Hello and thanks so much for your interest and inquiry. I have indeed lost lean body mass. I went from 130 pounds to 90 pounds in an incredibly short period of time. My Care Team had determined I was suffering from cachexia because I lost over 40% of my weight over 3 months. That set me on a journey of a myriad of testing, which showed I lost not only regular fat, but “brown” fat as well. My bones became incredibly brittle and despite all attempts to address the issue nutritionally, I continued to decline. Multiple imaging studies showed that my muscles were also severely atrophied. I remained unable to gain weight regardless of any diet or feeding attempts I tried. It’s an extremely dire situation because cachexia is poorly understood and to date there is no viable treatment. I have progressed to the point where my heart (which is a muscle) has been affected.

Because they believe I am cancer free now they cannot determine the etiology. It is assumed that it is a long term effect of the chemotherapy and radiation therapy I underwent.

I have spent over 5 years battling this wasting syndrome yet none of the best specialists in the country can come up with a treatment plan.

No matter how much I eat it is a constant battle to maintain weight. No physical therapy has helped me regain strength or rebuild lost muscles. I am literally “skin and bones”, and ironically those bones are crumbling apart. I have numerous spinal issues, constant stress fractures in my feet and am so weak I sustain injured muscles just from moving the blankets on my bed.

Another distinguishing feature of this disease is temporal wasting. I truly look like a starved and emaciated person.