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.