Tag Archive for: patient profile

Pancreatic Cancer Patient Profile: Marissa Smith

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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.”

A Patient Profile: My Aunt Jan

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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: Jeff Boero

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When Jeff Boero shares his multiple myeloma patient journey, it’s clear that self-education has been a vital part of his experience. He was first diagnosed through his primary care physician who referred him to a general oncology group in the San Francisco area. They confirmed it was multiple myeloma. It soon became clear to Jeff and his wife that he perhaps needed a second opinion, and he was connected with the University of California San Francisco (UCSF) to their multiple myeloma specialist. 

The second opinion changed the approach to Jeff’s care rather dramatically. He was quickly scheduled for a stem cell transplant and subsequent maintenance after that. As Jeff recalls, “Through UCSF, I became eligible for a CAR T-cell immunotherapy trial in 2017. That was very successful and kept me disease-free and medication-free for about 2-1/2 years. And then I relapsed and went on another maintenance program. I became eligible for another clinical trial for a bi-specific T-cell engager (BiTE) that I’m on now and am having good results.”

Jeff was almost in complete denial about his diagnosis for the first 6 months. The diagnosis threw him into a world of terminology and treatment that was completely foreign to him. That sense of his diagnosis feeling foreign also started to lead into a certain level of depression — just not knowing what it is, how is it going to be treated, what it meant to his long-term survival. Jeff remembers, “So, with the encouragement of my wife as caregiver, I became more educated as I engaged in various conversations with specialists and participated in some of the PEN webinars. It  became clearer to me about what some of the options are and what they can be. Being engaged with UCSF really opened up the treatment options. With me becoming more educated and able to speak the language of myeloma, I was starting to understand the diagnosis as it was presented by UCSF. And it led to a much richer engagement in conversation with the oncologist and with the nurse practitioners.” 

As a cancer patient, Jeff views self-education as the key to empowering patients toward better care. It was through self-education that he learned about other options. Before becoming more educated, Jeff was mostly just listening and trying to absorb as much as he could and seemed to remember mostly bad news. According to Jeff, “There’s so much good news around myeloma treatment and available therapies. It was through self-educating and those conversations that my outlook brightened too.”

By patients educating themselves, they can start to ask questions about the clinical trial like: “What is it, and why is it going to show better results than my maintenance therapy?” And in conversation, patients can start to better understand the purpose of the clinical trial. “I think it’s important for patients to understand what they’re trying to accomplish through the clinical trial that wasn’t through their maintenance therapy. What is it about this trial that’s different that we haven’t addressed previously?” But patients can’t ask those questions unless they have at least a basic understanding of their cancer and how the various therapies approach the cancer cell. “But if you listen to webinars and things like that, you’re better able to have those conversations. As a matter of education as these opportunities arise, you’re able to have a much richer conversation with your oncologist and your care team about the benefits that could potentially be derived from the clinical trial.” 

Clinical trials have benefitted Jeff, and he recommends seeking an opinion that is dedicated to research of your specific cancer. Learning institutions have more access to emerging research and treatments that likely won’t be FDA-approved until 2 or 3 years later. “So if you as a patient can be at the forefront of some of these trials, that can be tremendous. I’m on therapies now that didn’t even exist when I was diagnosed. Research is moving quickly.”

Jeff senses some hesitancy among patients about clinical trials. “There’s this misconception that if you join a clinical trial, one group is getting the real stuff, and one group is getting the placebo. And the trials that I’ve been in, everybody gets the real thing, and everybody’s progress is tracked on their response to the real thing.” He knows trials can seem intimidating. Jeff went through his initial clinical trial, because he was almost out of options for conventional maintenance therapy. His cancer burden continued to increase, and he’d been through a number of different treatments. “The CAR T-cell program came up and seemed to be a perfect fit for me. So I did the clinical trial partially out of necessity, but I also had extreme confidence in my oncologist that he was promoting something that he thought would be most beneficial for me. I think it’s a matter of putting trust in your oncologist. Maybe I’ve been lucky, but I’ve had good results and good response to both clinical trials.” He also feels that the sponsoring institution will give an honest appraisal of where the program stands and what the progress and success has been up to that point. 

Reflecting on the value of Patient Empowerment Network (PEN) and other resources, Jeff says, “I’ve gotten so much out of the PEN webinars that are provided and some other organizations. I’m a slow learner in this area but am absorbing as much as I can. I need to hear the same thing a few times before I start to absorb it and fully understand it. So I rewatch the PEN webinars, and it works for me.” He also suggests learning as much as one can but was advised early on to stay away from Google. “There’s so much out-of-date information. Whereas websites like Patient Empowerment Network’s and others have updated information that’s far more relevant. And I also find the navigation on the PEN website very easy to use.”

After meeting patients who don’t have the same level of health insurance benefits, Jeff feels a sense of gratitude. “I had tremendous support from my employer who in essence said take the time you need to get yourself well again. So I have a lot of gratitude for that support, my wife as caregiver, family, social support, my faith community, and for my proximity to UCSF that makes treatment very practical and very possible.” It’s opened his eyes in that regard. There are so many benefits that he has that others don’t have. “I’ve joined various support groups initially to gain support. Now things have come full circle, and I find that I’m at the other end of the conversation to give people comfort in what they could possibly be doing to improve their situation.”

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Is It Too Late for a Myeloma Second Opinion?

RMC Patient Profile: Lamar Valentina Part 2

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Read the first part of Lamar’s RMC journey here…

Part of Lamar’s cancer treatment occurred during the COVID-19 pandemic. He had to quarantine to keep himself safe, and it was scary to him at times. “But now that COVID-19 has subsided a little bit. It’s still around, I recommend doing some things that you enjoy. Don’t let cancer take away the joy that you still have. If you’re someone who’s active, maybe you just need to scale back on how active you are. Of course, you want to be safe. If you’re someone who likes to travel, find ways that you can still do it safely.”

Lamar found some activities that were helpful for him physically and mentally. “What helped me was being more involved in nature. I would do walks. I would sit outside and watch the clouds. I’d watch the stars at night. And I try to still continue to play basketball with my son. Obviously, he’s starting to get a little better than me. He’s getting bigger and faster, and I’m a little weaker. But I try to still do things that are fun and enjoyable.”

During part of COVID-19 restrictions, Lamar started missing the ability to do things, being self-sufficient, and even getting back into work. People asked why he was in such a rush to get back to work, but work helped him feel a sense of purpose. He felt like he had become a burden to his loved ones who had to cared for him. Lamar recommends striking a balance between accepting help and doing some things yourself. “Let others who want to help you actually help you. If you feel up to doing other things on your own, don’t shy away from that. Don’t let cancer take away a little bit of independence or a little bit of your purpose that you feel. I enjoy doing these PEN interviews, because I think we need that voice, and people shouldn’t shy away. Obviously, I’m not saying go out and be reckless. Be safe but try to do the things that bring you joy.”

People often tell Lamar that he looks so healthy and that he doesn’t look sick, which can be frustrating, since he wakes up with pains and has tumors all over. His biggest takeaway from this journey is how resilient he is. Lots of people tell him that he makes cancer look easy but don’t realize that it’s very difficult. “I just feel like life is short as it is. We all have an expiration date, and we don’t know when it’s going to come. And that’s the only thing guaranteed in life. For me, I really just feel like I want to live each day as if I’m trying to make a mark, at least be as happy as possible, chasing my goals and my dreams. I try to make sure with every encounter that I have with people that I’m not angry or bitter. I don’t want that to rub off on them, so I try to make sure that I greet everyone with a smile.”

If people don’t know specifically from his appearance since his eyebrows and hair are gone or know from someone else, Lamar prefers others to not know what he’s going through. “I don’t want people to feel sorry for me. Just treat me like a normal person, and hopefully I can pass on some positive energy and some happiness to everybody else regardless of what they’re going through to make it a kinder place here on earth.”

Lamar feels blessed about his overall quality of life. He’s at work and still travels for work as a flight chief in the Air Force. I’m not as physically active as I’d like to be. He’s doing chemo every three weeks, and will be starting radiation soon for a spot that’s remaining. The ultimate goal is to achieve no evidence of disease. He’s been in outpatient care for his entire treatment process and has been able to go to the hospital for chemo and then returns home and to work. “It’s been an absolute blessing that I cannot take for granted. But I still go through ups and downs. I have slight pains here and there. I’d love to be able to work out three to four days a week. But I’d rather take it easy and focus on my body healing from the inside out, and I’ll get back to working out more sooner or later.”

His biggest advice to renal medullary carcinoma (RMC) patients and cancer patients is don’t give up hope. “A lot of this fight is mental. Your body follows physically what you think mentally. So speak positive affirmations. Every day when you wake up even on the tough days, speak healing into your body. What you’re eating, whatever you’re drinking, it’s going to provide healing and substance. It’s going to rid your body of cancer. No matter how dark it looks or how dark it gets at any point, do not give up hope. Do not lose your spirit. Make sure you’re smiling and laughing and doing the things you love with the people you love.”  

Lamar looks forward to ongoing research of RMC. “This has been a huge purpose added to my life. Anything I can do while I’m here, I’ll do it. I’m a big advocate for more support and more research for RMC. I know each day we’re getting closer to a cure, and hopefully this won’t impact families as negatively as it has in the past.”

What’s Lamar’s parting advice to other patients? “When you come out of the storm, you won’t be the same person that walked into it, that’s what the storm is all about. When you can’t control what’s happening to you, control how you respond to it, that’s where your power is.”

RMC Patient Profile: Lamar Valentina Part 1

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When Lamar Valentina shares his renal medullary carcinoma (RMC) patient journey, you can tell that he loves serving and helping others in his work and free time even as a cancer patient. As an active duty Technical Sergeant in the U.S. Air Force, Lamar has continued to work throughout his cancer treatment. When a lump on the side of his neck combined with extreme abdominal pain and flank pain concerned him, Lamar decided to have his symptoms checked out at the hospital. His RMC diagnosis came shortly before he turned 35, and his chemotherapy started about two weeks after his diagnosis.

Lamar is fortunate to have some friends who work in cancer centers, and they were connected with experts at Dana-Farber Cancer Institute, which is in Boston where his son also lives. The COVID-19 pandemic created a delay for some of his chemo, but it ended up as a benefit to give his body a break. Lamar recalls feeling some measure of relief about his tumor scans, “…we saw that there was a little bit of growth, it wasn’t alarming growth, but there was some growth, but it still hadn’t gone to where it was when I first was diagnosed, so that was the good thing that it wasn’t as aggressive as it’s known to be.”

After the things he’s gone through during his cancer journey, Lamar feels he has much to share to help other patients with what they’re going through. For newly diagnosed patients, he recommends that patients take advantage of resources and oncology therapists that most cancer centers provide. “Take the time to process the news of your diagnosis. I was sort of like a deer in headlights. Everything went blank, and I felt like I was in a nightmare of a dream, trying to wake up. So process your diagnosis and go through the emotions. You’re going to feel sad. You’re going to be depressed. You’re going to be angry. You’re going to be curious as to why you. But once you process those emotions, make sure you don’t compartmentalize those emotions and you express them to somebody whether it’s a friend, a caregiver.” 

Early after his diagnosis, Lamar decided to go full-on vegan and lost a lot of weight. “It was very frightening, because losing weight made my body become a lot more frail and weak. So I started to eat fish and chicken. His advice to other patients, “I think specific things like that definitely talk it over with your primary doctor, your medical team to make sure you’re doing what’s best for yourself and that you’re not going to hinder your treatment.”

Lamar feels fortunate to have connected with the Patient Empowerment Network (PEN) RMC Empowerment Lead Cora Connor through a Google search and found R.M.C., Inc. He also feels that the RMC community is a very tight-knit community, “I really like to pay homage to those we have lost. One of the first friends I met was Chad Alexander, Ava Cummings, Kai Penn, Da’Corey Kimbrough, Seth Calhoun, Caleb Wheeler, Feninna Vasilou, and there are so many other people I’ve met…they’ve since passed away. These are a few of the RMC warriors we have lost. I continue to fight for them and to everyone still battling RMC, I wish nothing but clear scans as we fight on the front lines together! Finding people who are going through this whether RMC or another form of cancer, I think you can relate more to cancer patients, because they understand what you’re going through.” 

Lamar advises patients to empower themselves. “You want to be able to at least know what questions to ask. And it starts with educating yourself. So I think you want to be able to go into those appointments and know what questions to ask, know if you get a certain answer to that question to know what a good follow-up question would be.” Early on in his care, he would record his conversations with his doctor to ensure he got all the information. Lamar also advises writing down questions before you go to your appointments to make sure you don’t forget about them. 

According to Lamar, being involved and learning about trial treatments are vital ways for patients to take part in their own care. “A lot of people have asked me about my treatment plan, but we’re all different. Our bodies are different. The way we can handle certain treatments are very different. So I try not to compare my care and the chemotherapy to what other people had. Because if you go based off that, you may turn down a treatment that may possibly work better for you with your genetics, and it may not have worked well for someone else, and you deny that based off their reaction to that treatment when it could be really helpful for you.”

Read the second part of Lamar’s RMC journey here…

MPN Patient Profile: Robyn Rourick Part 2

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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

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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…

CLL Patient Profile: Allan Rosenthal

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When Allan Rosenthal shares the story of his chronic lymphocytic leukemia (CLL) journey, you can tell that he didn’t let the word cancer hold him back. Affectionately known as “Dr. Pickleball” by friends and colleagues, he led an active lifestyle when he was diagnosed and continues to live an incredibly active life with CLL. Right before he was diagnosed in 2018, Allan noticed when he was playing doubles tennis with some men younger than him, he just couldn’t keep up with them. This unusual experience of a lack of energy spurred him to see his primary care doctor. Yet his diagnosis wasn’t a typical diagnosis – far from it. He works as a podiatrist, and his internist helped him to decipher the diagnosis.

After a laboratory blood test came back, it was revealed that Allan’s white blood cell count was elevated. His primary care doctor actually misdiagnosed his symptoms as an infection and put him on a round of antibiotics. And after his usual internist returned from vacation, he thought right away that Allan had CLL and sent him to see a hematologist/oncologist. As Allan remembers, “My doctor said, ‘You’re not going to die from this. You’re going to do the watch and wait or watch and worry.’”

Like many cancer patients, Allan’s diagnosis brought concerns beyond his health. “I was worried about the financial burden. Through organizations like PEN, my oncology unit, and the social workers at my hospital I have received help.” A nurse from the pharmaceutical company also calls him every month or two to just check to see how he’s doing in terms of both physical and financial concerns.

As a physician, he’s well aware of patients’ ambiguity with their care, and it’s always good to gain knowledge. Allan has recommendations for other patients, “It’s good to have someone with you at appointments. My wife is a nurse practitioner and is also a former oncology nurse, but it’s still tough to keep up with all the improvements going on in the field of CLL.”

Allan was diagnosed in the spring and was fine until later on that summer. The lymph nodes in his neck started to swell, and he went to his oncologist who informed him about the medication ibrutinib (Imbruvica). Allan says of starting his CLL treatment, “I remember taking the medication on a Friday and then going to play golf the next day with a friend. Pretty quickly I had the energy I used to have. Now I play pickleball, golf, platform tennis in the winter, and I ski. I just bought a Peloton bike during the pandemic that’s really helped me. I have no side effects from the medication. I’m living my life.”

As for his CLL treatment, he thinks of ibrutinib in the same way that someone with diabetes or hypertension would take medication for a chronic condition. His CLL medication has allowed him to live with CLL as a manageable condition rather than dealing with common side effects that many cancer patients deal with. Allan has also learned that educating himself about CLL is vital even for someone with a medical background. He’s experienced the value of patient education. And after he learned about the Patient Empowerment Network (PEN) from his oncology team in Connecticut, Allan shares, “I also know from PEN that there are other medications if this doesn’t work out. And I’ll go from there. PEN is keeping me educated to the fact that there is ongoing research, and there are other avenues; it’s not a death sentence.”

When he was first diagnosed, despite his and his wife’s medical backgrounds, Allan felt scared and depressed. He spoke with a friend in the medical field who said, “My father and uncle have CLL. If you start fretting about it, I’m going to wring your neck. They’ve been living with it for years, and it’s not that big of a deal.” He’s since come across more and more people in his life living well with CLL thanks to their efforts to become educated and proactive in managing their diagnosis, which continues to encourage him.

Allan credits PEN with helping him in his CLL journey, “PEN has educated me further along than if I went at this alone. Dr. Google is not exactly the best source of information, and Dr. Facebook isn’t a reliable source either.” Allan looks for reliable sources, “PEN is where I can get questions answered and get the proper answers from knowledgeable people in the oncology field.”

During his CLL journey, Allan has received valuable advice from others and is now happy to be in a position to help other CLL patients. His advice for other CLL patients? “Live your life. Be active. Staying active helps tremendously. And don’t panic. Everybody has the tendency to go crazy. It’s the big C word. I was scared also. I didn’t know what this was all going to mean. But as my oncologist told me, ‘You’re not going to die from this. We can take care of it. Just don’t panic.’”

Patient Profile: Vanessa Steil

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“PEN builds community and empowers you to be your own advocate.” – Vanessa Steil, thyroid cancer survivor and patient advocate.

When Vanessa Steil recounts how she was first diagnosed with thyroid cancer, you can tell it is a story she has told many times. The dates, the terminology, and which doctor told her what and when are all precisely chronicled in her memory. Yet it took her reflecting on her story as a survivor to process just how crucial all of the details were. Now, she’s passionate and committed to helping others, and she has dedicated much of her time—and career— over the past eight years to doing just that.

It all started in March 2013 during a routine visit to the gynecologist. The doctor, who performed a neck check as part of the exam, felt a lump on the right side of Vanessa’s thyroid. “I was taken off guard by the whole thing,” she says. She tried to convince herself that the lump was nothing serious, but she followed the doctor’s advice for further testing, and a month later was diagnosed with papillary thyroid carcinoma: thyroid cancer. She was 26 years old. “My whole world changed with just three words. In an instant, I went from feeling like a normal person to having to absorb all this new medical jargon,” she says.

It was a difficult time for Vanessa. She was young, she didn’t know anyone else her age who had cancer, and she didn’t know anyone with thyroid cancer. While she had support from friends and family, at the end of the day she felt very much alone. As the weeks passed by and her mind raced on, she began to second-guess her diagnosis, question whether she should have surgery, and considered having another biopsy. “I had to work through the emotional aspects of my diagnosis, including coming to grips with the fact that I had thyroid cancer and the fear I felt about the outcome,” she explains. “You have to be in a positive place when you are going to have surgery.” Fortunately, her cancer was not overly aggressive, and she was able to delay the surgery until she felt more prepared.

By June 2013, she was ready for surgery and had a total thyroidectomy that included the removal of six lymph nodes, one of which was positive for cancer. The surgery was successful, and so far, she hasn’t required any radiation therapy, a common follow-up treatment post thyroid cancer. While in 2017 her antithyroglobulin levels, a marker that can be used to monitor a possible cancer recurrence in those with an autoimmune condition, went up and remained that way, she continues to be monitored. Her bloodwork and scans are done twice a year, and once a year she has a neck ultrasound; each time she experiences what survivors call “scanxiety” until she gets an all clear from the results.

When Vanessa was diagnosed, her endocrinologist gave her a key piece of advice that she didn’t completely understand at the time, but it stuck with her, and the meaning soon became clear. He told her, “Don’t turn this diagnosis into a research project.” As someone who is naturally curious and was eager to learn all she could about her disease, as soon as she was diagnosed, Vanessa took to “Dr. Google” looking for information and answers, but she wasn’t always finding helpful information. “While online, I was landing on horror stories,” she says, adding that while it is important to be knowledgeable about your disease, it is imperative to get accurate information and to be careful about choosing which sites or social media outlets to use as resources. “The Internet can be a scary rabbit hole, and it can cause unnecessary worry,” she says. “Finding a reputable site, like Patient Empowerment Network (PEN), that’s done a lot of the legwork for you and has comprehensive resources available is invaluable,” she says. Vanessa especially appreciates that PEN helps prepare patients for doctor visits by providing a list of questions to ask and offers relevant insight to caregivers, and survivors. “I was impressed with the PEN content, because it helps the patient from diagnosis to recovery,” she says. She also recommends sites that offer a sense of community where you can interact with other patients who have had similar experiences. “PEN builds community and empowers you to be your own advocate,” she says. “You have to know your body and speak up for yourself. That’s where the community aspect comes in. As a survivor, I try to provide that sense of community for others.”

After her surgery, Vanessa found a creative outlet that allows her to provide support for others and helped her through her own recovery. She created a lifestyle and wellness blog, Living in Steil (pronounced style), where she shares her personal journey and favorite resources as well as beauty, food, fitness, and health and wellness information. She says she was inspired to start the blog in February 2014, while recovering from surgery and trying to put the pieces of her life back together. “You don’t often process the emotional aspects of cancer until later,” she says. “It’s been cathartic to blog about my experience and have the site resonate with so many other patients and survivors.”

Her work as a blogger has led to many more opportunities to share her story including being asked to participate in a book, Tough: Women who Survived Cancer by Marquina Iliev-Piselli and collaborations with other advocacy groups in the healthcare space. In addition to her blog, Vanessa is a health coach and Board Certified Patient Advocate who also works for a pancreatic cancer foundation where she manages public relations and social media. She credits her diagnosis with helping her find her career niche and a meaningful role that allows her to make a difference in the lives of patients every day.

As far as her cancer is concerned, technically she is in remission, but says she is vigilant about staying on top of her health. “I have never taken my survivor status for granted,” she says. She continues to be her own advocate and has found that sometimes means she needs to find new doctors. If they are not listening to her or are not open to communication, she knows it’s time to move on. “It’s important to find a doctor who takes your concerns to heart,” she says.

Through Vanessa’s own experience with cancer, she’s learned a lot about advocating for herself and others. Vanessa has experienced firsthand what works and what doesn’t, and she is grateful to be able to share her knowledge. “If I can bridge the gap for people with a cancer diagnosis and make it easier for them to get the resources they need, then that is rewarding for me,” she says. “I had a difficult diagnosis, but I learned from my challenges and now I can share that knowledge with others. I can’t think of a better way to pay it forward than that.”

Read more about Vanessa and follow along with her journey at www.livinginsteil.com or on social media at @livinginsteil.

Read more patient stories here.

Patient Profile: Ben’s Diagnosis of Oral Cancer

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Ben has an amazing story. It’s a story of resilience, determination, hope, and perseverance. A story about gaining knowledge and actively participating in the treatment and care of his cancer. In short, this is the story of an Empowered Patient and how he fought for his own life.   

Ben is a 35-year-old single male from New Zealand. A highly intelligent, successful professional whose storybook perfect life came to a sudden jolt in October 2018 when he was diagnosed with a cancer of the tongue. He underwent the surgery to remove most of his tongue, along with a dissection of the left side of the neck. A pathology result revealed a squamous cell carcinoma of the tongue. It also showed that 2 lymph nodes in the left side of his neck were positive for cancer. Per standard treatment protocol, Ben was given radiation therapy after the surgery without a concurrent chemotherapy. There is a growing evidence in the literature that, in such cases where the cancer had spread to the regional lymph nodes, post-surgery chemotherapy given concurrently with radiation therapy reduces the chance of the local recurrence of the disease.  The obvious drawback being that, while this dual attack may be tougher on the cancer, it is also tougher on the patient.  It is my hope that, someday, this standard protocol may change. However, as of right now, it still is the standard of treatment to give just radiation following surgery as it happened in Ben’s case. Unfortunately, it did not work so well.  

Hardly six months after completing this treatment, he had a recurrence of cancer in the left side of his neck in the area of those positive lymph nodes six months ago.  So, his cancer had come back.  A second surgery was done to remove the cancerous lymph nodes followed by another radiation treatment.  His first radiation treatment was given to both sides of his neck as it should’ve been. This time it was limited to the left side of the neck. This time, he did receive a chemo drug but for 2 doses only.  

While he was recovering, Ben came across the story of Diana, as posted on PEN website. Ben happened to know Diana and thought that since Diana responded so well to Keytruda (Pembrolizumab), he would take Keytruda himself. He decided to pay for it out of his own pocket since it was not covered by the health plan. Keytruda is a wonderful medicine, but it’s not a magic pill or a cure-all and does not always work and did not in Ben’s case.  About 4 months after finishing the radiation treatment, poor Ben had another recurrence of the cancer, this time on the right side of the neck. Naturally, he was devastated because he thought that Keytruda had failed him.   

 By this time, Ben and I had been talking about what he should do if the cancer were to came back again. Based upon the information derived from the literature, we felt that he had to have a full dose of chemotherapy concurrent with radiation, either without the surgery or following a surgery. Ben decided that he would like to have that lymph node removed and so the third surgery was performed.   

Following the surgery, Ben underwent a concurrent administration of radiation and chemotherapy. He received Cisplatin, which is a very effective chemotherapy drug in the form of 6 weekly doses while also receiving radiation 5 days a week for 6 weeks. Treatments were completed around March of 2020. 

 It has been about 10 months since, as of February 2021 and, as far as we know, Ben is still cancer-free. For him, this is the longest remission so far. He feels healthy, strong & energetic and is working full-time and enjoying his life. The only problem is that he is so scared of finding another setback that he refuses to go for a follow-up scan, that was due long time ago. I continue to work with Ben to convince him to have the scan done because if the cancer comes back, the sooner we find it, the better we can attack it. I emphasize that another recurrence, while quite unsettling, will not be the end of the road for him and that newer & better treatment options are being discovered all the time.   

Ben had to deal with a whole lot of other medical problems during the past couple of years. Problems that resulted from his cancer and/or his cancer treatments. He developed a great deal of difficulty with swallowing and speech after his tongue surgery, as expected. 

Following his second surgery, Ben developed a paralysis of his left vocal cord. He could hardly speak beyond whispers. Our ability to produce voice is dependent upon the movement of the two vocal cords as they rhythmically move to midline to touch each other and then move apart.  When one vocal cord is paralyzed and cannot move to midline, a firm contact between the 2 cords cannot be established, thus an ineffective voice. 

Ben went to see an ear, nose, and throat doctor who injected a filler substance called Radiesse, into his paralyzed vocal cord. This is meant to thicken it so that the opposite & healthy vocal cord can make contact with the paralyzed one and produce sounds.   

That procedure was less than satisfactory for Ben. His doctor recommended a bigger procedure, a surgery, called Medialization of the Vocal Cord. This involves pushing the paralyzed vocal cord towards the midline by stuffing something behind it. The doctor explained to Ben that he was not sure if this surgical procedure would work any better than the temporary injection of a filler. Luckily, I was able to help Ben. I agreed with his doctor that this surgery may not give a satisfactory result.  I suggested that he should consider getting an additional surgical procedure, called Arytenoid Adduction.  I had been through something similar. The problem with Ben’s vocal cords was not just the paralysis of the left vocal cord, but that both vocal cords were situated at an angle. So, when the doctor fattened the paralyzed vocal cord, it still could not make a firm enough contact with the healthy cord. Arytenoid Adduction surgery straightens the angle of the vocal cords and, combined with the medialization procedure, restores the near normal voice. However, it seemed that Ben’s ENT doctor was not very familiar with this procedure 

So, while he was dealing with his other medical issues, Ben and I were working to find if there was a surgeon in New Zealand who would do the Arytenoid Adduction surgery. Finally, after Ben’s third surgery, when he seemed to be in remission, he decided to tackle the problem of his voice. He found the right surgeon and went for the surgery. It did not go well. 

A most unfortunate complication occurred while undergoing anesthesia and Ben stopped breathing. He had to be resuscitated and an opening was created in his trachea to enable him to breathe.  Obviously, the surgery was abandoned with the recommendation that it be attempted again after a few weeks or months. 

 Ben, being a very smart person, wondered if now would be the better time for the surgery while he still had the opening in his trachea to prevent a similar complication.  I wholeheartedly agreed with his reasoning and suggested that he present it to his doctors. So, he had the second surgery done within 10 days. There were no complications with his breathing this time because he already had an opening in his trachea. The surgery was successfully performed. The trachea opening was closed and Ben has a nice and clear voice now which he is very happy about.   

His bad luck did not stop though because somewhere along the way, he also developed a severe stomach issue called Gastric Dumping Syndrome due to a possible nerve damage during the neck surgery.   This condition causes nausea, bloated feeling, abdominal pain and diarrhea. Luckily, as it often happens in these cases, after some time, his stomach regained its function.   

As is often the case in cancer patients, Ben has suffered from periods of depression. He has handled it very well by seeking the professional help and taking antidepressant medicines. He has valiantly fought through all of his challenges with his intelligence, determination, knowledge, and persistence.  

I think that we all need to admire Ben’s tenacity and his never-ending hope. Recently, he has had genomic studies done on his cancer. Based on the result of those tests, we know that there are certain mutations of the cancer that can be targeted if and when it rears its’ ugly head again. We have options if needed. 

 So, this is the story of a truly empowered patient and how he has changed his prognosis and the course of his illness often as a result of his own initiative.  Not only by cooperating with his doctors, but becoming more knowledgeable about his illness and actively participating in his treatment decisions.  This activism as a patient has often led to a better treatment outcome.   

This is what Patient Empowerment Network is all about. Hope, determination and knowledge. Remember, the knowledge is your superpower.   

Disclaimer: Sajjad Iqbal, MD is a retired physician and rare cancer survivor who routinely supports, mentors and guides other patients through their perilous cancer journeys. Any opinions, suggestions, or advice provided is solely from Dr. Iqbal’s perspective as a well-informed and knowledgeable cancer patient, not as a physician. The patients must discuss their health with their own doctors and follow their advice.