Oct 2 and 3 Spinal Tap update

Well, I don’t rock hard enough to get to go on tour with the band… but the good news is that results from my spinal tap last Friday are in and show no sign of cancer cells in the spinal fluid nor infection. Thank God!

It did show inflammation my oncologists (yes I now have two oncologists holding conference calls about me. One the head of the department at UAMC- crazy) believe is caused by a treatment I did in the first half of 2012. It changes the immune system permanently and because the anti-pd1 is generating an immune response, my immune system decided to turn the dial up to 11, causing the brain side effects. So, now they need to tone down the immune response a bit while hopefully not completely stopping the good work against the tumors. I started a steroid today that I’ll take for 30 days then wean off. I continue on the anti seizure med, although my doctor cut my dose in half today because it has made me exhausted and I’ve been struggling emotionally (a normal and one of the more benign side effects, but one we hope improves!) I have an MRI and neurologist appointment to determine my driving and seizure med future as well as weekly oncologist appointments while I am on the steroid and that’s not all! Two infusions this month. Things are actually looking up. This brain stuff has been going on for a month, and next month brings a lot of appointments, but we are feeling there is finally a light at the end of the tunnel. Whew! You all might not have wanted all this info, but there you go!
Oct 3
Holy crap… other oncologist called. Official diagnosis is auto-immune meningitis (my immune system is causing brain swelling.) Doesn’t change anything, just a scary name (not the contagious nor infectious kind, just swelling.) Still need to tone down my immune system with steroids. Apparently the docs and nurses were really worried I had more brain mets, so this diagnosis is a relief. I do have a call back audition for spinal tap on Monday to make sure I am responding to steroids. I believe I am because today is the first time in weeks I am not treating a headache. Sounds like I won’t have anti-pd1 treatment while I am on steroids since that would counteract what we are trying to do. Status of study will be unknown for awhile. Gotta get my brain fixed first. A melanoma friend said hopefully my immune system is being as tough on my tumors as it is on my spinal fluid. Amen and amen. Please keep us in your prayers. Feeling better, but worn out from this journey!

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