Spotlight on Lilowtie Ramdass:

Through the eyes a daughter and caregiver with personal and professional experience with multiple myeloma

February 2024

Mom’s 60^th Celebrations, 2020

When immigrating to Canada in December 2007, my mother

Lilowtie Ramdass’s arm suddenly broke while packing the suitcases.

We managed to get her arm casted so that she could get on the flight with some degree of comfort.

We hail from Guyana, South America and at this point, mom had spent her entire lifetime working on the immigration application to Canada for a better life and long-term conditions of her 6 daughters.

In Guyana, mom worked as a housewife and a businesswoman for her husband’s mining company.

Her health started to deteriorate in her late 30s and into her 40s when she had excruciating bone pains primarily in her back region.

Seeking medical treatment in Guyana became expensive and offered no real-life solution to her pains, so she continued to use high-grade pain medications to help her go on with daily living and activities.

Nanda and mom - second pregnancy 1980s

(Neela in the making).

Our entrance into Canada in 2007 was greeted with a major snowstorm. To make it even more welcoming, mom was diagnosed with multiple myeloma (MM). After arriving at Toronto’s Pearson Airport with a pathological fracture in her right humerus (which subsequently fractured again in 2015 when mom relapsed), mom was taken to the Brampton Civic Hospital.

That’s where and when she received her myeloma diagnosis.

As a newcomer family to Canada, we had no Ontario Health Insurance Plan (OHIP) coverage so we had to fund the hospital bills privately. You can imagine the stressors that came with a cancer diagnosis, the financial burden of moving to Canada from the warmth of South America, coupled with mountainous hospital bills!

Mom at different points over the years

After experiencing the initial horror of a MM diagnosis, mom’s care was transferred to the Princess Margaret Hospital (PMH) Cancer Center where we became a lifelong patient in the Myeloma Clinic under the diligent care of Dr. Donna Ellen Reece (who has since retired).

In the clinic, words such as M protein, MRN, bone marrow biopsy, apheresis collection, stem cell transplant, and chemo were being discussed with us having no idea what those procedures meant and the impact they’d have on mom’s cancer diagnosis and journey.

Mom's M protein levels were so elevated that she was immediately hospitalized. She spent no time that Christmas with her family and in her new home which she had worked tirelessly all her life to afford.

The significant impact that MM had upfront on mom’s health

and all aspects of her life, including social, was tremendous.

It was an adjustment that no one ever thought our family would have to endure.

A cancer diagnosis that would inevitably change our lives.

We have since learnt that Cancer has its own calendar and will do what it has to do, regardless of how many priorities we have set for our own lives.

Mom’s career as a housewife and businesswoman was impacted as the cancer prevented her from providing the care and nurture she normally would attend and provide to her 6 daughters and husband.

Vacation boss lady cruising in Mexico circa 2017

Mom was very socially connected to her extended family. This suddenly halted due to her undergoing induction chemotherapy, and then a stem cell transplant. During this time, mom had to be in isolation because she was prone to infections such as pneumonia.

At that point in time in 2008, the swiftness with which mom was brought into the clinical standard of care treatment for MM was an initial shock to family members.

Mom underwent several lines of treatment, starting with thalidomide, a stem cell transplant, dexamethasone, Revlimid, a second stem cell transplant, Velcade, cyclophosphamide, pomalidomide, Isatuximab (isa), and then ultimately personalized medicine, where she was enrolled in a clinical trial study of a class of drugs called BiTE [bispecific

T-cell engager] which has her currently in remission.

Mom at different points over the years

Mom has experienced and endured 3 relapses

in a period of 16 years living and battling her MM.

Unfortunately, mom has since been diagnosed with a secondary stage 4 endometrial cancer in October 2023 for which she is undergoing surgery and treatment. Mom continues to be a patient at PMH where she is enrolled, and under the care of oncologists, in the Multiple Myeloma Clinic and the Gynecology Oncology Clinic.

I am Tulsidai (Sandy) Ramdass, mom’s 4^th daughter, and a health care professional by training. In 2018, I decided to apply for the stem cell specialist role within the bone marrow transplant program at PMH.

Little did I know that I was joining the very same lab in which my own mother’s stem cells were collected and stored back in 2008!

I have since had the opportunity and exposure to work with stem cells and leading therapies such as CAR T-cell therapies for other MM patients. When I realized the magnitude and extent of work I had agreed to take on after accepting the job offer, I knew then that it was only faith that had aligned me into this role so explicitly.

I saw it as an opportunity for me to now give back to the hospital for all they have been doing for our family for the last decade.

It is with fervent hope that I can now say I have a unique combination of both personal and professional experience working in the hematology oncology space, specifically with MM. I am now continuing my pursuit of oncology in the pharmaceutical world. I have taken on a new role in biospecimens for oncology clinical trials and will always remain committed to the interest of the patient after having had such intimate involvement in patient care at PMH and in caring for my own mom.

Me and mom at family prayers, vacation, wedding celebrations, one relapse in 2015 (top right hand corner)

with a pathological fracture and chemo.

I signed up to do the Multiple Myeloma March in 2016 and since then, I have remained involved with Myeloma Canada. I recently was a representative at Queens Park to help raise awareness for MM treatment at parliament.

The journey with MM as a patient and a caregiver has been a tremendous one on the patient herself and the extended family.

Celebrating mom’s brother’s 60th birthday in NYC,

Oct. 2023: from left to right, Neela, Sandy, Nanda, Mom, Dad, Navo, Keshini, and Sue.

My mother’s connection with God and her trust in medical and support systems are all contributors to her cancer journey and her successes within her diagnoses.

Mom also has a tremendous

will to live.

She is actively involved in charity and is forming social connections in Guyana to help less fortunate people.

An abridged summary of my mother’s treatment journey so far:

2008 – Dexamethasone induction, cyclophosphamide and G-CSF mobilization and ASCT (autologous stem cell transplant); thalidomide maintenance x 6 months.
Aug. 2012 – first relapse; treated with lenalidomide and dexamethasone.
2013 – second ASCT; lenalidomide maintenance until next progression.
Progression in May 2015 – treated with CyBorD x 6 along with radiotherapy to the right arm and lower back. Bortezomib stopped in December 2015 due to severe painful neuropathy; continuation of cyclophosphamide and dexamethasone.
Progression in 2019 – radiotherapy to a large intertrochanteric femoral lesion in December 2019; pomalidomide and dexamethasone from January 2020; pomalidomide stopped due to rash and facial swelling after just 2-3 doses; continued cyclophosphamide and prednisolone until spring of 2020.
May 8, 2020 – prophylactic left hip arthroplasty for high-risk bone lesion; postoperative infection and antibiotics until end of November 2020.
Sept. 2020 – started Isatuximab but stopped early December due to disease progression. (Dr Reece FOUGHT for us tirelessly).
Jan. 1, 2021, completed Sept. 31, 2021 – clinical trial GO39775 of the BFCR4350A monoclonal antibody; option to restart if there is a myeloma recurrence. (Once again, Dr Reece fought tirelessly for us).
Oct. 2023 – diagnosed with stage 4 endometrial cancer.

And many other co-morbidities along the way including diabetes, complications due to multiple infections, osteoarthritis, pneumonia, neuropathy, allergic reactions to medications, COVID-19, hyperlipidemia, anemia, and a history of fatty liver.

There is no question that mom is a fighter.

She’s positive, strong and a source of inspiration

as she helps others!

Most recently even doctors have echoed that mom is a medical miracle and that she is an impressive patient given the complex medical history she’s managed to develop over the decade.

A closing word from my mom:

“It is most noteworthy to mention the famous Dr. Donna Ellen Reece. This article would be incomplete without giving ode and tribute to the matriarch of the MM community. To Dr. Donna Reece, you gave me years in my life I didn’t think were possible. We miss your grit and reverence to fight within the system for your patient population. For that I will be eternally grateful.

For those of you who are reading my story in real time, yes this is a real-life story. I want you to know that I know what you’re going through is hardest right now but let me be your frame of reference…it will get better, for I still have air in me lungs and will in me chest!”

Our very best to YOU all!

Lilowtie and Tulsidai Ramdass

First immediate wedding of the family, October 2022

Editor’s note:

We hope you enjoy meeting our Spotlight Stars and your fellow Myeloma Canada community members. The Spotlight section of Myeloma Matters features stories and reflections supplied by members of our community - those living with myeloma, caregivers, healthcare professional - in their words. The views expressed and shared are those of that individual. We recognize that everyone’s journey and experience with myeloma is different.

To all of you who have shared your stories in the past, and those of you who continue to do so today, we are indebted...you are an inspiration.

If you would like to share your experience in a future issue of Myeloma Matters, please contact us at contact@myeloma.ca.

Myeloma Canada's promise: To improve the lives and empower all Canadians affected by myeloma, accelerate access to the best care, while supporting the pursuit of its cure and prevention.

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