PCa

Flashback…..

Advanced Prostate Cancer, Des Peres, flashback, Kirkwood, PCa, PJ's Food and Drink -

From the time I was 15 until I was 19 or 20 I worked in a restaurant call “PJ’s Food and Drink”.
Thirty years later, the memories of that place are fresh in my mind. The original location was on Manchester Road in Des Peres, MO. but it is long gone. It re-opened in a new location a number of years ago in downtown Kirkwood.

The photo above was sent to me from my ex-brother-in-law, Bruce (he is in the photo, on the left). The handsome devil on the right is yours truly (click on the photo for a larger view). I would guess I weighed in at about 120 pound in those days. Skinny, but what a handsome fellow, no?

The things we did back then, cars, motorcycles, girls, beer, the list goes on and on. There crew included Airhead, Hoppy, Steve (aka X), a bartender named Curley (female), PJ himself, his brother Urban, and both my brothers.. Mom and Dad came in most Saturday nights.

Thanks for the flashback Bruce, those were the days indeed.

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You are late

Advanced Prostate Cancer, hyacinth, PCa, spring -

Has winter got you down? Me too!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

You are late
2-26-08

Where have you gone?
Patiently, anxiously, I wait,
for your arrival.

Unlike years past,
your teases and
days of temptation
have been lacking this year.

The days drag on,
cold, damp, dreary.
I long for you,
but you are late.

When will you come?
When will you temp me
with warm breezes,
the scent of hyacinth,
and green, green grasses.

YOU FORGOT WHAT??

Advanced Prostate Cancer, Faith-Love-Hope-WIn, PCa -

I guess you could say I’ve been a little busy and a little distracted?

2-18-08

Sound familiar? My three year anniversary came and went and I just let it slide!

Wow, so much has happened in the last three years. I am not sure where to begin? What to include?

Instead of looking back, I’ll look forward…maybe three years or so:

2011
– Mary and I will celebrate our 20th wedding anniversary
– Brad will turn 15 (that’s a frightening thought, driving, girls, Wow!)
– My 30th high school reunion
– My dad will turn 80
– I’ll have survived 6 years with this damn disease

It’s a little late, and I’m struggling for words tonight.

So here’s to three years down and many, many more ahead!

5,096

Advanced Prostate Cancer, Dierks Bentley, Long Trip Alone, PCa -

So, it’s back to the music.

I spent the weekend taking every CD we own and copying them to my iPOd. I now have 5,096 songs (46 + plus days of continuous music!).

Out of all those choices, I’m here at work listening while writing up a requirements document.
What comes on is “Long Trip Alone” by Dierks Bentley.
And so I quote:
So maybe you could walk with me a while
Maybe I could rest beneath your smile
Maybe I could feel right beside you ’til I’m home
‘Cause it’s a long trip alone

It’s such a beautiful song.
~~~~~~~~~~~~~~~

“Of her”
2-19-08

I think of her,
and I cry a little tear.
Man how I hate this…
I want it back,
my life without it,
my life with her.

More on Dan Fogelberg

Dan Fogelberg, music, PCa, prostate cancer, Sometimes a Song -

Back in December I wrote about the passing of Dan Fogelberg.

Jean, the widow of Dan Fogelberg, has teamed up with the Prostate Cancer Foundation to raise money for prostate cancer research. A new song that Dan recorded back in 2005 is available. 100% of the proceeds will be donated to the PCF.

Details are available here

I have downloaded ‘Sometimes a Song’, and it’s pretty good, I encourage you to do so as well.

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.
~~~~~~~~~~~~~~~~~~~

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…….

up, up and away….

Advanced Prostate Cancer, chemotherapy, PCa, PSA, University of Kansas Medical Center -

Last night, after a VERY long day at work and after attending our home owner’s association meeting, I sat down and wrote a blog entry. It was verbose and eloquent and right to the heart of the matter. It got lost in cyber space…..

My PSA: now 36.2

Another rise. Although not drastic, certainly headed in the wrong direction.

Tomorrow we are meeting with an oncologist at the University of Kansas Medical Center to discuss some options and clinical trials involving chemotherapy. As far as Advanced Prostate Cancer goes, there are not many options and none of them offer the potential for a cure. What they do offer is hope, and time.

I also have an appointment for new CT and bone scans next Tuesday. Additionally, we are attempting to get an appointment with a doctor in Virginia. He is one of the national experts on Prostate Cancer, however, he is in such demand that it may be late March before we can get in to see him.

I find myself remarkably calm about what is happening at this point in time.

Historical Numbers
Date – PSA
2/25/08 29.4 (Started taking Nilandron on 2/4/08; Started Selenium 200 mcg on 2/26/08)
1/28/08 36.2 (Stopped taking Ketoconazole and Hydrocortisone in anticipation of next treatment)
12/31/07 30.9
12/3/07 21.9
11/5/07 23.3
10/8/07 19.30
>10/8/07 Changed Lupron from 120 day dose to monthly dose> 9-12-07 Began taking .5mg of Avodart per day. Changed Ketoconazole from 600mg twice per day to 400mg three times per day)
9/4/07 21.80
8/6/07 19.25
8/2/07 16.96
7/02/07 20.30
6/04/07 17.80
4/30/07 16.25
4/2/07 17.68
3/5/07 21.87
2/5/07 20.90
1/8/07 18.90
12/11/06 24.86
11/13/06 43.61
10/16/06 51.48 (Started “High Dose” Ketoconazole and Hydrocortisone, 10/01)[at this point and for a second time we prepared for Taxotere. First my Oncologist wanted to try High Dose Ketoconazole and Hydrocortisone.]
9/11/06 83.97 (started Zometa)
8/23/06 41.77
8/18/06 54.66(no tests in June or July)
5/19/06 11.37 (stopped Casodex)
4/3/06 4.25
3/5/06 1.45 (started Casodex again)
1/27/06 0.46
12/28/05 1.85[at this point we prepared for Taxotere, chemotherapy treatments. First I had a new PSA test and new bone and CT scans, lymph nodes clear, spine clear, ribs, femur and hips stable. The PSA dropped to 1.85 and the scans revealed marked improvement. Chemo was cancelled 72 hours before it was scheduled to begin]
12/15/05 7.18
11/03/05 4.64 (Stopped taking Casodex)
9/22/05 0.8
08/11/05 0.35 [nadir]
6/24/05 0.55
4/17/05 2.51 (taken at MD Anderson, Gleason lowered to 7/7)
4/06/05 3.51 (Six weeks after starting Lupron and Casodex)Original Gleason scores (7/8)
Pre-treatment tests:
2/18/05 Started Lupron
2/11/05 Started Casodex
2/?/05 219
12/?/04 189 (Original test)

Another passing…..

Advanced Prostate Cancer, Dan Fogelberg, PCa, prostate cancer -

Dan Fogelberg, a popular singer/songwriter of the ’70s and ’80s, died Sunday, at home in Maine at the age 56. He had battled advanced prostate cancer since being diagnosed in 2004.

I was never a huge fan, although I did like most of his music. My favorite song was his most popular, “Leader of the Band”, which was a a tribute to his father.

“Leader Of The Band” – Dan Fogelberg
An only child alone and wild, a cabinet-maker’s son
His hands were meant for different work and his heart was known to none
He left his home and went his lone and solitary way
He gave to me a gift I know I never can repay

A quiet man of music, denied a simpler fate
He tried to be a soldier once, but his music wouldn’t wait
He earned his love through discipline, a thund’ring velvet hand
His gentle means of sculpting souls took me years to understand

The leader of the band is tired & his eyes are growing old
But his blood runs thru my instrument & his song is in my soul
My life has been a poor attempt to imitate the man
I’m just a living legacy to the leader of the band

My brother’s lives were different, for they heard another call
One went to Chicago, another to St. Paul
And I’m in Colorado when I’m not in some motel
Living out this life I chose and have come to know so well

I thank you for the music and your stories of the road
I thank you for the freedom when it came my time to go
I thank you for the kindness and the times when you got tough
And, Papa, I don’t think I’ve said “I love you” near enough

With apologies to Fall

fall, PCa, prostate cancer, roses, test results -

So as you know, I’m not a big fan of the Fall season.

While I do like a few things about this time of year, the fact that nature is preparing for the on set of Winter does not do too much to brighten my spirits.

However, the other morning I found two reasons to issue an apology to Fall. The pictures are not high quality, as I took them with my cell phone camera.

The first are the last three roses of the season. Mary and I grow a pretty mean rose. Several of the plants have reached heights of eight feet, and these are not climbers. Three roses, each from a different plant, each a different color. There’s that number three again…..hmmm?



The second is a picture of our Indian Summer Maple tree. I missed it’s peak by a day or two but I hope you see the source of it’s name. It truly is at it’s best during Indian Summer.


Tick, tick, tick…..what’s that? The sound of my heart racing as I wait for my monthly test results!