David’s Blog

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.

An all around bad news day

First off, no news about me, we are still waiting for the doctor to call with updates on potential treatments. I’ll be calling tomorrow if we don’t hear from him.

A good friend and fellow PCa survivor just received some real lousy news. Although his PSA has been low for the past few years, it started to increase slightly. He had new scans and unfortunately he has a few new tumors and must pursue a new treatment. He also looked into XL 184 but the current trial would require too many trips to the doctor. He’s young and would like to continue to maintain a full time job, much like myself, so the logistics of the clinical trial pose another challenge to the ‘next treatment’ decision. I have corresponded with him over the last five years and hope to meet him in person some day.  My prayers go out to him and his family.

On the other coast there is a young couple who are struggling with their current treatment. He is my age and is in the midst of a clinical trial that is proving to be rather tough on him.  The side effects are becoming rather severe.  His wife posted earlier that they had spent most of the day in tears, so once again, my thoughts and prayers are with them as well.

In the spirit of Thanksgiving,  I ask that you join me in sending  your prayers their way. If you’re not a praying person, at least send positive thoughts their way.My heart goes out to both families during this difficult time.

The first question and nearly every question that follows…

When first diagnosed with cancer we try to come to grips with ‘Now what’? “Now what” with my life, my treatments, my family, my career and so on. The trepidation of now what does not end with the initial diagnosis, it goes on and on. With every up and down, every good test result and every bad, your mind immediately returns to the constant questioning. Now what?

I know some of you may be saying that this is no different than life in general, it’s just human nature to question the future, to wonder what lies ahead. While I have no argument to counter, I do believe that it is much different for those of us with cancer.

My journey, though a tad short of six years, is a constant journey of questioning. Every four weeks I visit my doctor to be retested. The results of these tests never lead to peace in my mind or in my heart. If the numbers are good, I question ‘For how long?’. When the numbers are bad, like they were last Monday, I wonder ‘Now what?’. The very limited number of options I have continues to be a challenge and weighs heavy on my mind. There are three or four things I can do next, but none of them really provide substantial relief for my heart or mind.

I am not writing this from a place of depression, I’m actually in a great place mentally. I’m just trying to make a point so that when you see me, or talk to me and I say ‘Oh I’m doing fine’, it’s a little more complicated than that…actually it’s much more complicated. I try my best to remain hopeful. I just wish for a little while that I could get a reprieve from the ‘Now what”!

I got the music in me

Ain’t got no trouble in my life
No foolish dream to make me cry
I’m never frightened or worried
You know I always get by.
I heat up
I cool down
Something gets in my way I go around it
Don’t let life get me down
Gonna take it the way that I found it
~~~~~~~~~~~~~~~~~~~~~~
Through all the ups and downs of this battle, the one thing, aside from the support of Mary, family and friends, that is a constant and that is music.

For you regulars you know my taste is all over the place. When I wrote this on Wednesday I had already listened to a variety consisting on amongst others; Peter Frampton,  Frank Zappa,  Jason Aldean, Kenny Chesney, Dave Brubeck and Keb Mo.

It’s the escape, the flood of memories, the highs, the lows, the smiles, the tears. I never learned to play an instrument, I wish I had. No regrets becasue not being able to play has not tempered my love for music.

Help me help the PCa community!

As I mentioned yesterday, one of the options that might be available to me is a new drug called Provenge. Though this treatment was approved by the FDA back in April, Medicare is still dragging their feet.  I do not have Medicare, but this decision has an indirect impact on my insurance coverage because most private insurers follow the lead or negotiate the amount they pay the pharmaceutical companies, based on the decision of Medicare.
The Medicare Evidence Development & Coverage Advisory Committee (MEDCAC) of the Centers for Medicare & Medicaid Services (CMS) meeting is Wednesday, Nov 17th. Discussion will focus on the currently available evidence regarding the clinical benefits and harms of on-label and off-label use of Autologous Cellular Immunotherapy Treatment of Metastatic Prostate Cancer (aka Provenge), and if it is adequate for the Committee to advise that the treatment costs be covered by Medicare.
THIS should be very important to all of you, regardless if you or a loved one has Prostate Cancer. Why? This is a landmark and historic decision by MEDCAC as they are evaluating for the first time ‘how much is too much’? Depending on their decision, it could have historic impacts on other cancer treatments, as well as other medical treatments in general.
We still need your help…

For those of you who have not already signed the petition, please do so by clicking the links below. If you have already signed it, I thank you for your action, but ask you to please forward this email to family, friends, and anyone who might be interested in signing it.

Help me help the PCa community and sign the online petition NOW

David