I want to provide an information hub for patients diagnosed with primary plasma cell leukemia (PPCL). I was diagnosed with this rare form of cancer in October, 2015. Long story short, I had an allogeneic stem cell transplant at M. D. Anderson Cancer Center in March, 2016, and lots of side effects and medical adventures. Two years later, I am still in complete remission.
I’m one of the fortunate ones. I don’t know how I got so lucky, but I want to use this good fortune to provide other patients with information.
When I was first diagnosed, I didn’t want to learn much about the disease. In pain, undergoing chemotherapy, I had enough to do just tracking what I was being told day to day. But after a few months, I started a bit of research. Because PPCL is so rare, and so aggressive, it’s understandable that there aren’t large population studies. But it was disappointing that there isn’t much written about the disease.
For now, I’m just going to start a bit of an info dump. I may redirect this to a new site later, but this is the easiest way for me to start.
What are Plasma Cell Neoplasms? (I trust WebMD for providing research-based information in simple terms. I recommend ignoring the ads, though.)
Treatment: 2016 Opinion Statement on Primary Plasma Cell Leukemia
Primary plasma cell leukemia 2.0: advances in biology and clinical management
Research: TCGA Releases The Pan-Cancer Atlas (May 1, 2018)
Researchers continue to study the genetics of cancer: there’s so much work that needs to be done. The above link is a rich resource of information on genetics research. The Cancer Genome Atlas included many different kinds of cancer, but acute myeloid leukemia seems to be the only form of leukemia represented. Hopefully, this project will provide a stronger foundation for future targeted research.
“In April 2018, The Cancer Genome Atlas (TCGA) Research Network marked the end of the TCGA program by publishing the Pan-Cancer Atlas, a collection of cross-cancer analyses delving into overarching themes on cancer, including cell-of-origin patterns, oncogenic processes and signaling pathways. The data remains available to the public for further mining through the Genomic Data Commons.”
Celeste's Blog 