Advanced Prostate Cancer

2009, you were good to us!

2009, where have you gone?

It seems like just a few weeks ago we were wrapping up 2008.

Today we closed the year for the Faith, Love, Hope, Win Foundation by making our annual donation to the Prostate Cancer Foundation. I am proud to announce that for 2009 our donation is the same as 2008, $32,000!

To raise that much money, in the midst of this economy makes me so proud of all that have helped throughout the year. Two poker events, a disc golf tournament, the greenhouse event and of course the golf tournament.

I’m a little speechless right now. In just four and a half years FLHW has raised over $132,000!!

We couldn’t have done any of it without the help of all the players, sponsors, friends and family.

God bless you all.

Alphabet soup

I think I have mentioned here before that I like to read. My primary authors these days are James Patterson and Sue Grafton. I like the murder mystery writings of both.

I am just getting into the Alex Cross series from Patterson and only have one of his ‘Women’s Murder Club’ series to finish.

As for Sue Grafton, for those of you not familiar, she has written 20 books in the Kinsey Millhone ‘alphabet series’, “A is for Alibi….M is for Malice”, etc. I have read all but “I is for Innocent”. I can’t seem to find it at any of the used book stores and may have to resort to the library.

I stumbled upon Grafton on Spring Break 2008. We were in Anna Maria Island and after day five or so I had already finished “The Kite Runner” and another book I had brought along. I remember standing in Walgreen’s trying to find something, anything to read. It was there I found “J is for Judgment” and was immediately smitten with Kinsey Millhone.

The books all take place in the mid to late 1980’s and without going into detail, Kinsey is some kind of character, pun intended. She likes peanut butter and pickle sandwiches, drives a beat up 1947 Volkswagon Beetle. She is pretty much a loner. I could go on, but as I finished the book tonight, this sentence had deep meaning,
I hadn’t known him long, but some people simply effect us that way. Their sojourn is brief, but their influence is profound.

I add this as a footnote to the many, many men and women I have come to know over the past 4+ years. So much has changed, so much remains the same, and so much is still a mystery.

In case I don’t post before Thursday, may all of you have a wonderful and blessed Thanksgiving wherever and whomever you spend it with this year!

Sometimes….

There are times when I sit here and I wonder to myself…. “I have cancer…really?”

I don’t want you to think I’m depressed, it’s really the opposite. My leg/hip pain is all but gone and I’m feeling really good physically.

Maybe that’s why at this particular time I’m questioning the reality of my condition.

I spent last weekend at my brother’s property. He deer hunts with a few guys from St. Louis and I sit in the house and read books, watch college football and cook and overall just relax. This is the same place I wrote about in 2006 and in September of 2008. I would like to find more time to get up there. It’s incredibly beautiful.

I’m really looking forward to Thanksgiving. I’m even trying to lose a few pounds as we approach the date. Looking forward to wonderful food and spending time with family. Again, more time to relax, and spend time with those I love.

A Mental Countdown

Four weeks went real fast.

Monday is my next appointment with Dr. V.

Where does the time go?

I approach this meeting with absolutely no expectation or preconceived idea about what the results
will show. I have been through the little dance too many times over the past 57 months to worry or even attempt to guess where this is going.

My leg is returning to normal, though there is still occasional, very mild pain. Usually if I sit too long. We will discuss with Dr. V for sure.

In the past week there have been three pieces of news related to prostate cancer that are of interest.

First, Dendreon Pharmaceuticals announced that they have submitted their application to the FDA for the drug Provenge. This has been a six year journey for them and somewhat good news for the group I fall into; late stage, hormone refractory. Provenge has been shown to add an average of four months of life. While this doesn’t sound like much, it is rather significant.

A new drug from Epeius Biotechnologies called REXIN-G made quite a splash this week. In early stage trials it is showing very promising results. I am not one to get too excited, it’s early, and the trials are limited, but it adds a little much needed HOPE.

Finally, the American Urological Association came out with a position that clarifies the need for continued early screening. I hope this goes a long way to help counteract statements made last month by the head of the American Cancer Society. As a PCa friend said via Twitter yesterday; screening should not be the controversy, the controversy lies in the decisions made around treatments. Particularly for men with early stage and low grade PCa.

And so I close with this, Hope lives on in me, always. This disease may take my life, but it will not kill me. What I mean by that, and pardon me for being repetitive, is that in the face of this adversity I push on full speed. With the strength provided by my wife, my son, my family, my friends and complete strangers, I march on into this daily battle with my head held high!

The Windy City

Being that Brad had a 5 day weekend last week, we decided in early September to make the most of it and head for Chicago.

I wish the weather would have cooperated but it wasn’t so bad. The rain was light and only bothersome as we waited outside the Shedd Aquarium. Brad had never been on the eL, in a public bus or a cab, we did all three! We visited ESPN Zone, the Hancock building, Michigan Avenue stores and enjoyed a dinner at Giordano’s. It was a fun three days away and I can’t wait to go back soon.

On a personal note, leading up to the trip I once again had been having hip and leg pain. I had spent a lot time the previous week or ten days sleeping and using a heating pad at night. It was cold and damp out the week that it seemed to be at its worst. Advil helped but the mild pain was rather persistent. When we arrived in Chicago the twenty minute walk to the hotel included a very noticeable limp on my part. Leading up to the trip I had reached the point where Advil was no longer needed but the mild pain was still lingering. The good news is by the time we walked back to the eL on Saturday, it was without a limp. Three days back at work and it’s all gone.
Mary thinks the pain may be from arthritis after having chemo, I’m not so sure. She did research on this and found instances where patients have developed arthritis after chemotherapy, specifically Taxotere. We’ll have a lengthy discussion with Dr. V on the 9th and go from there.

Fall is here. Although it’s not my favorite time of the year, the beauty of the foliage is stunning this year in KC. That is all for now.

Something new for FLHW

I am proud to announce the launch of the new and improved www.flhw.org
go check it out when you have a minute!

I owe a tremendous thanks to the site designer, Joyce Hutchings. She’s a co-worker from years and years ago at Sprint. Joyce put a lot of time into updating the site and teaching me the basics on updating it as well. I think she did a fantastic job and hope after looking it over, you agree. As I always say, the kindness of friends and strangers never ceases to amaze me, Joyce thank you very, very much!

There are still a few tweaks for me to include but as it stands, it is ready for prime time. Please poke around the site and let me know what you think!

After all this, I’m not done! Up next, it’s kind of a secret but I’ll just say “Yes, there is an app for that.”!

It didn’t suck….

Pardon the somewhat crass language but in the midst of yesterday’s four hour sailing adventure,
Captain Jim responded to a self posed and somewhat rhetoric question “How was your day off?”
We departed Overland Park at 9:30 AM. It was sprinkling with a thick overcast. As we traveled
west and north to Lake Perry, the clouds thinned and the rain stopped. I doubt we have many more
70 degree days in 2009, so when we backed away from the dock at 10:30, we were pleased that the temperature was already a balmy 63!
I’ll end the diatribe here by saying four hours later we were beat, but as you can see from the pictures, it was a good beating with strong winds and beautiful blue skies!
Thanks Captain Jim!
Son of a son of a sailor
By: Jimmy Buffett
As the son of a son of a sailor
I went out on the sea for adventure
Expanding the view of the captain and crew
Like a man just released from indenture

As a dreamer of dreams and a travelin man
I have chalked up many a mile
Read dozens of books about heroes and crooks
And I learned much from both of their styles

Chorus:
Son of a son, son of a son
Son of a son of a sailor
Son of a gun, load the last ton
One step ahead of the jailer

Now away in the near future
Southeast of disorder
You can shake the hand of the mango man
As he greats you at the border

And the lady she hails from Trinidad
Island of the spices
Salt for your meat, and cinnamon sweet
And the rum is for all your good vices

Haul the sheet in as we ride on the wind
That our forefathers harnessed before us
Hear the bells ring as the tight rigging sings
Its a son of a gun of a chorus

Where it all ends I cant fathom my friends
If I knew I might toss out my anchor
So I cruise along always searchin for songs
Not a lawyer a thief or a banker

But a son of a son, son of a son
Son of a son of a sailor
Son of a gun, load the last ton
One step ahead of the jailer

I’m just a son of a son, son of a son
Son of a son of a sailor
The seas in my veins, my tradition remains
I’m just glad I don’t live in a trailer

672 hours of indecisiveness

Two good updates from our appointment with Dr. V. this morning….
First, since we didn’t have to go to the lab, we were in and out of the office in under 90 minutes!
Not that I’m looking for drive thru Oncology services, but this was nice! It gave Mary and I time to share a celebratory cup of coffee and then an early lunch at the Blue Koi.

Second, and most importantly were the results of last weeks tests:
Blood:
PSA – 101.46
This is up, but only two points.
CTC – Circulating Tumor Cells: 0
This is the third consecutive time since April that the CTC measure was 0

Alkaline Phosphates: 55
Still well within the normal range of 29-110
Testosterone: 10 <
Cholesterol – 155
This is back down from 210 approximately 90 days ago – not sure why it was so high previously
All other blood markers were normal.
Scans/X-rays
Bone scan was stable with no new areas notated
C/T Scan – The only thing notated was a lymph node in my lower right abdominal area which was slightly larger this month than last. Dr. V was convinced that at this time, it was nothing to worry about.
Once we decided we were relatively comfortable with my current condition and that we would maintain the current treatment, we discussed potential future treatments. Dr. V mentioned an upcoming trial that we may want to consider, SPRYCEL® (dasatinib). We are going to do some research on it to determine if it is a viable option. When the time comes that we are ready to begin a new treatment, we will also confer with Dr. L in Houston regarding other potential clinical trials for us.

Dr. V. also mentioned Provenge as a potential treatment in the future. Of course it is pending approval by the FDA, so it is once again a matter of time. Another example of why we must continue to try to manage the cancer by maximizing the time we can gain from each treatment.

So there you have it, as in the past it’s really hard to get excited, although we were relieved that all of the tests, with the exception of the stubborn PSA, were stable. We have a reprieve for another 4 weeks, 28 days or 672 hours!

Unwanted, but hardly unexpected

If the past 55 months have been nothing else, they have been tumultuous. Today was just another example of the uncertainty that is my life.

My PSA number was back up, this time to 99.43

I was pretty bummed out, for about an hour. Seriously, by the time Mary and I got home I was pretty much over it. It’s a good time, if there ever was one, because I’m busy…between the preparation for the upcoming golf tournament, the reorganization going on in the office, and a few other irons I have in the fire, I have little time to slow down or dwell on my PSA number.

We did leave the doctor with this plan; on October 6th I will have follow up bone and CT scans. Aside from taking up most of a day, these don’t bother me too much. I am slightly concerned however about the total number of these I have had over the years. I should probably know this off the top of my head but I would estimate that this makes a dozen. That much radioactive dye can’t be that good for me. On the 6th I will also have a PSA, CTC and alkaline phosphate test. The combined results of these tests are what we are hoping will lead us to a new plan.

The choices for my next treatment are limited; DES (estrogen), another round of chemo (3 weeks on, 1 week off versus last time when I did 1 on 3 off) or a yet to be determined clinical trial.

So that’s the update, pretty crummy overall but we’ll get through this like we have before. Many, many thanks for all the kind thoughts and prayers!