David’s Blog

It’s a good news, bad news, more news story

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Good news I got into the Abiraterone clinical trial (assuming my EKG is normal). Also, due to an awesome clinical trial manager, the plan is to meet with the doctor, have blood work done, meet with the clinical trial nurse and have the EKG on day one. Then two days later, assuming all tests are within range, I’ll meet with the doctor and begin taking the medication. This will alleviate a return trip 4 or 5 days later.

The bad news is I am going to be traveling to Atlanta on a bi-weekly basis until a site closer to home opens up.
There are rumors of a location in Omaha (3 hour drive) or even at KU Cancer Center opening soon, but based on experience, ‘soon’ could range from from forever to never. I will remain positive, as always.

The more news portion is that after the initial trip I can fly back and forth to Atlanta on the same day and direct from KC! I’ll scout it out but from the Google map I might be able to take the MARTA to within a mile or two of the doctor’s office, catch a cab, have the appointment and then do it all in reverse. So in one day I will leave Kansas City bright and early and be back home by 10pm. So the logistics may be a bit of a challenge, but most important, we are hopeful that I will be able to receive the treatment that will get the cancer under control and my PSA will take a turn in the right direction.

Without details

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No details yet but as of now I am scheduled to meet with the doctor in Atlanta on the 25th. I have asked to move that up, but the trial nurse was out of the office on Friday and snowed in today due to a storm in Atlanta.

Last Tuesday and Wednesday I was experiencing a lot of fatigue and some mild discomfort/pain. I hate to even use the word pain, but never the less, in both cases two Advil took care of things for 24 hours. Since Thursday I haven’t had to take anything.

I should know more tomorrow and will post updates after I get all details.

Oh, Atlanta!

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

I don’t have for a lot of details yet, but want to share the update with you.

My Oncologist was able to get the contact information for the trial site in Atlanta. I left a message,it was returned, we spoke, exchanged emails, I sent some basic information and should hear from the scheduling nurse tomorrow.

Whew, feeling much better mentally today than yesterday.

The study nurse was quite pleasant and provided more information than I expected to
obtain. If everything works out, we’ll go to Atlanta next week to meet the doctor, study nurse, have multiple blood tests, an EKG and other various required tests. This might require an overnight stay. The following week, assuming everything checks out, I will start the trial and receive the medication.

Per the protocol outlined for this trial, every fourteen days I will have to return for the first three months. Then monthly there after. This is a lot of travel, but there are a few positives, direct flights and I should be able to fly back and forth in the same day for trips when I am just going for a blood test. Most importantly, we believe this is the treatment that will get the pc under control!

Think positive that this all works out!

What up with that?

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The irony of the title of this post is uncanny. I wrote the first half at 1pm today. Tonight’s update is below!
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My blood test from yesterday confirmed what I suspected, my PSA is increasing rapidly. It jumped from 81 on Dec 6th to 142 yesterday.

 

Due to the increase from October to December we had already begun our (My Oncologist, Mary and myself) attempt to gain access to one of three options; XL 184, Abiraterone or Provenge. These are listed in order of our preference.
– XL 184; I am not eligible for the current trial as it requires organ involvement. There is a new trial that is to open at any time that removes this requiremen,t but waiting is not really an option.
– Abiraterone; the good news is more and more sites are being added to Open Label Phase III Trial. The bad news is none are available in the Midwest. All of my paperwork has been sent to a location in Los Angeles, now we wait and see.
– Provenge; because this is not going to focus on reducing my PSA (according to what I have read) we are pursuing this as a secondary option. A letter of medical necessity was sent to UnitedHealthcare in mid-December, they have 30 days to reply.

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So this evening I get an email from the trial site in Los Angeles and now it turns out that their site is full. I wish they would have told me that weeks ago! Mary talked with the site coordinator as recently as Thursday, and there was no mention of full capacity being an issue.  Discussion was clarifying that Monday’s blood tests would be forwarded asap. I am frustrated beyond imagination. Time is of the essence. We are already scrambling to pursue access in either Atlanta, New Orleans or Palm Beach, FL.  More to follow as we find things out!

New Year, new direction

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

Tomorrow is my 28 day appointment with my Oncologist. Due to the holidays, time flew by and I really find it hard to believe it is time to return to the cancer center.

I’m not sure what to expect with my PSA score. Regardless of what the results will be, we have to make a decision this week regarding the next treatment. We are still pursuing Provenge in New Jersey as well as Abiraterone in Los Angeles. Even though it will require a fair amount of travel, we are leaning towards Abiraterone. The reason we are favoring Abiraterone is that we believe I will have a much better chance of reducing my PSA and that is what we need to focus on at this point. This is not to rule out Provenge or to even say we don’t do both. I’m not sure that doing both simultaneously is even possible, but you never know.

The holidays were great. We saw a lot of family and enjoyed each other’s company. I think subconsciously we may be trying to store up the energy required for what lies ahead. This is a very brief update, more details over the next few days.

Focus Pocus

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With the new year will come a new dedication to exercise. I have been slacking off for the better part of a month. Though I have a reason, it’s not a very good one. I do experience the occasional aches and pains. Nothing serious, it is just providing an excuse to sleep a few more minutes. I plan to start the new year with a renewed vigor.

I am two weeks into the new medication (high dose Casodex) and though I won’t know if it’s working for two more weeks, I believe my body is saying it is working. Time will tell.

2011 will be here in a few days. There is a lot to look forward to this year. I’ll celebrate my sixth year of being a Prostate Cancer survivor. Where did the time go?  Brad will graduate from 8th grade and subsequently start high school. Mary and I will celebrate our 20th wedding anniversary and my dad will turn 80. I’m sure there are more, but for now, these are the milestones that lie ahead.

Happy New Year to all of you! May it be filled with wonderful times and glorious memories!

FLHW 2010 – a year in review

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A few weeks ago we made our annual donation to the Prostate Cancer Foundation (www.pcf.org). After setting what was certainly an aggressive goal of a $40,000. donation this year, a 25% increase from 2009, I am proud to say that we made it! With this donation our cumulative donation to PCF is now $175,000. In addition, each year we take advantage of a matching program which makes the overall donation $350,000.

I picked this up from the PCF website. From a personal view, the future looks very encouraging!
2010 has been a great year for advances in prostate cancer.

  • Two new drugs – Provenge and Cabazitaxel – were approved
  • Two more drugs – Denosumab and Abiraterone – are pending approval
  • A fifth drug, Ipilimumab, is in Phase III clinical trials
  • Researchers at the University of Michigan discovered the 24 types of prostate cancer
  • The cell of origin for prostate cancer was also discovered

To the FLHW Board, family, friends, donors, participants and sponsors for each of our events, I express my heart felt thanks. In the midst of the storm that is my battle with this disease, you all provide hope for me and hope for the men that will follow.

I found this story and it reinforces perhaps one of the ways we were able to accomplish this goal. You have to remember before reading this that overall charitable giving in 2009 was down again.

 
Kansas City Business Journal
Date: Friday, December 10, 2010, 2:49pm CST
Kansas City ranks No. 3 on a list of the nation’s most charitable cities, according to The Daily Beast.
About 3.5 percent of earnings in the city are donated.  Kansas City’s average household income is $84,923; giving per foundation amounts to $863,859; and there are 470,800 volunteers during the year — nearly 23 percent of the population.

FLHW 2010 – A year in review
(Dollar amounts below are approximate)
Poker for Prostates: February 16th 
44 Attendees
$1,500
2nd Annual Friday Night in the Greenhouse: May 7th
$1,400
3rd Annual FLHW Disc Golf Tournament: May 8th
43 Teams (the most ever!)
$3,000
1st Annual Warrior Combines: July 24th 
20 Participants
$1,000
Extensive coverage on Fox4 KC
Participated in ‘The Summit to End Prostate Cancer’ in Washington, DC: September 12th
Morse, Solomon & Ward/Ameriprise Customer Golf Event: September 17th
48 Players
$4,000
6th Annual FLHW Golf Tournament: September 24th 
132 Players
$27,000
Poker for Prostates: December 6th
33 Players
$2,000
Interview on sportsradiokc.com

A book and it’s cover

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I attended a holiday get together the other night. Like most of these type of events, it was a good mix of people I see often, and those that I haven’t seen in a while. 
At one point I was talking to a person that I see several times a year and whom I thought was up to date on my situation. My mistaken assumption. After a little small talk she asked how things were going with my health and made the offhand comment, ‘you’re in remission now, aren’t you?’. I gave her the update, and probably more since that is a habit of mine, but the conversation stuck with me. 
Now, a few days later and I began to ponder this;  I imagine for a lot of people at our church, school and neighborhood, who really don’t know me that well and aren’t probably readers of this blog, they see me and think ‘well he looks great, he must have gotten over it’. [note, when I said ‘looks great’, I mean healthy]. Frankly, I do look healthy and happy so how would anyone know. The same may be said about them and my view and assumption, I see them and they ‘look’ alright, but in reality I have absolutely no idea what’s going on in their life beyond the small talk we exchange at a holiday party.
There is nothing more, nothing deeper, just an observation on my part.
On to my treatment decision. It looks like after all we may be headed east, versus west. Nothing is concrete, but through some initial discussions with the clinical nurse it appears the opportunity in Los Angeles would  require nine round trips in the first three months. I’ll provide more updates as we get then but for now it looks like we might be headed to New Jersey three times in a month, but then we’d be done with that treatment.

Go west, young man

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Dr V called Friday night with the results of my CT scan. That’s right, my doctor calls patients at home on a Friday night! His news was for the most part good.
1) No, the cancer has not spread to any organs.
2) The radiologist noted a new tumor in the T5/6 vertebrae. This was new compared to the CT scan from 12 months ago, but we were made aware of this new tumor when he communicated to me the results of my last bone scan, which was last month.
3) There are three areas with enlarged lymph nodes, two nodes above my prostate, two below and two in my neck. The largest being approximately 3cm or a little more than an inch, this was near my prostate. The other areas were smaller.  He recommended for now we keep an eye on these and they should go down as we treat the disease in total. In other words, get my PSA down and these could go away as well.

This news is good in the sense it just eliminated one option and made my next treatment decision a choice of two Provenge (immunotherapy – vaccine) or Abiraterone (oral – pill). Both are going to require travel, the former to the east coast, the other to the west. I’ll wait and see how things evolve but there’s a little voice saying, ‘Go west, young man’.

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