Friday, February 22, 2008

Clinical Trial Followup


Today, I had my follow-up visit with Dr. Richards regarding my antiCTLA-4 trial. We took all of the kids so they could see the doctor's office, meet the doctor and nurses, and gain a better understanding of what I do each time I meet with an oncologist. They all get an A+ for their behavior and patience. Afterward, we met our good friends Katie Clancy and MC Davenport for a meat-free lunch at Bennigan's (it's a Friday in Lent, remember?). We all enjoyed ourselves and made it back to Milwaukee before rush hour, which meant minimal drive time.

So how did the visit go? Well, the doctor first reminded me that it often takes a full 12 weeks of treatment before he sees results. Then he said my tumors appeared to be stable. The subcutaneous nodes were more numerous; many were bigger than before but some had gotten smaller. This I had expected as I can monitor the subcutaneous nodes on my own. Internally, many of the abdominal tumors had grown, but the CT scans did not reveal any new ones. The CT scan report also mentioned "many of the lesions have low attenuation centers that presumably represents necrosis." That means they appear to be dying from the inside out. I believe it is this statement that led the doctor to say he expects to see more shrinkage in the coming weeks.

The doctor and nurse both presented a cautiously optimistic attitude about the whole business, and Dr. Richards specifically said that he saw nothing that caused him immediate concern. He said all we can do now is wait and watch to see whether my immune system responds to the antiCTLA-4 antibody. Hopefully it will. I will return to his office in six weeks for a checkup of my subcutaneous nodes. Six weeks after that, I will undergo more CT scans and the doctor will decide whether I have shown a positive response and therefore qualify to be given a "maintenance" infusion of the antiCTLA-4 antibody. A positive response means the tumors have shown collectively less than a 20% growth over the 12 week period.

It's not bad news; it's not great news either. I certainly don't feel hopeless about the situation, and I don't want anyone to assume from this information that my days are numbered. Indeed, during our visit Dr. Richards specifically stated, "I think it's only going to get better and better." One thing I've learned through this experience is that these doctors deal with facts and don't dally with the truth. I do not think he would make that statement if he did not believe it. The doctor was happy that I have been eating well and feeling more energetic. I feel good about these things, too. I try to be as honest as I can on this blog, and I am being completely honest when I say I feel better than I have in at least four months and that I do feel optimistic about my chances of holding this disease at bay for a long time. And I'm talking decades, not just years.

In that same spirit of honesty, however, I have to admit that I have a difficult time getting enthused or feeling especially pleased with the type of review I had this morning. It isn't easy to read a CT scan report that states (note: all measurements are compared to CT scans taken 11/29):

". . . again seen is a pancreatic head lesion that is probably stable, measuring 1.9 x 1.3 cm. . . . The right adrenal gland is normal. There is a large left adrenal mass . . . (that) measures 4.3 x 4.9 cm compared to 4.4 x 4.4 cm. There are numerous nodules along the inferior margin. There has been interval enlargement of the right renal lesion, which now measures 5.5 x 4.5 cm compared to 4.7 x 3.8 cm. Multiple masses are again seen in the region of the gastrohepatic ligament and in a peripancreatic location. The celiac artery and portal vein are displaced. The most anterior node measures 4.1 x 3.3 cm and is slightly larger. Some of the other nodes are stable. The lesion posterior to the pancreas has enlarged, measuring 4.8 x 3.0 cm compared to 3.2 x 2.0 cm. There is a larger left flank mass situated at the level of the lower pole of the left kidney and invading the quadratus lumborum and left flank musculature that measures 4.7 x 5.5 cm compared to 4.6 x 4.9 cm. The extraperitoneal midline mass inferior to the xiphoid measures 2.7 x 2.2 cm compared to 2.0 x 1.7 cm. The right perinephric mass appears slightly larger, measuring 3.6 x 1.9 cm."

You don't have to be a medical professional to get the gist of what's going on: a lot of bad stuff is happening inside me. If I'm not leaping for joy after receiving such a report, I trust you can understand why.

On a lighter note, the weekend is almost here and the kids are making plans. Regan is plotting to have a playdate (if she gets her chores done!) and Aubrey wants to go shopping with the money she earned helping me do our taxes. I'm sure Jack will spend much of the next two days outdoors with the neighbor boys, and Kelly and I will try to get away for a couple of hours of adult conversation. I hope you all are able to rest a bit this weekend and that your favorite actors/actresses/films win Oscars (if you're into that kind of thing).



mphaley said...

We've kept you in our thoughts and prayers everyday. I know you must have so many ups and downs in addition to what we read on this's amazing to me that you share it with all of us so freely! There are many of us out "in the shadows" of the internet that are pulling for you!

Mike & Laura

Emily said...

Hi Jeff and family. Wanted to say hi and let you know I am always checking your blog for the updates. Thanks for sharing, as always. What does Aubrey charge for her tax assistance?? Have a great weekend! Emily Broyles

katie.elsener said...

Hey Jeff,
Know that you are in our daily prayers. Your attitude is fantastic. Thanks so much for keeping your family and friends so well informed.
Sincerely, Katie

Zoy said...

This is my first reply, but I have followed all along. I was touched (being in the music community) when your benefit was such an inspiration and success last year around this time. My wife visited you at the hospital a while back and was so uplifted with your positve attitude.

Even though I have never met you, you and your family are in my/our thoughts and we wish you happiness, strength and success!

Keep fighting the good fight, Jeff!

Zoy (and Rhonda)

Kara Smith said...

Thanks for the informative update. I appreciate that you share your journey with us all. I continue to pray for you and lift you and your family up in prayer at church each week. I hope the tumors that are dying from the inside out keep on dying!

Mary H. Dodd said...

I just read your blog (I'm babysitting Timoree, so I'm using Michael's computer). I'm crying as I read again all that is going on inside of you. I wish I could take this all away and have it myself (all mothers feel this way about their children's aches). Actually, I would never be as courageous and positive as you have been. I marvel at you and Kelly in your strength and example to the rest of us. I'd like to wrap all of you in a big blanket and hold you and tell you all how much I love you all. We will continue to pray constantly. It would be nice if it warmed up in Milwaukee and melted all your ice and snow, so you could sit on the patio again. Thank you for your honesty and courage. Love and prayers, Mom

Katie Clancy said...

It was so great to spend some time with you, Kelly and the gang. Finn is so adorable and such a flirt! Jeff, you look good and clearly your work in physical therapy has paid off. Dodd kids, it was fun to see you all again and it's amazing how fast you've grown! Please keep us posted on future Chicago visits - we hope to connect with you again soon, either in Mil or Chi. Lots of love - K

gardiner said...

Hi Jeff & Kelly, Thanks for the update. Jeff, your approach is so consistently strong and positive. You inspire me (and many more, I know). Keep it up. Love and hugs,
the Gardiners