Nilandron

Two, two, two posts in One!

chemotherapy, disc golf, FLHW, Kansas City Disc Golf, Nilandron -

First and foremost, here is a treatment update. After researching the proposed clinical trial, Mary and I decided it is worth the potential upside and we are going to participate in the trial. I spoke further with Dr. V only to discover I have to be off Nilandron for at least six weeks. I will stop taking it on Sunday, which will make my first treatment date Monday, June 9th. Treatments will continue once every three weeks for up to twelve treatments (or thirty six weeks). If I am able to stay on schedule, dependent on blood counts maintaining normal range, I will have my final treatment on January 26, 2009 [the day before my 46 birthday!!]

This is going to be a long six weeks leading up to a long nine months. Like everything else we have faced over the past three years, nothing moves fast. The first week of June I’ll have a port surgically implanted and will also have follow-up CT and bone scans. Yippee, more radioactive fluid!!!

The anticipated side effects are somewhat standard for chemotherapy; hair loss, neuropathy, loss of appetite, weight gain (from the steroids), fatigue 4-5 days after treatment, nausea and a few more.
None of this concerns me if the outcome is positive. I have my faith, your love, and the hope God instilled in us all. I truly believe we can win this battle before moving on to the next stage.

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The next update is in regards to the FLHW Disc Golf Tournament. On the upper left side of this page you will find a picture slide show like the one that I created for the Fall ’07 golf tournament. The day was fantastic and thanks to everyone, we were able to raise approximately $2,200 dollars for advanced prostate cancer research.

I especially owe thanks to my friend Gary who crafted this idea and acted as Tournament Director. I also would be remiss if I left out the FLHW Board and my dear friend Pete for his on-going support of FLHW.

At this point, our focus turns to our 4th Annual Golf Tournament to be held Friday, September 26th at Ironhorse Golf Course. We still have a few details to work out. The formal announcement will be coming out in the next week or so…..

Spoken like a politician, weatherman or economist…

Advanced Prostate Cancer, bone scan, CT scan, Nilandron, PCa, radiologist -

I finally got the radiology report from last week. The CT report needs to be re-done because it states “no previous exams are available for comparison”. Kind of funny (but not ‘ha-ha’ funny), being that my previous scans were done at the same hospital!

As for the bone scan, they apparently were able to locate the previous exams. Here is the Radiologist’s report:
Impression:
1. Stable foci of activity involving the left ilium, right acetabulum and pubic ramus as well as left 7th rib posteriorly. Initial patient’s known history of prostate cancer and elevated PSA levels these lesions are suspicious for stable metastatic lesions.

You get it, right? This is the report, word for word. Reminds you of a politician, economist or weatherman doesn’t it? For those of you who don’t speak the language of radiology, the last sentence is the key take away: “…are suspicious for stable metastatic lesions.” Interpretation – So PSA aside, things are stable!

I asked the doctor to have the radiologist re-write the CT report based on a comparison of the previous report. After this screw up, we might be in the market for a new diagnostic imaging center in the future!

Nilandron, which I started the day before the scans, might be working; back pains are all but gone. We’re definitely keeping the positive attitude going!

More updates later….work beckons.

….reaching back into the bag of tricks!

Advanced Prostate Cancer, Casodex, disc golf, HDK, Ketokonizol, Lupron, Nilandron, PCa, thunder snow -

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.
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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…….