Focus Pocus

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

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 16^th 
44 Attendees
$1,500

2^nd Annual Friday Night in the Greenhouse: May 7th
$1,400

3^rd Annual FLHW Disc Golf Tournament: May 8th
43 Teams (the most ever!)
$3,000

1^st 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 17^th
48 Players
$4,000

6^th Annual FLHW Golf Tournament: September 24^th 
132 Players
$27,000

Poker for Prostates: December 6^th
33 Players
$2,000
Interview on sportsradiokc.com

A book and it's cover

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.

Interview on sportsradiokc.com from 12-3-10

I finally received a copy of the radio interview from December 3rd.
It's approximately 13 minutes long. I posted it at flhw.org

http://www.flhw.org/in-the-press

I really appreciate the opportunity to share my story. Thanks to Matt and the guys at sportsradiokc.com

Go west, young man

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'.

Which road to take

As I ponder what’s next and what lies ahead medically, I can’t but help think of the opening to the Robert Frost poem ‘The Road not Taken’

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

A slight difference is my road ahead not only diverges but divides thrice. If all three treatments become viable options, which one do we chose? There are puts and takes to each, both known and unknown impacts involving side effects and long term sustainability, but that still leaves us, as Frost implied, standing here, contemplating the choice, the future.

Perhaps, like the poem, we’ll look back on this decision like this;

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.

Poker for Prostates

On Monday night we held our 9th Poker for Prostates event!
It never fails, at every event there is someone that I am blessed to know, who steps forward and amazes me with their generosity! Thanks to him, I am forever grateful!  Once again, I am humbled by the support of all the participants and volunteers who made the evening a success.

The event resulted in 33 players who helped us to raise nearly $2,000!!

This moves us closer to our 2010 goal of donating $40k to PCF, which repesents an increase of 25% from 2009!!

 The action begins!                                  The final table!

 Steve, Mark and David                         Bruce 2nd Place, Brad 1st, Rob 3rd

An alteration, a variation or perhaps I just go with 'an adjustment'?

I had my monthly appointment with my oncologist, Lupron shot and Zometa infusion yesterday. The latter two items went off without a hitch, as usual.

My PSA however was up again and now at 81.2

I was not at all surprised with this increase based on the previous two PSA readings and how I feel.  Let me clarify how I feel, overall I feel great. However, because I have a very high tolerance for pain and the fact that after six years of this I am very in tune with every ache and pain in my body, I knew the PSA was up. Nothing severe, just an occasional twinge in my hip or leg(s) etc., no Advil needed it comes and goes.

So it seems that the DES (estrogen) has run its course and so it’s time for a change. We have discussed a number of possible treatments with Dr. V however, two are not yet available and the doctor's team is still trying to coordinate the third. Given this and the need for a change we decided that as a short term stop-gap I would replace the DES with high-dose Casodex. Casodex is an anti-androgen that is combined with Lupron as the ‘standard’ treatment when men are initially diagnosed with advanced PCa. I was initially on Casodex for the first year after diagnosis. In a high-dose dosage there were a few small studies ten years ago that showed some limited benefit. If my results are nothing more than the stabilization of my PSA while we line up the next treatment, I’ll take it.

On another note, the doctor did feel a slightly enlarged lymph node in my neck. He didn’t seem too worried but I am having an abdominal CT scan on Thursday just to be safe.  There are times I think my laissez-faire attitude or sarcasm leaves Dr. V dumbfounded. For example, after telling me about the lymph node and the order for a CT scan, I responded with the following; ‘Well I guess the CT could result in a bad news, good news situation. The bad news is we found something, the good news is you now qualify for the XL 184 trial!’  He had no idea how to respond.

Just so you the reader understands, I honestly believe that because life itself is far too serious, you have to see the irony in things, and retain a little bit of sarcasm in your everyday life. Mary and I laugh a lot at this whole situation. When we left the doctor she said (thick with sarcasm)  “Oh well, just another appointment, your numbers are up, you have a swollen lymph node in your neck, you  have to have a CT scan, your iron level is down and I have three new prescriptions to get filled!” We then went on to ponder whether or not there was something wrong with us because of the way we react to news like the news we just received?  Shouldn’t we be upset, emotional, pissed-off, something? We are not naïve nor are we emotionless, it’s just after this much time we don’t fly off the handle or get too worried. It is what it is and we have to let it all play out before our eyes.

Just another day....

My day started with an email from a wonderful friend. With his permission I share it here: 

Bela read the FLHW card you sent.  Afterward we talked a little about FLHW.  She asked, "Papi, you remember when you came back from playing golf in Kansas and ask me to really pray for David"?  "Yes," I told her and I explained how the cancer appeared on your leg bone, how they radiated it making it go away, but how it would probably come back.  She said, "Daddy, I never stopped praying for him."

She got a long hug for that!

I'm not sure about you, but my eyes are welling up and this is the third or forth time I have read it. You wonder what gives me strength and provides me hope? I'm not sure there is anyway to make it clearer!

~~~~~~~~~~~~~~~~~~~~~~~~~~~

I had a last minute request to appear on an internet based sports talk station this morning at 11:30am. The station can be found at: www.sportsradiokc.com

They promised to provide a recording which I will post later.   

Oh, what a lucky man he was (is)

Six years ago this month my new life began. I really had no problem with my old life. I had a good job, beautiful, loving wife, awesome son, appeared to be relatively healthy and things seemed to be going quite well.

What started as a rather minor pain in my right hip, six weeks later, I was diagnosed as having ‘advanced, metastatic prostate cancer’. This all took place around the same time I turned forty-two years old. As a relatively young man, you can imagine the shock and disbelief.

Though Prostate Cancer is very treatable and curable when caught early, in my case, things were not to be. The cancer had already left the prostate gland and was present in my lymph nodes and in numerous places in my skeletal structure. As the x-rays revealed there were lesions present up and down my spine, in my ribs and extensively throughout my pelvis.

This may be misquoting, but the saying goes something like this, “There are lies, damn lies and statistics”. The odds for me were not good from the outset. Chance of cure or remission, none. Expected or typical survival time, 36 months.

Well here I am nearly six years later. I have been through a plethora of treatments. Some of these have worked wonders, though temporarily. My lymph nodes have been clear since six months after I began being treated but the bone lesions remain today.

From the outset I have been on androgen deprivation. This is a wonderful treatment that suppresses my testosterone to the point that I am basically a forty-seven year old man with the hormones of a pre-pubescent boy. In addition I have side effects similar to a menopausal woman. Yes, it is quite the combination! In addition to the constant hormonal treatments, I have been through chemotherapy, radiation, women’s estrogen, a clinical trial and a few other treatments. Each had its puts and takes, its good and bad but again none provided long term benefit, nor as I previously mentioned, a cure.

At this point most of you are probably wondering ‘how can this man think he is lucky’? It probably sounds like I am anything but lucky.

First off, I’m still here. There are a number of men, many close to my age, that lasted but a fraction of the time I have. For that I am truly blessed. There is also the hope of the future. When I was diagnosed in early 2005 a man at my stage, at this point in his post diagnosis treatment regime, would for the most part only have the option of chemotherapy left ahead of him.  The standard chemotherapy treatment for prostate cancer at the time, Taxotere, is usually tolerated better than chemotherapy given for other cancers. This is not to minimize the side effects of Taxotere, I am simply comparing the once every three week treatments to those of other cancers where the patient is subject to daily or multiple weekly infusions. The bad news however is there are very limited long term benefits from Taxotere. In 2005, after completing Taxotere treatments, a man would begin a slow and usually very painful process of dying. It’s not pretty and for someone who one day faces that future, the thought of this is also very hard to write.

This brings us to December of 2010. The future looks bright for those of us with advanced/Stage IV Prostate cancer. Well ‘bright’ might be too Pollyanna, but I challenge one to argue it is not encouraging.  Earlier this year a new drug, in an emerging class of treatments was approved by the FDA. The drug, Provenge is in a class of drugs referred to as ‘immunotherapy’. In laymen’s terms a patient’s white blood cells are extracted, sent to a processing center and three days later re-infused into their blood stream. During this three day period the chemical compound or the Provenge is fused with the patients white blood cells. The treatment process is repeated two additional times every two weeks.  There is some controversy with the price and long term benefit of Provenge,  those objections can be discussed by others in other forms.  My purpose for discussing Provenge here is that six years ago, it wasn’t an option at all. On a personal level, in all likelihood, this is my next step, but not my last.

After Provenge there are several other drugs that are either in late stage or Phase III clinical trials that appear to be an option in 2011. A trial in Phase III is a drug Abiraterone and XL184 is being monitored in a Phase II trial. Both are showing remarkable results. Additionally, there are others; MDV 3100, TAK-700, Cabazitaxel, Alpharadin and others. I’m not going to list them all.  My point is that there is a future, and once again a future offering much more promise than just a few short years ago.

Finally, I can’t help but think of the old adage and offer this, anytime you want to walk a mile in my size ten and a half’s, I’ll likely have to think twice about it, because even in the midst of what appears to be a hellish life, things are looking up. Furthermore, I am confident that I have a few more miles to travel in said shoes than you probably could have convinced me of back in 2005.