Clinical Trial Update from May 14, 2008

Hi, All - I went down to St. Louis yesterday for my 6-weekly visit. No CT scans this time; I'll have a scan the second week of June.

I just passed my first anniversary on Sutent and doctors with the clinical trial are pleased thus far. In the past year, I've had no new tumors and no growth in the existing tumors. There has even been some shrinkage in some of them, forwhich I am very grateful. They're a bit concerned that some of the medical side effects (like anemia, immune system suppression, Hand-Foot Syndrome) seem to be getting more pronounced, but not to the point that they think they need to suspend treatment or reduce the dose. Personally, I'd be happy if I could taste things again, but that's a small thing. (There's an interesting blog entry from by kidney cancer patient on what he calls "Sutent Mouth" that pretty much matches my experience.)

The study leaders still plan to present a paper on the study this summer. Hopefully, that will lead to an expansion of the study and maybe I can participate in it from Lincoln, rather than going to St. Louis every 6 weeks. (Although I'd miss seeing Sara's aunt and cousins if I didn't do that!) They took a picture of my eyelashes this time to show to other doctors: The ends are white (like most of the rest of my hair) but the roots have turned dark in the 2 weeks I was off the drug. It makes for a rather odd look. (I just hope I get model credit if the picture is published!)

My next trip to St. Louis is June 25 when I'll get my latest CT scan results.

Thanks for all your prayers and support for me and my family. My Lincoln oncologist recently had a stroke. He's expected to make a full recovery but I'd appreciate it if you could include him in your prayers as well.

John

New Blog

This is my first post in a blog of any sort and I feel ridiculously self-conscious about it! I doubt that anyone but me will ever see it, but I'm told writing about the cancer experience can be helpful.

As I mentioned in my (too lengthy) introduction, I have been in a clinical trial using Sutent to treat my metastasized thyroid cancer since April 24, 2007.

I still don't understand how lymph node and other materials can turn into thyroid material, but that's what has happened to me. Currently, I have tumors in my neck, chest, abdomen, and lungs. Because of that, they are considered inoperable.

Most thryoid material is "iodine-hungry": That is, it absorbs iodine and the radioactive material that may be in it. That's why the standard treatment for thyroid cancer is to surgically remove the thyroid and then take a dose of radioactive iodine. This radioactive iodine is drawn to any remaining thyroid material and kills it. (I may write about that experience some other time.)

I had surgery first in November, 1999, followed by radiation ablation in January, 2000. Scans showed we got all the cancer then and I was fine for almost 7 years.

I found a mass in my neck in late November, 2006. It was biopsied and found to be a lymph node that had turned to thyroid material and was cancerous. It was surgically removed in December, 2006, and I had any dose of radioactive iodine in January, 2007.

Follow-up scans showed that the radiation ablation did not get all the cancer. Biopsies of the tumors in my lung showed they were radiation resistance.

Since there is no treatment for this cancer, we started searching for a clinical trial. We were fortunate enough to find one at the David C. Pratt Cancer Center in St. Louis, MO. I was accepted into the trial and have been taking Sutent since April 24, 2007.

Since that time, I have had no new tumors and have actually had some shrinkage in the existing tumors. I am profoundly thankful to the Lord and to medical science for this.

But I think that's enough for today. When will I write again? I don't know - I guess when I have something to say! ;-)