POW

My brother is 65, apparently healthy, never married, no children. He had a suspicious 1 cm x 0.5 cm lesion on his leg for 2 years but refused to have it biopsied several times. Finally, in October 2011 he had a shave biopsy that came back as “melanoma in situ” and a WLE came back clear. No SNL was done and no CT scans. Subsequent events showed that diagnosis to be incorrect.

June 2012. Brother had a mild stroke. Experienced speech aphasia, mental confusion, right hand and leg weakness, extreme fatigue. MRI showed that the stroke was caused by the bleeding from one of several brain mets including 2 that were >2 cm. CT scans showed small mets in lungs, adrenal, and along intestines. High dose steroids to control brain swelling eased stroke-like symptoms. Had emergency WBR with minimal side-effects other than fatigue. Advised that he probably had 3-4 months to live and should contact hospice.

July, 2012. WBR eliminated any chance at clinical trials. Started Zelboraf late July. Minimal side-effects from Z. Z has been shown to reduce tumors in the body in about 50% of patients, but its effect on brain mets is unknown. So we just wait and hope.

September, 2012. New neurological symptoms of confusion, short-term memory loss, some aphasia. Oncologist thought probably due to WBR but we insisted on an MRI. MRI showed stable old brain mets but also two new ones, including 1 larger than 1 cm. Put back on steroids to reduce brain edema. Still on Zelboraf until he gets a CT scan of the rest of his body. New brain mets mean it’s probably not working anywhere, but will only know for sure after CT scans in 3 weeks.

Late September. CT scans show that Zelboraf is working in the rest of his body! Large tumors reduced by 50%, some small tumors gone, no new tumors. Brother says that he is feeling better than he was a month or so ago. Oncologist wondering if the 2 new brain mets got started before he began taking Zelboraf. Decided to continue Z and treat the 2 brain mets with stereotactic radiosurgery. SRS done at Moffitt in early October. Follow-up MRI and CT ordered for late November.

My overall impression of my brother’s treatment is that, once the doctors at Tampa VAMC saw how widely disseminated were the tumors, especially the presence of at least 4 or 5 in his brain, they decided to be palliative, not aggressive. Plans for a craniotomy on the two large pareital tumors that were causing his neurological symptoms were scrapped. He was given Zelboraf pills in July and told to report back to the oncologist once every 3 or 4 weeks. No follow-up scans were ordered until the end of October. When new neurological symptoms started in early September, the doctors had to be talked into ordering an MRI which showed new brain mets. Even then, they had to be pushed to do CT scans on the rest of his body to see if the Zelboraf was working on the non-brain mets (which it was). While his care has actually been very good, it has required a lot of research and a lot of pushing from family members to see that he gets the best possible treatment in a timely manner.