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Every Myelofibrosis Journey Is Different

Every Myelofibrosis Journey Is Different
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Published on December 23, 2019

I’ve had secondary myelofibrosis (MF) now for 11 years after being diagnosed with essential thrombocythemia (ET) the year before. (You can find my prior blog here: Getting a Myelofibrosis Diagnosis in My 40s. When I was diagnosed with MF, I wanted to meet people with the disease to tell me first-hand what it’s like to have it. I wanted to understand what MF might mean for my life and my future, how I might feel, and what was it like being on the treatments available at the time. There was limited information on MF, and because it’s a rare disease, finding other patients was not easy. Before having ET then MF I was healthy and active and so I wanted help figuring out how to live life with a chronic, progressive blood cancer.

Finding others with MF

mpn ribbonIn 2011, I discovered a myelofibrosis Facebook group where I finally had a place to connect with others with MF. It was reassuring and eye opening to be able to hear what others were facing, to know I wasn’t crazy, and I had symptoms others had too. It helped to know what other people with MF struggled with or worried about. People would write comments like – I  have a lot of  bone pain. Does anyone in this group experience this? Has anyone taken X treatment and how was it? I’m exhausted after work each day and go home to bed. I don’t know how I’m going to keep working etc. When I started feeling sicker and more deeply fatigued and was hospitalized for acute episodes of illness, I switched to part-time work. And since then I have further reduced my workload to freelance, project-based work I can do from my home desk and rest as needed. Some months I don’t work at all. (Thanks to my amazing hard-working husband and his health insurance coverage, I know I am lucky to have this choice.) As my life has evolved less around work and interacting with colleagues and my children have moved on and out, I’ve also began to feel more isolated.  I continue to be active on social media and attend patient conferences to learn from MPN experts and patients and caregivers.

Meeting Laura on Facebook

It was in the MF Facebook group, where I met Laura DeRose and we bonded online beyond MF. Laura has primary myelofibrosis and lives in New Jersey as I do (although at different ends of the state). We are close in age, have both worked in healthcare, and share some common life experiences. We started to email each other and then periodically visited with each other on FaceTime. It took a while to actually meet in person after many reschedules for one of us not feeling well, but we finally met for lunch in 2018.  Anyone sitting near us at that diner, would have overheard a strange conversation in which we recited our symptom lists (I have this, do you have that?) and illness timelines.

A different path for each of us

I recently chatted with Laura via FaceTime and asked her if I could share her story.  I wanted to include Laura’s story here not only because she’s a kind, caring person who inspires me to keep living life in spite of the challenges of MF, but also because her MF journey is an example of the varied path this disease can take. One of the curious and frustrating aspects of MF is its "heterogenous" course as described by MPN experts[1]. Each of us is affected so differently and survival can vary greatly.  Some with MF progress quickly or move forward with a stem cell transplant (SCT) soon after diagnosis or suffer severe complications, and others have more stable disease for years or a slower path.

I know I have been incredibly fortunate to be 11 years from diagnosis and to not have experienced signs of progression or more serious complications of MF. I hope that sharing my MF path with others can provide some hope about their MF journey (And I have the high-risk ASXL1 mutation).

Laura’s MF diagnosis experience

MPN friendsLaura’s MF journey is like roller coaster ride except you don’t want to get back on. Laura now suspects that several factors may have contributed to her developing MF. She had chemotherapy and radiation treatment for cancer when in her mid-20s, had been a smoker, and her mother while pregnant with her, was exposed to the chemical benzene on a military base. Laura was diagnosed with MF on the day of her 49th birthday and told she had a 3-to-5-year life-expectancy with an illness she had never heard of. It is a day seared in Laura’s memory so much so, she can remember what she was wearing. Laura became so deeply fatigued from MF she could barely walk a block. Up to that point she had enjoying riding her bicycle about 20 miles a week.

Yet in the weeks after her MF diagnosis she felt "drunk" from fatigue. All Laura wanted to do was sleep. Her brain fog was so severe and her blood pressure so low that on her way for a follow-up appointment with her physician her car was broadsided by a bus outside the medical center. Her doctor came out to the street to assist with the emergency that turned out to be the patient he was waiting to see. Laura says that day was a “wake-up call to make changes”. Laura and her husband decided to move from Ohio to Hawaii for a better quality of life. Once settled in Hawaii and after a 3-month rest and feeling better, Laura got a new job as Director of Life Enrichment and Volunteer Services in a nursing home. Yet Laura found the more she took on at work “the worse she felt” and lots of coffee didn’t reduce the need for a nap every few hours. Laura had a large spleen at the time and her blood counts were ‘awful’. She was evaluated for a transplant, but because of prior chemotherapy and radiation treatment for a prior cancer, the survival rate was deemed too low.  Laura had started to lose hope for her future, until ruxolitinib (Jakafi) became available. Laura was started on it in shortly after approval. Laura has also been living with a chronic autoimmune disease called scleroderma which she says causes a range of strange “fruit loop” symptoms. Laura eventually took a leave of absence from work at the nursing home, and ultimately resigned from the job she loved. She knew she could no longer keep up with the demands of full-time work. Laura reluctantly gave in to reality of the long-term impact of MF and applied for Social Security disability income (SSDI). After 18 months, she finally was approved for benefits.

Laura’s life with MF today

It wasn’t until I interviewed Laura for this blog, that I learned how much she manages to do with her life in spite of MF pain and fatigue.

Laura’s shared some of her strategies for living with MF. They include:

  • Take daily naps; otherwise she’s in bed by 6 pm
  • Walk with her local group of Hiker Babes when she feels up to it as it helps her feel normal
  • Take hemp products for pain control
  • Try to live each day as much as possible
  • Spend time with her husband, 2 adult children and 6 grandchildren (from 2 to 20 years old)

Laura acknowledges she still finds it hard not working, but she fills her days with a range of creative activities including with her grandchildren and local children. Like her personality, Laura’s home art studio is a bright, cheerful place where she gives Saturday painting lessons to children in her town. Laura is also a dedicated volunteer for The Leukemia & Lymphoma Society (LLS) and for 3 months each year she volunteers once a week at a retail store in the South Philadelphia area raising funds and awareness of MPNs and other blood cancers.  Laura finds it rewarding teaching store staff about blood cancers and handing out educational information. She believes sharing her blood cancer story and getting to meet an actual person with a blood cancer helps motivates store staff. Her efforts have helped the store raise $10,000 for LLS, up from $1,200 the prior year!

Laura, her husband, Ron, her daughter, Jennifer and Jennifer’s husband and children (her son, Shawn lives in Arizona) also walk in LLS’s Light the Night each October as a family team. Laura feels lucky to have her family by her side. This year Laura made shirts for the family team with the help of her 8-year old granddaughter, Penelope. I would say the shirt captures Laura’s can-do spirit: This Girl Won’t Stop! Amen to that!

What’s Next for Laura…

None of us with MF knows what’s next. It’s a tricky balance trying to be hopeful and positive while also remembering our disease can change at any time. Laura is about to start treatment with fedratinib (Inrebic), the newest and only second medicine to be approved by the FDA for MF. After 11 years of living with primary myelofibrosis, Laura says she feels fortunate. She’s turning 60 this January and for her birthday, she and her husband are headed to Key West, Florida; she may try parasailing!!!!

The Value of Staying Connected

MPN mottoLaura and I have tentative plans to meet in person again before the end of the year. I will combine the 180-mile round trip medical marijuana dispensary visit with another lunch date with Laura in South Jersey. Knowing I will see Laura makes the drive feel worth the road trip.

When we’re together, Laura and I can talk about topics we can’t always meaningfully share with those closest to us. We value that the other knows what it’s actually like to have a certain symptom or understands the conflicting feeling of being thankful for the lives we have, yet also regret not being able to be more active or devote ourselves to a full-time profession. Our conversations can weave back and forth from family, travel, books etc. to issues specific to having MF. I’m not glad that I have MF, but I am glad to have met Laura.

-Julia Olff

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

[1] https://www.ajmc.com/insights/myelofibrosis-emerging-agents/prognosis-and-risk-stratification-of-myelofibrosis

 

Featuring

All I can say is wow. This is completely fantastic. I am newly MF dx and live in France and am frustrated with language barriers. The information I receive via Patient Power and from this town meeting is priceless.

— Jane , online attendee of Stanford MPN meeting

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