The not so clinical trial…
So after spending months of surgeries and being Don Quixote with my insurance I won’t be going thru treatment. Needless to say I have mixed emotions about this. But first the reasons why. So I did all the preliminary work, multiple lab tests ( 30 vials of blood btw) and CT’s/MRI’s to see if I qualify. Apparently I was disqualified because of a preexisting condition that I have. It’s call Sarcoidosis. Here’s the Wikipedia definition
Sarcoidosis (from sarc meaning flesh, -oid, like, and -osis, diseased or abnormal condition), also called sarcoid, Besnier-Boeck disease or Besnier-Boeck-Schaumann disease, is a disease in which abnormal collections of chronic inflammatory cells (granulomas) form as nodules in multiple organs.[1] The cause of sarcoidosis is unknown. Granulomas most often appear in the lungs or the lymph nodes, but virtually any organ can be affected. Normally the onset is gradual. Sarcoidosis may be asymptomatic or chronic. It commonly improves or clears up spontaneously. More than 2/3 of people with lung sarcoidosis have no symptoms after 9 years. About 50% have relapses. About 10% develop serious disability. Lung scarring or infection may lead to respiratory failure and death.[1] Chronic patients may deal with waxing and waning symptoms over many years.[2]
I was told I had this a few years ago after it was discovered during a routine physical that included a Calcium score CT scan for work. After repeated CT scans, a bronchoscopy with needle biopsy doctors diagnosed sarcoidosis and told me I was asymptomatic. I’ve spent the last 2 years monitoring it with a pulmonologist. It was determined late this summer that the nodules and lymphoedema were stable and would only require occasional monitoring. That’s when melanoma stepped thru the door.
My Oncologists stated that he was trying to get me into the study so I could possible take a newer drug that did not appear to have issues with sarcoidosis. The problem is that it eliminated me from the trial. That leaves the standard drug therapy Interferon. PROBLEM!!!! Apparently Interferon can cause Sarcoidosis to become active and inflammatory, sometimes with fatal results. In most cases the symptoms partial resolve themselves when treatment is stopped. This presented multiple problems. The likelihood of being on Interferon long enough to benefit is extremely unlikely and the possible side effects greatly out way the benefits. Basically I am asymptomatic on both disease fronts and it would be best to remain that way. The hope is that the surgeries did their job and all the cancer is gone. The purpose of the treatments were to give me the absolute best possibility. So for now I have returned to the semiannual exams by the oncologist and dermatologists.
Talk about a mixed bag of worms…..time to go fishing!! I am glad that I no longer have to fear what the next year held for me and my family. I’m healthy and will try to stay that way. Thanks.
