Thursday, July 31, 2008

Hi everyone! Below is the latest on Josh. Please pray that God is leading him to the decisions he's making! Please pray that he will get some relief from the pain and the swelling.

I met with my Tucson doctor yesterday. He really doesn't want me to have surgery. He thinks it's a bad idea. He is, however, going to send a referral to a surgeon in Texas at my request. The doctor in Texas did a surgery on another DSRCT patient, that I've been talking to, that no one else would do. His colleagues called him crazy but he said he'd do the surgery again in a heart beat. We'll see what he says after seeing my records.

Tuscon doc says I look way better than he expected me to look considering everything. So I guess that's encouraging. He says there is really nothing they can do for the swelling.

I told him that I was using Perkoset every 2 hours for the pain, but I've read that it's not good for the liver. The past couple of days I switched back to the Dielodin which last for about 4-5 hours before I have to take it again. The biggest problem with the Dielodin is that it takes about 1.5 hours to kick in, so I'm in pain unless I overlap my dosage. The Dieloding also makes me puke occasionally and makes me itch as I come down. He prescribed me a slow release Oxycontin that should last me 12 hours, so I'll take that twice a day and I should stay above the pain threshold. He also said that this dosage should take care of the pain without making me feel drugged, so maybe I'll be of some use now. I just started it last night and I took it again this morning so we'll see how I feel on it. So far no pain, and just a little druggy feeling. Mostly I think it's making me drowsy. I'm also taking Lyrica, which is also a long lasting pain killer, twice a day. The combo seems to be good so far.

The clinical trial that my Tucson doc wants me to start (in Tucson) is still on hold pending the result of the tests they're running on my tumor samples. The tests should take another week. I told him about the one starting in the next 2 months that's the R1507/Everolimus and he thinks that would be a good trial to get into, however he kinda hinted that I shouldn't wait for it and I should start the other IGF-1R inhibitor that Santa Monica doc wanted me to start. I still feel like the the 2 drug combo would be worth waiting for so in the mean time I'm going to continue my current treatment (ET743).

I did the math and I'm actually spending between $446 and $500 per trip for just the flight, hotel stay, and cab fare. The difference is whether I book my flight early enough to get the "Get away" fare. I called Angel Flights (a volunteer group that arranges flights for medical patients using private pilots/planes) and got setup with them. I pushed my treatments back a week to make sure my counts would be good enough for treatment so we can avoid changes with the flights. Since these are volunteer pilots (using there planes, fuel, and time) it's best to have a firm date/time for travel. Many of these pilots take off from work to be able to fly patients. This will make my treatments every 4 weeks instead of every 3. What they do now is put my travel dates into a system and pilots can pick a flight that they are willing to do. So now I wait until a pilot or several pilots pick my request. If this works out, it will save us $246-$300 dollars each trip. Plus they'll be able to fly me into Santa Monica, so cab fare will be cheaper too.

I think that's it for now.

Sunday, July 20, 2008

Below is what Josh posted on his 4 Wheeling site. He said I could cut and paste it to the blog, so here is the latest update. Please continue to pray for him and our family! Please pray for some pain relief for Josh and that God is leading him to the right trials/studies and Dr.'s .

I had my CT scan and met with the Tucson surgeon last week. The CT scan showed that the tumors are stable (even though it doesn't feel like it). The Tucson Surgeon will not operate because he doesn't feel like he has enough experience with this kind of cancer.

I finally made it out to Santa Monica on Thursday. My doctor there wanted to stop my current treatment (even though it's keeping the tumors stable) because he wants to see the tumors shrinking. He's worried about the distention in my abdomen. The new trial he wanted me to start in another IGF-1R inhibitor. This is the same kind of drug that I wanted to get started on when I first went to Santa Monica, just by a different drug manufacturer. There is another trial that is supposed to start in San Antonio around Aug/Sept. This trial includes the IGF-1R inhibitor and a second drug which is an mTOR inhibitor. If I start another IGF-1R or mTOR inhibitor in the mean time, it will exclude me from the upcoming trial. So I've decided to stay on the current drug until the new trial opens.

The doctor in NY called me while I was in Cali. yesterday. He won't operate either. He says the tumors are too extensive. I haven't been able to talk directly with him, so I'm going to try and get a hold of him on Monday to beg, but it doesn't look good. I have 2 other doctors I can try, but I think if the doctor in NY won't do it, then no one will. We'll see.

I'm got back from Cali. yesterday so now I'm just trying to recover from the treatment. Rosie bought me some compression stockings and that has gotten rid of the swelling in my legs, but I can get the swelling in my scrotum to go away. Talk about painful!

Sunday, July 6, 2008

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!

June 28th-
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.

July 1st-
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.
Aiden and Josh at Parker Canyon Lake-
We all went fishing together last weekend. This was the first time the boys had ever been fishing!

I know it's been a long time since I've updated this, but I didn't have a lot of info to put on. He went to CA about 3 weeks ago. The treatment went well and he was supposed to go back for another one last week. His blood count was too low and because of the holiday things got postponed. This Thursday he has a Dr.'s appt. and a scan so he won't have the treatment this week either. His Dr. in Tucson is saying that he might be able to have another surgery to take out more of the tumor(s) and alleviate some of his pain/discomfort. He's anxious to get the scan done to find out if he can have the surgery or not. Hopefully the scan will also show that the tumors have shrunk even more since the last scan! Please pray that he will get good results all around! Please pray that the Lord will tell us if he should have the surgery or not!