my “special” cancer

the thing about myeloma is that everyone’s disease is different. when people tell me things like. oh i know someone who had myeloma! he lived 15 years! i usually ask what his specific disease was, also what his quality of life was and how many years was he in treatment.

every person with myeloma has a different signature of the disease and each signature responds differently to different treatments. the signature also determines how quickly a person will relapse and what their overall survival is.  this signature can actually change, becoming a more aggressive disease as the result of treatment.

every patient relapses in myeloma, because remission doesn’t mean all the myeloma cells are gone, it means most are gone. the question is how long between relapses or Progression Free Survival. everyone is different, depending on their disease or treatment. but living from relapse to relapse is challenging for everyone.

if you are unaware of these specifics you might not understand why some people do so well and others don’t. you might think it’s random or related to something else. it actually isn’t. it’s pretty calculable.

my disease is IGA Kappa. that is considered more high risk than IGG or IGM for some reason. it usually implicates the kidneys.

there are also genetic expressions that determine your response to treatment. some people response to the standard of care treatment which, while severe and disabling, will give them many years before progression. i have a genetic marker called 1q21 gain and 1p deletion. in human terms, this means that i don’t respond to chemo and a stem cell transplant may cut my overall survival in half.

for this reason, i chose a clinical trial that doesn’t have chemo or stem cell transplant involved.  the drug is new and currently only 30% of people are responding, but if it works, then it works! so it’s worth it!




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