By Komal on 4th July 2023

Diagnosed with incurable cancer:

I have been diagnosed with incurable cancer, i.e. Waldenstrom macroglobulinemia at the age of 31 in April 2021. This type of cancer is rare and is more common in people over 65. There is no stage for Waldenstrom macroglobulinemia. However I asked my haematologist on my diagnosis day about where would she stage me: stage 4 with B symptoms (fever, night sweats, itching and weight loss symptoms) and bulky disease, as lymphoma were significantly found in my bone marrow, multiple, big lymph nodes were found in my abdominal area and with enlarged spleen (31 cm). They suspected that I was transformed to high grade (aggressive cells).

I was given 6 cycles of R-CHOP chemotherapy (May 2021-September 2021).

To be honest I never knew in a million years that I would be diagnosed with Lymphoma. This had taken months to accept the diagnosis.

I was traumatised by the chemotherapy as it was intense and treated my high-grade lymphoma. I found it hard at first and wanted to give up but with support of my family and friends I overcame my fears and managed to complete my chemotherapy. 

However the chemotherapy had given a mixed response, with a partial remission. I have been given heart breaking news that I can never be in remission (free from cancer) from this disease during my 6th cycle of chemotherapy. It was hard to swallow the news but eventually it took me a while to accept it. Accepting things and hoping is a way for me to keep on going in life with this cancer.

Komal's rare cancer story

Hoping to find a cure

After completion of chemotherapy, I have been on active monitoring, with regular check-ups.

I found Rarecan on social media and instantly clicked with me that they support people with rare cancers to have better and longer lives. Rarecan can bring people with rare cancers, researchers and drug developers together. Rarecan values by empowering their members they can increase their chances of survival. It helps me to feel that I am not alone with rare cancer but others are also with rare cancer. Rarecan can be trusted and is confidential.