1,832 Choices

1,832 Choices

Advanced Prostate Cancer, Charity Disc Golf, David Emerson, Prostate Cancer Foundation -

Over the weekend I finally found the time to pull together all of the pictures from our recent disc golf tournament. Funny how much more time I have when I don’t play disc golf!

It turns out I have over 1,800 pictures from the event!
Below is a link to the video. The video is approximately 380 of the best shots with a music
soundtrack to boot. It’s about 22 minutes long but well worth your time.

The statistics for the day are in the closing credits so you’ll have to watch the whole thing to find out how we did!

A calamity of errors

Advanced Prostate Cancer, David Emerson, DVT, PCa -

I like to think that I’m a pretty calm, level headed, easy going person and I think those that are close to me would agree. I have come to realize this can create problems, problems that result from people thinking it’s acceptable to provide mediocre service.

Tuesday we went to the cancer center for my four week check up and Lurpon shot. As usual, I went to the lab first to provide a few vials of blood to be sent to the lab. Simply routine I’ve done this hundreds of times, literally.

Next off was a meeting with the doc, and here is where the frustration began. It was a calamity of laboratory errors to be kind.

First, the two new tests we started last month, in order to track the two markers suggested by Dr. L in Houston, were not completed.

Yes, I wrote that correctly and you read it correctly! Even though I provided specimens in late April the lab completely screwed this up.

The urine test was never run and the lab decided that the blood test to break down alkaline phosphate was not needed. Can you believe this?

Someone in the lab decided that because the total level was within the ‘normal’ range, breaking it down further was not necessary. I was and remain furious about this one.

After this part of the discussion with the doc there was not much else we could do except provide more sample and move on. Where we moved on to didn’t make me any happier. It seems the blood samples I had provided earlier in the morning failed to include a sample for PSA. Can you believe it? After four and a half years someone forgot to request the blood draw for a PSA, it was simply left off the lab order!

By the way, later on in the day we did get my PSA; it’s up to 51.13

Next up, oh yes there is more, was my ankle. This part actually contains good news. I’ll just admit it up front; I over did things last weekend. I played disc golf everyday from Friday to Monday, I worked in the yard Saturday and Sunday and over all was on my feet way to long. By Monday night my right ankle, the same one I broke almost three years ago to the day, was pretty swollen. Due to the fear of another blood clot we discussed with the doctor and agreed to run a new ultrasound of my right leg. The good news is nothing was found. After keeping my leg elevated as much as possible over the last few days I can report that it has returned to normal.

Finally, in regards to my PSA, yes we are concerned but we have to stay on track with what we agreed to after leaving Houston. It’s a very hard pill to swallow, it creates anxiety, tension, worry, fear and more. That being said we have to remain faithful that the doctors know what they are doing and the Lord is guiding us down the right path.

Many, many thanks to all of you for your continued prayers, they are powerful and help us more than words can express.

Short, sweet and to the point

Advanced Prostate Cancer, David Emerson, disc golf, PCa, Zac Brown Band -

I’m finally resting after four straight days of disc golf and yard work.
It’s cool, cloudy and raining off and on, so I’m catching up on paper work
for the foundation and paying bills.

As I sit here I’ve got iTunes up and just fired up Zac Brown Band, the song Toes. The course contains the line “..life is good today..”

and it is my friends, it truly is good today.

Younger Men with Prostate Cancer

Advanced Prostate Cancer, David Emerson, PCa -

I know it’s been a while since I had anything personal to say, but I’m just taking the doctor’s advice and getting on with living my life (to some extent).

We are in the midst of six incredibly busy weeks; I had to travel twice on business, we had the FLHW disc golf tournament, a graduation, a very special wedding in June that both Mary and I are a part of, wedding showers, rehearsal dinner, another charity event for FLHW, well you get the picture.

Below is an upcoming article that I received from a friend, Skip’s Twitter feed.

Hope you all have a wonderful and safe Memorial Day weekend. God bless all the men and women in uniform, both past and present!

Finally – the the lady who commented on my last post, you can send me an email at: ‘info at flhw dot org’ (spelled out to avoid spammers).
~~~~~~~~~~~~~~
While young men with prostate cancer have a low risk of dying early, those with advanced forms of cancer do not live as long as older men with similar forms of the disease. That is the conclusion of a new study published in the July 1, 2009 issue of CANCER, a peer-reviewed journal of the American Cancer Society. The paradoxical findings indicate that there may be biological differences between prostate cancers that develop in younger men and those that develop in older men, and that uncovering these differences may help tailor screening and treatment strategies for patients based on age.

In general, a younger cancer patient has a better prognosis than an older patient with the same type of cancer. Few studies have analyzed the health of younger vs. older men after diagnosis and treatment for prostate cancer, though.

To investigate the impact of age on prostate cancer prognosis, Daniel Lin, M.D., of the University of Washington and colleagues designed a study to examine the association between age at diagnosis and health outcomes in men diagnosed with prostate cancer in the United States. Mining the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) database, the investigators identified 318,774 men diagnosed with prostate cancer between 1988 and 2003. Men aged 35 to 74 years were stratified by age at the time of diagnosis, and the researchers examined differences in tumor characteristics, treatment, and survival within each age group.

The analysis revealed that, over time, men are being diagnosed with prostate cancer at younger ages, likely due to more extensive screening. Also, younger men are more likely to be treated with prostatectomy, have less aggressive cancers, and have a better chance of survival after 10 years compared with older men. However, among men with advanced prostate cancers, the youngest men (aged 35 to 44 years) have a particularly poor prognosis compared with older men. These young men are more likely to die from cancer or another cause sooner than older men with similar forms of cancer.
While the reasons for this unexpected finding are not clear, the researchers suspect that young men with advanced prostate cancer may have biologically more aggressive forms of the disease than the forms that are diagnosed in older men. Additional studies are needed to determine what, if any, underlying differences exist between advanced prostate cancer found in young men vs. those found in older men. These studies may help clinicians improve screening in young men and could ultimately lead to the development of better treatment strategies for these patients.

###

Article: “Treatment and survival outcomes in young men diagnosed with prostate cancer: a population based cohort study.” Daniel W. Lin, Michael Porter, and Bruce Montgomery. CANCER; Published Online: May 22, 2009 (DOI: 10.1002/cncr.24324); Print Issue Date: July 1, 2009.

Words to live by…

David Emerson, PCa, wordle -

It’s been a long time since I created a ‘wordle’. If you are familiar go to www.wordle.net. You can link to a blog or just provide a list of words. This was created using all of the tags I have used in my blog over the years. Click for a link to a larger version.

Wordle: Prostate Cancer

Caution – flying plastic!

Advanced Prostate Cancer, Charity Disc Golf, David Emerson, FLHW, Kansas City Disc Golf, Prostate Cancer Foundation -


This evening, twenty four hours later, I still find myself exhausted! However, without a doubt, it was worth every minute, every step, every throw!

Yesterday we held the 2nd Annual FLHW Disc Golf Tournament. Though the weather started off a little cool and breezy, by mid-day, the winds subsided, the clouds passed, and the sky was a clear blue with a warm sun shining down on us. The day ended up being absolutely perfect.

We had 78 disc golfers and were privileged to play on a private course, located on an unbelievable piece of property here in southern Johnson County, Kansas. The owner is a wonderful and extremely generous man to whom Mary and I owe much gratitude.

I’ll provide more details and many, many more pictures in a few days. We are very pleased that we raised somewhere in the neighborhood of $3,000. All of which will be donated to the Prostate Cancer Foundation (PCF) to support the research needed to develop improved treatments and a cure for advanced Prostate Cancer.

Mary and I would personally like to thank each of the Board members who generously dedicated their time to making this event a success, all of the sponsors, volunteers and players that shared in our mission for a cure. God bless all of you!

Fwd: There will be tears.

Charity Disc Golf, David Emerson, Kansas City Disc Golf -

I have been in Orlando all week, away from Mary and Brad.

During this time and as I mentioned in my last entry, we lost a dear friend.

I haven’t really had the opportunity to reflect and let the memories flow or to take a minute to be, if nothing else, sad.

I sense that tonight, after Brad is asleep there will be tears.
—————
Tomorrow will be crazy busy as Mary and I prepare for Saturday’s second annual FLHW disc golf tournament. At this point I would guess we will end up with close to 100 disc golfers. The weather is supposed to be ideal, the anticipation is unbearable at times. I look forward to the day and once again having the opportunity to promote the need for early detection and support of the research to find a cure for PC.

Pictures and a full update in a few days.

A repeat performance? and Sea Creatures

David Emerson, disc golf, Glucosamine, kansas city corporate challange -

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!

alkaline phosphate, CTC, David Emerson, hrpca, PSA -

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

Charity Disc Golf, David Emerson, FLHW, florida, Provenge, spring -
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.