City: Seffner, FL
Occupation: Stage IV melanoma warrior
Progression and Dates:
March, 2007: My toenail presented with indications showing a fungal like condition on the right great toe, routine medications would not clear it up so off to the doctor I went. First physician was a dermatologist and he could not diagnose so after 3 months of treatments, he recommended a podiatrist. Contacted podiatrist with concerns, he tried multiple attempts to cure and could not properly diagnose after 4 months. He recommended a third physician. This guy was an infectious disease control specialist who administer antibiotics intravenous to cure condition and after 3 more long months, surgically losing the nail, many soakings, biopsies, antibiotics, and discussions with the podiatrist, we asked a forth doctor, an orthopedic surgeon, to look into the toe to determine problem.
August, 2007: In August of 2007 I had an immediate diagnosis of skin cancer (melanoma) and the orthopedic surgeon that found the cancer in my toe recommended Moffitt Cancer center for review and proper treatment. The first three doctors totally missed what we now know are routine cancer makers on the skin. They all treated the condition as a staph infection that would not go away. Moffitt at this time recommended that the appropriate treatment is amputation and testing for any metastatic progression of disease.
September, 2007: I went for a second opinion and selected University of Florida for the surgery and then found disease in the right groin and removed lymph nodes as well as amputated the great right toe, was (stage III) and now NED. I now have lymphedema which is a major ongoing medical problem. Only treatment recommended at that time for adjuvant therapy was interferon and after much revue and many inputs, decided not to take that path. We wanted to be eligible and healthy for a clinical trial if needed down the road and at that time the chemo would typically make you ineligible.
November, 2007: Found success with a treatment at Ohio State with a drug called leukine in November of 2007. I was told it was a 2 year protocol and followed this protocol for 12 months and remained NED. Oncologist suddenly announced she would not go beyond 12 months with leukine.
November, 2008: I was removed from the treatment in November of 2008 still NED.
March, 2009: Disease came back in both lungs and now officially (stage IV) three months after the sudden and abrupt end of leukine.
May, 2009: Continuous monitoring of internet, melanoma web sites, etc. showed IPI was showing promise with mild side effect and there was a trial at Moffitt Cancer center here in Tampa. So in May of 2009 started the trial with a combo of Ipilimumab, Taxol, and Carboplatin and this had success for 7 months. This treatment left me with no pituitary gland function and I have to use several prescriptions daily to cover the non functioning gland.
November, 2009: Disease started to grow and I was removed from the trial. Next would be Bio Chemo.
January, 2010: I started bio-chemo and could only tolerate 5 days and then spent 2 weeks in ICU trying to recover. The following scans showed no improvement. The recommendation by Moffitt was to go to MD Anderson since they had nothing else for me and from our internet research we knew that the new inhibitors we were reading about were under trial there. Biopsy showed B-RAF negative mutation and eliminated some of what was available.
February, 2010: At interview with MD Anderson they gave list of available trials and we wanted the GSK MEK trial that they said was closed. Insisted on talking to the trial co-coordinator to get on a waiting list and found it was only on hold and could I could get onto list and start very soon. Started GSK MEK inhibitor in Feb of 2010, visited MDA every 28 days and during first few months showed a 30% reduction in tumor sites. I have continued monthly visits to MDA throughout the year with continued stable state and minimal side effects except for rash. I am 11 months out on GSK MEK inhibitor and continued to be in stable state with some changes in the area adjacent to the right kidney.
January, 2011: Will be returning to MD Anderson on February, 1st for full check up and scans as well as a biopsy of the area of concern in the lung that is pressing on the kidney.
January, 2011: All I can say is I live one day at a time.
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