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October 1, 2019

TOPIC: Featured News, Patients & Members, Patient Stories

Voices of Rare Cancer: Brian’s Story

Posted at October 10, 2019 02:47 pm by Valaree DonFrancesco

WHAM! The news I received from my doctor was a left hook to my temple thrown by Muhammad Ali. I was just told that I had myelodysplastic syndromes (MDS). My name is Brian. It was December 2016 and my doctor at Moffitt Cancer Center in Tampa Florida, Dr. David Sallman, sat me down to explain the ins and outs… Read More

October 1, 2019

TOPIC: Featured News, Patients & Members, Patient Stories

Voices of Rare Cancer: Susan’s Story

Posted at October 10, 2019 01:49 pm by Valaree DonFrancesco

Hi! I’m Susan from Philadephia. My journey began in 1991 when I visited a local dermatologist for a strange rash that didn’t go away. That day changed my life. A biopsy was taken and I was told I had a rare form of lymphoma called cutaneous T-cell, mycosis fungoides.

CTCL/MF is a rare blood cancer that manifests in the skin…. Read More

October 1, 2019

TOPIC: Featured News, Patients & Members, Patient Stories

Voices of Rare Cancer: McKinnon’s Story

Posted at October 10, 2019 11:32 am by Valaree DonFrancesco

This is my story about NF2. This journey began when I was 16 and got hit in the head from a volleyball. I went into a routine MRI and came out with brain and spinal tumors, which lead the doctors at the time to conclude that I would be deaf by the time I graduated high school.

My experience with… Read More

October 1, 2019

TOPIC: Featured News, Patients & Members, Patient Stories, Voices of Rare Cancer 2020

Voices of Rare Cancer: Lauren’s Story

Posted at October 10, 2019 10:34 am by Valaree DonFrancesco

My name is Lauren, I’m 23 years old and I live in Boston, MA. Two years ago, before my senior year at college, I was given the news that nobody ever wants to hear: I was told that I had a rare form of appendix cancer. Cancers and tumors of the appendix are extremely rare, once thought to be… Read More