Tag Archive for: MPN patient story

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…

MPN Patient Q&A: How Did You Cope With the Initial Shock of an MPN Diagnosis?

MPN Patient Q&A: How Did You Cope With the Initial Shock of an MPN Diagnosis? from Patient Empowerment Network on Vimeo.

 A myeloproliferative neoplasm (MPN) diagnosis can come as a shock to many. Watch as MPN patient Nona shares her feelings and reaction following her diagnosis, and health advocate Dr. Nicole Rochester explains about finding reliable MPN information.

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Do I Best Communicate My Concerns Without Feeling Dismissed

 


Transcript:

Dr. Nicole Rochester:

I am always talking with people about the importance of using their voice, standing up for themselves and seeking information, and asking questions. So, with that, let’s go ahead and get to our questions, the first question comes from Susan, and Susan asks, “After the initial shock of your diagnosis, were you worried about limited treatment options and specialists, and then what was your next step?”

Nona Baker:

Was I worried? Well, I was just generally anxious, because it’s this thing of not being in control of one’s body and having to surrender that control to another person. So that’s the scary bit for me, and then I did something a little bit stupid in hindsight because it was the early days of the Internet, man, I did Dr. Google, not a good plan, because particularly in the very early days, there was some really, really sort of dreadful prognosis is almost sort of go from right, you will…which, of course, here I am, 30 years on. And so, I think that I would be very cautious even now in using Dr. Google, I would go to safe sites where they are medically monitored, because I think a little knowledge can be very dangerous.

Dr. Nicole Rochester:

That is so true. And I just want to highlight that because in medicine, we often kind of jokingly talk about Dr. Google, but it really is a phenomenon. And while there’s this balance of patients with rare diseases being able to find information and empower themselves, but then as you mentioned, known a lot of the information on the Internet has not been vetted, some of it is not scientifically accurate, and it can literally have you pulling your hair out as you read these accounts and start to really create more worry as opposed to creating action stuff. So, I appreciate you sharing that.  

MPN Patient Shares Advice for Making the Most of Telemedicine Visit

MPN Patient Shares Advice for Making the Most of Telemedicine Visit from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Debbie has had the opportunity to utilize telemedicine in her care. Watch as she shares the pros and cons of telehealth methods in her blood cancer monitoring and her advice to other patients for optimizing virtual visits.

See More From the MPN TelemEDucation Resource Center

Related Resource:


Transcript:

Debbie:

I think there is definitely a place for telemedicine in our care. It has enabled us to, or enable me to keep in touch with my hematologist and to understand where my blood counts currently are. What I would also say is, it’s…that there are positives and negatives. I think that the positive of it is the fact that I’ve got a regular update on what my blood counts actually are. I think the negatives of it can be, is that it is quite easy just to move the conversation quite quickly forward. It’s easier for me to just say, everything’s all okay. Thank you for updating me over the telephone, then it is perhaps if I was actually sat in front of somebody.

I think that the challenges it presents is that personal touch, is that feeling of being able to have a one-to-one relationship with your consultant. I don’t think you have that over the telephone.

So, some of the tips that I would share are that you keep in regular contact with your hematologist, you keep regular information on your blood counts, but you keep in a very, very safe environment. You do keep in a safe environment, and that I think is something that’s enormously important. A tip that I would probably give is that make sure that in between your appointments, you do what you would do regularly on a face-to-face and make notes of the things that you want to talk about…because I quite often put the phone down and think, I wish I had said that when I go to the hospital, I will have my notes in front of me and I put them on the table, and I’ll cross-check them with the hematologist at the time, I tend not to do that on the telephone, and perhaps I should, so I would definitely recommend that you treat the tele appointment exactly the same as you would the hospital appointment.

My Journey of Living With a Myeloproliferative Neoplasm for 30 Years

My Journey of Living With a Myeloproliferative Neoplasm for 30 Years from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Nona was shocked after diagnosis with two MPNs – essential thrombocythemia (ET) and polycythemia vera (PV) – at the age of 41. Watch as she shares her MPN patient journey over 30 years. Nona’s advice to other MPN patients, “Use your voice, you are not alone, make sure you establish a good relationship with your care team. You are truly your own best advocate!”

See More from Best MPN Care No Matter Where You Live

Related Resources:

Expert Advice for Learning About Your MPNs Online

MPN Caregivers: How to Provide Support During Appointments


Transcript:

Nona:

My name is Nona. I live in West Sussex, England. In 1991, I was diagnosed with essential thrombocythemia (ET) and then polycythemia vera (PV) in 1995, both myeloproliferative neoplasms (MPN). This came as a big surprise to myself and my husband. At the time, my care team said there were only 12,000 known patients in the UK living with my condition. At the time of my diagnosis, I was 41 years old, a wife, and a busy mother to three children as well as having a part-time job.

Prior to my diagnosis (with symptoms of painful feet, ulcers on my toes, and chronic tiredness), I was seen by three different clinicians. One doctor told me that my blood work had suggested that I had an alcohol issue and that I was somehow in denial. That really scared me, as I hardly drink alcohol. My research led me to nowhere at the time, as there was very little information about MPNs available. At that point in time, they were called blood disorders. When I read the leaflet with the prescription medication, it referred to treatment for cancer.

I went back to my primary care physician as I really felt very frightened and confused. I learned that MPNs were a proliferation of the blood cells, but not cancer in the conventional sense of the word – in other words, a chronic treatable disorder. Having lived with an MPN for over 30 years hasn’t always been an easy journey. But over the years, a more accurate early diagnosis and treatments have progressed beyond belief, and for that I am grateful. I have never forgotten the difficult feelings of anxiety and fear when I was first diagnosed.

In 2005, I had a second opinion from a respected MPN expert who started a charity, now called MPNvoice. The mission is to provide up-to-date, accurate information to both the medical and patient communities. I have been fully involved with the charity since then and now serve as co-chair reaching out to patients around the world.

My advice to other MPN patients: it’s important to remember everyone’s MPN journey is different and some patients struggle with more symptoms than others. Don’t let your MPN become your life if you can just see it as part of your life so that you can get on and live your life. Use your voice, you are not alone. Make sure you establish a good relationship with your care team. You are truly your own best advocate.

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

My MPN Journey, Getting the Best Care After ET and MF Diagnoses

My MPN Journey, Getting the Best Care After ET and MF Diagnoses from Patient Empowerment Network on Vimeo.

Myelofibrosis and essential thrombocythemia (ET) patient Julia had experience as a health educator and hospital administrator before receiving her MPN diagnosis. Watch as she shares how she later connected the dots from her symptoms and blood work, lessons learned about myelofibrosis patient journeys, and her advice for living well with MPNs.

Related Resources:

Expert Advice for Learning About Your MPNs Online

MPN Caregivers: How to Provide Support During Appointments


Transcript:

Julia:

My name is Julia, I was diagnosed with essential Thrombocythemia in 2007, and then with myelofibrosis a year later, after a routine blood work. The diagnosis came out of nowhere. I was healthy and active prior to my diagnosis and raising five children with my husband. I’ll never forget the day I received a voicemail from my primary care doctor’s office, I really couldn’t believe what I was hearing. I didn’t have time for this illness in my life. I had a bone marrow biopsy that showed I was positive for JAK2 and had a 5q deletion genetic mutation. I started on daily aspirin, and it was a hard pill to swallow for many reasons.

As a certified health educator and former hospital administrator, I understood the importance of treating a rare disease, but I had a difficult time with the idea of taking medicine daily, and I felt like I didn’t have any symptoms. I reviewed my old lab print-outs that showed elevated platelets 15 years before, that slowly increased over time. I recall having severe migraines that would put me out of commission for the day, and tenacious fatigue in the years before, I didn’t connect the dots with the symptoms, and neither did my oncologist. By 2007, my platelets and white blood cells were very high.

I decided to find an expert with extensive experience with ET and MF to get top-notch monitoring and treatment. I connected with a specialist for many years and hope to keep living with my disease for many years ahead. I’ve had several hospitalizations and ER visits over the years, but keep on going. MF has absolutely changed the path of my life and how I live it, but I still do most of what I want to do while I’ve been lucky in maintaining stable myelofibrosis with no true signs of disease progression or serious myelofibrosis complications, it’s important to understand the path for other myelofibrosis patients might be quite different.

My advice for others MPN patients is:

  • Pay attention to how you feel and pace yourself
  • Keep track of your blood counts, so you can alert your care team
  • Find an MPN specialist for your care
  • Don’t forget to be present and spend time with your family.

These actions are key to staying on your path to empowerment