ipilimumab and nivolumab Trial Updates

As many of you know about 1 month ago I fractured my right arm and had to have a rod placed through what was at the time an un-diagnosed met of my RCC. The fracture went right through the area and well a 3-4 week period of pre and post surgery complications/testing with extreme pain was had. Not much fun at all. The good at the time was I was still on track for my 3rd infusion which I did have on 4/22. Almost immediate side effects hit me (headache, nausea, body aches, red blochy skin) and then all hell broke loose. Left side of body looked like I had been in the sun all day (within 36 hours of infusion) and then late Wednesday into Thursday my left eye began to swell. Headache became a migraine which led to double vision (isnt that a Foreigner Song?). The migraine led to severe nausea, fatigue, and an emergency visit Friday night (4/25) back to the Cancer Center. A few shots and some blood and I was out the door. From friday night till Sunday morning I slept for all of about 5 hours (pain meds are wonderful) and then Sunday (4/27) when I thought it couldnt get any worse it did. was rushed back to the Cancer Center as a "Direct Admit". At that time I had problems walking, thinking, and just knowing what was going on.

Was in the Hospital from Sunday to Friday (5/2) afternoon constantly on IV's of pain meds, anti nausea, antibiotics, and god knows what else. Had CT of head, MRI of Brain, and some fluid taken from my spinal column. White Blood, Creatin, and TBill cells all out of whack. Muscles around swollen eye were pressing on nerves including some swelling on a gland at the base of the neck. saw double of everything (never turned the TV on in the room until Thursday) Didnt eat a thing for almost a week. Just what ever fluids they pushed into me.

Results of test show no new sites of RCC- That is good and the bone scan I had due to the arm also showed no new sites.

Lots of Doctors, Nurses, and what not looking over me. Much of it I dont remember.

Well, Thursday (5/1) felt a bit better and started to eat. Things fell in line and home on Friday.

The weight that I lost from the first infusion (Hyper thyroidism) came back on the 2nd infusion (Hyp O thyroidism) was lost on the 3rd infusion. Down about 30 pounds since early Feb.

There will be no 4th infusion or maintenance for me and most likely they will just monitor me for some time to see what results I do see. At this time it is just too much of a risk for me to go any further in this program. These drugs are given as a % of body size based on the co-hort you were placed in. I was placed in the group with the largest shot size but since I look like I could be an offensive Lineman for any NFL team the overall volume of fluid that I got was greater then almost everyone in the program. Not sure what that means

So, we wait and run this program to the end and hope for good results. Mean while tomorrow I start a 2 week run of radiation on the Arm. Not sure if I will have much more to add on this trial but will make sure to add when I can. Most likely by the end of the Summer we will look for the next best thing that is out there.

Just a comment--I am not quitting! I will always fight this desease, I will laugh and joke when appropriate and when it isnt appropriate f it I will still laugh!

db