Women Patient Stories Archives

Thyroid Cancer Patient Profile: Beena Patel

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

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


* 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

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.”

Patient Profile: Eva Grayzel

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

A Patient Profile: My Aunt Jan

In early March 2020, just days before the world shut down, my mother stepped out of her sister’s Hospice room. My mother, the oldest of three, and her other sister, the youngest of three, had spent the last couple weeks by their middle sister’s side as she used every last ounce of strength she had to fight the cancer that had so deeply taken hold of her body. That day in March, though, my mother left early so she could meet me and my three children to go shoe shopping. She told her sister goodbye and explained she was going to spend some time with her grandchildren. She’d barely left the parking lot when her youngest sister called. A few moments after my mother had left the room, my aunt breathed her last breath.

My Aunt Jan, at 72, was too young, too healthy, and too disciplined to die from cancer. She had devoted much of her life to staying physically fit and consuming only the healthiest diet. She ate organic foods long before there were grocery stores selling them. She belonged to co-ops and sought out health food stores and juiced her vegetables when most people had never heard of those things. The rest of us were enjoying the processed food revolution that came about in the 1980s while Jan was biking to the health food store to get some bulk, organic grains. She stayed lean her entire life and enjoyed showing off her muscles. Her favorite way to spend time with anyone was by taking long walks, preferably on the beach on Sanibel Island, Florida, where I grew up and where she was able to retire. She was a music professor. A PhD. She was widely respected in her field for her knowledge, her expertise, and her own talents at the piano. She was extremely passionate about practicing the piano. She never missed practicing. She loved the classical composers: Bach, Beethoven, and Chopin. She knew them all. She taught them all. She played them all. She was so excited about classical music that I am sure her students couldn’t help but pick up some of that enthusiasm just by being in the room with her.

Jan never married or had kids. She had pets. First a dog named Bear who I think she mourned until the day she died. Later she had cats who found their way into her life in a variety of ways. She enjoyed their company, and they never complained when she practiced the piano for hours at a time, as my brother and I had as kids when she lived with us for a short time. Her practice interfered with our afternoon cartoons, and we let her know it, but she never relented. Practicing took priority over her niece and nephew. Practicing took priority over everything. I imagine it was her go-to escape mechanism. It must have been her therapy. She would have needed an outlet as the middle child in her family. She absolutely had middle child syndrome. She often recalled how my mother, the oldest, got to go out of state for college, while she got stuck going in state at the local school. And, of course, she and my mother both had stories about how their youngest sister, the baby of the family by a good seven years, got to do whatever she pleased. All families have similar stories, but Jan, I think, really felt the burden of being a middle child. My grandmother was not the most supportive of personalities and could be quite soul crushing when she put her mind to it, and she put her mind to it a lot. When my mother graduated from law school as a single mom with two kids in toe, my grandmother told her, “Well, we didn’t think you could do it.” She had similar zingers for all her daughters (and her granddaughter) for just about every important life event. None of us was unscathed, and Jan came out of that incredibly stubborn and with an insatiable drive to achieve, to succeed, and to prove herself. She did all those things, but I don’t think they were ever enough. I’m not sure anything ever would have been enough.

When Jan finally retired to Sanibel, which had been one of her life goals, she didn’t really retire. She began playing the organ and became involved in the music program at church. She wrote articles for the local paper, she biked all over the island, she walked the beach, she continued to teach college classes online. She just kept on achieving and never slowed down until things came to a screeching halt. Our first indication came when she had to go to the emergency room. It was then we found out that she was sick. Really sick. She had known for a while but hadn’t told any of us. She had been diagnosed with cancer — uterine we think, but it was never really made clear — about a year prior, and she ignored the recommended treatment. Instead, she sought alternative healing. It didn’t work, and she finally told her sisters what was going on and agreed to chemotherapy. But that is all she agreed to.

Even though I had been writing for Patient Empowerment Network (PEN) for several years and knew about the resources they offered, she was not interested. She was not interested in the information I could share with her about the latest studies and research. She was not interested in the many programs PEN has that help guide patients and their care partners through the process of diagnosis and treatment and the best ways to be an empowered patient. She was so stubborn. She had done things her own way her entire life and been pretty successful, so she was going to do cancer her way, too. I can’t say as I blame her. She had only always relied on herself, and she really believed that she had done all the things to set herself up to beat cancer her way. On paper she really had. Fit, healthy, ideal weight, superfoods, no processed foods. She did all the things. The only thing she didn’t do was embrace the resources she would need to become an empowered patient and to partner with caregivers to advocate on her behalf when necessary. She tried to go it alone, but she didn’t have to. PEN had all the resources she needed.

Had she embraced an organization like PEN, it’s impossible to say if her outcome would have been different. Some people just don’t survive cancer no matter what the circumstances, and Jan’s circumstances weren’t great. Not only had she delayed treatment, but there was poor communication among doctors, a botched surgery, and a generic treatment plan that didn’t seem to be tailored to her or her cancer. The treatment didn’t work and a lot of trips to the emergency room later she found herself in Hospice with the “thoughts and prayers” of her doctor sent via his nurse. Even in Hospice, barely eating, barely awake, I could tell she was still determined to beat the cancer. She just couldn’t seem to accept that it had been stronger than she. Looking back, I still wish she had decided to access the many resources available, either through PEN or another organization, but I do also see why she felt the need to rely only on herself.

Now, more than two years later, my mother has cancer. Lung cancer. Adeno carcinoma. It’s advanced, but very treatable and we are focusing on the very treatable portion of the diagnosis. A lung cancer diagnosis isn’t the death sentence that it was in 1992 when her father died from it. I’m very thankful about that. In a couple days from my writing this, I will go with her to her first treatment at the research hospital where my aunt refused to get treatment. I may still be a little in shock from her diagnosis, but I have already been comforted by the knowledge I’ve gained over the past several years while writing for PEN. My mom and I have already had discussions about some of the treatments I’ve written about, and she too seems to be comforted in all that she’s learned through PEN. She’s very supportive and a top-notch proofreader who knows I love to submit clean copy, so she’s read everything I’ve written at least once. She also took a dive into the PEN website on her own and found the section that tells you the questions to ask your care team. We’ve both learned so much through PEN that we feel pretty prepared to face this. I mean, nobody wants to get cancer. Nobody wants to go through chemotherapy, so we are overwhelmed and scared, for sure, but mostly we feel empowered. As we embark on this journey, we know that she, the patient, and I, the care partner, don’t have to figure it all out on our own. We’ve got a community of support at our fingertips. And that is the power of PEN.

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter

Part 1

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part I from Patient Empowerment Network on Vimeo.

In this part one of three, Lori Sackett shares the journey of her multiple myeloma. She explains some of the symptoms she was facing before diagnosis to having to advocate to receive next-generation sequencing testing.

Part 2

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part II from Patient Empowerment Network on Vimeo.

 In this segment of Lori’s story, Lori and her daughter discuss the importance of seeing a myeloma specialist, having a good support network, and the role her daughter played in Lori’s care.

Part 3

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part III from Patient Empowerment Network on Vimeo.

Lori and her daughter share their biggest takeaways and pieces of advice for other newly diagnosed myeloma patients and their care parters/advocates.

Myeloma patient, Lori’s advice:

  1. Insist on seeing a myeloma specialist
  2. Take care of yourself physically and emotionally
  3. Look for people/support and allow them to help you
  4. Live for now

Myeloma care partner and advocate, Carleigh’s advice:

  1. During every appointment have at least one note taker
  2. Ask for a hard copy or print out of everything
  3. Create a way to stay organized
  4. Keep a list of questions
  5. Have a mindset of persistence and perseverance, and to maintain hope

My Self-Advocacy Journey With Ultra High-Risk Multiple Myeloma

My Self Advocacy Journey with Ultra High-Risk Multiple Myeloma from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Lori shares her journey to diagnosis and treatment. Watch as she explains the varied symptoms that she experienced, the benefits of a second opinion and clinical trials, and her  advice to other patients.

Related Resources:

How to Thrive and Set Myeloma Treatment Goals

Expert Advice for Newly Diagnosed Myeloma Patients

Multiple Myeloma Danielle’s Clinical Trial Profile



My name is Lori, I’m from Portland, Oregon. I was diagnosed at age 60 in June 2019 with ultra high-risk multiple myeloma. The road to my diagnosis was long and regrettably all too common.

I have always been very healthy and active. I believe my healthy history clouded my doctor’s ability to connect my symptoms to anything serious.

My journey started with chronic fatigue and needing extra sleep. Then came horrible headaches followed by shoulder and back pain, frequent infections that didn’t clear with antibiotics, and severe nose bleeds. 

In May 2019, I had my annual exam that included a blood draw. I later learned I was tested for diabetes and cholesterol but none of the basic blood panels that flag abnormal values. I went into my exam with my laundry list of issues, but was given a clean bill of health.

Four weeks after this exam I was traveling in Kenya on a safari.  I felt very sick during the trip, but I assumed I had picked up something on the long flight.  When I returned  home I could barely get out of bed. I collapsed in the middle of a dinner with some doctor friends who insisted I go to the ER where they held me overnight to perform additional testing. They discovered severe anemia and that my basic blood panels hadn’t been ordered for a number of years. I continued to think it was some odd African bug until the doctors arrived the next day to share the suspected diagnosis of multiple myeloma. I was in shock and very afraid.

I sought a second opinion and I was extremely fortunate to begin my treatment at Seattle Cancer Care Alliance. In July 2019, I was started on KRD induction therapy. Our journey was further rocked when our insurance declined coverage for carfilzomib, which was nearly $20,000 for two infusions each week. The insurer insisted I fail on the standard treatment before I could be approved.  I knew from reading how essential the first line of therapy is.  With Seattle Cancer Care Alliance’s help, I was finally approved due to my high-risk status. However, it took months to finally receive approval, and I had to take care of stressful, expensive bills while also completing my treatment.

Treatment was exhausting and required me to drive 3 hours each way each week from Portland to Seattle.  We needed to spend at least one night each week in a hotel. By October 2019, a bone marrow biopsy analysis showed no myeloma cells. I was reminded of the spotty nature of myeloma and the limits of biopsy testing, but I was extremely encouraged. 

At diagnosis, I was given a 20 percent chance of a 5-year survival. I am now 3 years post-diagnosis, and I am in remission.

Some of the things I have learned during my multiple myeloma journey are:

  • Ask your primary care doctor what tests have been ordered and request a comprehensive blood panel if you suspect something is wrong and not being adequately addressed.
  • Seek a second opinion at a cancer center that combines patient treatment and research. 
  • Clinical trials and new treatment combinations can be effective even for high-risk disease. 
  • Work with your doctors to get insurance approval for the protocols they recommend.
  • Empower yourself by learning about treatment options and new therapies.  
  • Be encouraged that there are so many positive advancements happening in multiple myeloma.

These actions are key to staying on your path to empowerment.

Millennial Stage IV Colon Cancer Survivor Urges Earlier Screening

Millennial Stage IV Colon Cancer Survivor Urges Earlier Screening from Patient Empowerment Network on Vimeo.

 Stage IV colon cancer patient Ashley received her diagnosis at age 33. Watch as she shares her story starting with a routine physical, surgery and treatments that she endured, and lessons learned during her cancer journey.

Special thanks to our partner, Colorectal Cancer Alliance, for helping to make this vignette possible.


My name is Ashley, and I’m from West Virginia but currently reside in Nebraska. In February 2021, I was diagnosed with stage IV colon cancer at the age of 33.

I decided I wanted to join the Air National Guard and had to complete a physical examination. After visiting a hematologist/oncologist for dangerously low iron and hemoglobin levels, I went in for a routine physical a few months later. The physician’s assistant found a mass in my stomach area, and they sent me for a CT scan. The next morning, my husband Josh got the call that I missed. The CT scan had shown three different masses – and was likely cancer.

I was dumbfounded, shocked, and then I felt the tears rolling down my face. My doctor informed me, “You need surgery immediately, since the tumors are getting close to completely closing up your colon.” I also had a tumor on my liver.

I had surgery to remove the tumor before it closed my colon, but the surgeon couldn’t get to the tumor on my liver. After surgery, they told me the three most important things to do while there that would get me home sooner were eating with no issues, walking, and having a bowel movement.

Finally after two surgeries where my liver, gallbladder, one-quarter of my colon, part of my small intestines, appendix, two large tumors, and a lymph node that turned into a tumor was removed, as well as 12 rounds of chemo.

I received news in March 2022 that my cancer is back but will not be as aggressive as it was before. I am taking things one step at a time and one day at a time, trying to stay optimistic at each step.

When someone gets cancer – the “journey” is never over. The fear NEVER goes away. Even when you are declared to have no evidence of disease, there is a possibility cancer can come back. And if it does come back, the chance of fighting and winning again gets slimmer.

If you know someone that has cancer – be kind – just because they don’t look sick, doesn’t mean they aren’t having challenges. Just because their numbers and scans are good doesn’t mean they are in the clear for the rest of their life. Always, always – BE KIND!

Some of the things I have learned during my colon cancer journey are:

  • Get your colon cancer screenings on time. Or if you’re too young like me, listen closely to what your body tells you and get annual physicals.
  • Say yes to those who want to help by bringing food, checking in, or donating. We are amazed by the support we’ve received from friends, family, and complete strangers.
  • Fighting the cancer fight is much easier knowing how many people are on our side and how much love there is for us out there.
  • Advocate for yourself! Do research on your specific type of cancer and mutations. If you feel you are being told something that just doesn’t seem right, question it – push the bar until you can’t anymore! There are so many options out there when it comes to cancer and survival, you just need to find the right person that will take care of you!

These actions are key to staying on your path to empowerment.

Advice From a Young-Onset Colorectal Cancer Patient

Advice From a Young-Onset Colorectal Cancer Patient from Patient Empowerment Network on Vimeo.

Colorectal cancer patient Jessica was surprised but not shocked even after a diagnosis under the age of 40. Watch as she shares her journey from symptoms, diagnosis, her advice to others, and coping methods she’s found helpful for navigating her experience as a patient.

Special thanks to our partner, Colorectal Cancer Alliance, for helping to make this vignette possible.


My name is Jessica, and I’m from Chicago, Illinois. Even though my doctors thought I was too young, I was diagnosed with colorectal cancer at age 39.

I’d been experiencing occasional rectal bleeding for about a year when I was finally referred for a colonoscopy.

While my doctors were convinced that I was too young for colorectal cancer, I was still worried because my grandmother died of the disease.

My doctor asked me to go in to get my colonoscopy results. My parents knew what that meant, so we went together. When the GI gave me the results, stage III rectal cancer, I felt so scared. I called my best friend, and I couldn’t even speak. We just cried together.

After I received my diagnosis, my doctor told me it’s very curable. I had a 2-inch mass in my rear. I had a CT scan to confirm the cancer had not spread followed by an MRI. And that’s when the whirlwind began.

I returned to a craft I hadn’t used much in recent years. To sort my thoughts, to update my friends and family, to document the most important year of my life, I started writing again. Beginning a blog was at once a coping mechanism for me and the best way I knew how to share this breathtaking news with friends and family I’d collected from across the country and over decades — and still conserve energy I would need to fight this fight.

Five years later, and I’m thriving.

I want to raise awareness about the rising incidence of colorectal cancer in the under-40 crowd because I was symptomatic and ignored before I was diagnosed. I know that not everyone is as lucky as me, especially young people who are often diagnosed at an even more advanced stage.

Some of the things I have learned during my colorectal cancer journey are:

  • Watch out for signs your body gives you
  • Don’t take “no” for an answer even if doctors think you’re too young for colorectal cancer.
  • Cases of young-onset colorectal cancer are increasing, and that’s why funding colorectal cancer research is so important.
  • Find something to do to help you cope. If you’re unsure whether it’s a healthy activity, ask your doctor or care team member who you trust.

These actions are key to staying on your path to empowerment.

MPN Patient Profile: Robyn Rourick Part 2

Read the first part of Robyn’s MPN journey here…

Picking up after 26 years of watchful monitoring of her myeloproliferative neoplasm (MPN), scientist Robyn Rourick was then referred for an allogeneic stem cell transplant by her MPN specialist, Dr. Gotlib. The transplant team started working through the matching process for a bone marrow transplant donor, which often begins with close biological relatives. Although Robyn’s only sibling wasn’t a transplant match, a person considered a near perfect transplant match for Robyn was found.

At that point in her journey, the possibility of entering a Phase II clinical trial called ORCA-1 was presented by Robyn’s transplant doctor. She discovered that the ORCA-1 treatment had the potential to completely eliminate graft-versus-host disease (GVHD). The clinical trial made sense to her. In Robyn’s trained scientific mind, she agreed that the trial was founded on sound scientific rationale with the potential for clear benefit and signed up for it. She researched other things like whether the transplant team could look at biomarkers to guard against graft-versus-host disease, but she decided to take the clinical trial path as her best option.

As for her feelings about the stem cell transplant, Robyn felt there was likely going to be a positive outcome for her due to the ORCA-1 clinical trial. Her knowledge about the trial really brought her a lot of comfort and put her at ease for the time she’d be around her family post-transplant. Robyn was lucky because her doctor was actually the primary investigator on the study. When he presented the transplant study as an option, that’s when she started to do more searching to find what patient advocacy groups were out there.

Looking back on her MPN journey, Robyn wishes that physicians would provide their patients with more patient advocacy resources, such as those available through organizations like Patient Empowerment Network (PEN). She feels fortunate that she discovered PEN through another patient advocacy website, and she firmly believes in PEN’s mission of empowering patients to gain knowledge to advocate on their own behalf. “I had the realization that in the clinical trial I was in, I was only the sixth patient, and the technology was stellar in terms of what we’re trying to do in terms of cell therapy. I just felt like patients need to know about the treatment advancements, and PEN is an excellent resource for learning about treatment and support options that I wanted to share my knowledge and patient experience with.” 

Robyn was fortunate to have a team of physicians in whose knowledge and treatment recommendations she could trust. She’s  tremendously grateful, because she knows it’s not always the case, and so offers this advice for others, “Make sure that you’re comfortable with your physicians. And if not, then move on. Don’t be afraid to reach out and to make other connections to other doctors, even across the globe. You shouldn’t hesitate to request a conference call with another provider to see if they’re aligned with your diagnosis and your watchful waiting or treatment recommendations. Patients must have the utmost confidence going through their cancer journey.”

As for the scientists who handled her sample in the ORCA-1 trial, Robyn was able to meet the scientists and saw the analytical data of her sample. She was highly impressed with the protocols that they used with the samples. Robyn was just the sixth myelofibrosis patient to join the trial. To have spent her life working on medicines for patients and then to be on the receiving end of this cutting-edge treatment for transplants made her feel very privileged. 

In her life post-transplant, Robyn has continued periodic blood work for routine monitoring and has been doing well. Two years following her transplant, Robyn’s myelofibrosis is in remission, and she has no evidence of fibrosis in her bone marrow. Her test numbers have been progressing nicely, and she hasn’t needed any additional treatment since undergoing the transplant. “I don’t have a single regret. I haven’t had a pimple, an itch, a scratch, absolutely nothing. My life has resumed exactly how it was before the transplant.”

In reflecting on her patient experience, Robyn offers this additional advice to other cancer patients, “Take a deep breath and give it some time to play out. The moment that I heard the word cancer and the risks with rapid progression, I had myself dead and buried. In my mind, what I needed to plan for was death. Prepare my family. Get everything in order. And to me, that was going to be the ultimate outcome. But then as things unfolded, I had conversations, did a little bit of research, and found out I did have some options. Things weren’t so negative in terms of progression and mortality. Don’t jump to the most negative outcome possible.”

MPN Patient Profile: Robyn Rourick Part 1

Though Robyn Rourick is a scientist by training and works for a biotechnology company, she took a mind-body approach to her myeloproliferative neoplasm (MPN) journey. The time that passed between Robyn’s initial MPN diagnosis and when she finally needed treatment was incredibly – and nearly shockingly – long. She was diagnosed with essential thrombocythemia (ET) 26 years after elevated platelets were shown on a routine blood test. After she saw a hematologist, they performed a bone marrow biopsy and concluded she didn’t have myelofibrosis and received the ET diagnosis. Robyn recalls of the time of her diagnosis, “I didn’t know about myeloproliferative disorders. Not many people did at the time. Nobody mentioned that I could potentially have an MPN.” 

Robyn’s blood levels were monitored over the years, and her platelets started to decrease. Though she didn’t realize at the time, her platelets were decreasing because her bone marrow was becoming more fibrotic. She was also tested for the early gene mutations (JAK2) that were discovered as more MPN research occurred but tested negative . She later switched to another hematologist who was very tuned into the gene connections. He looked at Robyn’s medical data comprehensively and was extremely attentive to any minor changes. As her blastocytes began shifting, he urged her to go see MPN specialist Dr. Gotlib. Dr. Gotlib did further analyses and classified her as having myelofibrosis, noting that when she was diagnosed with ET that her original healthcare team also couldn’t have  ruled out pre-fibrotic myelofibrosis at that time. Fortunately, Dr. Gotlib stated if he had diagnosed her with her original blood test 26 years prior, he would have recommended to simply watch and wait while monitoring Robyn’s blood levels on a regular basis. 

Although Robyn felt healthy and had no symptoms besides an enlarged spleen, as Dr. Gotlib dug deeper into her genetic profile, he found a unique mutation that suggested she was at risk for an escalation into acute myeloid leukemia mutation. He recommended Robyn for an immediate allogeneic stem cell transplant for her MPN treatment.    

Robyn then learned that graft-versus-host disease (GVHD) was a major concern for the transplant process, which can be debilitating. So she began to seek patient advocacy resources to inform her MPN journey. “I felt desperate and wanted to meet people who had myelofibrosis who successfully came through transplant. I didn’t want to just talk to a transplant person with a different disease.” Robyn went through some patient connection programs – including Be the Match, Caring Connections Program, and Patient Power – and was able to meet a few people and became quite close with one patient. 

She learned that even though transplant will cure your disease, doctors don’t always elaborate with patients on the potential for a compromised lifestyle due to  graft-versus-host disease. Sometimes patients will come through transplant in worse condition than before the treatment. Robyn had major fears about going through transplant and being able to work and do her extracurricular activities post-transplant. “I felt like I was going to be a letdown for my family and colleagues and didn’t tell my work until I was preparing to go out on leave, which in retrospect was silly.” After telling her manager, Robyn was given complete support, and realized she could have avoided carrying so much anxiety.

“For me, self-education and advocacy are important to enable yourself to have conversations about what’s possible in terms of your treatment. You don’t have to develop an in-depth understanding, but enough to have the ability to be conversational. If you’re proposed a certain pathway, it’s good to know enough to ask why. And if you’ve done some research on your own, then you can ask why not an alternate treatment approach. I think it’s really important to have some knowledge, because it builds your confidence to be able to move forward with what’s being proposed.” 

“Give it time, allow yourself to digest the information, have conversations about it, and develop your own understanding. At first, I was very closed about my diagnosis. I told my immediate family, and I told one very close friend who had gone through autologous transplant. The more that I began to talk about it and the more that I included people in the story, the easier my journey became.” Robyn also saw a cancer therapist who made some really good points to her. “She told me that ‘we’re all going to die of something, but most of us don’t know what that really looks like.’” In Robyn’s case, she had the opportunity to learn more about her disease, guide it, and direct her journey. And that opened up a whole new perspective.

The cancer therapist walked Robyn through some exercises: “What is it you’re afraid of? What do you have control over? Allowing yourself to gain control over some things will build your confidence that you can do this.” Robyn also encourages other patients to engage their network of friends and family and realize that it’s okay to depend on people. It’s not your fault that you have this diagnosis. Getting over the apprehension of telling people about your diagnosis and embracing help from others are key pieces of advice.

Robyn views patient empowerment as essential to the patient journey. She discovered Patient Empowerment Network (PEN) through another patient advocacy website and felt it brought her MPN patient experience full circle in terms of learning what’s available. “As I’m learning more about PEN, I’m just dazzled by the different forums they have to enable knowledge transfer, support systems, and advocacy.” 

Read the second part of Robyn’s MPN journey here…

Triple-Negative Breast Cancer: Sharon’s Clinical Trial Profile

Triple-Negative Breast Cancer: Sharon’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Breast cancer patient Sharon was diagnosed with triple-negative invasive lobular carcinoma after she found a lump after working out. Watch as she shares her breast cancer journey through two stages along with treatment – and what she learned and experienced with clinical trials and her advice to other patients. In Sharon’s words, “I do think that patients should be given all of their options upfront. I don’t think that clinical trials should be the last resort.”

See More from Patient-to-Patient Diverse Breast Cancer Clinical Trial Profiles



I found a lump after I had been working out. I kind of blew it off, I thought it was a muscle strain. I kind of went about two to three weeks just icing it. I asked my mom a couple of questions like, “Hey, have you ever had this type of pain?” She’s not an avid exercise individual, so she had no clue what I was talking about. It had become unbearable. My right breast, it became swollen. It was extremely swollen, red, very, very firm, and I knew that I needed to go into the doctor to see what was happening. So I visited my PCP, from there, I was told to get a mammogram, it was authorized. After that, I needed to have the tissue sampled to determine what the problem was. So, I received the phone call at work, and it was very disturbing, very distraught, I had found out that I was triple-negative breast cancer stage III at the time. From there, I immediately went into chemotherapy that included 16 sessions of chemotherapy followed by a right mastectomy. I opted for reconstruction. At the time of reconstruction, we went in and decided that we would do an expander, and that lasted about six weeks. Then I developed a staph infection, so the expander needed to be removed, so that was before I had a chance to receive my post-mastectomy scans. 

 So there was a large time frame which I was not having chemotherapy, and I had not received my scans. I was diagnosed in May of 2020 with stage IV. The cancer had metastasized to my liver, spine, and bones. Then the new care plan was to be placed back on chemotherapy, a different regimen, something a little bit stronger, since triple-negative is one of the strongest types of breast cancer.  

I felt like I did not have any additional options. I had tried what my oncologist deemed to be the most effective chemotherapy at the time. I was doing research in terms of holistic healing, different I guess, vitamins, fruits and vegetables, or changing my eating habits, removing sugar. So all of the life hacks that you kind of Google yourself which is something people should not do, so I tried that approach. And my oncologist said, “We might need to look into clinical trials.” It was definitely something that I did not hear throughout the initial process, which was kind of a bummer that that information wasn’t provided. I definitely think that my decision-making process would have been a little different had I known about them. So, we had tried all of the chemo therapies that we could, all the targeted therapies, and I am triple-negative, so none of my receptors allowed me to do the oral chemo or any of the hormone therapy. So I couldn’t do that. And so the option they tried for chemotherapy that was being tested was given, was provided, and I did a little bit of research on my own. I asked around in different support groups that I attend to see if anyone had heard of this trial drug. And from there, I decided that since the other options were not going to work with the type of cancer that I had then the clinical trial might have been the next best option. 

 I just recently celebrated one full year of living with stage IV… And I guess that’s a big to-do, because the scary stats online, they say that once your cancer has metastasized, you typically have 12 to 18 months of life expectancy. So, I’m passing that mark, I’m doing well. I am currently on a new chemotherapy regimen, and I have chemotherapy two to three times a month with a couple of breaks in between. I’m definitely a breast cancer advocate. I like to share my story to encourage others. I know it can be very overwhelming to kind of live with this disease every day, along with the anxieties that come with it. 

I was not familiar with clinical trials, I have had three oncologists, and I did not hear about them until my third oncologist, which is very scary. I do think that patients should be given all of their options up front. I don’t think that clinical trials should be the last resort. I think that patients should have…kind of be empowered to make the decision as for them, and the option for clinical trials should be shared. They should be a part of the care plan if the patient decides that it’s the best thing for them. I decided that it was best for me because there were not many…there were limited options available for me. And I think that had I been given the information earlier, I would have done some additional research to see what other people have been doing and are doing in terms of research, especially as it relates to clinical trials. One of the questions that I asked during the initial process was, “Were there other women of color on this particular trial, and have they seen success?” And unfortunately, I was the first person in my area on the clinical trial that was a person of color, so I had not known about them previously.  

It was beneficial for me to be a part of the trial. The trial was not a success for me, but I did read research where the trial drug actually worked for others. 

I would advise for patients to ask doctors for the information and do additional research on their own, it’s okay to seek guidance. It is also okay for patients to search for support groups, ask within the support groups if these clinical trials have been done in other areas. If the clinical trial has seen success, if there are women of color on those clinical trials, it is important to know as much as you can about the drug. Patients should ask, “What are the side effects? What is the efficacy of the drug? How is the data from the drug used? Is your information going to remain anonymous?” There are a number of reasons patients should advocate for themselves as well as doing their own research, although your nurse practitioner or oncologist may go through the documentation with you, that it’s a lot to process at the time, you should ask for time to review the documents with your family or whoever helps you make decisions, I would also advise patients not to feel pressure to sign the waiver or the information packet the same day. Definitely take some time to read it, do your own research, ask other people who have been on the trial or ask other patients who have been in your shoes previously. I spoke with a number of women who hadn’t completed the clinical trial that I completed, but they had worked on clinical trials in the past.  

They shared with me the side effects that they experienced as well as some of the remedies that they use to counteract those side effects. They also share with me their experience with their oncologist or with their care team. So I had a very, very helpful care team. They walked through the release waiver with me. I also spent some time with my family, spent some time with my religious leader, as well as some of my breast cancer buddies, is what I like to call them, to make sure that I was making decisions for me, opposed to being pressured to sign on the same day that you received the release. And then lastly, I would just say really meditate and ask yourself, “Is this something that needs to be done, or is this something that needs to be added to my care plan to make sure that I have the best quality of life?” 

I would just like to let everyone know that clinical trials are not approved drugs, but with the help of other women of color who have been left out previously, we can… Or we can ensure that other women of color who are battling cancer and have a better chance. So I joined a clinical trial to make sure that I can help someone who will experience the same exact situation, and hopefully there will be additional drugs created or approved within the next 10 years to help someone else. Being stage IV is more than a notion, but I’m excited that I’m a part of history. So that clinical trial that I participated in did not work for me, but the information that was gathered would hopefully help them improve the drug. 

Multiple Myeloma: Thomas’s Clinical Trial Profile

Multiple Myeloma: Thomas’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

 At the age of 34, Thomas was diagnosed with multiple myeloma. After multiple treatments, including an autologous stem cell transplant, Thomas shares why it’s critical to increase participation in clinical trials so we can understand why multiple myeloma poses a greater risk to certain populations. In Thomas’ own words, “Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma.”

2021-08-17_thomasIllustration_v2 (1)

See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles



My name is Thomas, and this is my multiple myeloma story. At age 34, I was healthy and enjoying life. I went to the gym daily, and when I wasn’t working out, I was shooting hoops with my friends.  

During a workout, I suddenly felt excruciating pain in my left shoulder. My family physician declared I had bursitis, but I was so young and in such good physical shape, I knew by instinct that the diagnosis was wrong. I made an appointment with a sports medicine doctor, who ran CT and MRI scans of my upper body. The result wasn’t good. I was diagnosed with multiple myeloma, a cancerous tumor of plasma cells in my left scapula.  

Because the myeloma was localized to my shoulder, my oncologist recommended 6 weeks of radiation therapy. 10 months after the treatment, the agonizing pain returned, but this time in my lower back. The pain was so intense, I remember lying on the floor, unable to move. My myeloma has spread to my lower backbone and right ribs. This time, I received an autologous stem cell transplant, but after 2 months, I relapsed again.  

Still determined, I agreed to participate in a clinical trial to receive an allogeneic stem cell transplant using human leukocyte antigen (HLA)-matched donor cells from my brother Earnest. This time, I lived cancer-free for two years before relapsing. To keep the cancer from progressing, I joined another clinical trial to receive a second allogeneic transplant using my brother’s donor cells. This aggressive treatment also included an intensive conditioning regimen of high-dose chemotherapy plus total-body irradiation. Although the therapeutic effects were serious and kept me hospitalized for 127 days, the transplant was successful and pushed back my cancer for another two years.  

Since then, my cancer has relapsed multiple times, but I refuse to accept defeat. Although my cancer is unlikely to be curable, my current treatment has been successful at keeping the myeloma from advancing. I’m hopeful that I can live a long life while treating it as a chronic disease.  I want to share my story as a Black person with multiple myeloma to raise awareness of this rare cancer. African Americans are twice as likely to develop multiple myeloma compared to whites, and are also more likely to be diagnosed at a younger age1.  

It’s critical we increase the participation of Black people in clinical trials so we can understand why multiple myeloma poses a greater risk for Black people, and get closer to a cure.  Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma. 

Multiple Myeloma: Danielle’s Clinical Trial Profile

Multiple Myeloma: Danielle’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Danielle was a very active person – and even went on vacation – right before receiving her diagnosis. Her myeloma journey unfolded with her myeloma symptoms, diagnosis, treatment, and participation in a life-altering clinical trial. “I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure.” 

See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles



Hello, everyone. My name is Danielle.

My myeloma story began in 2011. I was experiencing pain in my hip and my back area, and it was the pain that would come and go.  I was also very lethargic in 2011 and couldn’t understand why I was so extremely tired, so I thought the pain in my hip and back area was due to sciatic nerve, and I just didn’t do anything about it, ignored the pain. My husband and I went on our first trip without our sons in October of 2011, and two days before the trip, I developed this really bad nasty pain in my hip and leg area, which actually altered my walk, but I had no idea what the heck was going on, and so I was so frustrated that I… As soon as we got home, I went to see an orthopedic doctor because at that time I was working out like five times a week, so I thought maybe I pulled something, a pinched nerve or something. So I went to see him, he took X-rays, I believe it was an MRI, couldn’t be sure, but when I went back to get my test results, he sat me down and said, “Mrs. Spann, there’s a mass here in your fibula, and I’m going to recommend you to an orthopedic oncologist.” So, that was the very beginning of my diagnosis, initial diagnosis. Of course, I was in denial because I’m like, I knew what an oncologist was, but he must not be talking to the right person, but I went ahead and I met with the orthopedic oncologist. He ran a bunch of tests and mentioned to me that I had myeloma, which is concentrated in one area, which was my fibula, and then he recommended that I have my fibula removed on my right leg. Two days before surgery was scheduled, I received a phone call from his office, saying, “Mrs. Stann, you have lytic lesions all throughout your skeletal structure, and we’re recommending that you go see a bone marrow transplant oncologist.” So now it’s becoming real. The diagnosis is what it was, and I just wanted to know how I could basically fight this. I’m the type of person where you tell me one thing and let’s try to find a solution, so I met with the bone marrow transplant specialist, the oncologist, and then we formulated a plan, and that plan was for me to go on my first study trial. And so that was my introduction into my having multiple myeloma.

I made the decision to participate in a trial, because I trusted my doctor. He had the expertise to understand where my myeloma was, the counts, how aggressive it was, and he recommended that I go on the study trial. He also told me that if the study trial was not going to work for me, or if it wasn’t helping me, that he was going to take me off the study trial. So, I was on the study trial from like January to March…to the end of March, and he sat me down and said that it was not working, my numbers weren’t really moving, and that he was taking me off the study trial. And he took me off the study trial, there were some other treatments that were involved, and then I had two stem cell transplants. After the transplant in 2012, I went ahead and started another treatment regimen, and I was on that for several years, which worked well. My numbers were coming down, but then unfortunately they started going back up, so he mentioned that I should go on another study trial.  I weighed the odds, and I knew that he would not lead me down the wrong path. So, I went ahead and I participated in the study trial that I’m still on today, and I’ve been on it for about three, four years.

I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure. And so that’s what I wanted to help in some form or fashion, and when I first was diagnosed going to the Winship Cancer Center twice a week, there was a quote that was posted in the cancer center, and that quote was by Dr. Martin Luther King Jr., the quote read, “Life’s most important and persistent question is, ‘What have we done to help others?’” And I would go into the center and I’m like, “Yeah, what have I done to help others?” And me participating in the study trial, I felt like I’m helping others indirectly, and it wasn’t always just about myself, it was, “Okay, yes, the study trial gives the data, and it’s helping me, but it’s also helping that next person as well.”

So, I always look at my life as before diagnosis and after, and my after does not look like my before, I can’t do the same things, I can’t do the same things that I used to do. And one of those things is going to the mall and being in there like 10 hours, that’s so remedial, but it just goes to show like I cannot exert myself the same type of energy that I could before diagnosis. And again, that’s my new normal.  I stay positive with everything in life, things happen, but you just have to do what you can to make it better, no matter what it is.

I am happy and proud and so grateful and thankful to mention that as of January 2021, my myeloma is 0% detectable, which means there’s no presence of multiple myeloma in my blood, in my urine, nor in my bone marrow. And so I’m still on a study trial, and I have two different chemo meds that I have to take, and I just act accordingly if I know that one of the chemo meds that I have to take twice a week gives me an upset stomach. I just accordingly in finding different ways to push through it. It is what it is, and my motto when I was having my bone marrow transplants was, “This too shall pass.” And so no matter what I’m going through in life, no matter how down I get. This moment will pass. And so tomorrow, you’ll look back on today and say, “You know what, I did it, I made it.” And you’ll do that for the next day, until you realize that you’re just constantly defeating that previous day, and you’re moving forward.

So, I’ve heard the terminology of a clinical trial, never really paid attention to it because I never had to…I had an idea what the clinical trial was. But once it really came home to me, I realized that, in my words, the clinical trial is collecting the data necessary, they’re going to give you the trial medication, because they’re looking to get this, this medicine approved to put on the market. These medications would not get approved by the FDA, acetaminophen (Tylenol) at one point had to go have a study trial and then get approved by the FDA and then can be distributed to the masses. And so it’s the same with these other drugs. We need individuals to participate positively, knowing that if this is not helping me right now, it will help someone in five years, in two years, in 20 years. The advice that I would give is to trust your doctor, your doctor would not recommend a study trial if he felt that there was a medication that’s already on the market that would help you better. If the study trial you’re on is keeping you with your family, and at the same time is…the scientist, the researchers they’re gathering all this data, it could come to be an actual medication in three, five, seven years. And so just think of it as something that you’re helping society…and your fellow…and your fellow man.  

Triple-Negative Breast Cancer: Stacy’s Clinical Trial Profile

Triple-Negative Breast Cancer: Stacy’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Triple-negative breast cancer patient Stacy was diagnosed by a breast cancer surgeon she works with. Watch as she shares her journey through diagnosis, her decision to join a clinical trial, her experience with treatment, and her current feelings about clinical trials.

See More from Patient-to-Patient Diverse Breast Cancer Clinical Trial Profiles



I was diagnosed by a medical provider that I work for, she’s a breast surgeon, and once I was diagnosed, because I’m in the environment of breast surgeons and breast multi-discipline providers, my care was probably handled a little differently. So, I was referred to an oncologist who then introduced me to the clinical, the breast clinical trial that was available. I actually didn’t have a lot of questions except for will it help others? And he said it would, it’s for triple-negative diagnosed patients. The trial is an additional drug that helps with the triple-negative, and it has been provided by the FDA. So, because of that, I was willing to do it. My only pushback was that the treatment was every week compared to it being every two weeks or three weeks. The first phase…for me was…I had no problems with it. Actually, after treatment, I was up for 48 hours, which allowed me to do a lot of things – house work, part-time job, working remotely, it just afforded me things that I would not be able to do for being tired.

I always have had my screens, and I’ve had diagnostic mammograms and they always came back normal, so negative. And this particular time, I had Dr. Hampton to just look at it, it just felt like a cyst. I wasn’t really concerned with it. So Dr. Hampton did look at it, we thought initially that it was a cyst and not infected, but two weeks later that what felt soft then became very hard and round, oval-shaped. I was just…in two weeks, it was already hard. So I said, okay, so I had her to look at it again, and from there she said, You need to have this worked up.” And then from there, I went and had another diagnostic mammogram, and the next day I was scheduled for a biopsy by the top radiologist. And he said, “Stacy, I think that you need to have an MRI.”

Right, and so I had an MRI, had a CAT scan, all that was done within two weeks, and they tell me that I had cancer. Dr. Hampton…this is kind of funny because the staff scheduled my appointment, as I am the manager of the breast center. They scheduled my appointment. I met with her, and she let me know that I was triple-negative and that it would require chemo as well as radiation and surgery. The following week, I was scheduled for chemo.

Once I spoke with the oncologist, he said he employed me to look up the trial, and it would be beneficial to others. I initially was not that excited about the trial, I reached out to others who were triple-negative here in our office to ask and what they thought about it. One of the patients/friend, she already knew of the trials, she gave me three different trials that were going on right now. And one of them happened to be the one that he suggested that I should participate in, and she just basically said we would be helping…that I will be helping others to participate in it. So I thought about it for about two or three days, and then I decided to participate in it. Now initially, I wasn’t so keen on it, but after hearing about helping others and that it was mostly, I was told that it was almost like a miracle, medicine that helped triple-negative. And I decided to do it.

During my trial, the lump that I felt once I started on a trial treatment in three weeks, the lump was gone. And each week it wasn’t completely, but it reduced itself in three weeks. And as I continue with the treatment, we couldn’t feel it. I had my provider that I was seeing, the oncologist, and each week it was almost like it was gone, it was totally amazing because prior to that, it probably…it felt like the size of maybe a large, grape, but it just in three weeks, it was totally a big difference. So, I know that the trial is good. It has to be because in three weeks or something that I’m thinking probably grew in six weeks, whereas I was able to feel it, I couldn’t feel it anymore, and that three to four, it was gone.

So prior to being diagnosed, there were a multitude of things that I did not know. Working for a breast surgeon, where we see those patients and then becoming one of those diagnosed patients are totally two different things. What I thought I knew, it became apparent that I didn’t know, and there were things like the metallic taste that you have in your mouth, you can no longer use metals, anything, utensils…you have to use plasticware. The neuropathy that you feel in your hands, it’s hard to pick up anything that’s metal, the feeling just kind of goes through your hand, that means keys, that’s a door knob, you just have to kind of suck it up and do what you have to. The tiredness, but they don’t let you know that you’ll feel exhausted. That’s totally different from tired. So once you’re diagnosed, you have to see a multitude of providers, specialists, you have imaging that’s done, and the team that I have had done most of that for me, so I have a great support team.

Life today is, I have my up and down days, for the most part, my days are good. Once I have my treatment, my first phase went so well, I wasn’t tired. I was still doing things that I normally do with the exception that I had gained a lot of weight. So my second trial started about four weeks ago, and it hit me very hard, I was so exhausted, I have never in my life been that exhausted, that…taking two steps, and I felt like I had ran a marathon. With me being so independent and knowing or wanting to be around my team, I forced myself to come into work, and the second trial also brought on bone pain, muscle pain, headaches, and again, I was just totally exhausted from it.

What you have experienced or endured at the time, during a clinical trial and expressing it, it can only help the next person. But, in essence, I think the clinical trial is not in that only to help someone else, but it’s also to help you…I think the knowledge of just knowing that you’re a part of something that could be enhanced or approved or just help you with your health is a plus. So, working with a breast surgeon and working with multi-discipline providers that’s on the team, oncology radiology, technologist, and seeing the impact that it has on patients, I wanted to participate in the trial because again, I knew that it would help people. So just being a part of that environment definitely impacted my decision in participating in the trial. With the scientific studies that they have out there with the trial, it can only make the research for us better.