A repeat performance? and Sea Creatures

Sunday is the 2009 Kansas City Corporate Challenge Disc Golf event and my friend Gary and I will be defending our gold medals. See this post; 'We are the Champions..."

I'm not expecting a repeat, since I really haven't played very well the last few rounds. You can bet though I am hoping for a turn around by this weekend!

Not that it's an excuse or that it has impacted my game in any way, but my knees have been hurting. It started when I came off steroids after concluding chemotherapy. It primarily hurts when I sit for a while or after sleeping. The more active I am, the less I notice it. I tried to use this as an excuse for more disc golf, but Mary wasn't buying it.

My docs weren't much help (it's not their specialty) except to suggest I see an Orthopedic Specialist if the pain became too severe. Monday I asked a few runners I work with and they all suggested Glucosamine.

Glucosamine is a compound found naturally in the body, made from glucose and the amino acid glutamine. Glucosamine is needed to produce glycosaminoglycan, a molecule used in the formation and repair of cartilage and other body tissues. Production of glucosamine slows with age.

Glucosamine is available as a nutritional supplement in health food stores and many drug stores. Glucosamine supplements are manufactured in a laboratory from chitin, a substance found in the shells of shrimp, crab, lobster, and other sea creatures.

Though I've only taken it four times, I already feel the difference! I only hope it continues to get better as I continue to take it.

Summer time, summer time, sum-sum-summer time!

On Monday we met with Dr. V for my monthly appointment.

PSA = 39.75

This is up slightly from four weeks ago (36.16) but not significantly.
He reviewed the letter from Dr. L at MD Anderson and we discussed the recommendations at length. He is in agreement with the recommendations and he ordered the two new tests. We will use a combination of these three tests two determine when we make our next move.

I already have total alkaline phosphates measured each month as part of a standard CBC Blood panel but the first new test will break it down further. Here are some details from my friend Howard at hrpca.org:
Alkaline Phosphatase, serum Bone-specific alkaline phosphatase (BAP.) When alkaline phosphatase is measured, it is actually the sum of the bone-specific and liver-specific components (isoenzymes.) BAP can indicate excess osteoblastic cell activity which may indicate bone metastases. Metra Systems, Inc., says that Bone Alkaline Phosphatase is an osteoblast membrane-bound molecule which is involved in bone formation. Levels of this enzyme are thought to be indicative of the activity of osteoblasts.

Another description of AlkPhos is that it is an enzyme that is found on the surface of osteoblasts(the cells that build bone) and as such is used as a serum marker of increased osteoblast activity. Since bone is being added at prostate cancer bone metastases, an increased alkaline phosphatase can mean increased bone met formation. A recent paper by MR Smith et al in Urology discussed BAP and NTx in their role as predictors of skeletal complications in HRPC patients (MR Smith, et al, Urology 70: 315-319, 2007.) Their conclusion was that elevated baseline levels of BAP are associated with a greater risk of adverse skeletal outcomes - events such as shorter time to radiotherapy or shorter time to first pathologic fracture. NTx was also found to be of value in monitoring patients on bisphosphonates.

The second new test will measure the amount of CTC's or Circulating Tumor Cells. Recent studies suggest that for men with advanced disease, measuring whether the number of cancer cells circulating (CTC) in the blood stream is rising or falling may be a more accurate method for determining response than PSA. CTC’s are found in many cancers but are most common in prostate cancer.

So we ran both tests in order to establish a baseline and I will have the tests repeated in three months along with an updated bone scan and MRI. So unless my PSA goes crazy or I develop pain somewhere, no foreseen changes for the next three months.

Not sure if you caught that, three months, as in July!!!

Woo-hoo!!!

Spring and a few other things

This might finally be the week when we put winter behind us. I say that with some trepidation, not wanting to jinx things. I planted spinach about a month ago and it is finally making some real progress, however harvest and a fresh salad from the bounty are weeks away.

We played in a rain soaked disc golf tournament on Saturday and I hope to get out a few times this week and weekend. Additionally, plans are well under way for our second annual FLHW disc golf tournament on May 9th. Details are at http://www.flhw.org/2009discgolf.htm

Since returning from Houston, I've really been trying to take the doctor's advice to just get on with it. We have been really wanting to get back to Florida and may try to plan a trip for when school gets out. I could use some sand between my toes!

My next appointment with Dr. V is next Monday and for once I am not real concerned. Well maybe just a little. There is potentially some good news on the horizon for those of us with advanced prostate cancer.

I've written about this new drug, Provenge, a number of times over the years. My first post on Provenge was on October 24, 2006. Next week the company is scheduled to announce the results of their Phase III trial and rumor has it, the news is good. What that means is, in the best case scenario, the drug may be available in the first quarter of 2010. Available and approved or paid for by insurance are two completely different things as well. It is still good news and apparently there may be more regarding other treatments in the months ahead. Again, nothing curative, simply drugs or treatments that may extend the life of those with advanced PCa.

And now for today's dose of emotional stew

I'm sure many of you have seen this:
Susan Boyle

If this didn't make you laugh, cry, cheer, I'm not sure what would.
As I watched this it made me thinkabout how sad it is that we are such a judgemental society. Yours truly included.

I know this has nothing to do with Prostate Cancer however, I wish this woman the best and hope she goes on to become a big, big star!!

Eggs, and bunnies, and candy oh my!

We made it home safely on Friday, but not in a timely manner. Southwest Airlines, who I usually find to be reliable, did an absolutely miserable job of getting of us home. I'll forgo the details, but it involved delays, missed connections and arriving home six hours late.

I played disc golf yesterday and today with the gang. I really need them and appreciate them in my life. I am trying my best to take the doctor's words to heart and just get on with my life. Easier said than done!

Today is about the Lord and family and now relaxation with just Mary and Brad - this I also need!

Happy Easter everyone, peace be with you all.

When "nothing" makes you happy

The taste of saline was strong, stronger than I remembered. It had been awhile. The tears themselves started from laughter and evolved to tears of sorrow.

Mary and I watch "Marley & Me" last night here in Houston. I won't talk much about the movie so as not to spoil it for those of you who may not have seen it yet, however, it was a great movie. It won't win any awards mind you, but for those of us with dogs, and Labradors to be specific, the reality is spot on. As the movie evolved on the screen the tears of laughter turned to tears of sorrow. It was not just about the fate of the dog, but the thoughts of death itself.

It all hit too close to home for me.

It was the culmination of the day's events, and the fact that it is Holy Week.

Yesterday we spent the day at MD Anderson Hospital in Houston. Through a few contacts we were able to secure an appointment with the Chair of the Genitourological department, who I will refer to as Dr. L. More on him later, but in a nut shell, what an incredible doctor, man, care giver.

After checking in at 10:00am and going through the paper work process we headed to the lab so the vampires could extract seven vials of my blood. The lab area was a stark shot of reality; packed with cancer patients in various stages of treatement. From wide eyed newly diagnosed patients to those poor souls that chemo has obviously ravaged. Silent Hail Marys streamed through my concious thoughts as we waited.

After the finishing up at the lab, we ate lunchand then returned to the seventh floor to wait for our 1:00pm appointment with Dr. L. As is typically the case, we did not follow the planned schedule... we actually met with the doctor at 2:15pm. The wait was a much different experience. Much of the time was spent completing a lengthy review and clarification of my status, x-rays and scans with his nurse practitioner, so the hour flew by.

Our time with the doctor was approximately thirty minutes, no more. The thirty minutes were, for the lack of a better term, incredible. After four years, we think we know a lot about prostate cancer, but we learned more in that thirty minutes than most of the last four years combined. In this case it was specific to me, but it really opened, or re-opened my eyes to my current status.

Since I've rambled quite a bit, here is the bottom line - his recommendation? Do 'nothing' for now. On the one hand, this is fantastic, on the other, as someone with a demon called cancer living inside him, doing 'nothing' is one hard pill to swallow. After listening to and letting his recommedation sink in, it really makes sense. The highlights are this; the bone tumors are 'attached' to the bone, not attacking or destroying from within the bone. Two, chemo is still working, we need to allow it to complete it's full course before we jump into the next treatment. The doctor advised us to approach our treatment strategy as one would any chronic illness. To fully consider my symptoms and current condition when making treatment decisions and making sure we reap the full benefits of each treatment. He was quite complementary regarding how we and our doctors have managed my case to date. So we return to Kansas City with orders to watch a few new blood markers because given my condition, the PSA level should not be the exclusive marker to track the activity of the cancer cells. Details of the new markers will be shared in a future blog.

The doctor also provided a lot of hope for the future. There a number of drugs in clinical trials that are or may become available when I may need them in the months and years ahead. It is the current research and clinical trials that reinforces our hope.

Our experience with MD Anderson this time was so different than in 2005. 180 degrees different and in a wonderful way. The compassion, and strategic approach that the staff shared with us was exceptional. Primarily, we credit this experience to Dr. L and his staff. The other factor is that Mary and I have matured in our knowledge and approach to managing this beast called prostate cancer.

On my way out....

Before I head out I thought I'd share two things.

First, there was a bit of good news today as it relates to treatments.

Here's the story from Bloomberg.

Interesting note, the research was funded via the Prostate Cancer Foundation. Perhaps
FLHW.org is doing some good!

Second item is from another, more prominent PCa blogger. I may have mentioned him here before? Dana Jennings, (a New York Times editor writes each week about coping with an aggressive form of prostate cancer) His latest blog is here. His words say so much better was I was trying to get across at the end of my last blog.

Stay tuned, more from the road.....

Guarding my excitement

After receiving a call on Wednesday confirming our appointment in Houston, we scrambled to make the logistical arrangements.
With just 7 days to line everything up, we were scrambling to find airfare that didn't cost us over $1,000!! As he has in the past a very dear friend stepped up with a few frequent flyer certificates. The are some people that can not be thanked enough, he is one!

So now I find my mental state to be somewhat the same as four years ago (see this post). I really hope everything we went through to get this appointment pays off. The doctor we are seeing is the Chair of the Genitourinary department at MD Anderson. He is an extremely accomplished oncologist. We are hoping and praying that he will have insight into a treatment or a trial that fits my case better than others we know about. I write this with extreme caution, as I don't want to get my hopes to high.

In addition, Mary and I ever so slightly disagree on parts of the trip. I personally am ready to try just about anything beyond phase three, placebo controlled trials, She wants to proceed perhaps a little more cautiously. She is concerned about compromising my current quality of life. I'm tired of caution and feel our approach over the last four years have been pretty conservative. As always, we'll take it all in, discuss and come to a decision that we both believe is best.

I know I have said this repeatedly, but at times I can't believe how much I have changed. When I read the post I linked to above, I also read all the posts from April 2005. In some ways the words sound like someone else wrote them. It seems a lifetime ago. So much has changed, yet one crucial thing remains, I still have advanced, non-curable prostate cancer.

It's spring in Kansas City and I love it. I didn't have to look too far over the past two days to appreciate this; the red bud trees are blooming, spring flowers are everywhere and the sound of lawn mowers filled the air. I look forward to rose blooms, moon flowers, fresh garden vegetables and cool spring nights sleeping with the windows ajar. The sound of trains throughout the night and birds in the morning. For me, it's THE time of year!
It's also Holy Week. With that comes so many reminders of the sacrifices that were made for each and every one of us. I plan to make time this week to further reflect on what this means to me and how my faith had gotten me though the last four years.