Tuesday, August 26, 2008

Josh and Ethan at Disneyland

Last week Josh went to Tucson for a Dr.'s appt. They were able to go in with a needle and remove 2 1/4 liters of fluid from his abdomen. This alleviated some of his pain! He was even able to go into work for a little while last week!

He also had a CAT scan done that day. I guess the scan showed that everything was pretty much the same. At least the tumors haven't grown, especially since he hasn't had a treatment in a long time!

He decided to start the new treatment in CA. He will fly out tomorrow to fill out the paperwork and then he will have a PET scan on Thursday and then fly home after that. Below are some things I cut and pasted from his 4-Wheeling site.

Aug. 13th- I met with the TX doctor yesterday and he won't operate either. He at least took the time to explain to me why an operation is not possible at this time. Basically the 2 main arteries in my pelvis are encapsulated by the tumors so removing the tumors is not possible. If only one was encapsulated then there would be a chance, but that's not the case.

He felt that tumors are showing a lot of necrosis and said that cells will swell as they die so that may be why some of the tumors appear bigger and I have more pressure. Now I'm torn between continuing on my current treatment to see if things improve (since there is more necrosis, maybe I just need to give it more time to start shrinking), or switching to the new treatment hoping for faster results but not knowing what it will bring me. I have to make a decision in the next day or so and I just don't know what to do.

Aug. 15th-I met with my doc in Tucson yesterday. I was all prepared to discuss the 2 treatments (my current ET743, and the new one MKC1106-PP) and make a decision.

My doctor does not want me to wait for the OTHER treatment (R1507 {an IGF-1R inhibitor} combined with Everolimus {an mTor inhibitor}). He doesn't feel like I have time to wait for it (even doing one of the other treatments while I wait). He said if it was him, he would forget ET743, and MKC1106-PP and do the other IGF1R inhibitor that I can start in California right now. This is not R1507 but it is the same type of drug, just a different manufacturer.

So we have a monkey wrench. A third option that I wasn't really considering until yesterday. Both R1507 and Everolimus have shown great results as mono-therapies so combining them theoretically should be even better. There is no guarantee, however, that this new trial will start in the next month or two, or ever for that matter. Many of these trials get canned before they ever even start. If the IGF-1R treatment alone works, then I'm that much better off. This is the treatment that I've wanted to start for the past few months, the only reason I didn't start it for my last treatment is because I heard of the upcoming one. The doctor says we have good data on the IGF-1R working by itself, so why wait?

I've had MANY people praying that I make the right decision, and yesterday (when it was still just between the 2 drugs) I had no idea which way to go. I now feel strongly that my new 3rd option (IGF-1R alone) is the way to go. I'm going to call the doctor in California in the next few minutes to discuss this 3rd option, so if there is no problems with me starting it, that's the way I'm going.

Aug. 19th- Thank God, I got some relief today. They were able to drain 2 1/4 liters of fluid from my abdomen today. It wasn't really painful. I felt a little stick when they poked me for the lidicain, then a pinch when they pushed through the peritoneal lining. They had to do it 3 times before they got it to drain. First time the catheter kinked and the 2nd time it got clogged. 3rd time was the charm. My abdomen looks much better, I can actually see where my belly button should be. I have a bit of a valley across my abdomen when I lay down. Much less pressure, hopefully tomorrow the pain (that I've been having in my side) will go away. It already feels a little better tonight. I've been soaking through the bandages though. It looks like the fluid from the adema has found a route out (through the needle hole). This fluid is different than what they pulled out of my abdomen. This fluid is in the outer tissue. I guess the more it drains, the better it is.

After the paracentisis I had my CT scan. I should hear the results in the next day or two. This is the next step to begin the new treatment.

Thanks again for all the prayers. I can't tell you how much I appreciate it.

Wednesday, August 13, 2008

Josh and Aiden at Disneyland.

Josh got back from TX this morning. The surgeon he went to see told him he wouldn't do the surgery either. He told him that it looks like some of the tumors have become "jelly like" and that they might be able to do paracentesis and withdraw some of it to give him some comfort.

He's going to Tucson tomorrow to see his Dr. They're going to discuss what treatment he should go with. Please pray specifically for God to lead him to the right treatment.

Thursday, August 7, 2008

Info about the new trial drugs

Here is the email Josh just sent me about the trial in Tucson that he's going to start.

He flies out to Texas to see the surgeon on Monday. He has a friend named Chris (who also has DSRCT) that will pick him up and take him to the appt. He will also be staying with him while he's in TX. The surgeon that he's going to see is the same one who did Chris' surgery.

The new trial that I'm going to start is MKC1106-PP. It's a phase I trial that has already completed the "low dose" portion of the trial. I will be in the "high dose" trial. This drug targets 2 antigens found on some tumors PRAME and PSMA.
"PRAME is found in lung cancer, breast cancer, ovarian cancer, renal cancer (kidney), pancreatic cancer, and colorectal cancer (colon and rectum) cells. PSMA was originally found in prostate cancer cells and later found also in the blood vessels which supply lung cancer, breast cancer, ovarian cancer, renal cancer, pancreatic cancer, colorectal cancer, and melanoma (skin cancer)."
Basically I'll get an IV shot and 2 shots directly into the lymph nodes in my groin (guided by sonogram) 2 times a week, every other week. I'll get the plasmid dose on days 1, 4, 15 and 18, and the peptides on days 29 and 32.
Possible side effects seem minimal: Headache, fatigue, joint pain, and soreness at the injection site. This drug does not attack all fast growing cells, just the targeted cells. This should keep my blood counts up so hopefully I'll start feeling better.

Wednesday, August 6, 2008


I'm running out of recent pics. so here are some older pics. of Josh & his family.

Here's an email I just got from Josh! We are all so excited for him! This is what we've been waiting for! Thank the Lord! Please let this be the treatment that does it and thankfully he won't have to travel too far!

My Tucson doctor called me yesterday. I told him about the problems I've had over the last 2 days and that I haven't had any output from my colostomy all day. He said that if I didn't have any output from my colostomy by morning that I needed to go up to Tucson (this morning I've had some output, so I'm not blocked). He told me that the results of the tests on my tumors were in and that they had the 2 receptors needed to qualify for the trial in Tucson. I told him that I had my appointment next week with the surgeon so depending on that, I could start the new trial as early as the following week (the 18th) if he won't operate, or after I recover if he will do the surgery. I have to be 28 days without other treatment to start the trial in Tucson, so the week after next will be past that point. So either way, I'm getting a new treatment to try until the other trial opens in San Antonio. I talked to the head nurse at the clinic in Santa Monica and she said I could stop my current treatment and try something else, then come back if the new treatment doesn't work as well. So I can always go back.

Monday, August 4, 2008

Aunt Sue, Josh, Rosie, Uncle Bill, Ethan and Aiden

Here's the latest from Josh!

No pilots had picked up my flight through Angel Flights yet, so I canceled and now I have my flight scheduled for next week to Austin. I found direct flights using ExpressJet and for the round trip it's just over $200. Everywhere else had stops in other cities and they were about $330 each way. shocked There is another DSRCT patient that lives in the Austin area (he's the one that gave me this doctors contact info, also had his surgery by him). He's offered his guest room and offered to pick me up from the airport, take me to my appointment and take me back to the airport. So this trip isn't going to be bad at all. Looks like God is opening the doors. I don't think it could have worked out better. Now we'll just have to see what the surgeon says.

Saturday, August 2, 2008

Josh and Ethan at Disneyland!

Josh sent me another update this morning. Below is what he wrote! Please pray that God will lead him to make the right decisions!

The Texas surgeons office called my Tucson Oncologist and setup a surgical appointment for the 12th. Now the problem is that I'm supposed to start my next round of treatment in California that day. My thoughts right now are if Angel Flights hasn't had any pilots pickup my flights for that trip, then I may cancel and go ahead to Texas for the appointment. If Angel Flights has a pilot lined up, then I won't cancel. If the doctor agrees to operate, then not doing this next treatment will allow me to have the surgery sooner since I won't have to wait for my counts to recover. I'd kind of like to have the doctor look at my CT scans before I fly out there in case there is something obvious that would make him not want to operate, but at the same time, I'd like to see him face to face so he can see the swelling and I can explain to him in my own words how badly I want the surgery. Another wrench has been thrown into my decision on surgery though. My wife told me the other day that she doesn't want me to do the surgery. She doesn't think it's the right choice but hasn't said anything since I was so for it. I still feel deep down that this is the right thing to pursue.

As far as my new drugs go. I stopped taking the Lyrica to see if that would help with the drowsiness. I still have random bouts of drowsiness and some nausea/vomiting, but the pain is still under control, so I'll continue on without the Lyrica. I started taking the Ritalin again today so we'll see if that helps. I also started taking Milk of Magnesia twice a day. That has really got my colostomy moving. With taking just the Senokot-S I was changing my bag 2 times a day if I was lucky. Since I started the Milk of Magnesia, I seem to change it about 5 times a day. I'm having much less cramping. However my appetite has gone down. I'm still eating OK, but I don't feel like eating as much as I was.