Hi everyone, this is my 1st time posting, just joined TODAY!
I'm from Pittsburgh, PA, thankfully home of the Hillman Cancer Center & UPMC Presby, where I've got all my surgeries, etc done already.
Back in May 2011, I had horrible headaches, and my vision was getting blurry, for almost a month I dealt with it (thinking it was my birth control doing it, so I got off that), and it didn't stop. So, June 21st 2011, I went for a head scan, and they found 2 SPOTS on my brain.
June 21, 2011, I was in the hospital and and June 22, I had brain surgery to remove the GIANT ORANGE size spot above my LEFT EYE (which caused the blurry vision), and they left the small spot on the other side of my brain in (size of a quarter).
I was out of the hospital after a few days and the eye doctor called and said that my vision tests showed hugely abnormal distress, and said I needed to come back in and after a few more tests, they sent me to the hospital, to either get eye surgery or a Lumbar drain (which is what I got for 8 days over July 4th), as all the fluid was still up around my brain causing stress on the eyes.
So for 2 months, for all of July & August, I had to keep checking with the eye doctor , and luckily my vision is almost back to normal as of Sept 2011 and in July I had the Gamma Knife treatment (which I just lost my hair in both spots they treated, and for almost 2 months it hasn't grown back!)
Then my chest xray showed I had 2 spots in my right lung (1.3cm & 3.9cm) and 1 spot in my liver (4.6cm), which for 2 months went untreated while my eyes and head were recovering.
FINALLY Sept 2nd, I started 1st injection of YERVOY / IPI . No side effects yet except for some very dry skin on my head. I go for my 2nd round Sept 23rd at Hillman Center in Pittsburgh. This is my 1st treatment for my chest spots, and all I can say is I HOPE THIS WORKS to shrink these down.
I will go thru whatever I need to to stay alive for as long as I can. I've had a very difficult time with this emotionally, I break down almost everyday crying thinking about the future, just having a hard time dealing with all this, most my friends must think skin cancer is a skin only thing and it's NOT, hell even I had no idea before I got this, I had moles removed this winter, where is where they think this may have came from.
I'm 31 years old and have 2 kids, who are 6 & 2, and I want to stay on this beautiful earth for as long as I can to be with my kids!
I'm just so nervous about whether this works or not, I am not looking forward to IL-2, if I have to go to that, I'm BRAF negative.