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! ;-)

H

April Clinical Trial Update

Hi, All - I went down to St. Louis yesterday for my every-6-weeks visit.  It was a beautiful day: the temperature was in the 50sand daffodils, forsythia, and star magnolias were blooming - hopefully, it will get that way in Lincoln soon.

No CT scans results this time.  They did say that my natural thyroid hormone levels were lower, which is a good thing.  The tumors are thyroid material and produce the hormone.  (In spite of that, I still have to take thyroid replacement drugs - I don't understand this, but there it is.)  They can measure the natural thyroid hormone level and the lower the reading, the less hormone the tumors are putting out.  It may be an indication that the tumors are smaller.  (This is how I interpret it.)

I've been in the study for a full year now and I've  found out a little more about it.  There have been a couple deaths in the past year, but most of us are responding well.  (That's all the detail they will give.)   They still plan to present a paper on it in June and we'll see what happens after that.

They gave me a couple more things to try for the side effects, which were pretty bad this last cycle.  I had a nasty virus in the 2 weeks that I was off the drug before starting the last cycle and I think starting from a lower physical level made the side effects worse.  I'm feeling pretty good at the start of the current drug cycle so I'm hoping it'll be better this time.

Next trip down is May 14.  I think I will have CT scan results this next time.

Thanks for all your prayers and support!

John

February Clinical Trial Update

Hi, All - I flew down to St. Louis yesterday for my 6-weekly exam.  I decided to try the local train/bus system rather than rent a car.  That went well, but it actually took longer to get from the airport to the hospital than it did to get from Omaha to St. Louis!  Got to have lunch with Sara's Aunt Rosemary, which was fun.  (She always knows the best places.)

 

I've been coughing up blood for the past few days, so I had to have a chest x-ray when I got down there.  Got the results this morning.  The x-ray showed signs of "mediastinal adenopathy".  This is scary way to say "swollen lymph nodes between one's lung under one's breast bone".  It's only an observed symptom and not a diagnoses.  It could be anything from cancer to AIDS to an infection to benign swollen lymph nodes.  To find out for sure, I'm going to have a complete body CT scan on Monday.  I get to drink a couple bottles of Barium dye for it.  (I hope it tastes better than some people say.)

 

It's hard not to be concerned about this, but I'm sure everything is fine.  I just had a head/neck/chest CT scan in January and that showed nothing.  My oncologist in St. Louis said it's unlikely there's been an explosively growing new tumor pop in up that time, so I'm betting it's just an infection and I'll get to take some antibiotics. 

 

I'll let you know the results of this new scan.

 

Thanks for your continuing prayers and support.

 

John

Hi, All - I went down to St. Louis yesterday for my 6-weekly checkup with the Sutent clinical trial and got some good news.   My CAT scan last week shows no new tumors and the existing tumors show no new growth.  I started on my 7th course of the drug yesterday and they have some new ideas to try with the side effects.

 

I found out a little more about the study as a whole.  There are only 50 of us in it nationwide.  (I had thought there were 50 of us in the St. Louis location.)  I'm one of the few men and I'm the youngest person in the study.  Most of us have shown good results.

 

The researchers are preparing a paper on the current phase of the study.  It will probably be presented this summer.  If it's accepted, the study may go into new larger phase.  I have hopes if this happens that my oncologist in Lincoln might be able to be part of it, or failing that, maybe a practice in Omaha will take part.

 

Thanks for your continuing prayers and support!

 

John

Hi, All  - I went down to St. Louis Monday and saw Dr. Needles.  Normally, I would be starting the next cycle of Sutent today, November 21.  Dr. Needles decided he wanted me to wait a week and try to get my feet healed up more.  I'll start my next cycle on Wednesday, November 28.  My next appointment with Dr. Needles is January 9.

Dr. Carlson, I have an appointment with you on December 4.  Normally, that would be 2 weeks into the drug cycle, but it's only 1 week into the revised schedule.  Please let me know if you want me to reschedule this appointment.

Hope you all have a Happy Thanksgiving!

John