreciate the moments and record the memories. There are opportunities every day to spend some one-on-one time with those around you – especially those impacted by cancer. This journey is not one that anyone can or should get through alone. Whether it is finding a support group, finding a counselor, talking with friends, or spending time with your pets (that was one of my dad’s favorites), it is so important to seek opportunities to connect with others.

Over the next 5 years, my dad beat all the odds. He kept up with his quality of life for nearly all his remaining days – being able to attend my brother’s wedding, watching me graduate with 2 degrees, and spend LOTS of one-on-one time in the car with my mom going to/from Houston for treatments. It was not until early 2012 that we were told there were no additional treatment options, and we had to start thinking about palliative care. Up until that point, my dad had been doing well – he completed 10 rounds of 5FU chemotherapy, his lifetime limit of radiation, five surgeries, and a clinical trial. This is where my professional training as a social worker comes into play. Again, hindsight is 20/20, but at the time, since my dad looked so healthy externally, we never had in-depth conversations regarding his wishes when it came time for hospice and palliative care. My mom, thankfully, had the wherewithal to make sure my dad’s wishes were respected, along with advance directives, etc., but as a family, we did not explore palliative care options. I don’t think he was offered palliative care until, in my opinion, it was no longer a palliative care situation. The last weeks of his life were incredibly difficult for all of us. The decisions we made, as a family, during that time were the product of painful discussions with a 59-year-old man who was in unbearable pain. He did the best he could, and we were alongside him every step of the way. He was able to take his last breaths surrounded by those that loved him the most. I have dedicated my career to ensuring other families impacted by cancer have the psychosocial support they need.

Rare cancers, like NETs, have some incredible resources and support networks that can be transformational for people with cancer and their families. Don’t be afraid to ask for resources. Hospice and palliative care teams can also be incredibly helpful, and at times will overlap. Palliative care is meant to enhance a person’s current treatment by focusing on the quality of life for them and their family. Palliative care teams are multidisciplinary and comprised of doctors and specialists, as well as social workers, chaplains, and nutritionists who will provide as much support as needed to improve quality of life and is a fantastic opportunity for patients to be active participants in their medical treatment.

If you got this far into this blog post, I would like to make sure you walk away with these words – Surround yourself with people who you love to help you be proactive in making decisions that impact your journey. It is critical that patients and their families are empowered to understand their situations, feel confident to ask the right questions and be an active part of the decisions that need to be made. It has been 10 years without my dad, and I would give just about anything to have him by my side today, instead, I am able to carry my dad’s legacy with me, still doing my best to make him proud. Hug your loved ones extra tight today, on World NET Cancer Day and try to remember that you are not alone. I leave you with this piece of advice from my dad, Mike Normandin, that I often turn to on especially tough days, “Stay positive. Life is about choices. Make choices that are going to make you happy…Love is the most important thing in life…”

P.S. If you want to hear him give this advice, feel free to check out this advocacy video my parents and I made over 12 years ago or this clip from my hometown’s local evening news (apologies in advance for the poor-quality audio).

Neuroendocrine Cancer Organizations

Carcinoid Cancer Foundation carcinoid.org
The Healing Net Foundation thehealingnet.org
International Neuroendocrine Cancer Alliance (INCA) incalliance.org
Learn Advocate Connect: A Neuroendocrine Tumor Society (LACNETS) lacnets.org
North American Neuroendocrine Tumor Society (NANETS) nanets.net/resources/patient-resources
Neuroendocrine Cancer Awareness Network (NCAN) netcancerawareness.org/
Neuroendocrine Tumor Research Foundation (NETRF) NETRF.org
Northern California CarciNET Community norcalcarcinet.org
The Pheo Para Alliance pheopara.org

Nicole Normandin Rueda, LMSW

Marketing and External Affairs Director

Nicole Normandin, LMSW has worked with vulnerable populations in several capacities for over ten years. Most recently, Nicole served as the Executive Director for Stuff the Sleigh, a nonprofit organization that supports the psychosocial and emotional needs of pediatric cancer and hematology patients and families. Prior to this, she was a Clinical Social Worker at Texas Children’s Cancer and Hematology Centers and as a Patient Resource Specialist with the American Cancer Society.

Nicole has a Bachelor of Arts in Psychology and a Master of Science in Social Work, both from the University of Texas at Austin. In May 2017, she completed the Rice University Glasscock School of Continuing Studies Leadership Institute for Nonprofit Executives Certificate program. She has extensive work volunteering and serving others, including time as the President of Student Hope, a pilot program through the Pancreatic Cancer Action Network.

What motivates Nicole is the ability to give cancer patients and caregivers a sense of hope despite the devastating circumstances around them. When Nicole’s father lost his 7-year battle to pancreatic neuroendocrine cancer, her personal and professional passion for positively impacting the lives of cancer patients was reinforced.

Nicole grew up in South Texas but has spent the most of the last decade between Houston, TX and Austin, TX, where she currently lives with her husband Armando, who is an engineer and Development Manager, and their two dogs – a French Bulldog named Moose and a boxer named Hooch Merengue.

Thoughts on Survivorship

October 25, 2023/in Patient Stories, PEN Blog /by Rick Czaplewski

Wellbeing

When the hotel alarm sounded on July 31, 2023, I woke up, put both feet on the floor, brushed my teeth, laced a pair of work boots, and caught an Uber to a factory in Potrero Hill of San Francisco. On this work trip, with my team, we operated water treatment equipment that morning and then had lunch at a taco truck. After more work and a team dinner at a Japanese restaurant, another Uber whisked me back to the hotel in time to catch the impressive sunset over the Golden Gate Bridge.

As the sun reflected off San Francisco Bay I reflected on the past 27 years. You see, July 31 marks my cancerversary, in other words the date that the doctor finally told me, “You no longer have cancer,” and that date marked 27 years since that discussion when I was a college student in the 90’s.

A handful of my friends know the date and sent well wishes, and on that date, old memories of my experience with Hodgkin’s Disease and prior cancerversaries have their way of returning to top of mind. I remember wanting cancer out of my body so badly and the desire to live and healthy and happy life thereafter; today we call this wellbeing.

I thought about those first steps after my doctor’s good news. Walking out of his office as a newly minted survivor felt like heading out on a journey without a map. He had prescribed a regimen of scans, bloodwork, and follow ups which would gradually lighten as time progressed.

I dutifully followed, attended, and completed these appointments and every time sweated the results of each of them. The new normal felt a lot more uncertain than it did before cancer. To live a healthy life as a survivor means taking on the hard stuff like waiting on results, but it also provides a level of comfort knowing the course of tests monitored my body very closely. Over time, the intervals between these exams lengthened from three months to six months. Then annually. Then never again after year 10.

Like many survivors, cancer influenced my health decisions, especially diet and exercise, to live a life with wellbeing. Healthy habits have to underpin decisions. For me this meant getting into running and swimming. I remember running about six months after finishing treatments and could not make it 50 yards.

Sticking with good habits, stacking wins, will help healing and mental wellbeing. Whether you aim for mountain peaks or marathon finish lines, or you start a daily walking habit, movement and mobility will help the body bounce back; this worked for me. I kept getting out there day-after-day, doing those 50-yard runs which eventually stretched further. Let your body guide you; listen; just move.

Over the years, having met so many other survivors, handling cold and flu season after cancer has some challenges. I remember the Fall after my treatments concluded, I came down with the sniffles and immediately thought cancer had returned. Taking it a step further, I twisted my ankle on a jog about four months after finishing treatments and thought that my ankle now had cancer. It didn’t. Relearning and listening to your body take time and those reactions are something I think all survivors experience.

One health dilemma I faced early on after the end of treatment happened in college. The social scene at my (and many) colleges involved parties and bars. I enjoyed going to these, not so much for the alcohol but for the camaraderie. At the time (the 90’s), you could smoke in bars. After standing in the smoke- filled college bars a few times and still worried about a relapse, I decided to change my approach. Instead of tolerating the environment, I would arrange meetups with friends earlier and would leave if it got smoky. Though I may have missed out on some late-night revelry, it meant prioritizing health first. Making this and other tradeoffs like it over the years have led to a healthier overall life without the worry of deprioritizing my health.

As the sun went down over the San Francisco Bay and the memories receded for another year, the second lifetime of chances left me with a warm appreciation of life and a gratitude for a second opportunity knowing that when the alarm sounds on the next ordinary day, August 1, I have the chance to keep going.

Good health to you.

Rick Czaplewski

Cancer Survivor: 2x, 27-Years, Hodgkin’s Lymphoma Author: Better Dirty Than Done

Rick was first diagnosed with Hodgkin’s Disease as a freshman in college at age 19. After undergoing radiation treatments, it relapsed only 18 months later. Determined to graduate, Rick dropped out of college, underwent chemotherapy, and returned to earn his degree.

In the midst of depression dealing with survivorship, Rick turned to athletic endurance events for recovery. Rick has gone on to climb mountains, swim oceans, and run marathons. These stories are part of his memoir, Better Dirty Than Done. Personally, Rick is a proud father to 19-year old son, Lance. Professionally, he has worked as a CPA, project manager, and director across the financial, high tech, and water treatment industries. Recreationally, you can find him riding his bike.

AML Patient Profile: Jordan Supino

May 25, 2023/in Acute Myeloid Leukemia, AML Blog ND, AML Blog TC, AML Blog WN, AML Blog WPS, AML Newly Diagnosed, AML Treatments and Clinical Trials, AML What's Next, AML Whole Patient Support, Patient Stories, PEN Blog /by GIna Craig

As Jordan Supino shares his acute myeloid leukemia (AML) patient story, it’s quite striking to hear his love of life and passion for helping others. Calling himself “The Cancer Killer,” Jordan has an inspiring dedication to fitness, faith, family, finance, and fun, for overall health and wellness. He shares the perspective he’s gained, “People need to understand that there’s a purpose for everything. We go through situations, and you have to see it for what it is. What’s the message? You may be listening to the doctor, but you need to hear what it’s preparing you for. I believe that everything that we go through in life is truly preparing us to grow later in life. If you learn to start cooperating instead of chasing, those tests will become your testimony for the world. There’s a greater good in learning to help others.”

As for Jordan’s cancer journey, it began with being hit with hot and cold sweats along with major leg cramps that he’d never experienced before. He dismissed the symptoms and returned for a gym workout a few days later when his body started trembling, which brought on a partial collapse and his legs becoming locked up in extreme pain. Jordan was diagnosed with AML in July 2011, which led to him being hospitalized for about two months while he received high-dose chemotherapy.

After completing that round of chemotherapy, Jordan’s doctors informed him that he’d need to return for his next round of chemo in 4-1/2 weeks and to prepare for a bone marrow transplant. Much to his doctors’ surprise, he vowed to them that God would be granting him a miracle and that the power of his mindset would eliminate the cancer and any thought of a bone marrow transplant. Jordan further promised that he’d bench press 500 pounds before his next round of chemo to demonstrate the power that can come from the combined power of one’s faith and mindset and the cancer would disappear.

When Jordan was in the hospital, he had hundreds of people go to visit him. He recalls about the visits, “I was just blown away by all these people. And a lot of them I didn’t know or couldn’t remember. They were sharing stories with me about how they’d crossed paths with me sometime in my life. Whether it was some words of wisdom that I gave them or helped them pay a bill or took them to dinner or something, they felt indebted to come pay it back to me. And I felt like if God decides to take me now, I’m okay with that, but I’m not ready just yet.” He knew he’d done a lot of good in the world helping people but felt that his work wasn’t finished yet.

Jordan continued with his chemotherapy treatment for 4 months. But he decided that he wanted to do some shopping for gifts before Christmas. Jordan wore a mask and bundled up for his shopping outing, but another test hit Jordan on December 27 when he woke up with a 107-degree temperature and was partially blind. He collapsed at the hospital and went through enduring pneumonia, heart failure, kidney failure, liver failure, blood clots, fluid-filled and blood-filled lungs, bloodline infections, full septic shock, and a 24-day induced coma. Jordan’s body and spirit weren’t ready to surrender, however. He woke up, and his doctors told him it could take up to a month to start walking again. Jordan blew away that estimate and was walking in two days. His doctors also told him it could take up to a year for his full recovery, but he gained 50 pounds in six weeks and was unrecognizable to hospital ICU staff due to his drastic health change.

While in the hospital, Jordan made it part of his routine to help others. He recalls of his hospital stays,
“I made it a point to not just survive adversity, because I’m someone who thrives against adversity. People tell me I’m a cancer survivor, but I say that I’m a cancer killer and that I rise above it. You can’t control what happens to you in life, but you can control how you react. It sounds cliche, but how many people actually hear it? How many people actually adopt it? How many people actually apply it and see the results of it? I’m a walking testament to that.” Jordan decided to help other people in the hospital who didn’t have visitors to see them. Hospital staff called him affectionately “Dr. Real Deal or No Deal.” The doctors would call him when people were having a hard time or felt like giving up. He’d visit several people each day and sit with them. And Jordan would learn about them or tell them stories from his life. “Whether I was preaching to them, laughing, doing some cardio down the hallways, or just getting them moving and grooving and feeling good about themselves; it was so magical to see all these people just start living. They stopped saying, ‘Why me’ and started adopting the ‘Why not me?’” Hospital staff brought in creative items where the staff and patients created inspirational artwork with motivational sayings that made an immediate impact and has continued to do so over the years. The huge pieces of artwork were transferred to the new oncology unit in a new building and are still making an impact on patients and their families today.

As for advice for other cancer patients, Jordan shares, “I don’t allow myself to stress. I don’t allow myself to create anxiety. And I don’t allow myself to get depressed. If I feel anything trying to creep up on me, I find these different things to do to get myself through and grow. Whether it’s going out and getting some sun or going out and feeding the ducks and meditating by a pond or going for a walk knowing that when the body moves the brain grooves or putting on some music or lifting some weights at the gym, knowing how to control your mindset is key. You have to know that you’re in control, and you have to act like the change you want has already happened. When you’re feeling bad, just punch it in the mouth to get better. How much have you ever pushed yourself to the limit? You become a little bit stronger and a little bit wiser from pushing yourself. Life is all about perspective in any situation we go through.”

Jordan has come to many realizations over the span of his life and time with cancer. He believes in changing your environment to what you need. “When you’re struck with adversity and things like cancer, it’s okay to rest, but there’s still more work to be done. This is your story and the card that you’ve been dealt to serve a bigger purpose. If the hospital food isn’t cutting it, find a friend who can cook. If you’ve got a negative person around you, find someone who’s joyful. If that person who’s hugging you isn’t a good hugger, get a good hugger. If you don’t like that background music, change the music. This is your world, and you become what you surround yourself with. You need to just focus on being the best version of you. If you stop chasing and start seeing cancer as the gift that it may possibly be, then you’ll learn how to cooperate and to ultimately become just an amazing masterpiece and things for others to witness.”

Through his work, Jordan coaches people one on one – emotionally, mentally, physically, spiritually, financially – whatever the case may be. And for those facing a cancer diagnosis, he poses this question, “Do you want to live, or do you want to die? I want to live. You die only once. You live every day. I’m going to live and enjoy blessings, prosperity, and goodness in helping others.”

Thyroid Cancer Patient Profile: Beena Patel

May 18, 2023/in Patient Stories, PEN Blog, Thyroid Cancer, Thyroid Cancer Blog ND, Thyroid Cancer Blog TC, Thyroid Cancer Blog WN, Thyroid Cancer Blog WPS, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Treatment & Clinical Trials, Thyroid Cancer What's Next, Thyroid Cancer Whole Patient Support, Women Patient Stories /by Kara Rayburn

As Beena Patel shares the story of her thyroid cancer journey and path to becoming an integrative medicine professional personified, it becomes clear that she’s making a positive impact to many patients and to those seeking wellness. In her professional life, she works as an oncology physician assistant, holistic life & health coach, yoga teacher, and energy healer. Beena shares the initial feeling that sparked her passion for patient empowerment, “I felt like I’m meant to do this. And I had even more of a fire in me, like I’m going to help people, and I’m going to help cancer patients feel empowered over their care.”

Beena’s cancer journey began when she was 21 and in Montreal celebrating post-college accomplishments with a group of friends. They were mainly driving to festivities and eating a lot of food. She felt like she must have gained 5 pounds, but found that she had actually lost 5 pounds after she was back home. She was in physician assistant school at the time and told her doctor about her weight loss, which prompted her to check her neck and thyroid. Her doctor said her thyroid felt palpable and decided to do further hormone testing, radiological testing, and an ultrasound. Something abnormal was found in the testing, which was followed up with a biopsy that confirmed diagnosis of thyroid cancer. Beena was shocked with her diagnosis at such a young age and felt unsettled with the timing for it to happen when she had just started physician assistant training.

Traveling back and forth between her doctor’s office and the hospital felt overwhelming for Beena. “It was a lot for a young woman and a woman of color, to see not only how painful it is to go through any type of diagnosis, let alone cancer, and having to feel so alone throughout the process. Also seeing how people do pass you off when you’re a young woman of color, and I would say a woman of any age, but I think women who are younger, trying to navigate life, and figuring out your path. And then you get a diagnosis and you’re like, ‘No one understands me,’ so it was a lot to handle.”

Beena’s thyroid cancer treatment included a total thyroidectomy to remove her entire thyroid gland. Her care team also tested some lymph nodes at that time, but didn’t find anything concerning. “I didn’t get radioactive iodine, but then three years later, I did have a mild recurrence, so they did do radioactive iodine at that time.” Beena is now doing well and takes thyroid replacement therapy to maintain her metabolism and other thyroid-related processes.

Empowering herself has been a vital piece of Beena’s patient journey. She felt like her first doctor on her cancer journey wasn’t really listening to her, so she found a different doctor. “You have to find the right fit. It’s like dating. Don’t settle until you feel like you not only have the scientific background, but the right doctor who has clinical expertise, who you feel has clinical knowledge and compassion, as well as the time to spend with you and to educate you as a patient. Your doctor should make you feel seen, heard, and understood. It’s a relationship that you’re creating with this provider, so it’s very important to find a good fit.” She also feels patient resources like NIH.gov, clinicaltrials.gov, and the Patient Empowerment Network (PEN) website are valuable in the process of patient education and empowerment.

Beena had to start physician assistant school a second time after her cancer became too disruptive, and she felt she became empowered at that time. She went through a difficult breakup about 6 months earlier and was feeling disconnected from her body. Yoga and meditation helped her cope with stress, but she was looking for something deeper. She found a Reiki practitioner in New York City and received a treatment for the first time. “I just felt like I transcended everything that I’d gone through in the last decade. I just felt good and calm and at peace. And so when I felt that, I knew I had to share that with patients, I knew there was something deeper.” After she was at Columbia University Irving Cancer Research Center for a few months, Beena had already started doing patient consultations with integrative medicine, and her patients were very responsive to the consultations.

“Many patients aren’t aware of Reiki, or they don’t know that yoga is available to them, but I started doing consultations to educate them. They were willing to try something new, since we weren’t replacing the medication.” Beena realized that she had a gift with patients as she was able to bring peace when they were stressed or had a panicked look on their face. She also recalls during her cancer journey that a medical fellow actually lied to her about the diagnosis and seemed uncomfortable in telling Beena the actual diagnosis. “Some people don’t know how to be comfortable with emotions, because they weren’t taught emotional intelligence. And so I learned that when I would go into the room with a patient, I would hold it together even when I didn’t know what I was doing.”

Beena would request that someone else accompany her in the room, like another provider who was more experienced. She would maintain her calmness and return to her center, and she attributed that ability to her daily meditation practice. She would tell the patient to take a deep breath, and she could watch their heart rate decreasing in real time. The patients would become calmer. “So even if there was an emergency, I could hold it until the intensive care unit (ICU) or someone from another department came in to check on the patient, and it’s like we have that power to help people just by being emotionally and mentally balanced.” And when Beena went to Memorial Sloan Kettering Cancer Center, they were more supportive of integrative medicine. “Music therapists would come, and they had yoga nidra (yogic or psychic sleep) at nighttime and Reiki. They had a patient population that was more aware and educated about integrative medicine, so they would ask for it.”

Patients would request to do a technique like yoga or breath work before they went for radiation treatment in the hopes that it could eliminate the need for anxiety medication. “Sometimes it would work and other times it wouldn’t. Some would pass out at their radiation treatment. So we adjusted things to a combination of breath work and meditation and decreased the anxiety medication dosage. Patients loved having that ability to manage their care from an empowered standpoint.” Beena would also run the integrative medication combination by the care team to keep them informed about the patient.

Integrative medicine is at Beena’s core of medical values that use a mixture of Western and Eastern medicine techniques. She helps patients understand the energetic root of the issues that are happening in the body. “I do think in the future there could be more Eastern philosophies, I think we could get back to energy healing and understanding root causes, the ancient medicine that was passed on from our ancestors.”

Beena is grateful that she is feeling healthy and for the different ways that she’s able to help patients. As for her other advice for cancer patients, she recommends advocating for yourself for the sake of your health. “Be open to ask for support. It’s your body and your health. And be open to us for support, be open to ask when you don’t understand something, and let us know about any supplements that you take. If you feel like you don’t have a good relationship with your healthcare team, be willing to do empowered research and go to the person who you feel comfortable with and who you feel understands you.”

My Waldenström Macroglobulinemia, Miracle Number Three

April 11, 2023/in Patient Stories, PEN Blog, Waldenstrom, Waldenstrom Blog ND, Waldenstrom Blog TC, Waldenstrom Newly Diagnosed, Waldenstrom Treatment and Clinical Trials, Women Patient Stories /by Kara Rayburn

Dear Fellow Cancer Patient,

As I believe in universal love for ALL, I’m reaching out to you, whether we have met or not, to invite you to join me in embracing the concept of medical miracles no matter what kind of cancer you have.

I do so because in January 2023 I experienced my third medical miracle since being diagnosed with Waldenström macroglobulinemia (WM) in August 2012, an extremely rare and currently incurable lymphoma.

The mission of Patient Empowerment Network (PEN) to support and educate patients with all cancers has an exceptional impact. It is an honor to cooperate with PEN, and my dream is to bring you hope through my own medical successes through the past 10 years. (*Please see footnote for a brief history of my story.)

It is my tremendous good fortune to be in the constant care of my world-renowned WM specialists/hematologists at the Bing Center for Waldenström’s Macroglobulinemia, Dana-Farber Cancer Institute/Harvard Medical School in Boston, Mass. since March 2013. Also, my oncologist at Virginia Cancer Specialists who has extremely high credentials in hematological malignancies, diagnosed me in 2012, and treated me immediately with what was then the flagship chemotherapy for WM.

In September 2022, I experienced the most aggressive outbreak ever of my Waldenström. A lymph node was so enlarged, I discovered it myself. One week later, my feet were unbelievably swollen, which I discovered when I couldn’t put my shoes on. I immediately reached out to the Bing Center’s Director, Dr. Steven Treon. Within the same hour, he called my Virginia oncologist and recommended a PET scan and biopsy for me. The next morning at 10 am, less than 24 hours later, I was examined in Virginia by my oncologist, and he ordered both tests on the spot.

The results were extremely concerning and put fear in my heart again as is the case with any cancer diagnosis. Enlarged lymph nodes were very widespread throughout my body, and there was increased activity in my entire bone marrow throughout my skeleton from head to toe.

My two Bing Center for WM doctors’ recommendation of Benda-R [bendamustine (Treanda) and rituximab (Rituxan)], for chemotherapy was agreed to by all upon consultation with my Virginia oncologist.

For three months, I couldn’t walk outside of my house and only went to medical appointments with my oncologist every week and chemotherapy treatments for two days each month. Tony, my husband, had to drive me there and take me by wheelchair down the hall to his office. I was also very frail due to losing 15 pounds, making my weight 90 pounds.

During this very challenging time, my brother Mike, a two-time survivor of non-Hodgkin lymphoma (NHL), supported me constantly and even called me from Egypt and Panama on his cruises there, as he understands too well how trying it is to be back in treatment for cancer. My dear friends also offered wonderful daily encouragement with special contact to lift my spirits.

After three months of chemotherapy, my follow-up PET scan in January 2023, showed “complete interval resolution of the abnormal marrow and nodal activity evident on the previous study.” Although I’m not an expert, the comparison of the images of my body between September and January was remarkable. In the Bing Center for Waldenström’s clinical review of its patients led by my doctors and joined by their colleagues from three Harvard hospitals in Boston, my PET scan results were examined, and one more round of chemotherapy was unanimously recommended to complete my treatment.

My third medical miracle has arrived! According to Dr. Steven Treon, Director of the Bing Center for Waldenström’s Macroglobulinemia in Boston, “From all evidence so far, it appears you may be in complete remission!” My deepest gratitude to him, Dr. Jorge Castillo, Clinical Director of the Bing Center, and my Virginia oncologist for their cooperative spirit with each other on my behalf and extraordinary attention in providing life-saving treatment to me is beyond words. In July 2023, a bone marrow biopsy and CT scans at the Bing Center for WM in Boston are planned to confirm my response.

Yet, again, I am celebrating the gift of life with Tony who has been a saint to me through countless years of ups and downs with experiences as a WM patient. He has been by my side and done absolutely everything possible to love and support me endlessly. For care partners, be sure to get the support you deserve for yourself, as cancer in your world is very challenging for you too.

Amazingly, although I couldn’t swim for seven months, I exceeded my own goal and swam for 40 minutes during my first time back at a pool in my fight to regain strength and normalcy. And I can now walk for 15 minutes outside every day, too, as my swollen feet have resolved. Tony even took me to a favorite place for my March 2023 birthday, the first time we’ve gone to a restaurant since August 2022.

As I mentioned earlier, in sharing my medical miracles with you, my dream is to give you hope for your own cancer treatments – and success. I encourage you to stay in contact with family and friends, be a proactive advocate for yourself, read PEN’s news and that of other relevant cancer support organizations, follow your own status, and reach out to your oncologist immediately with concerns or new symptoms, see a specialist for your specific cancer if possible or have your oncologist consult with one. Stay hopeful and realize that profoundly sophisticated advancements in medical research and science are progressing at a phenomenal pace for all cancers and continue forward with unwavering commitment by medical experts across the globe. I have benefited from this greatly in my own experiences in the past 10 years and may this be truly inspiring for you too!

Wishing you all the best in every way!

Sincerely, Lu Kleppinger

Footnote:

* Brief history…In August of 2012, being highly symptomatic, I was diagnosed with Waldenström macroglobulinemia (WM), One week later, I started chemotherapy provided by my Virginia oncologist. In March 2013, I became a patient of Dr. Steven Treon, Director of the Bing Center for WM/DFCI/Harvard Medical School in Boston and he extended my chemotherapy for an extra year. After 18 months and 50 infusions, it was an extraordinary success and gave me five years of being under control without treatment. In 2014, my hematologist, Dr. Jorge Castillo, Clinical Director at the Bing Center, said “You are doing really, really, great! Go live and have fun!” I did just that.

In 2019, my WM flared up a second time, and Dr. Castillo placed me on ibrutinib (Imbruvica), a daily pill for life. The results were incredible within a month, and my WM was under control yet again. I lived a normal life for three years, feeling cancer-free.

Original Stories of Hope from the first two episodes can be found at Lymphoma.org and IWMF.com.

Pancreatic Cancer Patient Profile: Marissa Smith

April 4, 2023/in Pancreatic Cancer, Pancreatic Cancer Blog ND, Pancreatic Cancer Blog TC, Pancreatic Cancer Newly Diagnosed, Pancreatic Cancer Treatment and Clinical Trials, Patient Stories, PEN Blog, Women Patient Stories /by GIna Craig

Marissa Smith’s pancreatic cancer journey is anything but typical. For starters, she was 38 years old and working as a neonatal intensive care unit (NICU) nurse when she was diagnosed. She then found out that her cancer involved a neuroendocrine tumor on her pancreas, which is unusual when adenocarcinoma is more common with the pancreas. But even if her story is unusual, Marissa is happy to share her cancer story in case others can benefit from what she learned during her journey.

When Marissa reflects about the beginning of her cancer story, the first symptom she experienced was a sour stomach. “Nothing was helping. I decided to eat, and that made me feel worse. I had pain in my upper abdomen, chills, and sweating. My friends who were nurse practitioners thought that my symptoms sounded like gallstones.” Married with two young children, she and her husband didn’t have any family who lived in their area, so all four of them had to go to the Emergency Room. They were fortunate to have friends who could take their kids to stay with them for the night.

Marissa’s journey progressed pretty rapidly from there. She received an ultrasound, a CT scan, and then was informed there was a tumor with well-defined edges on her pancreas. The community hospital then sent her to a hospital in the city to get a biopsy of the tumor. A week later, she met with the surgical oncologist to find out the type of tumor and her treatment plan. “It was a golf ball-sized pancreatic neuroendocrine tumor. He said it was very slow-growing and that I’d probably had it for a long period of time. So I might have passed a gallstone, and it’s quite likely that my tumor was found out of sheer luck.” Her doctor suggested the Whipple procedure to remove the head of her pancreas, part of her stomach, part of her small bowel, gallbladder, and bile duct. She also received a PET scan prior to surgery to confirm there weren’t any additional tumors.

Following Marissa’s surgery, her recovery also wasn’t typical. “I had what we call ‘nurse curse,’ which is every complication that’s imaginable. My stomach was getting very bloated, and I was in pain. Pancreatic fluid was leaking into my abdomen.” She had multiple scans and tests and two procedures where they removed the fluid from her abdomen and then analyzed the fluid. Her hemoglobin level dropped, her care team had to reinstall a tube, and she experienced a gastrointestinal (GI) bleed. After the GI bleed, Marissa received a blood transfusion, and her team later informed her that they almost had to put her in the intensive care unit. “Then when I was eating after I got home, and my nurse practitioner friend could see that my food was coming back out of my drain that they put in. The connection between the stomach and my small bowel was leaking.” Her care team wanted to pull her drain out and send her home, but Marissa insisted on staying for observation for 24 hours with all the complications that she’d already experienced.

Reflecting back on her recovery, Marissa says, “I feel I was fortunate to be in good physical condition just prior to my diagnosis. I lost a lot of muscle mass while I was in the hospital, but I would have had a more difficult time if I had been in worse physical condition before my diagnosis.”

Marissa got involved with patient advocacy groups after she completed treatment and returned to work. She didn’t do online research after her diagnosis, since her doctor was pretty straightforward with her treatment plan. The COVID-19 pandemic began right after she returned to work, so unfortunately there were no in-person support groups.

Throughout the process, there were many lessons learned that she wants to share. “Educating yourself is so important. Trust your doctors. Understand what they’re saying or ask questions if you don’t understand. I think your outlook is very important. Understand what your goals are for your life and how you want to live your life.” Patients and their loved ones need to weigh the different factors and goals for during and after treatment. Some patients might choose quality over quantity in their cancer journey, and it’s a personal decision for each person.

Marissa was in awe of her husband and kids. “My kids have been amazing. My team thought I’d be in the hospital for a week for treatment, but it ended up being a month. I went in before Thanksgiving and didn’t come home until just before Christmas.” She returned to work in February, and then the COVID-19 pandemic started. “Our kids were in preschool and 1st grade at that time. That was a horrible year for everyone, but our kids were just incredible. My family is awesome.” At the time, Marissa was in a doctoral program, working a weekend night shift, and hybrid homeschooling our kids. In early 2021, she took a leave of absence from school, went down to two 12-hour night shifts, and was with their kids for their remote school time in the hybrid model. “I ended up working as a substitute nurse in our school district when we switched back to full in-person learning, and I’m now working as a nurse in our home district with our oldest child in my building. I love it, but I took a 50 percent pay cut moving from the hospital to a public school, but my work-life balance is worth it.” She and her family especially enjoy hiking and the outdoors at Adirondack State Park and Lake Placid. They’ve simplified their work lives to enjoy more time with their kids.

Marissa has some other advice for patients and loved ones, “I know it’s hard for some people to ask for help, but ask for help when you need it.” Her family had a meal train that was delivered to a cooler on their front porch so that friends could leave food without intruding at all. Friends took their kids to their activities. Marissa saw a therapist and is still going to process all her feelings about her cancer experience.

Even though going through cancer was difficult, Marissa is so grateful for her family and friends who supported her through everything. She also stresses the importance of self-advocacy. “It’s your body, and you want to make sure you understand what the specialists are telling you. Make sure that you’re making an educated decision for yourself and that you have all the information you need to make the right decision for you and your family.”

Un superviviente de 30 años de leucemia mieloide aguda comparte su experiencia

March 14, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Programs, Art Flatau, Patient Stories, PEN Blog /by Kara Rayburn

Un superviviente de 30 años de leucemia mieloide aguda comparte su experiencia from Patient Empowerment Network on Vimeo.

¿Qué podrían experimentar los pacientes con leucemia mieloide aguda (AML) en cuanto a los síntomas, el tratamiento y cómo sobrellevar la AML? Art Flatau, paciente de AML y líder de Empowerment, comparte la experiencia de su trayectoria en AML desde el diagnóstico, el tratamiento y la supervivencia de AML, y los avances en los tratamientos de AML. Art también comparte sus consejos para que los pacientes y sus cuidadores reciban una atención óptima y cómo ha encontrado un sentido a sus esfuerzos de defensa del paciente.

See More from [ACT]IVATED AML

Related Resources:

What Promising AML Treatments Are Available for Newly Diagnosed Patients?

Cómo la resiliencia de una sobreviviente de AML le salvó la vida

BIPOC Patients Living With AML | Mortality Rate and Favorable Genetics

Transcript:

Mi nombre es Art, y vivo en Austin, Texas. En 1992, tenía 31 años y me casé con dos hijos pequeños. Estaba en la escuela de posgrado y trabajando de tiempo completo. Durante un par de semanas, me había estado sintiendo cansado y había estado teniendo una fiebre de bajo grado. También tenía muchos moretones, probablemente porque estaba jugando rugby en ese momento. Pensé que la fatiga era porque estaba sobrecargado de trabajo y estaba durmiendo poco.

El sábado tuve un partido de rugby, pero estaba demasiado cansado para jugar más de unos minutos. Al día siguiente, estaba demasiado cansado para hacer mucho. Mi esposa y yo decidimos ir al médico el lunes.

El lunes por la mañana me desperté y había sangre en mi almohada porque me sangraban las encías. Mi esposa quería llevarme a la sala de emergencias, pero la convencí de llamar a nuestro médico. Fui al médico más tarde esa mañana. Ella notó mis síntomas, hizo un examen rápido y me envió a hacerme un análisis de sangre. Después del almuerzo, me llamó y me dijo que tenía que ir al hospital y ver a un hematólogo. Sabía que estaba en problemas.

Hablamos con el médico y dijo: «Tenemos que ver qué tipo de leucemia tienes». Qué shock. Sabía que estaba enfermo con algo que no había tenido antes. El hecho de que fuera cáncer fue un shock. No sabía que había diferentes tipos de leucemia, pero pronto descubrí que tenía leucemia mieloide aguda (AML).

Esa noche recibí transfusiones de plaquetas y glóbulos rojos. A la mañana siguiente, me hicieron una biopsia de médula ósea, me administraron más plaquetas y me operaron para ponerme una vía central. Esa tarde, menos de 24 horas después de oír la palabra leucemia en referencia a mí, empecé la quimioterapia. Todo esto era abrumador. No teníamos forma de entender cuáles eran nuestras opciones ni de obtener una segunda opinión.

Tres semanas y media después, salí del hospital sin cabello, 25 libras menos, mucho más débil pero vivo. Tuve más quimioterapia en las próximas semanas y más hospitalizaciones. Unos meses más tarde, terminé con la quimioterapia. Recuperé algo de fuerza, me volvió a crecer el pelo y traté de que mi vida volviera a la normalidad.

A principios de 1993, unos 9 meses después de ser diagnosticado, tuvimos otro susto, había recaído. Necesitaba un trasplante de médula ósea. Aunque tuvimos un poco de tiempo, unos días para averiguar a dónde ir para un trasplante, nuevamente nos costó entender el proceso. También estábamos luchando por encontrar la manera de mudarnos a Dallas por tres meses más para el trasplante. El trasplante fue una tarea larga, un mes más o menos en el hospital, un par de meses de ir a la clínica ambulatoria dos o tres veces por semana, pero lo logramos.

Ahora, 30 años después, sigo vivo. Mis hijos se graduaron de la escuela secundaria, la universidad y la escuela de posgrado y tienen carreras exitosas. Mi esposa y yo tenemos el nido vacío. Yo sigo trabajando, pero espero jubilarme dentro de unos años. Aunque me considero muy afortunado por haber sobrevivido y haber tenido relativamente pocos efectos secundarios, tengo algunos efectos secundarios con los que lidiar, incluida la testosterona baja.

Algunas cosas que he aprendido durante mi trayecto AML incluyen:

AML es una enfermedad rara: La buena noticia es que en los últimos años se han descubierto muchos tratamientos nuevos para AML. Estos nuevos tratamientos están haciendo que más personas sobrevivan AML. Sin embargo, estos nuevos tratamientos evolucionan rápidamente. Es importante encontrar un centro oncológico y médicos que traten a muchos pacientes con leucemia.
Considere la posibilidad de ofrecerse como voluntario: El trabajo de promoción es una forma excelente de ayudarse a sí mismo y de apoyar a otros pacientes y los esfuerzos continuos de investigación.
Si algo no se siente bien con su salud, defienda sus derechos y solicite más pruebas.

Estas acciones son clave para mantenerse en su camino hacia el empoderamiento.

Share Your Feedback About [ACT]IVATED AML

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

March 14, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Programs, Art Flatau, Patient Stories, PEN Blog /by Kara Rayburn

30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

How an AML Survivor’s Resilience Saved Her Life

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Transcript:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday.

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock. I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through.

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters. I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include:

AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia.
Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

Share Your Feedback About [ACT]IVATED AML

Patient Profile: Eva Grayzel

March 9, 2023/in Patient Stories, PEN Blog, Women Patient Stories /by GIna Craig

When stage IV squamous cell carcinoma survivor Eva Grayzel shares her story, you can tell that she has a zeal for life. She survived oral cancer and works as a performance artist and speaker. Diagnosed at age 33, she was told that she had a 15 percent chance of survival. Eva’s journey started with a sore on the side of her tongue that wouldn’t resolve .

About eight weeks after noticing the sore, Eva saw an oral surgeon who examined her tongue. She complained about the pain, and her oral surgeon said, “if it bothers you so much, we can take it off.” She agreed. Two days later, Eva felt fine, and two weeks later, she received an assuring call from the surgeon’s office to inform her that her biopsy was negative. She was confused and wondered if there was a mistake of some sort. “I literally thought, ‘What on earth could they be looking for in a biopsy of the tongue?’ The receptionist told Eva she had nothing to worry about. Two years passed, and she had no obvious symptoms. But early stage oral cancer often goes without symptoms. Two years later, another sore developed on her tongue over the previous biopsy site.

Eva returned to the doctor after eight weeks, and they diagnosed her with hyperkeratosis, which is basically a callus. “They treated me for trauma for nine months; they had my teeth shaved down; they gave me gels and rinses. It was a nightmare.” Her doctors also told her that the amount of speaking in her work exacerbated her symptoms, and she regrets that she didn’t know more about oral cancer at that time. Eventually, a second opinion brought her the correct diagnosis of squamous cell carcinoma, which was treated with surgery and radiation and followed up with reconstructive surgeries.

Throughout her cancer journey, Eva has endured a lot. She had one-third of her tongue removed, a partial tongue reconstruction from arm and leg tissue, a modified radical neck dissection, and a maximum dose of radiation therapy. “It was most definitely the hardest thing I’ve ever been through during treatment. I planned my funeral and didn’t think I was going to survive.” Through an extraordinarily successful treatment plan, Eva not only survived but also regained her ability to speak clearly. With a second chance at life, she couldn’t let the same thing happen to someone else.

Radiation to the head and neck is the most difficult part of the body to tolerate therapy. “What I learned is that you’re stronger than you think you are. You have more strength than you know you do. I really didn’t think I could get through this, and somehow I pulled through.”

Eva has learned some things and has some advice for survivors. “There’s always hope, and hope is different to different people. For some it might be no pain, for others it might be living six months to make it to their kid’s graduation or wedding. Only you know what’s right for you.”

She has self-care advice for care partners as well, “You need to take care of yourselves so that you are renewed, refreshed, and at your best to take care of the person you’re caring for. When you’re tired, rest. When you need a break, take it. Go out for lunch with a friend or take a walk. Do what you need to do for yourself, so you can be the best caregiver you can be.”

For family and friends who want to help but don’t know what to say, Eva advises asking yes/no questions: “I’m making chicken for dinner, can I make you some? I’m taking the children to the park, can I take yours? I’m going to the market, can I pick up anything for you” On a visit, empower the patient by asking them how they want to spend the time, instead of making the visit about your agenda. Bring with you what you think they may enjoy; polish their nails, massage their feet, read the sermon of the week, bring a game, a joke book….

Eva has lessons learned about oral health. “I would say as an oral cancer survivor, I’ve learned a lot about oral health. And this goes for all cancer survivors, the health of your mouth is the window to the health of your full body. So, if your body is fighting cancer and even recovering from treatment, keeping your mouth in its cleanest state will serve you well.”

Even for those who have adult children, Eva is an advocate for telling your kids the truth. Patients might think grown children are too busy with their own responsibilities, but she advises talking to them about your cancer, because it’s an opportunity to teach them about what it means to be a family. If you choose to hide a diagnosis from children, you are promoting secrecy and dishonesty, you risk a lot of anger if they find out you withheld the information, and mostly, it’s an opportunity to teach children how to overcome life’s challenges. Life is in balance. When tragedy strikes, notice the opposing forces of gratitude and hope.

Every cancer survivor should get an oral cancer screening at their dental checkup. If you don’t know whether you receive a screening, visit sixstepscreening.org. “Or simply tell your dentist, ‘I want an oral cancer screening. It’s the standard of care, the American Dental Association says that everybody should be getting the screening at least once a year at a dental checkup.’”

After surgery and reconstruction, Eva can swallow normally but can’t feel or taste in the area where her cancer was. She can only chew on the right side of her mouth but still feels grateful. “The body is amazing. It adapts in a phenomenal way, so whatever you lose, however your body changes, it will learn to adapt to work for you. It takes time, it takes patience. But there’s hope for a really good life after cancer, but the mind is part of it, and also taking good care of yourself is really important so that you can be the best person you can be.”

Eva’s children were 5 and 7 when she endured treatment for cancer. To help children like her own cope with a diagnosis in the family, she wrote two children’s books to promote dialogue between adults and children and to help them cope with their feelings and fears.

Eva speaks to oral cancer survivors internationally and provides hope. If you know someone who has been recently diagnosed, don’t hesitate to reach out to Eva: eva@evagrayzel.com

Patient Stories Archives

Rod, you’ve spoken about how the ‘Pinktober’ campaign can feel exclusionary to men with breast cancer, and how this can impact awareness, support, and even diagnosis for men. Can you elaborate on these impacts and suggest ways to create a more inclusive campaign?

You’ve mentioned that receiving a breast cancer diagnosis was especially challenging as a man. Can you tell us more about that?

You and Rob Fincher created the “Male Breast Cancer Manifesto”, which aims to raise awareness and improve outcomes for men diagnosed with breast cancer. Can you highlight some of its key action points,

For someone who wants to raise the issue of male breast cancer but feels hesitant, what advice would you give them to confidently and constructively engage with a charity?

Sharing personal stories is a powerful advocacy tool. What was the most impactful or surprising response you received after sharing your story publicly?

Looking ahead, what are the most critical areas where you believe we need to focus our efforts to improve the support and outcomes for men with breast cancer?

About Rod Ritchie

Male Breast Cancer Manifesto

Related Resources:

Transcript:

Talk to your kids.

It’s o.k. to not know all the answers.

Maintain your child’s routine.

Parent from the couch (or bed!).

Ask for help.

Seek out community.

Nicole’s Story

Neuroendocrine Cancer Organizations

Wellbeing

Footnote:

Related Resources:

Transcript:

Related Resources:

Transcript:

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