Surviving Rare Cancer: Journey through Diagnosis, Delays, and Determination

Can you tell us a little about yourself?

In May 2018, I moved to Edmonton from India with my husband – hoping for a new career, a new life and to start a family. Things were all right at first. Everything was going smoothly; I was living my normal life, but life had different plans. 

I was diagnosed with stage IV Subcutaneous Panniculitis T-cell Lymphoma (an aggressive type of rare blood cancer with only 150 cases reported worldwide) and top of it complicated with HLH in August 2019 at the age of 32. 

August 28^th, 2019 is when my life flipped upside down completely. This date and devastating news are seared into my memory forever. It was completely unexpected & and the most difficult challenge I had to face in my 30’s.

When did you initially notice something was wrong? What symptoms did you experience?

In May 2019, I began experiencing high fevers with no other symptoms. Weeks passed and I found myself in the emergency room numerous times. I was told that it was just a normal viral fever and took Tylenol to relieve it. 

I was having high fevers ranging (38’C-40’C) which lasted for almost three months. Later I started having rigor episodes daily, with mouth ulcers and my body stared swelling up. I was in hospital for almost two months for extensive testing.

The diagnosis took almost three months involving endless blood tests, scans, surgeries, and biopsies. Much of my cancer experience was marked by delays – delays in receiving a diagnosis, being young not been taken seriously.

What is HLH? Did you know about HLH prior?

Hemophagocytic lymph histiocytosis (HLH) is a life threatingening, hyper-inflammatory disorder. The diease is characterized by dysregulated immune activity resulting in malignant inflammation and multi-organ failure.  

It was diagnosed along with my cancer diagnosis. 

As you were diagnosed with Stage IV HLH, how did this impact your treatment options?

As my diagnosis was rare and complicated, I was given aggressive chemotherapy. They called in medical term – red devil.

The initial plan was to start with six chemotherapy sessions and treatment. Halfway through it was changed.  Some of my cancer cells were not reacting to the chemo done and it didn’t work completely on my body so the only choice I had was to go for Allogeneic Stem Cell Transplantation during COVID-19 pandemic April 2020.

I was immune comprised for long time. Currently I’m NED (no evidence of disease) but go through three months of blood work and yearly PET CT. 

Are there any resources or organizations that have been particularly helpful in supporting you through this journey?

When I was diagnosed, I was not sure who to reach or talk to. Being Asian, it’s difficult to talk about cancer within family. 

I connected with Canadian Cancer Society after my stem cell transplant as I wanted to connect within community to share my experience as I was feeling isolated. 

Since 2021, I have been actively involved as patient advocate with cancer community as it helps me to connect, heal, and share my thoughts and experiences to support other patients. I have been focussing on spreading awareness among young adults dealing with cancer. 

Resources I connected was YACC, Canadian Cancer Society, Elephant Tea magazine, LLSC, Stupid Cancer, Wellspring Alberta, Alberta Cancer foundation/ Own Cancer Campaign and many more.