Hi all! Sorry I have not been around much, although quite frankly it doesn't look like I've missed much! haha
That was NOT to be taken as a challange to create controversy or heaven forbid start some political bs posts! Yikes!
Hi all! Sorry I have not been around much, although quite frankly it doesn't look like I've missed much! haha
That was NOT to be taken as a challange to create controversy or heaven forbid start some political bs posts! Yikes!
I just wanted to let you all know I'm still hanging in there with this intrathecial IL2 (into a post directly to the part of the brain that produces the spinal fluid). It sucks of course but I am able to avoid many of the worst side effects from systemic IL2. I don't have swelling or water retention so therefore I'm not really in danger of any kind of organ failure, just brain problems and severe naseua / spinal type headaches. But I've had no seizures or anything.
My fluid has been coming back clear of mel. the last few weeks and my last scans even showed some lightening of the enhancement in the lining of my brain. That's called leptomeningial disease (LMD). They don't really measure it the way you would solid tumors but you can absolutely see it's either shrunk or become less active when you see the pictures. That's a nice bonus and Dr. Papa says is a pretty unique response since I have not had to added any WBR or Temador or anything. Straight IL2 like this is more a clear the fluid / stop the progression treatment. So I'm thrilled about that obviously. No new body spread either which is a big relief since I've had to be off the GSK BRAF inhibitor.
I've been more active on facebook lately so ya'll can look for me there – Amy Griggs Busby. But I am getting the hang of the bb changes so I'll try to pop in more. Of course I'm peppy now since I have had a brief IL2 break. Tues I go back in and will then feel like shit and too tired to post, lol.
Love,
Amy
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