I have been reading the site everyday but haven’t updated in awhile. My husband Mickey started zelboraf 3-1-12 4 pills twice a day all was going well. He had scans on 4-24-12 they show shrinkage in all areas, but on brain MRI showed a flair close to his ommaya they said they will check again in 6 weeks. The week of mothers day his left eye would get red in the evening only then that Sunday he stayed in our bedroom because his eyes were so light sensitive. Saw our eye Dr here she put him on steroids drops.
I have been reading the site everyday but haven’t updated in awhile. My husband Mickey started zelboraf 3-1-12 4 pills twice a day all was going well. He had scans on 4-24-12 they show shrinkage in all areas, but on brain MRI showed a flair close to his ommaya they said they will check again in 6 weeks. The week of mothers day his left eye would get red in the evening only then that Sunday he stayed in our bedroom because his eyes were so light sensitive. Saw our eye Dr here she put him on steroids drops. Called MDAnderson as this is a possible serious side effect of zelboraf , they took him off the zelboraf until he sees eye Dr in Housron. We saw him , he referred him to an eye Dr that specializes in uveitis she did see some spots on his right eye at this point she is not sure if it is the zelboraf or the IL2 Mickey gets thru the ommaya for his leptomeningeal or how he is made . So she is tapering him off the steroids sent him for lab work to rule out somethings like autoimmune disease. We will have follow up with her in July.Still no Zelboraf or treatment for leptomeningeal. We went back for the brain MRI on 6-5-12the flair is smaller BUT they find an incidental finding (looks like a string) and an acute lacunae infarct. He has NO Signs of a stroke the PA told us it is common for people not to know they have had a stroke until it shows on the MRI. We saw a neurologist she said they would know for sure if it was a stroke if it fades on next MRI. Dr Papa did put him back on zelboraf on 6-6-12 3 pills in the morning and 2 in the evening for one week then if Mickey was doing ok could go up to 3 pills in the evening as well. We have been to see our dermatologist here he did a punch biopsy on a mole it is not melanoma but wanted to clean margins more on 7-5-12 we will not be making that appointment because I found a lump in Mickey’s right breast and will be at MDAnderson for a fine needle aspiration on that date. They didn’t want to wait until we are there for scans that start on 7-16-12. He hasn’t had a treatment for the leptomeningeal since 4-25-12 but Mickey is feeling great!! He is active he is out working running around until 12 or 1 then he comes home waits on the sun to go down far enough and he is out doing yard work. Will be doing CT of chest and abdomen, spine MRI, and brain MRI the week of July 16th and will see Dr Papa for results on the 18th we also see eye Dr on the 18th will update soon.
Praying for all of you
Samantha
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