Oct 18, 2012 - 7:52 pm
It's been a long 3 days. I arrived home about 2 hours ago and I cannot tell you how good it is to be here! I want to share my experience with you, but I don't want to get too detailed and bore anyone. Suffice it to say that the scans that were taken on Tuesday showed no NEW growth anywhere, and the spots that they already knew were there have grown, but minimally. That was really good news to me, although I did find out that my left adrenal gland has something suspicious on it that is now worth mentioning. I suppose all this is moot, because the drugs I received are going to blast everything that doesn't belong in me. On Tuesday, after LOTS of blood draws and before the scans, I was told that my dosage would be 10 mgs/kg body weight. That sounded right to me, and I know there are others getting that dosage. Imagine my surprise this morning when they were explaining the procedure and they casually mentioned I will be receiving 20 mgs/kg body weight. I freaked out a little and all of a sudden there were 4 study nurses in the room with me trying to tell me that it was all right, and if I didn't want to do it, they wouldn't try to convince me. Damn...I went all the way to Nashville, and I wasn't leaving without the damn medicine! So I just said okay, gimme what ya got. And they did! It was infused over 1 1/2 hours and they took my vitals every 15 minutes. I had absolutely no side effects, except that my blood pressure was a bit lower, but that was to be expected. Since I had no issues, next time (in 3 weeks) they will infuse it over an hour, and eventually over 30 minutes. I've gotta say that I really felt all right. However, at about 5:00 this evening on the way home, I told my husband I was sure I had a fever. I took 2 tylenol and when I got home I took my temperature. It was 100.8...not good, but after another 30 minutes and a fever breaking sweat I am much better and my temp is at around 99. I will call the nurses tomorrow and ask about it. I apparently am in an expansion group and the drug companies are now upping the doses to 20mgs. I think it is important to mention that SCRI has 3 spaces for participation in this study and I am the only one. Are there two people out there who are interested? The key is to have the receptor for the PDL drug. This was determined by sending a sample of my tumor to the drug company where they tested it and determined that I am a receptor! A one out of three chance.
In any event, I am glad to be home and must tell you all who prayed for me and thought about me that I felt all that energy. And that is what got me through the last few days. I want to be a survivor and I want to take all of you along with me! The support in this group is astounding and humbling. Thank you all.
Love, Paula XO