I just got an email from Josh that tells more about what's been going on lately. I'm just going to cut and paste it so I don't have to paraphrase it and mess it up!
Well, had another appointment with my Tucson Doc on Thursday and we discussed a new clinical trial he's hosting. They did a blood test at my last appointment and I have a genetic marker that is for some type of immunity. Now all they have to do is verify that my tumor has 2 specific receptors that will make me fully qualify for the trial. They are currently testing one of the tumors they removed during one of my surgeries for this.
I've been having a lot of swelling below the waist. Basically all the fluids drop down there and my circulation isn't good enough to bring it back out. The tumor in my pelvis is blocking off all the flow. I've been having a lot more pain in my pelvis, especially by bladder. I've heard really good things about a surgeon in New York and I've asked my doctor to refer me to go see him. My doc would like me to meet with another surgeon in Tucson. So I have an appointment to see him after my next CT scan in another week or so. If he's willing to do the surgery then I'll probably let him since it will keep me here locally. If not, the doc in NY is known to do the surgeries that no one else will do. I should be down for a little over a month or so if I get the surgeries. Basically I want the tumor in my pelvis removed, which will also allow them to reverse my colostomy. And if they're willing I'll have another surgery to remove as much of the tumors in my abdomen that they can.
I've also found another lump on my back that seems to be protruding from between two of my ribs. Doc said it was definitely a new lump, but didn't say if he thought it was a tumor or not.
Treatment got canceled for this week. My counts are still too low and they're not open on the 4th, so it should be next week now. If I can't go on Tuesday, I'll have to wait another week because I have my CT scan and my surgical appointment on Thursday. Sloan-Kettering called me today to verify insurance and personal info. They said the doctor will review my records and they'll call me back to schedule an appointment. This is the doctor in NY city. He's done many surgeries on other DSRCT patients and I feel he is most qualified to do my surgery. However, if the Tucson doc is willing to remove all the tumors possible, then I'll have the surgery here to stay close to the family. I guess we'll find out next week.