News from the port...

They worked on my port until around 3:00, but were still unsuccessful at getting it flowing. Dr. Mita said that next time we come down (in two weeks), we will probably need to have x-rays with dye to try to determine what is causing the problem. It is not anything major, but it is important to keep it free-flowing and unrestricted to avoid infection and also to be able to use it if needed.

The type of port I have is pretty amazing. Called a "Port-a-Cath," it is entirely under the skin with nothing outside the body. It is in place just below my left collar bone and provides a way to infuse medications without having to have an IV. "Accessing" it is simply done by inserting a special needle through the skin and into the body of the port. It is not much more than a needle prick and is much better, in my opinion, than an IV. The older type of ports had very small access tubing actually protruding outside the body that could not be submerged and had to be kept clean and dry. With this one, I am restricted from only a few activities, like boxing and tackle football. How disappointing!

Anyway, we are home safely and beginning Cycle 5 with this new drug. We are very blessed and grateful for God's grace in our lives. We continue to trust Him with our lives and He is faithful in spite of our failures. Thanks to each of you for your continued support. We are blessed!

Kenny and Helen

We'll see what happens...

We are in the treatment room at CTRC as I write. I have completed four 28-day cycles of LDE225. My CT scans showed only very slight growth today, so we are clear to continue on this drug. We are thankful. Praise the Lord! In a Phase I clinical trial like this, the main objective is to determine maximum tolerable dosages for the drug. Dr. Mita consulted with the drug company, and they want to double the dose beginning with this cycle, so I started that today. We'll see what happens...

I have been feeling pretty well for the most part. I am still having headaches fairly often. A new development has been frequent muscle cramping in various parts of my body. Dr. Mita is not sure whether this is a side-effect of the drug or not. No other patients to her knowledge have had that happen. My blood work was a little off in certain areas, but she is not sure if that is related or not. I guess we will see what happens...

They had trouble flushing my port today, so we are still here because of that. If they don't get blood return when flushing, it could be an indication of a stoppage or clot. For some reason, they have not been able to get blood back. They have injected a drug called TPA into my port, which will normally thin out the blood and break up small amounts of buildup. It didn't work, so they tried reaccessing my port. That didn't work, either. We are still waiting to see what happens...

I was picked up by a UFO...

Thought I needed to check in at least...there is really no new news, and things have been very busy, so I have been letting the blog slide a bit. To both of my readers who check here often: I will try to do better.

Another quick trip to SA...mid-cycle visits on LDE225 are usually pretty uneventful. We had an easy day at the clinic. Tuesday marked my 100th day on this drug. Tempus fugit, huh? Side effects thus far? Headaches (although not as frequent as earlier), increased acid reflux, sore joints, possible slight changes in vision. Nothing I can't live with. Overall, I am still feeling quite well. PTL!!

Our next visit could be a pivotal one. The results of my CT scans will determine whether or not we continue with treatments with this drug. We are thankful for what God has done, is doing, and is gonna do. Our God reigns!

Kenny

Cycle 4 Begins

Yesterday was one of the more "efficient" days lately for us at CTRC. We arrived at 9:00 and I was called back into triage for one of my blood draws before we even had a chance to sit down in the waiting area. My EKGs were done next, and by 10:00 I had eaten my ritual breakfast. We saw Dr. Mita at 11:00, went back to the treatment room for another blood draw and waited for my drug. By 12:15, we were done. There seemed to be fewer patients there, for whatever reason, which we were glad to see. Typical Mondays are very busy.

I am now in Cycle 4 of this clinical trial. We should get an idea of the efficacy of this drug when I have my next scans on September 28. I am still feeling well.

We went down early this time so we could have a little time to play. We went to a couple of high school football games at the Alamodome on Saturday. We thoroughly enjoyed that. It was kind of nice spending some time there not doing the medical thing.

God continues to bless us in so many ways. He has used many of you in doing so. We are thankful for each of you.

Love,

Kenny and Helen