University of Kansas Cancer Center

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.

5 hours of pain followed by 90 minutes of pleasure!

Advanced Prostate Cancer, Blue Koi, David Emerson, PSA, University of Kansas Cancer Center -

First and foremost, PSA: 36.36, down a fraction from last month.

It’s all about stability right now and this was great news. I was pretty worried before the appointment.,

Overall yesterday’s visit to the cancer center was a great big drag! As usual we arrived at 8:30 for labs, then our meeting with Dr. V, and then it was off to treatment. On a normal day we would have been done and on our way by 11:00am. Everything was proceeding as expected until I checked in at the treatment center at just before 10:00am. We waited, and waited and finally were called back at 11:40ish. One thing led to another and it turns out we didn’t leave until 1:15pm, nearly five hours later. I’m not sure what the issue was? Too many patients, too few nurses, but it was frustrating! Oh well, I’m just hoping it was an anomaly.

Mary and I were famished at that point so I agree to have lunch with her at the Blue Koi. The history on the Blue Koi is this; it was one of our favorite places to eat until last summer. We would go there for lunch everytime I had treatment or doctor appointments. However, after about my third or fourth chemo treatment, I couldn’t eat it anymore. It tasted horrible. It was a shame that the one thing chemo had to ruin was my ability to eat at one of our favorite places.
So yesterday we returned for the first time since last summer. The result? All is well, it was wonderful, again!

After lunch I returned home and finished some work for a few hours before my next appointment, my massage. Mary had given this to me for my birthday back in January. This was only the second time I had a massage. Te first was over two years ago in Tucson. This time it was quite a bit longer, but I have to tell you, the 90 minutes went by like five! Bottom line, I slept like a baby and am feeling good today!

I’ll be……

Advanced Prostate Cancer, David Emerson, Edwin McCain, PCa, University of Kansas Cancer Center -
Perhaps it’s four years of androgen deprivation therapy and the subsequent lack of testosterone circulating in my body, but I am so much more emotional than I used to be.
Last night we decided to stay in, have a nice dinner and watch a movie.
We split a few pounds of king crab legs, a bottle of wine and laid back to watch
“Nights in Rodanthe” with Richard Gere and Diane Lane.
The movie itself was terrible. It was a poor attempt to recreate some chemistry between these two that can be found in the movie from 2002, “Unfaithful“.  Without revealing too much, it takes a rather sad twist at the end, and even as bad as it was, there I was with tears in my eyes. Mary asked “Are you crying?”. My response, “Can you believe it? As bad as this movie is, here I am getting all emotional about it!”
So now, here I sit, working on a Power Point deck for our church auction next Saturday. I am shuffling through iTunes at the same time and on comes “I’ll Be” by Edwin McCain. Here’s the video.   I find the whole song to be beautiful, such that it makes me cry nearly every time I hear it. Click on the link, and pay particular attention to the chorus.
———————————————————-
Edwin McCain; I’ll Be
The strands in your eyes that color them wonderful
Stop me and steal my breath.
And emeralds from mountains thrust toward the sky
Never revealing their depth.
Tell me that we belong together,
Dress it up with the trappings of love.
I’ll be captivated,
I’ll hang from your lips,
Instead of the gallows of heartache that hang from above.

[Chorus:]
I’ll be your crying shoulder,
I’ll be love’s suicide
I’ll be better when I’m older,
I’ll be the greatest fan of your life.

And rain falls angry on the tin roof
As we lie awake in my bed.
You’re my survival, you’re my living proof.
My love is alive — not dead.
Tell me that we belong together.
Dress it up with the trappings of love.
I’ll be captivated,
I’ll hang from your lips,
Instead of the gallows of heartache that hang from above

[Chorus]

And I’ve dropped out, I’ve burned up, I’ve fought my way back from the dead.
I’ve tuned in, turned on, remembered the things that you said

[Chorus:]
I’ll be your crying shoulder,
I’ll be love’s suicide
I’ll be better when I’m older,
I’ll be the greatest fan of your…
I’ll be your crying shoulder,
I’ll be love’s suicide
I’ll be better when I’m older,
I’ll be the greatest fan of your life.

The greatest fan of your life.
…greatest fan of your life.

———————————————————-

All of this leads me to tomorrow’s appointment with Dr. V. I’m tinged with worry. However, I usually am before these appointments. This time I’m not sure what it is? Now that chemo is over, the question of what next lies out there like….well I’m not sure what it’s like? Over the past few days I’ve been having a little pain on my back, nothing severe perhaps a 1.5 on a 10 point scale. It’s just enough to make me wonder, to make me worry.
I guess this makes me normal.

Looking forward to …..

Advanced Prostate Cancer, chemotherapy, David Emerson, PCa, University of Kansas Cancer Center -

number 9.

Tomorrow, about twelve hours from now, I will be in the midst of chemotherapy treatment number nine.  I’m feeling a bit indifferent tonight; I feel great and in fact, overall I feel better than I have in sometime. Not that I have been feeling bad, it’s just I feel really good right now.

Taking advantage of weather in the 50’s today we played disc golf this morning (welcome back Pete, I really missed you).  Upon my return home I took advantage of the nice temperatures and my high energy level and proceeded to put up our outside Christmas lights. It only took me a few hours and I am glad that this chore is behind me. Next weekend we can focus on the inside decorations. That is, depending on the side effects from “old #9”!

I find it hard to believe that tomorrow I will be 3/4 of the way through this process. I want better results, a lower PSA number, and more, but I am a realist at the same time, and things are going extremely well.  I shouldn’t be greedy but I should thank God for what has happened so far in this process.

I probably say this to often but I live this terribly ironic life; I try my best to go on day after day with my head up, trying to remain positive, trying to laugh and live. All the while I carry this unbelievable burden called cancer. Not a cancer that can come, and begone in short order, but a cancer that goes on and on, unknown to most. There is nothing in my outward appearance that would even let anyone know what a cruel war is waging inside of me.

I am and will remain the commander, the General of this war – I will not be defeated without a fight. Fortunately, even after four years, the battle has just gotten underway.

The 504th hour

Advanced Prostate Cancer, chemotherapy, David Emerson, PSA, University of Kansas Cancer Center -

As we sit in the treatment room this morning, I thought I’d provide a peek into what it is we go through.

This, without exception, is the worst part of the cancer treatment process, in my mind.
It is not all the days and nights of little sleep, filled with stress and worry.
It’s not the scans, x-rays, poking and prodding.
By far the worst part of the treatment process is the 60 minutes (approximately) between the time my blood is drawn and the moment when we are given my PSA number. Perhaps it’s the build up, day after day, week after week, waiting, worrying, anticipating, and questioning, “Did the treatment have an impact this time?”.
Tick, tick, tick…..is the clock even moving? Where are the results? Can I read the look on the doctor’s face when he comes in the room? So, this is what we go through every three weeks (504 hours). Very little conversation, but the stress in the room could be cut with a very dull butter knife.
Did I mention, the nurse dropped off my test results a minute ago?
PSA: 34.47
That’s down from 39.57 three weeks ago!!!!
If you are curious, Mary wins the bet this month.
Even better news, only 502 hours until we have to start this process all over again!
Peace be with you all, enjoy the next 501.75 hours….

My own rendition of “24”

Advanced Prostate Cancer, chemotherapy, David Emerson, University of Kansas Cancer Center -

Though I’ve not seen the show, I feel like Kiefer Sutherland on a bad episode of 24.

In the last 24 hours (pun intended) the adage I repeat ad nausea has really come to fruition; it’s not all about me!!!

At 4:20am this morning my sister-in-law gave birth to twins. They just moved here last week from Chicago and perhaps the stress of the move accelerated the arrival of the two into the world. Thank God as of 10:00am this morning, Mom, Sean and Kaitlyn are resting comfortably!

My beautiful niece and her wonderful boyfriend Alex are now engaged! They have been dating for almost five years, they are both juniors at Kansas State University – another reason for me to battle on……a wedding!!!!

My brother Doug spent the night in the hospital. What started out as back pains a few days ago has turned into some type of Gall Bladder issue. He is having additional testing today, we’re are praying for good news.

Had she still been with us, today would have been my mothers 75th birthday, Happy 75th Mom!

Wow, what a span of twenty four hours!

Off to the treatment room!!!

39…48….Whatever

Advanced Prostate Cancer, disc golf, medical port, University of Kansas Cancer Center -

So today was monthly update day, month number 39!

First of all the trial, being what I believe to be a typical trial, works like this;
– I have to be off Nilandron for 6 weeks BEFORE I can enroll. That wasn’t clear until this morning.

I did a good job of biting my lip when the trial manager explained this to us. So now I will have bone scans, CT scans and a chest x-ray on June the ninth and my first treatment in conjunction with my 40th month appointment on June 16th.

I did receive my PSA, it’s up again to 48.87. I suspected it had climbed as I have had a few twinges lately that I knew meant something. Not pain but just little things that after three plus years of this were signs.

I’m going to call Dr. Van tomorrow to make sure we are OK to wait another four weeks? I just don’t want my PSA to climb much more. My guess is that is the risk we take, I’m not sure I’m comfortable with that as I write this tonight?

I’m off to a baseball game, perhaps two hours of 11 year old baseball will take my mind off this for a while……

BTW – the port was awesome!! No needles in my arms and tomorrow I will test my ability to throw a disc again!

Historic Data:
5/19/08 48.87
4/21/08 38.31
3/24/08 34.7
2/25/08 29.4 (Started taking Nilandron on 2/4/08; Started Selenium 200 mcg on 2/26/08)
1/28/08 36.2 (Stopped taking Ketoconazole and Hydrocortisone in anticipation of next treatment)
12/31/07 30.9
12/3/07 21.9
11/5/07 23.3
10/8/07 19.30
>10/8/07 Changed Lupron from 120 day dose to monthly dose> 9-12-07 Began taking .5mg of Avodart per day. Changed Ketoconazole from 600mg twice per day to 400mg three times per day)
9/4/07 21.80
8/6/07 19.25
8/2/07 16.96
7/02/07 20.30
6/04/07 17.80
4/30/07 16.25
4/2/07 17.68
3/5/07 21.87
2/5/07 20.90
1/8/07 18.90
12/11/06 24.86
11/13/06 43.61
10/16/06 51.48 (Started “High Dose” Ketoconazole and Hydrocortisone, 10/01)[at this point and for a second time we prepared for Taxotere. First my Oncologist wanted to try High Dose Ketoconazole and Hydrocortisone.]
9/11/06 83.97 (started Zometa)
8/23/06 41.77
8/18/06 54.66(no tests in June or July)
5/19/06 11.37 (stopped Casodex)
4/3/06 4.25
3/5/06 1.45 (started Casodex again)
1/27/06 0.46
12/28/05 1.85[at this point we prepared for Taxotere, chemotherapy treatments. First I had a new PSA test and new bone and CT scans, lymph nodes clear, spine clear, ribs, femur and hips stable. The PSA dropped to 1.85 and the scans revealed marked improvement. Chemo was cancelled 72 hours before it was scheduled to begin]
12/15/05 7.18
11/03/05 4.64 (Stopped taking Casodex)
9/22/05 0.8
08/11/05 0.35 [nadir]
6/24/05 0.55
4/17/05 2.51 (taken at MD Anderson, Gleason lowered to 7/7)
4/06/05 3.51 (Six weeks after starting Lupron and Casodex)Original Gleason scores (7/8)
Pre-treatment tests:
2/18/05 Started Lupron
2/11/05 Started Casodex
2/?/05 219
12/?/04 189 (Original test)

Another legend falls

Advanced Prostate Cancer, medical port, ric masten, University of Kansas Cancer Center -

On Saturday night we lost another of the true champions of the prostate cancer community.
Ric Masten, who had fought the disease for over 10 years passed on to a better place.

A link to Ric’s website is and will remain on the left side of this page.

I have written about Ric here before, we exchanged messages a few times in the last year. I wouldn’t pretend to know him but his website has been a real inspiration to me over the past three years.

I was truly saddened by this news. Ric was a poet, an artist, a minister and a friend to many.
~~~~~~~~~~~~~~~~~~~

Today I had my port installed. No complications to report. The procedure went very smoothly. My neck hurts a little, but that is to be expected. They made a small incision at the base of my neck on the right side and then about a two inch horizontal incision on the right side of my chest. I basically have a little bump on my chest. The staff at KU Medical Center were all wonderful, more details to follow.

The Inevitable

Advanced Prostate Cancer, Atrasentan, chemotherapy, David Emerson, PCa, taxotere, University of Kansas Cancer Center -

After 39 months, the inevitable is finally upon us. After meeting with my Oncologist today and receiving my updated PSA number (38.31) we had “the talk”.

I am definitely ready to take the next step and use a more aggressive treatment to try to to get the cancer under control. We have been fairly conservative during the past three years. Even so, we have had great results and I have no regrets on any decision we have made to date.

I am eligible for a clinical trial at the University of Kansas Cancer Center. We are researching it and at this point are favoring this protocol. It would be the standard chemotherapy (Docetaxel plus Prednisone) that I would receive, plus an additional oral medication (Atrasentan) that has shown benefit to other patients with advanced hormone refractory prostate cancer. It is a Phase III trial which is randomized, so I would have a 50% chance of receiving the additional medicine versus a placebo. I will receive the chemotherapy intravenously once every three weeks for 12 sessions, which means I’ll finish up in early 2009.

From the things I’ve read about this protocol it is very well tolerated. Most men continue to work or keep up with most of their daily activities. I plan on being no different. Fatigue usually sets in about 4-5 days post treatment which we plan to schedule so it would coincide with the weekend. So in other words, more movies, more couch time!

Crank up the prayer chain people…..I’m going to need a little help here!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Historic Data:
4/21/08 38.31
3/24/08 34.7
2/25/08 29.4 (Started taking Nilandron on 2/4/08; Started Selenium 200 mcg on 2/26/08)
1/28/08 36.2 (Stopped taking Ketoconazole and Hydrocortisone in anticipation of next treatment)
12/31/07 30.9
12/3/07 21.9
11/5/07 23.3
10/8/07 19.30
>10/8/07 Changed Lupron from 120 day dose to monthly dose> 9-12-07 Began taking .5mg of Avodart per day. Changed Ketoconazole from 600mg twice per day to 400mg three times per day)
9/4/07 21.80
8/6/07 19.25
8/2/07 16.96
7/02/07 20.30
6/04/07 17.80
4/30/07 16.25
4/2/07 17.68
3/5/07 21.87
2/5/07 20.90
1/8/07 18.90
12/11/06 24.86
11/13/06 43.61
10/16/06 51.48 (Started “High Dose” Ketoconazole and Hydrocortisone, 10/01)[at this point and for a second time we prepared for Taxotere. First my Oncologist wanted to try High Dose Ketoconazole and Hydrocortisone.]
9/11/06 83.97 (started Zometa)
8/23/06 41.77
8/18/06 54.66(no tests in June or July)
5/19/06 11.37 (stopped Casodex)
4/3/06 4.25
3/5/06 1.45 (started Casodex again)
1/27/06 0.46
12/28/05 1.85[at this point we prepared for Taxotere, chemotherapy treatments. First I had a new PSA test and new bone and CT scans, lymph nodes clear, spine clear, ribs, femur and hips stable. The PSA dropped to 1.85 and the scans revealed marked improvement. Chemo was cancelled 72 hours before it was scheduled to begin]
12/15/05 7.18
11/03/05 4.64 (Stopped taking Casodex)
9/22/05 0.8
08/11/05 0.35 [nadir]
6/24/05 0.55
4/17/05 2.51 (taken at MD Anderson, Gleason lowered to 7/7)
4/06/05 3.51 (Six weeks after starting Lupron and Casodex)Original Gleason scores (7/8)
Pre-treatment tests:
2/18/05 Started Lupron
2/11/05 Started Casodex
2/?/05 219
12/?/04 189 (Original test)

Back to reality……

Advanced Prostate Cancer, PCa, PSA, University of Kansas Cancer Center -

After a week in Florida (pictures and a full report later) I had my monthly appointment this morning and there were a number of changes:

1) First we switched to a doctor at the University of Kansas Cancer Center.
Dr. V specializes in prostate cancer. We have met with him a couple of times previously for second opinions. He has a compassionate approach and is dedicated to supporting patients with genitourinary cancers.

2) The KU Med Cancer Center just opened in it’s current location about 6 months ago. It is fantastic. It is a state of the art facility that was definitely designed to provide the patient with a privacy and comfort during treatment. The staff was consistently polite and compassionate.
In the waiting room there is a lady with a cart and provides free bottled water, juice, etc. The refreshments were offered with a smile and a warm greeting while we waited to see the doctor.
Doesn’t sound like much, but it really was a great touch.

3) Because the lab and the treatment room are in the same facility, when they inserted the
temporary port in my hand, they drew blood for all the tests at the same time. Again, not
a big deal, a small touch but it goes a long way.

4) The treatment room or should I say rooms. These are laid out like cubicles in an office environment. No more big room with 15 chairs and 15 patients. Each room has a flat panel TV, DVD player, a door that closes providing privacy. This is going to be real important in the future when I have chemo, now it’s just a good addition to the monthly visit.

5) One of the most important benefits for Mary and I – we received the PSA results before I left the appointment! No more waiting for days and placing multiple calls back to the doctor’s office.

Now for the bad news, my PSA went up a little bit from 29.4 last month to 34.7 this month.

A few factors that we believe may have contributed:
– I was on vacation and was out of routine; no daily work outs, lots of eating out, etc.
– The week proceeding vacation was perhaps one of the most stressful I have had at
work in years
– The week proceeding vacation, I was also working 4+ hours a night on a volunteer project for our church and therefore sleeping less, etc.

Dr. V, Mary and I decided we will continue the current regimen of Lupron and Nilandron to give the Nilandron a fair opportunity to get the PSA under control. Hopefully, over the next 4 weeks we will resume a better sense of normalcy and routine. I will be back to working out tomorrow morning.

Not much else to share right now, that’s my story….and I’m sticking to it!!

Historic Data:
3/24/08 34.7
2/25/08 29.4 (Started taking Nilandron on 2/4/08; Started Selenium 200 mcg on 2/26/08)
1/28/08 36.2 (Stopped taking Ketoconazole and Hydrocortisone in anticipation of next treatment)
12/31/07 30.9
12/3/07 21.9
11/5/07 23.3
10/8/07 19.30
>10/8/07 Changed Lupron from 120 day dose to monthly dose> 9-12-07 Began taking .5mg of Avodart per day. Changed Ketoconazole from 600mg twice per day to 400mg three times per day)
9/4/07 21.80
8/6/07 19.25
8/2/07 16.96
7/02/07 20.30
6/04/07 17.80
4/30/07 16.25
4/2/07 17.68
3/5/07 21.87
2/5/07 20.90
1/8/07 18.90
12/11/06 24.86
11/13/06 43.61
10/16/06 51.48 (Started “High Dose” Ketoconazole and Hydrocortisone, 10/01)[at this point and for a second time we prepared for Taxotere. First my Oncologist wanted to try High Dose Ketoconazole and Hydrocortisone.]
9/11/06 83.97 (started Zometa)
8/23/06 41.77
8/18/06 54.66(no tests in June or July)
5/19/06 11.37 (stopped Casodex)
4/3/06 4.25
3/5/06 1.45 (started Casodex again)
1/27/06 0.46
12/28/05 1.85[at this point we prepared for Taxotere, chemotherapy treatments. First I had a new PSA test and new bone and CT scans, lymph nodes clear, spine clear, ribs, femur and hips stable. The PSA dropped to 1.85 and the scans revealed marked improvement. Chemo was cancelled 72 hours before it was scheduled to begin]
12/15/05 7.18
11/03/05 4.64 (Stopped taking Casodex)
9/22/05 0.8
08/11/05 0.35 [nadir]
6/24/05 0.55
4/17/05 2.51 (taken at MD Anderson, Gleason lowered to 7/7)
4/06/05 3.51 (Six weeks after starting Lupron and Casodex)Original Gleason scores (7/8)
Pre-treatment tests:
2/18/05 Started Lupron
2/11/05 Started Casodex
2/?/05 219
12/?/04 189 (Original test)