Year of diagnosis – 1996

Age diagnosed – 37 

Current Pastime – Founder of the Multiple Myeloma Research Foundation (MMRF) and Co-Chair; Harvard Business School Kraft Precision Medicine Accelerator 

Secret – Embracing every day with family and friends; Continue to push for change and awareness.

MY STORY (excerpts from Kathy’s story posted on her webpage) 

I will never forget the doctor looking at me and saying, “I’m sorry, you have cancer.” And not just any cancer, one of the lousy ones with a weird name and no reliable treatments. Three years to live. Incurable.

It was 1996. I was 37, with a career and a one-year-old. I panicked. I wept. I fumed. When you know you’re going to die, the cruel reality changes everything. The moments I would miss as a mother, wife, sister cascaded before my eyes. But then something snapped. I went from WTF? to WTD? (What To Do?)

The thing about a death sentence is it gives you instant clarity. What matters? What doesn’t? I started to write down what was most important to me: a letter to my young daughter, Nicole, in this ridiculous green journal with a flower on it. Page one: more time, beat the odds, make it to kindergarten. Page two: having a baby, leaving my husband Paul with a second child, Nicole with a sibling. And then … leaving all three of them safe, cared for. That meant moving closer to my sister, a new home, a new job – starting a foundation.

“I wrote a letter to my daughter, in this ridiculous green journal with a flower on it.”

What I didn’t realize at the time is that my personal quest to find a cure – steps I took to protect my husband, my child – would begin a 25-year crusade to disrupt and galvanize a bureaucratic and deeply broken healthcare system, not only changing the course of my life but the lives of so many others facing a fatal diagnosis.

In 1998, I founded the Multiple Myeloma Research Foundation (MMRF). There we were first to establish a collaborative tissue bank, first to sequence the myeloma genome, first to build a clinical network, first to drive data to the public domain, and first to directly share data with patients. Our work has led to 15 new FDA-approved drugs and has increased life expectancy for patients from the three years when I was diagnosed to ten years today.

Then in 2015, I was asked by the Dean of Harvard Business School to Co-chair the Kraft Precision Medicine Accelerator (KPMA) and drive precision medicine across all diseases. We convened more than 300 thinkers, doers, and disruptors on the front lines of business, scientific, and social change to answer one question: how can we bring better treatments to patients faster?

The promise of today’s science to change lives is truly amazing. And nowhere is it more amazing than in cancer: targeted therapies, immunotherapies, blood biopsies. But the hard truth is that the system remains badly broken. And fighting your way through it can be its own kind of death sentence. The greatest fear that lives in the hearts of patients is to know that a new drug out there is working… that a new field could be curative… but they may not live long enough to get it. That is a petrifying kind of terror. But I am living proof that if you take the right steps, you can buy yourself time. And with today’s science, a year can buy you a lifetime.

It’s been more than 20 years since I started writing to Nicole in that pink journal. Today I have over twenty journals, one for every year I never expected to live. And I’m still writing. I didn’t just see my daughter go to kindergarten, I saw her go to college and to graduate school. I didn’t just change careers, I moved closer to my sister, my rock – my biological and soul mate. And my daughter Nicole, my husband Paul and I got to go together to my son David’s soccer games, his baseball games, and his college graduation.

I am incredibly proud of what we all have achieved and am blessed to have a phenomenal, supportive family. But the fight continues. I face my own mortality every day, with every test result, just as every cancer patient does. And I continue to push for change where it’s needed most. To fix what is broken so others may heal. And to simplify the journey for others, so they can heal themselves.

From https://kathygiusti.com/kathys-story/

Year of diagnosis – 1995

Age of Diagnosis – 25

Current pastime – CEO of International Myeloma Foundation (IMF) 

Secret – Staying hopeful for a cure; Paying it forward.

MY STORY  (excerpts taken from various IMF websites)

Diagnosed at a young age of 25 with stage III Myeloma in 1995, I’ve gone from being a patient to a myeloma research advocate.  I’ve been able to successfully integrate Myeloma into my life for almost a quarter of a century. I have been associated with the IMF for over two decades. From joining a support group in the Dallas-Fort Worth area to leading that support group and forming another one in the northwest Arkansas area, to being a board member in 2015, and now, to being chosen as the CEO of the organization. 

My areas of advocacy interest include patient education, clinical trial design, quality of life improvements, drug accessibility, minority engagement, access disparities and global capacity building of patient organizations. 

After the IMF search committee chose me as the new CEO, my initial thoughts, I would say, were humility and gratitude for being alive and for being able to take on this incredible role 25 years after I was diagnosed with myeloma and was given only two to three years to live. Excitement, as this role will bring my passion, purpose, and lifelong experiences and preparation together.

For whatever reason, I have been able to live with myeloma for over half of my life. I have learned to navigate ambiguity and make decisions with sparse data. I have learned to lead with love, kindness, and empathy. I have learned to plan for tomorrow but be agile enough to tackle the unplanned occurrences of our volatile, uncertain, complex, and ambiguous world. But most importantly, I have learned to share the hope abundantly.

Being the CEO of the IMF is a privilege. I don’t see it as an arrival or a destination but as a beginning. It is a beginning to do more, to challenge myself and those around me to go faster. It is an opportunity to pay it forward as I know I’m here because of those who have traveled this past before me. That’s why I want to pay it forward and carry the baton as far and as fast as possible so those who come after me, those who come after us, can go even further. 

IMF’s mission is of improving the quality of life of myeloma patients while working toward prevention.  Making a world without myeloma or a world where no one dies of myeloma by the year 2035. 

From https://www.myeloma.org/imf-ceo-yelak-biru-looking-ahead

Year of diagnosis – 2009

Age of diagnosis – 47

Current Pastime – Board member of the Myeloma Canada & Myeloma Alberta Support Society Group; member of the Myeloma Canada’s Patient Advisory Council 

Secret – Staying positive and look for the good things in my life; Limit time around negativity; focus on the things that make me smile; Paint and cross stitch. 

MY STORY

My journey started in 2005 when I began to experience numbness in my feet which eventually progressed all the way up to my hips. I was referred to a neurologist and had all kinds of tests that included a spinal tap, but everything came back normal except for elevated immunoglobulins. They suspected MS, but nothing conclusive so that’s how they left it.  I began having issues with fatigue and intermittent neuropathy issues continued. After 4 years with no progress and worsening fatigue I finally asked the neurologist to repeat some of the tests and was referred to a hematologist with suspected MGUS. The hematologist did a bone marrow biopsy and it was inconclusive so referred me for a PET scan.  This was done at the cancer clinic and as the hematologist was away, I was referred to a myeloma specialist for the results. 

In September 2009, at the age of 47, I finally got a diagnosis.  In May 2010, I had a stem cell transplant. I was put on Thalidomide maintenance and after 3.5 years I experienced my first relapse when my M protein went up to 2 and was put on Revlimid.  My M protein went to zero very quickly and was stable until 2014. I was having serious bone pain in my right hip, but was told it couldn’t be the myeloma.  I struggled for a year and finally the damage was sufficient enough to show on an xray and I had to have a metal rod put into my femur. In 2016, I began to relapse again and we found a plasmacytoma in my pelvic floor. After radiation (my 5th time having radiation so far) I was put on a regimen of Daratumumab, Pomalyst, and Ninlaro. I’ve had stable disease control since then and have been scaled back to just Daratumumab. 

Except for 2 years I was off work around my stem cell transplant, I’ve been working full time with Servus Credit Union and am currently Team Lead for one of the teams in our Business Lending Support Department.  In these last 12 plus years, I’ve become a mother in law and a Grandma.

I try to stay positive and look for the good things in my life. I also try to limit my time around negativity and focus on the things that make me smile. I paint and cross stitch and find these things relax me and help me tap into my creative side. I look at my infusion dates as my “spa days” where I get to sit and put my feet up. I was supposed to go to Scotland with my Dad in 2020 and now we’re hoping for 2023!

I’ve been involved with the local support group since my diagnosis, was in the PAC, and am currently on the board of Myeloma Canada as well as the Canadian Myeloma Research Group. My mantra is in the absence of a cure, stable disease control with minimal side effects. 

Year of diagnosis – 2009

Age of Diagnosis – 48

Current pastime – substitute teacher

Secret – Staying positive and looking forward; Believe the medication is working; The mind and the body are connected; nourish both of them.

MY STORY

I was diagnosed on December 24, 2009.  I was 48 years old.  Therefore, I have lived with MM for 12 years. I had a sore back was going to the physio twice a week but the back wasn’t getting better.  The physio recommended I get an x-ray of my back and they found lesions.  I was a full-time teacher and took a year off to get a stem cell transplant. I returned to teaching and retired 3 years ago. I have had several lines of treatment.  I had 2 knee replacements as the medications broke down the cartilage in my knees.  I was substitute teaching before COVID and hope to go back to it.

My tips on living with myeloma are enjoy the good days and appreciate your family and friends.  Learn to accept help and when you can help others.  Yes, we have lost things that we will never get back such as our energy but I found looking back doesn’t help the situation

Year of diagnosis – 2012

Age of diagnosis – 49 

Current pastime – Business Consultant; Leader of the Vancouver Myeloma Support Group. 

Secret – Staying positive; Staying busy; Giving back; Always having a good puzzle on the go; Dog walks; Bike rides; Cherishing time with family and friends.

MY STORY

Before being diagnosed September 2012, I had a very full and busy life raising two beautiful girls, Niki age 10 and Margeaux age 12 with my amazing husband Boyd plus working full time.  Although I had been struggling for a couple of years with bone aches and pains I was managing.  My GP, who refused to do a bone density test stating I was too young, wasn’t overly concerned so I persevered just like all working moms do!  It wasn’t until February 2012 when I heard a “pop” and felt intense pain in my right shoulder, after lifting a heavy box, that I started pushing for answers.  I spent the next months consulting doctors, specialists, getting ultra sounds and resorting to acupuncture, dry needling, and physiotherapy to relieve the pain. They all believed it was either a rotator cuff tear or a frozen shoulder.  However, I believed it was more and by August 2012 my body started screaming and I found myself sleeping on thin ice packs to relieve the pain. It was after getting shingles in my right eye and almost passing out from intense pain in my shoulder blade area after sneezing that CT-Scans, MRI and X-Rays were ordered.

Turns out the pressure from the sneeze expanded my shoulder blade to expose a tumor the size of a lime. On the Monday my GP told me (holding a box of Kleenex for herself) I had soft tissue sarcoma, Wednesday she called to said it was second stage cancer but didn’t know what the primary cancer was and by Friday she called saying and I quote “Good news you have myeloma” to which I replied “I have skin cancer?”   Although funny but not funny I do think the way I was told has helped me keep my glass half full because things could always be worse.  What is frustrating is knowing that a simple blood test would have detected my myeloma much sooner.  That’s why these awareness campaigns are so important.

I underwent radiation to deal with 4 tumors prior to my stem cell transplant, which took place in February 2013. Unfortunately, the transplant was unsuccessful.  Against my doctors’ advice, I refused any further treatment for a 1.5 years due to a personal family matter.  However, luck was on my side because in October 2014, I qualified to participate in the Phase III Daratumumab clinical trial which I believe saved my life.  My body responded extremely well to the Daratumumab, Revlimid and Dexamethasone treatment, and I continue to this day to receive this treatment with successful results.   

This bravado would not be possible without my rock and best friend beside me, my husband of 24 years who has been there through it all.  I’m also blessed to have two amazing daughters who champion me through my tough days.  They are my biggest fans.  I’m also surrounded by 4 supporting sisters and mother and many loving friends.  No “Debbie Downers” in this group.  For now, you’ll find me biking along Spanish Banks, walking Bowie our labradoodle in Kitsilano or golfing. As my tattoo says “It’s all good.”

Year of diagnosis – 2012

Age of diagnosis – 58 

Current pastime – Retired but busier than ever and enjoying life 

Secret – Keeping well informed through a number of organizations including Myeloma Canada; Be your own advocate; Enjoy your family and friends; Drink water & exercise every day; I believe in the power of food and exercise.

MY STORY

Shortly after I retired in 2011 after a long rewarding career as Human Resources Manager for TD Bank I met with my family doctor and told him that despite his assurances and all test results, my instincts told me that something was not quite right.

My pre-diagnosis symptoms were fatigue and multiple infections such as colds and flus (even got a mild case of H1N1), and eye infections with pus literally pouring out of my eyes. Although he didn’t think there were any issues he agreed to refer me to a hematologist, though I did not see him until a few months later.  The general hematologist/oncologist also thought nothing was wrong based on my past blood tests. But after years of being so active biking and hiking and having a strong woman’s intuition I knew I should listen to my body.  As a precaution, the hematologist ordered more detailed testing, which revealed the telltale M -protein spike. In June 2012, I was diagnosed with indolent smoldering myeloma.

For four years we monitored my myeloma as my m-spike continued to climb. Eventually, after chemotherapy therapy, I had a stem cell transplant in October 2016.  With more than four years between my diagnosis and my transplant, I had time to prepare. I decided to approach my stem cell transplant like a work project.  I wanted and knew I needed to be prepared both physically and mentally in order to get through it, and to give myself the best chance for a full recovery. I knew that it would be important to continue to eat three times a day even if I didn’t feel like it, and to drink lots of fluids. I would have to walk every day. I would have motivating notes all over my home to remind me of those things.  Because I had difficulty concentrating those first few weeks, I discovered Netflix; it got me through those first few weeks of my recovery.

The transplant went well. I recovered quickly, with a better than 93% response. Six months later, it was time to decide on some type of maintenance treatment.  For me, I need to be a student of my disease so that I am able to make informed decisions in collaboration with my wonderful medical team. I did my own research to educate myself on my options, based on my own medical history of previous cancers and my desire to continue my active life.

I expressed my concerns to my specialist. She advised that a good choice for me would be Ninlaro (Ixazomid).  I think it’s important to mention that it isn’t always easy.  When I was diagnosed, I’d heard of myeloma, but only as some type of blood cancer. I didn’t have a clear idea about the disease. 

I am incredibly grateful that for me, living well and living well with Myeloma are virtually one-and-the-same.  I take very few supplements because of my current regimen of Daratumumab, Dexamethasone and Revlimid which I have been on since September 2019.To me, living well means having meaningful relationships with friends and family. It means being physically and psychologically fit, so as to keep on doing what I love to do.  That includes working out with a personal trainer twice a week. Keeping fit has been a big part of my being able to live well with myeloma, and feel that I have some control over this disease.

My father was my role model for living a happy life. He had Chronic Lymphocytic Leukemia (CLL) and lived a full life for almost 14 years after his diagnosis. He was a true inspiration to me and our family. And he remains a real hero of mine as I live with my own disease.  There are so many people I am thankful for, but it is my husband Bill, who has been by my side, 24/7, every step of the way. I could not have done it without him.  Just as it hasn’t always been easy for me, it also has not always been easy for him. But we share the same optimism going forward on our journey.  I hiked up mountains for so many years before my myeloma diagnosis, and I still hike up mountains now.

Living with Solitary Plasmacytoma of the Bone

Year of diagnosis – 2016

Age diagnosed – 58 

Current Pastime – Living the dream life in an oceanside paradise with the luxury of good health and time to enjoy family, friends, nature, and activities. 

Secret – Lots of gratitude. Wonderful loving & supportive husband, sons, family & golden retriever who make me smile everyday. Positivity and knowledge.

MY STORY

Pre-diagnosis, I was enjoying activities, running a business, and travelling, but I also struggled with recurring lower back and leg pain for a couple of years. Initially, the pain was attributed to a previous cycling accident, and multiple x-rays did not reveal any issues. However, as the pain increased, I pushed my GP for an MRI and was put on a waitlist. Several months later, I still had not received an MRI. Eventually, I was unable to bear weight on my right leg and needed crutches to get around, at which point I arranged for a private MRI that identified a large 11cm lesion on the right iliac bone of the pelvis. Unfortunately, the 1st MRI did not provide enough detail for a referral, and another MRI was requisitioned. After 10 stressful days waiting for an MRI, I finally paid for a 2nd private MRI.

I was referred to the local cancer clinic, and assessed by an orthopedic oncologist, who told us the terrifying news that I probably had osteosarcoma, which would require amputation from the hip down. The next 3 months was the most difficult period of my journey, filled with a barrage of tests, exams, images, biopsies, uncertainty, and fear, while waiting for a diagnosis.

Finally, we met with the orthopedic oncologist who delivered the diagnosis by saying “good news (long pause), you have lymphoma”. I was expecting the good news, and was stunned by his words, particularly since my father had died of lymphoma at the age of 48. At the time it was of course shocking and frightening. Over time, I was able to appreciate that a diagnosis of lymphoma was better than a diagnosis of osteosarcoma, but it was extremely difficult to experience such insensitivity at that very stressful time.

Fortunately, I was then referred to a wonderfully warm BC Cancer hematologist, who determined the correct diagnosis was actually solitary plasmacytoma of the bone, which is often a pre-cursor to myeloma. I was treated with 25 sessions of radiation over a five-week period. In the months following treatment, my pain and inability to walk increased, but blood tests slowly began to show that cancer markers (M-protein & IgG Lamda light chains) were decreasing.

Thankfully, seven months post-treatment I achieved a complete response. And a few months later, I was accepted at G.F. Strong Rehabilitation Hospital as an out-patient for six months of rehab treatment. Thanks to an amazing team of physiotherapists and a lot of hard work, I recovered full mobility a year later.

I have just celebrated my 5 year anniversary in full remission, and I am thankful every day to be healthy and strong without any physical disability. I continue to be monitored regularly with semi-annual blood tests, annual CT scans, and bone strengthening medication.

Solitary plasmacytoma is a rare disease and there is very little information or support for solitary plasmacytoma patients. At the time of diagnosis, I felt very alone and frustrated by the lack of information and support for solitary plasmacytoma patients. Eventually my quest for knowledge led me to a Myeloma Canada national conference, which opened a door to the information and support I needed to understand my disease and my future. It was also an eye opener for me, as everyone I encountered at the event appeared healthy and living well with myeloma. I seemed to be the only one who had a visible disability. The event filled me with hope, knowledge and optimism.

In 2019, I was asked by Myeloma Canada to establish a myeloma support group in Vancouver.  I am so fortunate to have met so many wonderful people through my association with Myeloma Canada and the Vancouver Myeloma Support group, who have taught me so much, and given me strength, hope, help, and friendship.

I believe that increasing awareness, advocacy, early detection, education, research and compassion will continue to improve the lives of all patients diagnosed with myeloma and solitary plasmacytoma.

 Watch additional ‘hero’ stories of myeloma survivors via the Myeloma Canada website.