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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 times they are a changing, again.

 The times they are a changing

I'm a little late in getting started with the blog this month, but after today's Oncologist appointment, November is certain to be full of updates.

My PSA is up from 36 last month and now sits at 52.

This is not the news I was looking for at all. It seems that after seven months DES (estrogen) has run it's course. Though I am feeling fine, we now find ourselves at a crossroads once again. We have several options we are going to pursue and the plan is to review these with Dr. V when we meet with him next Monday.

One option is Provenge. I have written about it here before, but at a high level it is a new and emerging class of drugs called 'Immunotherapy'. Provenge is administered in three treatments over a one month time frame. With each treatment the patient spends several hours having their blood cells extracted through a process called 'Leukapheresis'. The extracted matter is sent to a laboratory where it is merged with Provenge, fermented and three days later sent back to be re-infused into the patient. There are two outstanding issues with this option: Will insurance pay for it? If so, can we find a location with supply such as Omaha or will we have to travel further? (the drug was just FDA approved in April and remains in short supply until next year)

Another option, and the one we prefer, is a drug still being evaluated in clinical tests called Abiraterone. The latest news from Johnson & Johnson is available here. Again, at a high level;  Abiraterone acetate is a novel, targeted, investigational, oral androgen biosynthesis inhibitor being developed for the treatment of metastatic advanced prostate cancer that has progressed after developing resistance to conventional hormonal therapies. This is also known as castration-resistant prostate cancer (CRPC).
 
There is a Phase II trial I might be eligible for but we'd have to travel to San Francisco a number of times.  Additionally, Abiraterone is also going to be made available through expanded access, as a non-blinded Phase III trial, but the timing for that approval may be longer than we are comfortable with, as it could be late December or into next year.
 
There is a third drug called XL 184 that I found out about through friends at the Prostate Cancer Foundation. Once again, there is a timing issue and an eligibility issue with my specific case.

All of this will be reviewed on Monday.  After we review the options with the doctor, we will make the decision we feel is best at this time.  The bad news is the test score and the increase in my PSA level. The good news, if you can call it that, is that we have a few options in front of us.  The challenge with the options is the timing and availability of the drugs.  Treading through the gray area of decision making is always a bit stressful, but we choose to remain positive and continue to have hope and faith that we will select a treatment that responds favorably.

The captain of my soul

While reviewing one of the on-line forums I follow, I responded to a post with the following:

Worry and what ifs can be all consuming and at some point we have to look forward and go live!

My response was directed to a man who was recently diagnosed and was asking about how long he had and whether we knew of anyone with stage IV PC who had been cured. At one time I was where he is, caught up in the wondering and worrying about the future. At some point I learned to just live. For the most part one day at a time, but I’d be lying if I said I don’t think about the future. Looking ahead yes, but not too far.

I received the following from Manny in Florida. There are a number of scholarly interpretations on-line, mine is somewhat different.

INVICTUS
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeoning of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

William Ernest Henley

It still doesn’t suck!

Last year at this time, almost to the day, I spent a perfectly beautiful day sailing with my good friend Jim.
(I wrote about it here: http://flhw.ddmpreview.com/it-didnt-suck/ )

So this morning, one year later, in a boat with a few more feet in length and weather that was nearly identical to last year’s, we set off for four hours of perfect sailing. When I left the house the overcast was thick and gray but when we arrived at the Lake Perry Yacht Club at 11:15, the clouds had began to break. As you can see by the pictures above, within an hour we were enjoying a steady 10-12 MPH headwind, blue skies and seventy degree weather.

Due to my medical condition du jour (blood clots in my left leg) I was more passenger than captain but it is impossible to complain after the way it turned out. We enjoyed a Chiefs win on the radio, lunch on the boat, and a considerable amount of Jimmy Buffet as we covered at least 17 miles.

Thank you is not enough Jim.  Next year let’s make this a monthly event!

Here I go again

The irony in the title is a friend posted the video for this Whitesnake song on Facebook earlier today. Little did I know how appropriate it would turn out to be for my day.

Seems I’ve once again got a little issue with blood clots. My left leg has been hurting since the weekend and at first I just assumed it was due to the the massive amount of yard work Rich and I put in the last two weekends. After a drive down to the Radiology Dept. at KU Med Center for an ultrasound, it turns out it wasn’t a muscle pull, but what was described by the doctor as an extensive series of blood clots down my left leg.

I knew where this would end up…back on Lovenox! See posts from August 2008, I’ve been here before!  I didn’t enjoy it the first time, and certainly was not hoping for a second round!  So for now I begin the regimen of a self injection into my stomach, twice a day.

On the upside, at least we knew that blood clots are a potential side effect of the DES and went and had it checked out.  My next appointment with my oncologist is two weeks from Monday, (Nov 8th) and we’ll discuss potential treatment options.  A decision we knew we would probably have to make in the near future, it looks like now it will be sooner, rather than later.

14 years later

Last month we celebrated a birthday. Our one, our only, turned 14.

Wow, that just doesn’t seem right. When this journey, this part of my life began, he was but 8 years old, truly a boy. Now, six years later he is without a doubt, a young man.

What the future holds I don’t know, but do any of us? At one point I had created a list of the things I wanted to do or see before PCa takes me. I looked but could not find the particular post.

I know a few of them are about to come to fruition;
– he will start driving, real soon, too soon!
– he will start high school, now less that a year away.
– girl friends and heartbreak are going to happen soon as well.

Graduation, college, marriage and blessing us with grandchildren are way, way into the future. I do feel much more comfortable today than I did last year and the previous four that I will get to share some of these milestones in his life.

God has truly blessed me with my great family and an absolutely wonderful, beautiful son.

Friends, family, strangers and enough nature to fill a book

Seriously! Has it really been almost two weeks since I posted an update?

I guess that makes sense because after my last post we had a golf tournament, a house full of friends and family and I spent last week in northern Wisconsin.  Time flies when you’re having fun….and yes, I have been having fun!

The golf tournament once again went off without a hitch. The weather was absolute perfection and as always the support we received left me grateful to my family, my friends and the kindness of complete strangers. I won’t have a total for a week or so but I am still hopeful that our donation to the Prostate Cancer Foundation for 2010 will be really close to $40,000. The majority of the funds raised are from the golf tournament.

My brothers and dad came over from St Louis along with other friends and family. This year I was once again honored with the presence of my dear friends Bill who travels all the way from southern Maryland and Bob who comes in from St. Louis. This year we had an extra day and we caught up and reminisced about ‘the old days’. The stories we have…wow!

Sunday after everyone had returned home, Mary and I decompressed and straightened up all the odds and ends from the golf tournament. Wasting no time, Monday morning I jumped on a flight to Milwaukee, along with my brother in law, Rich and we were off to Minocqua, WI for five days of fishing and disc golf. Fall had already descended on northern Wisconsin and the trees were post card quality. The nights by the fire pit were chilly but the stars and meteors were a constant reminder of the higher power watching over me. The sky is so clear that sitting on the dock you can actually see the Nebulous.

 

This is doctor appointment week.  We are a little early this month to accommodate Dr. V’s travel schedule.  I will have my monthly blood test and a bone scan on Friday.  More on that tomorrow or Thursday.

Time flies….

Dear Blog,

Sorry I have neglected you. One would think that being without a job I would have all this spare time on my hands.  One would be wrong in this instance. I vow to recommit myself to more frequent and substantive updates. To that end, I have just created 5 drafts, including this one. There is a lot going on in my life as I fight this dreaded disease on a daily basis, and sharing my trials and tribulations will once again become a priority.
~~~~~~~~~~
In addition to preparing for our upcoming FLHW golf tourney, I have spent some time over the last month helping a friend launch a new website. This even included a few days in Boston to help him with a conference/expo. The website is focused on helping amateur MMA (Mixed Martial Arts) fighters train better, as well as to help promoters and the State Boxing Commissioners identify qualified fighters. I don’t have much interest in the sport overall, but the business plan is pretty solid. I wish my friend great success wit this endeavor. My involvement centers around marketing social media (Facebook, Twitter, blogging etc). It’s a lot of fun and I may have recruited another disc golfer while we have worked on this project together. The website is www.mmaally.com if you are interested.

My job search continues. When I became a ‘free agent’ on July 1st I had planned to take July off. Well July ran in to August and the next thing I knew it was September 1st. So I have started seriously looking and leveraging the resources that were provided by my former employer and that is where I currently find myself. My resume and background are available at linkedin.com.

More to come over the next few days. Have a great week-end!

O summer, O summer, where art thou?

Seriously, it’s August 31st? Where did this summer go?

For me it began in the abyss. After a serious flare up of pain and wide spread tumors in my hips and thighs, I had my first experience with radiation treatments. In the end, it wasn’t so bad and the pain relief came almost immediately.  Fatigue, a slight skin rash, and gastrointestinal problems were primarily the only side effects we had to deal with.  Thankfully the radiation was effective and my PSA as well as the absence of pain is proof positive that the treatment regimen was a success.

By the end of June, I was 100% better but found myself without a job. I knew it was coming. It was not a surprise, but the reality can be eye opening. Mary and I agreed I would take July off, which has expanded into August, but now the search begins. I have been busy with the foundation as well as lending my skills to a friend who is starting a small web business. Time is flying by, so I need to bump up the career in the priority list once again.

I still have two weeks until my next Oncologist appointment, however I feel great. ‘Keep on keeping on’ is the current mantra.

This week I can finally return to the disc golf course. I will have to take it easy the first few times out, but I cannot convey how excited I am! The hardest thing is going to be easing my way back into it…I have a lot of pent up adrenaline and I am mentally ready to go!

Updates will follow as always, that is all for now, hello September!