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What is Renal Medullary Carcinoma (RMC)?
Renal medullary carcinoma (RMC) is an extremely rare and aggressive type of kidney cancer that is most often found in young African-American males with sickle cell trait. Because of its aggressive nature, RMC is typically diagnosed when the disease has metastasized, bringing a poor prognosis that is almost uniformly fatal. While initial treatment involves removal of the affected kidney, beyond this there is no established conventional treatment due to RMC’s resistance to chemotherapy and the absence of other possible experimental therapies.
What is OUR challenge?
KK and her team face a unique challenge:
RMC is a very rare type of kidney cancer.
RMC is very rarely diagnosed in Caucasians.
RMC almost always coincides with Sickle Cell Trait - a trait which KK does not possess.
RMC is rarely diagnosed in women.
RMC is rarely found at a non-metastatic stage as it was in KK’s case.
RMC shows resistance to conventional chemotherapy.
It is possible that KK’s situation has not been specifically described in literature before, simply because RMC is typically reported within the context of conventional chemotherapy. The unprecedented nature of KK's case calls for a therapy that is experimental within the context of RMC, and would require a highly individualized approach, for which special FDA approval is typically arranged by the treating physician. The new paradigm of "personalized medicine" in modern-day medicine is acutely relevant in KK's case, and success for KK could translate in benefit for many other patients affected by a rare disease. A concurrent challenge is that KK is faced with finding a targeted treatment utilizing resources that generally fall outside insurance coverage.
What is OUR goal?
For KK and her team, the goals are:
Find a CURE for KK: We have a unique opportunity to achieve a CURE for KK right now through pioneering within the territory of modern-day individualized medicine. We are pioneering because KK’s case likely does not exist in any previous literature.
Find a CURE for Others: KK and her team hope that this journey will help provide a cure for many patients (whether RMC or other cancer types) who too could benefit from a treatment strategy that caters specifically to the patient, rather than the generalized population. Her case could demonstrate the direct and relevant correlation between molecular diagnostics and patient-specific treatment therapies.
Give HOPE to KK and Others: KK wishes that her experience will provide hope to other RMC patients too, while also prompting the medical community to challenge the conventional approach taken with this rare and aggressive cancer. KK is determined to use her journey to help find and establish an affordable manner for patients to access “individualized medicine" so that each specific individual is given the best chance to FIGHT to WIN.