February 04, 2008

....reaching back into the bag of tricks!

Happy Anniversary, my blog was three years old yesterday!!!

Friday we met with the oncologist at KU Cancer Center. For those of you in Kansas City that have been in the former Sprint headquarters building on Shawnee Mission Parkway, you would never recognize it, the place is beautiful. They did a wonderful job of renovating the building. As for the service, the disposition of the support staff was consistently warm and friendly. It was quite a refreshing experience, given the situation. The icing on the cake, while sitting in the waiting room, a volunteer pushing a serving cart approached each person and offered refreshments water, soda or juice. Additionally, she offered light conversation and a smile. They get an "A" for service!

Our appointment with Dr. V lasted well over an hour. He was again very patient and sincere. We reviewed my statistics, medications, etc., as well as the health charts Mary and I maintain. We also reviewed a matrix that Mary created that lists potential treatments, based on the research that we have done. Dr. V told us that we captured the current options and took the time to discuss the plus and delta for each option. Before I discuss what's next, I probably need to provide some history. I'll leave out some of the details in order to keep this slightly shorter than War and Peace!

Feb 2005: I started Lupron and Casodex. Lupron is a shot, it shuts down the production of testosterone by the testicles. Casodex is an antiantrogen and shuts down the testosterone produced by the adrenal glands. This is the "standard" treatment for advanced prostate cancer, to which I had immediate, although short lived results.

November 2005: I stopped Casodex. In some cases this can lower PSA. In mine, it lasted a few months.

September 2006: With my PSA rising into the 80's, I started High Dose Ketoconizal with Hydrocortizone (another antiandrogen). Though I reacted well, my PSA never fell below 16. Also, because I was not in pain, we stayed on this regimen through December 2007, when my PSA rose to 30.

Now: my PSA is at 36. There is no standard 'next step', there is a lot of grey. Below are the primary options that make up the grey:
- DES: this was the standard treatment years ago. It is still used in cases like mine. DES comes in a pill form that is taken once a day. The issue is it is Estrogen. With that comes breast enlargement. In order to compact the breast issue, patients are given a single round of radiation across the breast bone. [please keep your comments about the 'man-zere' and 'bro' to yourselves] It also caused some cardiovascular concerns, so it is typically taken with a blood thinner.

- Chemo: the FDA approved chemo treatment for Prostate Cancer is Taxotere with Prednisone. The drug is administered interveneously once every three weeks for 8-10 treatments (depending on tolerance and reactions).

- Then there are a number of alternative treatments. I hesitate to use the word 'alternative'. This is not witch doctors using 'goat horn and frog tongue'. This is expert medical doctors specializing in Prostate Cancer that primarily use approved drugs in an 'off label' manner.

> Where we ended up. Being that I am not on an antiandrogen at this time, Dr. V recommended I try one more variation of antiandrogen. Starting today I will begin taking Nilandron. Nilandron is similar to Casodex. The anticipated side effects are minimal. We'll give this 4 weeks +/- to see if I respond. If not, then we will search once again through the grey and decide what the next course of treatment will be.

On an unrelated topic; have you ever experienced 'thunder snow'? Yesterday morning we were playing disc golf. Around 9:00 AM we started hearing thunder. Next thing we know the sky is filled with lightening and it begins to produce freezing rain. As we hurriedly made our way back to our cars, the precipitation changed to the consistency of Styrofoam. It was crazy, I guess you had to be there.......


Anonymous said...

David, thank you for explaining and sharing your course of action. It sounds like you have Dr. V and a very good working relationship and you are in good hands. It is reassuring that Dr. V is open to discussing different treatment approaches. Hoping for you a great response to the Nilandron.

We experienced "thunder snow" here in Northeast Iowa this a.m. - Yes it's crazy!

Anonymous said...


3 years!? I'm sure in some ways it has flown and in others crept like a glacier. As always, your thoughts and words convey a sense of determination and purpose that is truly inspiring. Keep up the good fight.

God bless . .

Anonymous said...

Sharing what you face and the possible treatments is a great help to others who will be facing the same decisions. Thank you for doing that.
Nilandron...we hope for the best results as you start on this.
Congrats on the 3 year mark - we'll be looking for many more!
You're thought of often David

Your Florida Friends,
Don & Susan

Anonymous said...

David.. Thank you for keeping me/us all up to date. You have no idea how many people read this blog and get true inspiration from you. If you go thru the blood thinner routine and/or radiation maybe I can be of some assitance. I think of you daily.

Tom T.
ps. you have my email address.