Advanced Prostate Cancer

2011 Prostate Cancer Doubles Shootout

Advanced Prostate Cancer, Charity Disc Golf, David Emerson, FLHW -
Last Saturday 87 disc golfers competed in the 4th Annual FLHW ‘Prostate Cancer Doubles Shootout’. I would like to thank our Board members and volunteers who did a wonderful of job putting this event together.  The spirit of this event is always inspiring!!!

There were 5 teams from St. Louis, two from Marshall, MO, one each from Topeka and Wichita, KS as well as one from Lincoln, NE.  The rest of the players were from Kansas City and surrounding areas. Though the weather was chilly with an overcast sky the winds died down for round two and the afternoon was quite enjoyable!

Lunch as always included our infamous salmon burgers, and much more. We were entertained by a champion Frisbee dog, Towser and the players finished the break with a Ring of Fire filled with tons of prizes!
Due to my love for the sport, this might be my favorite event of the year. It also ranks up there because of the underling purpose of the event. Yes, it is great to raise some money for the cause, but more importantly, I appreciate the opportunity to address a group of men and women that are at or near the optimal age for starting to be concerned about Prostate Cancer and improving their health in general. At the end of the day, if one person gets tested or begins having conversations with their doctor about their health, then it’s mission accomplished!

An absence

Advanced Prostate Cancer, David Emerson, FLHW, PSA -
It’s been a few days since my last post. Sorry, but I’ve been extremely busy! In addition, there is not a lot to report from a health perspective. I continue to feel fine and in fact, perhaps even a little better overall.

Earlier this week Brad had his Confirmation. It was a touching, spiritual Mass and it was good to have family there as well. We had a nice celebration over the weekend. I cannot express enough how proud I am to be his father. How he has handled my condition for the past six years as well as how he has managed other situations make me proud beyond words. He has developed emotional strength and maturity well beyond his years.  He and I will be spending a lot of time together in the next several weeks, and for that I am both thankful and blessed.

Last Friday we held the 3rd annual ‘Friday Night in the Greenhouse’ event. It was beautiful evening and we were delighted to see a number of old friends and many returning supporters of FLHW. It is a nice family event and we raised $1,800 for prostate cancer research and promoted the importance for men to be tested for prostate cancer!

Tomorrow is the 4th annual FLHW Prostate Cancer Doubles Shootout, a two man disc golf tournament. This year will be the biggest, with more players and more prizes than ever before! Once again the weather forecasts for it to be a little cool, but dry.  It was that way last year and turned out to be quite perfect. Looking forward to spending the day outdoors with friends and family. I’ll post plenty of photos and perhaps some video in the days ahead.

Have a great week-end!

Are you kidding me?

Advanced Prostate Cancer, David Emerson, MARTA, University of Kansas Cancer Center, Zytiga -
I am always reluctant to celebrate good news too soon after hearing it. There is usually a ‘but’ attached to its arrival.

In this case it was last week’s announcement of the FDA approval of Abiraterone (the clinical trial medication I am currently taking). Once the drug received the official approval, all work on opening up additional trial sites ends and the focus for the drug manufacturer becomes the launch of the product. While this makes sense from a business perspective, what this means for little old me is that the University of Kansas Cancer Center drug will not be an approved trial site. It also means I will be returning to Atlanta monthly until my insurance company begins approving the use of the drug for its customers.

Just another case of really, really bad timing and that is the positive spin on what just happened. Actually, I remain thankful that I am receiving the medication in the first place and am confident that eventually it will all work out.
So it’s hello again Atlanta! Welcome me back MARTA train and to the cute little red Prius Zip Car at the Arts Center, you are on notice – I’ll be back for you a few more times.
I’m not even going to predict if late May will be my last trip, because it will likely be June, July or God only knows.

Exposed once again

Advanced Prostate Cancer, David Emerson, JnJ, Zytiga -
Tuesday I had the pleasure of speaking to a large group of pharmaceutical employees. I traveled to Newark on Monday and Tuesday morning at 11:30 I exposed my heart and soul, the good, the bad, the ups and the downs of this journey. I really missed having Mary there this time.  She is my rock.

The audience was warm and receptive.  I hope that it was well received. I appreciate these opportunities, I  enjoy sharing my story, but even more, I enjoy educating people about the disease. I look at it as one small victory at a time. If just one or two people leave that meeting and either get checked or encourage a loved one to be checked, it was well worth my time I would consider it a success. If not that, perhaps someone heard me when I encouraged the audience to eat better and exercise more and to not wait until something happens to make a change. I guess I’ll never truly  know, I always leave these events feeling hopeful.

I met several really wonderful people again and I even discussed disc golf with a few people before lunch. Seems I should have brought a few discs and played a course at Rutgers University. Maybe another time!

As I mentioned before, this month is very hectic, so this is all I have time for now.

Guess who’s at it again?

Advanced Prostate Cancer, David Emerson, JnJ, Zytiga -

Tomorrow I’m off to Newark, NJ where I will have the privilege of sharing my story once again. I will be speaking in front of several hundred marketing and support employees for a large pharmaceutical company. It is an honor to share my time with them and to provide a brief glimpse of prostate cancer from the patient’s view.  I will basically be repeating my presentation from March, and sharing my six year journey with prostate cancer.  http://flhw.ddmpreview.com/the-big-speech/

It’s not one-hundred percent serious. I try to work in a little humor, as to not completely depress the crowd after 30 minutes. As I was preparing my notes I came across the slide where I explain that although I am honored to be there, I am not standing up there alone, but rather representing all the other men fighting the disease. I list the names of many of the guys I stay in touch with on line and then I show a list of five men whom we’ve lost over the years.

What stopped me was the fact that I need to add two names to the list. One was the father of a man who resides here in Kansas City. The other man’s daughter had reached out to me years ago when he was first diagnosed. I was quite saddened last week when I received emails from both letting me know their fathers had passed.

This is the truly sad part of this disease, when good men die. And now I find myself speechless. I pray this doesn’t happen on Tuesday morning. I will try my best to maintain my composure as I share my story, but there are times like this when I am reminded how much I hate this diesease!

Light the Whitehouse Blue

Advanced Prostate Cancer, David Emerson, Light the Whitehouse Blue, PSA -

A few weeks ago I added a link on the right side of my blog, you may have noticed the ‘Light the Whitehouse Blue” link.

This is a a wonderful effort and attempt to get the President to ‘Light the Whitehouse Blue’ during September as it is during other months for other cancers. The link to sign the petition is at: http://lightthewhitehouseblue.org/

If you have a minute click on the link to help support this effort, seriously it will take less than a minute!

When down is up…

Abiraterone, Advanced Prostate Cancer, David Emerson, PSA -
Since January, when I started my current treatment, I have had my PSA checked by two labs, four days apart. The first test is done in Atlanta as part of the clinical trial while the second is done in Kansas City as part of my regular monthly Oncologist appointment.  The difference in the test results are expected, one of the first things we learned after being diagnosed was to always use the same lab. Though we have changed labs a few times (due to changing doctors) we have always focused on the trend and not individual test scores. 
In my last post I reported that though my test in Atlanta showed a slowing of the trend, my PSA was up again. Today I am here to report that my number from the lab in Kansas City is actually DOWN 17% to 336! Can I get a ‘HELL YES’!
Here are the raw numbers since January and a pretty chart of my PSA over the last few years.
KC
ATL
01/31/11
349
200
01/25/11
02/28/11
356
250
02/24/11
03/28/11
403
293
03/24/11
04/25/11
336
323
04/21/11

A small victory but still good news! I’ll be real happy when trend line is going down. I had a statistics teacher who use to say ‘Two data points make a trendline’, now I just have to wait 672 hours for the results of my next PSA test!

Up, however

Abiraterone, Advanced Prostate Cancer, Atlanta, David Emerson, PSA -

I received a call from Atlanta Friday morning with my PSA results from Thursday. Below are the four results I received from my trips to the doctor in Atlanta. For the record, January 27th was the day I started the trial.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Date          PSA        Rate of Increase

27-Jan      200
24-Feb     250          20%
24-Mar    293          15%
21-Apr    328           11%
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
At first blush, yes my number is up again, but the good news is the rate of increase continues to drop.
Additionally, when I talked with Dr. A Thursday he indicated that he has had several patients that he took off the trial after two to three months. Unlike my case, these men continued to see a rapid rise in PSA and, more importantly, a progression in bone pain. Although my number is up, the rate is slowing and the number of and severity of the aches and pains I experience are down from the previous visit.

Today I am seeing my local Oncologist. The bad news is that KUCC is not yet able to accept patients for the trial. I am less hopeful that they will be ready by May 20th, the date of my next check-up. I have made a few inquiries through some connections and should have a better idea by tomorrow.

In the past few days I received two separate emails with sad news. We lost two more men to this dreaded disease. One in his late 60’s the other in his late 70’s. Some what older than me, but still hard on both families.
In one case the man’s daughter said that though her dad was not much for computers, he always asked ‘how’s the young guy with the blog doing?’ From time to time she would update him on my progress and she indicated in her message he found it inspiring. That makes me feel good, I just wish the entire circumstance was different.

How many more have to lose their battle before we make a break though?

How many? A lot when you count them all.

Abiraterone, Advanced Prostate Cancer, David Emerson, hrpca, Kenny Chesney, PSA, Zac Brown Band -
As much as I try there are times in this journey, like right now, that I cannot help but spend a lot of time wondering and worrying. Overall I remain positive, but it’s only natural that I ‘suppose’ in my thoughts. The good news is starting May 1st my life is going to get rather busy (busier than it currently is, if that is possible!) and that will provide less free time for my mind to wander.
I have another speech early in the month, two events for the foundation, one on the 6th and the other on the 14th, Brad has confirmation, graduation and then we are taking a trip to Florida.  June will include Mary having a medical procedure of her own followed by substantial recovery. In July I will be going to Chicago to see U2 with a few friends, followed by my 30th High School Reunion in St. Louis.  At the end of the month we are going to the Kenny Chesney concert with one of my favorites, the Zac Brown Band. For the latter event I will finally be meeting a fellow PCa survivor and dear friend Tony. After all of this, Brad will be starting high school in August and well, life will go on. I’m tired just reading this list!
In this midst of all this hustle and bustle, I really need my trial medication to kick in. My PSA needs to stabilize at a minimum and actually decrease significantly. If not, what lies ahead is some combination of Provenge, chemo, and perhaps other clinical trial drugs. Some MAY be more promising than others, but it is the current medication we are counting on for results.
I’m going to do my best to focus on the list above, yard work and various home repair projects we are in the midst of currently. There are times when I am real good at it, there are others like now when I struggle. In the end, things could be far worse for me, so I stop, say a prayer and count the many blessings in my life.
Tomorrow is what I really hope is my last trip to Atlanta. We are very happy with the medical staff in Atlanta, it is just that the logistics are time consuming, expensive and ultimately exhausting. My case will be transferred to my regular Oncologist locally at the KU Cancer Center. Additionally, per the trial protocal, my visits will become monthly instead of bi-monthly. Your prayers for a lower PSA, or at a minimum a stable PSA would be greatly appreciated.