Patient Stories Archives

MPN Patient and Care Partner Share Clinical Trial Experience

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

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

See More from Jeff & Summer

Transcript

Jeff:

Hi, I’m Jeff. 

Summer:

Hi, I’m Summer and hi, I’m Zelda. 

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

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

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

 Jeff:

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

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

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

Summer:

I’m Summer. I’m Zelda. 

Jeff:

See you next time. 

Summer:

Bye. 

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

Living With an MPN and Being Your Own Best Advocate

Living With an MPN and Being Your Own Best Advocate from Patient Empowerment Network on Vimeo.

 MPN patient Rita experienced an extended path to her diagnosis. Watch as she shares her patient journey of varied symptoms, how self-advocacy and self-education assisted in her care, and her tips on how to empower yourself as a patient. In Rita’s words, “Don’t feel bad about advocating for yourself. Your doctor has many patients, but you have only one you.”

See More from Best MPN Care

Related Resources:

How Can MPN Patients Become More Proactive in Their Care?

My Polycythemia Vera Journey to Empowerment

How Can MPN Patients Stay Up to Date With New Treatments?


Transcript:

My name is Rita, and I was diagnosed with polycythemia vera in March 2019 after nearly three years of wide-ranging symptoms. Like many patients, my path to diagnosis was long and required me to self-advocate.

I was generally healthy until my symptoms of polycythemia vera began. I first experienced one episode of neck, jaw and chest discomfort, and the hospital blood test showed somewhat elevated platelets, and elevated red cell distribution width (RDW); but the doctors weren’t concerned. Next, I started getting optical migraines that were also dismissed. These were followed by incidents of feeling weak and sweaty; some days with headaches, dizziness, and fatigue; and also looking like I had a sunburn on my face with bloodshot eyes. I dismissed these symptoms. Then I started feeling short of breath at times, especially lying down, and experienced intermittent stabbing underneath my left lower chest area.

After having blood tests done, I had to call to find out my results that showed high hemoglobin, high red blood cells, and high hematocrit levels. After I Googled my test results, the first thing that came up was polycythemia vera. Experiencing additional vision issues, abnormal blood test results, chest pressure, and “foggy headedness” that frightened me, my doctor finally referred me to a hematologist who confirmed my suspicions with a PV diagnosis.

Some things I have learned during my MPN journey include:

  • We need to feel comfortable advocating for ourselves, and we need to make sure our doctors are open to being our partner in healthcare rather than our ‘boss’ in health care.
  • We also need to educate doctors that what looks like “dehydration” on a CBC could actually be a rare blood cancer. 
  • Get copies of your own blood test results, X-rays, other medical reports, etc., and, within reason, try to learn what they mean.
  • Diagnosed patients should be allowed to self-refer to an MPN specialist rather than be dependent on their physicians to do it. 
  • We need to self-advocate as “women of a certain age” to make sure we’re not medically or symptomatically reduced to “it’s menopause.”
  • Be careful how you express yourself to your doctor, because a careless comment may throw off your path to a correct diagnosis.
  • Don’t feel bad about advocating for yourself. Your doctor has many patients, but you have only one you. 

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

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


Transcript:

Lori:

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.

My Polycythemia Vera Journey to Empowerment

My Polycythemia Vera Journey to Empowerment from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Mark shares his journey to patient empowerment. Watch as he discusses symptoms that eventually pieced together his polycythemia vera diagnosis, helpful support resources, activities that have aided him  during treatment, and his advice to help other patients.

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Can MPN Patients Become More Proactive in Their Care?

What Are the Unmet Needs in Access to MPN Care?

MPN Caregivers: How to Provide Support During Appointments


Transcript:

Mark:

My name is Mark, and I live in the UK. I was diagnosed with polycythemia vera (PV) in April 2021 after a long path to diagnosis that was complicated by COVID-19 restrictions.

In December 2020, I had a routine blood test that flagged elevated hematocrit. My doctor told me the laboratory would re-do the test after Christmas and not to worry. Meanwhile, I researched various causes of elevated hematocrit and began drinking (approximately) 4 liters of water per day just to rule out any dehydration.

I had the repeat blood test in January 2021, which showed elevated hematocrit again. Next, I was sent for a JAK2 test and referred to a hematologist. I was also switching roles at work and moving at the same time. The moving and medical care changes were worsened by UK-wide COVID-19 restrictions. 

I got moved and awaited the results. A month passed with no news, and I could only connect with my medical team by Internet or phone. The test results could take up to 8 weeks. Then I started experiencing some strange eye issue with blurry zig-zag shapes and itching around my ankles and general skin discomfort after showering. I also had a gray-out in one eye that was like a shutter closing over my eye for about 30 seconds. I read about elevated hematocrit and microcirculatory issues before and decided to ignore it until my appointment. 

I was still awaiting my test results in March with a consultant appointment booked for April, and my doctor decided to repeat the JAK2 test. The results came in, and I was finally diagnosed with polycythemia vera. I was simply told that I would receive phlebotomies and was given a pamphlet. I went for my initial phlebotomy, and my journey began. Around that time, I told my doctor about the vision issues. They immediately referred me to the TIA clinic to investigate mini strokes and started me on aspirin. I  had no signs of a TIA, but the symptoms could not rule out the possibility. Fortunately, the vision issues stopped after my second phlebotomy.

I found the MPNVoice website and began learning about MPNs, which proved invaluable and helped me grasp my situation. It was so helpful to find others who lived with MPNs well beyond the Google-searched life expectancy, and reading their stories gave me comfort. Physically, I noticed that I had slowed down and was feeling sorry for myself, which isolation from COVID-19 restrictions didn’t help. I decided to start volunteering, re-started some yoga, and started exercising. I experienced immediate benefits and find keeping active is now a must.  

Initially, my hematocrit level didn’t lower, and I received advice for my hematologist to be more aggressive with my blood draws. With sometimes weekly draws, my levels started dropping. It took 6 months to level out to my target hematocrit maximum. 

Upon reflection, some things that I’ve learned during my PV journey include:

  • Try not to panic about what you don’t know and can’t control – this allows you to focus on the important stuff.
  • During the testing and diagnosis stage, try not to search too much on Google – it’s not helpful!
  • Finding others who are in the same situation can make a rare illness less rare and far less scary.
  • Keep active and don’t overthink everything. If you start feeling sorry for yourself, do something about it.

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

Myeloma Patient Profile: Jeff Boero

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.”


Support Resources

Financial Assistance Programs

Financial Resources for Patients and Families

Health & Disability Insurance

Federal & State Benefit Plans

Is It Too Late for a Myeloma Second Opinion?

RMC Patient Profile: Lamar Valentina Part 2

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.”

Introducing Jessica Catlin, Colorectal Cancer Empowerment Lead

Jessica Catlin Introductory Video from Patient Empowerment Network on Vimeo.

PEN’s new Empowerment Lead, Jessica Caitlin, introduces herself and her journey with rectal cancer. She also encourages anyone looking for support to reach out to her at jess@pivotsolutions.live  or on Twitter at @jesscatlin or LinkedIn.

Transcript

Jessica:

Hi, I’m Jess Catlin. I am a survivor of stage 3B rectal cancer, young onset, and I am so excited to be the new Colorectal Cancer Empowerment Lead for the Patient Empowerment Network.

I currently live in Chicago and I was here when I was diagnosed at the age of 39 with rectal cancer, only after I was turned away at age 38 because the doctors thought I was too young for colon cancer.

Obviously, being an advocate for myself was a huge part of my success in coming out of rectal cancer. I have been a survivor for five years now, so my doctor says I’m officially cured. But being empowered was a huge part of my treatment, as well, and as being a survivor too and some of the issues that have come up ever since my treatment was over.

So, I have done a variety of different things with organizations, speaking at walks, speaking to medical school students, so on and so forth. So, now being part of the Patient Empowerment Network seems like a wonderful way to really tie it all together. We’re here to help you, to answer questions, to be a source of information, inspiration. Even just to be a friendly ear because nobody knows this journey like somebody else who has been through it. As the organization’s name suggests, to empower you because we know empowered patients really have the best chance to thrive.

Listed here on my bio page are links to some of those talks and webinars, and so on and so forth, that I have done with other organizations if you want to check those out. Going forward, I will be creating original content for the Patient Empowerment Network and I don’t know what that looks like yet, I want to hear from you. I want to know what is most helpful. Is it blogs? Is it short videos? Is it webinars or panel conversations? Let me know. My contact information is here on this bio page. Please feel free to reach out or on social media as well, and please consider sharing your own story too. Even if you feel like you don’t have it all figured out or are in the middle of things right now, that can be very inspiring and helpful to someone who is following in your footsteps.

Additionally, you can also support Patient Empowerment Network with your time, talent, or treasure. Thank you so much for stopping by. Thank you for being a part of and supporting Patient Empowerment Network.

RMC Patient Profile: Lamar Valentina Part 1

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…

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.


Transcript:

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.


Transcript

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…

Care Partner Profile: Mike Crocker

The first time Mike Crocker became a care partner was in 2016 when his wife Dr. Gerri Smoluk was diagnosed with Acute Myeloid Leukemia (AML). The second time was in 2020 when, after being in remission for four years, Gerri was diagnosed with leukemia again. The two experiences couldn’t have been more different, says Mike.

Gerri’s first diagnosis came shortly after she started a new job. Gerri, who had a PhD in biochemistry, worked in the pharmaceutical industry. She was feeling tired a lot, but she was brushing it off, blaming it on the stress that comes with a new job. However, Mike urged her to see a doctor, so Gerri had a coworker, who was also a doctor, check her out. The coworker sent Gerri directly to the emergency room. She was admitted and was in the hospital for 45 days undergoing chemotherapy. “She had a very severe case,” says Mike.

It was overwhelming to say the least, but Mike quickly took on the role of caregiver. He soon realized that the simple things were the most helpful. Mike made sure to bring Gerri some of the comforts of home. He made sure she had t-shirts and sweatshirts to wear instead of hospital gowns. He brought Gerri her laptop and yarn for crocheting. He brought her the few foods that she could actually taste after the chemo wiped out her taste buds. Mike was also her sounding board. He listened as she talked through her care options and how they would affect her quality of life. He was simply there for her, walking with her daily so she could get some exercise and maintain circulation, so she didn’t have to stay in bed with the compression sleeves on her legs. “I did all the little things that could help her be a little more in control and have as close to a normal day as possible,” says Mike adding that Gerri’s background in biochemistry and the pharmaceutical industry gave her unique insight into her care. “She started charting her tests and data so she could be a part of the solution and have informed discussions with doctors. She wanted details and wanted to know what to expect.”

Mike and Gerri learned that patients and care partners are given overwhelming amounts of information and that they have the responsibility of learning all they can and asking questions and making decisions. He says that doctors aren’t always keeping up with the latest research and that it is easy for them to get stuck in routine treatments. He found that doctors talk about options based on their experience and their skill set, but that doesn’t mean that approach is best for the patient. He says that being comfortable with the doctor and getting a second opinion if wanted are also important. He and Gerri learned to be active participants in her treatment and care.

In addition, Mike and Gerri were always looking ahead and focusing on the future. He concentrated on keeping her spirits up. When she was bald from chemo Gerri was looking at wigs and Mike says he encouraged her to go wild and get a bright red wig. “She didn’t go for it but being outrageous and adding humor to the moment was a way for me to help,” he says.

It was while she was in her fourth year of remission that Gerri found Patient Empowerment Network (PEN). “Gerri liked PEN’s focus on making the information understandable for patients, giving them easy-to-digest information to make decisions,” says Mike. Gerri jumped right in and helped to develop the Network Manager program which launched in March 2020. The program is made up of volunteers around the country who use their own patient experience to support patients and their care partners through their own cancer journey and on to a path to empowerment. “PEN is very important because it is patient-focused,” Mike says, and that’s why PEN appealed to Gerri. She liked that she could use her scientific background to help patients understand the information and to make sensible decisions for themselves. Gerri served as the AML Network Manager and was named a finalist for the 2020 Reuters Patient Champion Award in the Patient Advocate category.

Then in July 2020, Gerri got her second diagnosis. She celebrated her birthday July 7 and a week later, Gerri was back in the hospital. “This time she had a second type of leukemia which threw doctors for a loop,” says Mike. “Usually when leukemia patients relapse, it’s with the same type of leukemia.”

Although they had been through a leukemia diagnosis before, this experience was nothing like the first. “It was very different. It was during covid so of course, unlike before, when she could have friends drop in, she no longer could have visitors. Everything was more restrictive with covid,” says Mike. “At least I could be there every day.”

This time, Gerri and Mike were not expecting a longer hospital stay. They were expecting outpatient treatment that would be easier, and they were looking forward to time away from the hospital. The first time was so scary, but this time they were experienced, and they knew what to expect, but what they expected is not what happened.

After about a week Gerri got worse. Doctors were trying to figure out what was wrong, but they were unable to save her. Gerri died July 27, 2020. The autopsy revealed she had an antibiotic resistant bacterial infection.

More than a year later, Mike says he’s doing okay. “Everyone handles it differently,” he says. “You have to give yourself permission to not be happy and also give yourself permission to keep going and find other things to fill the hole.” In September 2021, he retired from his career as a web project manager, and recently he reached out to PEN looking for a way to use his skills to help others. “Gerri was the driver, so now I’ve been drifting,” he says. “That’s why I contacted PEN. I wanted to do something of value.”

Mike will be an invaluable addition to the PEN network of volunteers.