Waiting on scans

Hi! We had a wonderful Thanksgiving holiday. Kelly's mom, grandma Ruby, sister, brother, and their families came to Wauwatosa for the weekend, which was a lot of fun. Then my parents swung up from Chicago for a few days after the holiday, so we got to see them too. The weather largely cooperated with everyone's travel plans and I think a good time was had by all. : )

This past Monday, Kelly and I drove down to Chicago to visit Dr. Jon Richards. He is running a clinical trial that I hope to start soon. He made a good impression on all of us (my parents rode along with us). Before I can start the trial, I have to do some CT scans and get an EKG. I did the scans today and do the EKG this coming Monday. I'll keep you posted about when the cycle of treatments will begin. It doesn't sound too bad: one infusion every three weeks for 60 or 90 minutes. I don't know any specifics yet, but I do know I don't want to try comforting a baby during an infusion or driving myself back to Milwaukee after an infusion. For that reason, I may need some help on the days I go down for my treatments. If anyone is interested and able to be my driver and Finn's babysitter during my trips down to Chicago, please let me know. We can take my van and I'll buy you lunch!

One last totally unrelated note I've been meaning to add to the blog for several weeks: my cousin's husband, Michael Ray Tyler, is a professional musician in Las Vegas. Many of you have heard Michael perform and know how good he is. He has just released his latest CD of light jazz music. Doubleclick the picture above for details about how you can get a copy for yourself.

Jeff

An early holiday greeting

Hi! I know it's early but I thought some of you would get a kick out of this holiday greeting featuring Aubrey, Regan, Jack, and Finn: http://www.elfyourself.com/?id=9557849883.

Finn had his six-month checkup yesterday. He's 27 1/2 inches long and weighs 16 lbs 1/2 oz. That puts him in the 80 percentile for length and 25 percentile for weight and 100 percentile for cuteness (I think all babies somehow manage to get into the 100 percentile for cuteness).

Jeff

Aubrey's a cheerleader

Hi! Not much to report. I go to Chicago on 11/26 to visit a doctor; that's when I'll hopefully get all the details about my next round of treatment. Until then, we're getting ready for the holiday weekend. Kelly's family, including her grandma Ruby, is coming to visit us for the weekend. It will be great to see them all and have them around for several days. I've been working the kids hard to get the house and yard clean in anticipation of their visit. They've done a terrific job keeping up with my orders! : )

I'm posting a picture of Aubrey in her full cheerleading glory because I thought some of you would be interested in seeing it. The second picture is proof of what can happen to you if you're a six-year-old boy who has a cheerleader for a sister. She and her friends think it's funny to dress him up, and Jack doesn't seem to mind. We tell ourselves he's too little to know better! : )

We'll post more after Thanksgiving.

Jeff

PS If you have a hard time seeing a picture, double-click it to enlarge it.

Happy Birthday to Kelly

Hi! Today is 11/11 and that means it's Kelly's birthday! We celebrated by spending the weekend at the Illinois Beach Resort, just north of Chicago. The parents of my brother-in-law, Bryan Clay, gave us a voucher for a free weekend there. Illinois Beach is a state park right on the shore of Lake Michigan, and many of the rooms at the resort have lakeside views. We had something better. As soon as we got to our room, Regan and Jack opened the curtains and screamed with joy: from our room, we could see right into the indoor pool area! Of course, that's where we spent most of our time. Even Finn and I got in on the action. I took a dip in the whirlpool, and Kelly took Finn in the big pool for close to an hour. He didn't want to get out! I guess he's just like Aubrey, Regan, and Jack in that regard. We can't thank Bruce and Nell Clay enough for the wonderful getaway.

I'm posting some pictures we took while we were away. That's Regan floating, Aubrey drying off (yes, it's a fake!), and big brother Jack showing Finn how to watch TV!

Jeff

Bad Blood

Hi! I received a call today from Dr. Joseph Clark at the Loyola Medical Center. The bad news is that my blood tests came back and did not show evidence of the antigen needed for the antiCTLA-4 trial he is conducting. The good news is that he referred me to another doctor in Chicago who is running an alternative antiCTLA-4 trial that has very few requirements so I should be able to get into it. I am going to contact that doctor tomorrow and see how soon I can start (assuming that I can). For anyone who's interested, here is a link to info about this new trial: http://www.clinicaltrials.gov/ct/show/NCT00495066?order=1.

We'll keep you posted as we get more information.
Jeff

A Chicago Update

Hi! Kelly and I went to Chicago today to meet with Dr. Joseph Clark at the Cardinal Bernadin Cancer Center at the Loyola Medical Center. Dr. Clark is an oncologist who specializes in melanoma, and he is involved in a clinical trial involving the antiCTLA-4 antibody. According to Dr. Clark, the antiCTLA-4 antibody is attracting a lot of attention for its potential in treating melanoma.

I don't have a full understanding of the science involved, but here's my layman's understanding of how it works: when the body detects an invader, like a virus or a cancer cell, it tells the immune system to attack it. But it cannot let the immune system run unchecked in its attack so it uses a regulatory mechanism called CTLA-4 to reign in the immune system. Scientists think the antiCTLA-4 antibody will suppress CTLA-4 thereby allowing the immune system to keep fighting the melanoma cells in full attack mode. I'm sure any scientists reading this will shudder in horror at the many errors in my description but I think my general idea is correct.

In order to be a part of Dr. Clark's antiCTLA-4 trial, I have to meet certain requirements. One is that my blood has to contain a particular antigen. And another is that I cannot have any cancer activity going on in my brain. I did a blood test today and will find out in a week or so whether I have the particular antigen. And I will have to do another MRI later in November to verify that the brain mets are under control. If I have the antigen and the brain mets are stable, I will be able to start the clinical trial after Thanksgiving. This is what I'm hoping will happen.

Fortunately, I have another option if I cannot get into the trial. Dr. Clark said there is another antiCTLA-4 trial going on at another hospital in Chicago right now. It is called a "compassionate use" study because it is open to anyone. The difference between the studies is that Dr. Clark's trial actually involves a pair of treatments (antiCTLA-4 and a melanoma vaccine) whereas the "compassionate use" study only involves antiCTLA-4.

So that's where things stand today. I feel good about my visit. I liked the atmosphere at the Cardinal Bernadin Cancer Center, and Dr. Clark really impressed me with his knowledge and personality. What makes me feel best about the whole thing, however, is Dr. Legha's reaction. When I told Dr. Legha that I would be meeting with Dr. Clark to discuss an antiCTLA-4 treatment, he was very pleased and said this is definitely his first preference for my future care. His blessing gives me confidence that we're heading in the right direction and once again giving
our best shot. I am so glad he's driving this boat.

PS. Here's a link to a page with info about Dr. Clark's trial (his trial is actually just one location for a national trial) for anyone who's interested in reading technical information about it: http://clinicaltrials.gov/ct/show/NCT00094653?order=2