April 28, 2011

It's raining good news!


This was just announced! Great news!

No immediate impact to me and the trial since JnJ will continue the trial until this works it's way through all the Government and health insurers.

Light the Whitehouse Blue

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!

April 26, 2011

When down is up...

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.


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!

April 25, 2011

Up, however

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?

April 20, 2011

How many? A lot when you count them all.

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.

April 17, 2011

The rebound

Since the last post a lot of things have happened, all of them good.

First of all, I'm feeling much better mentally and physically.
The occasional left hip/femur pain has been gone for days. I've been able to avoid Advil for weeks
and mentally I'm back on my game.

I spent six hours yesterday painting and redecorating one of our guest bedrooms. Today we got up and walked four miles in the 23rd annual 'Trolley Run'. This year it benefited a wonderful organization that my 3 year old nephew utilizes, CCVI (Children's Center for the Visually Impaired). There must have been 12,000 runners and walkers. It was amazing and felt really good to walk on such a beautiful morning!

After words I came home, spent about an hour in the yard and then put the finishing touches on the guest room.Tonight Brad and I attended a Confirmation meeting at church and now the family is relaxing watching a little television.

So the secret? Just stay incredibly busy! Mary asks me to slow down all the time, but I can't. I won't if this is the end result.

April 13, 2011

Worries come creaping back

It never ceases to amaze me how fast the days are flying by! Is it really the middle of April already? Wow.

Before I get to me, there are a few guys out there I have been thinking about a lot today and add to my worries. I pray for a long list of fellow PCa survivors regularly, but there are two that are on my mind today.

Dan Z celebrated his one year anniversary. My guess is, like the rest of us, it's rather subdued. I hope he does nothing more than spend the time with his family. After all, does anything else really matter?

There is another young man, and when I say young, Gabe is only in his mid-thirties. Today he found out his PSA jumped considerably. He was first diagnosed last summer and was hoping to manage his case for as long as possible. Now it appears he might have to make a treatment decision sooner versus later.

Then there is me. Lately I find myself waiting, worrying, wondering if the clinical trial drug is ever going to work? If not, then what? Worry, it's beating me down, but I'm not out.

A short post I know, but this is where I'm at.

April 06, 2011

Flight 922

Tomorrow is what I am hoping will be, my second to last trip to Atlanta. As I’ve written here before, I have the trip down like clockwork, however it’s getting old. To get right to my point, I really hope KU Cancer Center gets their approval for the trial in the next few weeks. If they do get approved, I can stop making these trips and the timing will make the transition smooth and easy.

Spring is in full bloom in Atlanta and I hope I can find a few minutes to enjoy it tomorrow. 
The challenge will be to dedicate the free time to two work conference calls right after my doctor appointment, so the down time will be quite limited on this trip. Ultimately, it will make the waiting time pass quickly.

The last two weeks went by so fast, they are a blur. Nothing eventful happened and almost the entire time was pain free. My streak of three weeks without Advil ended yesterday. I think between yard work on Saturday, the amount of walking over the weekend and the fact I worked out Monday morning,  I might have over done things just a bit. On the proverbial doctor's scale of pain (1-10, 10 being the worst), this is a 2.5 tops. The good news is it only bothers me when I walk and it’s just something I live with from time to time.

With the arrival of Spring I have a lot of plans for our yard and gardens. I’m just praying the body cooperates! I'll just have to pace myself, something I struggle with all the time.