Advanced Prostate Cancer

The rebound

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -

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.

Worries come creaping back

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -

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.

Flight 922

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -
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.

The numbers can drive you crazy

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -
The PSA (Prostate Specific Antigen), the primary marker used to diagnose, track and manage a patient with prostate cancer is at best a confusing indicator. There are men dealing with advanced PCa that have low PSA and high levels of pain. There are men like me that have high PSA and little to no pain. Then there are cases everywhere and in between.
Another idiosyncrasy regarding the PSA test is the differences in labs. Since I started this journey I have always been advised to stick to one lab, due to the variances in the processing between labs.  My current state is a perfect example. In January I began traveling to Atlanta as part of a clinical trial for a promising drug called Abiraterone. To date I have had three PSA tests in Atlanta and each time I have had a PSA five days later as part of my routine, monthly Oncologist visit in Kansas City.  The differences in the tests are reflected in the table below:
Date:     KC                         Atlanta:
1/27      349                         200
2/24      356                         250
3/24      403                         293
As you can see, not only does the overall number vary greatly, the percentage of change is completely different. As a patient this can drive you crazy, believe me! Mary is particularly frustrated with the lack of explanation and frankly, concern with respect to the variance in test results between the locations. However, we have repeatedly questioned it and been reassured by both doctors that it is standard practice to have a variance, sometimes even significant variance between labs. At this point in time, we don’t have much choice but to accept it. Looking only at Atlanta the encouraging aspect is the trend line is slowing. January to February my PSA increased by 25% month over month. February to March my PSA increased 17%.  Looking at my KC PSA scores the January to February, the increase was only 2%. February to March my PSA went up 13%.
What does all this mean? Where does it lead? No where really. Since entering the clinical trial back in January we agreed that aside from a crazy increase (perhaps doubling) in either my PSA or excessive symptoms (pain), we would give it six months as recommended by Dr. A. With the trend slowing and pain mostly non-existent we stay the course for at least another month and God willing much, much longer. Patience is a virtue.  We are just anxious to see the PSA decrease to signal to us that we are finally successfully managing the cancer.

Serenity

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -

It’s not quite 7am, March 24th, 2011
I am writing this while in the air between KC and Atlanta as I make my fifth trip to see the Oncologist running the prostate cancer clinical trial in which I am participating.

I currently find my mind wandering to a place I’ve been successful in avoiding since I was diagnosed six years ago. The place I refer to is of course ‘worry’. I worry when and if this current treatment will begin working. Time will tell and by late Friday or Monday morning I’ll have the answer I both seek and fear.

This rant is the part I suspect is the hardest for people to understand. Perhaps I’m to blame for not spending enough time on it here. To me worry is whining. That is likely not a very good attitude to take, but I question if there is another better attitude to fight this fight with? My emotions are all over the place as you can probably tell.

I have options beyond this current medication but they are not the greatest. Two involve a return to chemo. One of the chemo options, though recently approved for use in cases like mine, is once again not a cure. There are several drugs in an earlier trial stage then my current treatment, but those become a matter of logistics since none are available in Kansas City.

Beyond the selfish worries my thoughts turn to my family, instigating additional worries. My son, being fourteen, is at a critical stage in his life. He’s about to start high school and with that his world, challenges, experiences and such are set to grow exponentially. I want to be there as he matures through his high school years. Then there is Mary. Twenty-four years ago she came into my life. She is everything to me, my best friend, my confidant my heart and my soul.

We’ve known for six years that our dreams of a lifetime together, of spending our retirement years together were in serious jeopardy. There are times like these when it really doesn’t matter that we may have discussed the changes to our grand plan, worry, pain, and mental anguish are at the forefront of my mind today. I’m hesitant to even type the words ‘I want it all to go away’ simply because those words ring of denial. It is what it is. I have stage IV prostate cancer, I’m struggling through a temporary funk, but I’ll come out on the other side alive, mentally stronger and a better person for having gone through this experience.

A very good friend, Dr. S. and I discussed the power of the ‘Serenity Prayer’ once, the discussion is quite clear to me, like it was yesterday. As I write this from 33,000 feet I had to pull the prayer card that Mary had gotten me from my wallet and recite it three times. It gives me comfort right now and I would like to share it with you…

God grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.
Living one day at a time,
enjoying one moment at at time,
accepting hardship as a pathway to peace.
Taking, as He did,
this sinful world as it is,
not as I would have it,
trusting that He will make things right
if I surrender to His will.
That I may be reasonably happy in this life,
and supremely happy with Him,
forever in the next.

I’m tired

Abiraterone, Advanced Prostate Cancer, David Emerson, PSA -
I am fairly certain my friends, family, and those around me on a daily basis would attest to the fact that I’m not a complainer.  I don’t dwell on my situation or current condition, nor do I focus on the negative side of a situation, but I have to say it at least once, I’m tired.
I’m tired of:
  • the little aches and pains. 
  • taking all the medications.
  • worrying if the current treatment is working. 
  • trying to live a normal life when my life is anything but normal.
  • worrying about the future, and for me that’s like six months from now!
  • not playing disc golf.
  • the words ‘Prostate’ and ‘Cancer’

For you regular readers you should recognize this as one of my moments. We now return to your regularly scheduled programming!

601

Advanced Prostate Cancer, David Emerson, disc golf, spring -

This post marks quite a milestone, it’s number 601! That’s approximately one-hundred per year for the last six years!  I never thought I’d have this much to say or share but I proved myself wrong.

Spring has arrived in Kansas City and that means rain.  We received rain showers several times last week.  More importantly the rain means we will also have beautiful spring mornings.

It was 52 degrees when the guys teed off at disc golf Sunday morning. I was the score keeper once again.  Growing up in St. Louis I was familiar with large, planned urban parks (Forest Park). In Kansas City we have Swope Park. Like Forest Park it contains the Zoo, outdoor theater (Starlight), a golf course and in Kansas City’s case, a beautiful disc golf course. Sunday morning, amongst other sightings and sounds we saw Missouri Blue birds and an eight point white-tailed deer. It pains me to be on injured reserve as I rest my hips for the time being, but the sights and sounds of nature, along with the time with friends makes up for my lack of participation.

It was close to 80 Sunday so I cleaned up various winter time debris in the garden, move some hostas and lilies and piddled around in the yard and enjoyed the beautiful weather.

Thursday it’s time for another day trip to Atlanta, I can’t wait to see how Spring has enveloped Hot-Atlanta!

Provenge Expansion

Advanced Prostate Cancer, David Emerson, Dendreon, Provenge -
Last year at this time I had the opportunity, along with 40 other prostate cancer advocates, to tour the Dendreon manufacturing facility in New Jersey. At the time the company was weeks away from FDA approval of Provenge and construction of the expanded facilities were in full swing. As I wrote at the time, it was very, very impressive.

Just last week they were finally granted FDA approval to begin using the expanded capacity, increasing from twelve to forty-eight stations.

This is great news for many, many men throughout this country battling against the advanced stages of prostate cancer.

There are two other sites currently under construction, in Georgia and Southern California.  Dendreon is pursuing approval for these two sites and hoping to bring them on line later this year.

A good day and great news for the PCa community!

….And finally…..Happy St. Patrick’s Day!!!!!!!! 

McCain Aiming to Eliminate Prostate Cancer Research

Advanced Prostate Cancer, CDMRP, David Emerson, John McCain, ZERO -
I have always tried to avoid the politics of prostate cancer but in this case, it cannot be avoided.
Please go read the most recent copy of “Zero Hour”, the newsletter from zerocamcer.org
This are just a few excerpts:
The Congressionally Directed Medical Research Program is a central component of the war on cancer and has been responsible for helping to move nearly all prostate cancer drug advancements in the last five years.
If Senator John McCain, a war veteran, former POW and 3-time cancer survivor, gets his way, more than $300 million in medical research will be eliminated from the Defense Appropriations bill to help pay for the Iraqi police force.

Though I am a big proponent of smaller government and less spending, this is ridiculous.

Please go read the newsletter and if you agree, please act!

Monday’s a pain but Thursday’s a grind

Abiraterone, Advanced Prostate Cancer, Ash Wednesday, Atlanta, David Emerson, spring -
I made my third bi-weekly trip to Atlanta this past week. Although I’ve got the thirteen hour round trip down to a science, last night I realized how quickly it has become a real drag.
I’m getting quite a bit of reading done, and I sleep really well on Thursday nights after the trip .However, half way though the three month bi-weekly process, I’m ready for it to be over.  It’s very worth every trip if we see a reduction in my PSA and we are able to regain some control of the caner with the Abiraterone.

There is a rumor the same trial will open here in Kansas City, perhaps in April. That would be ideal since I have already booked the flight for the next three trips. I have held off the April 24th trip because of this and because the airfare on that particular date is $300! The chances of the rate changing are slim, but you never know.

I saw blooming dogwoods while I was on the MARTA Thursday and that means one thing, Spring is here. My favorite time of the year! Ash Wednesday, Lent and soon Easter. Our hyacinth are peeking up and I really cannot wait to get outside and spend time in our yard.

Thursday’s grind will certainly get tougher over the next few weeks as the signs of Spring continue to increase.