David’s Blog

The times they are a changing, again.

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 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

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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!

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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

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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.

‘Ladies and gentleman, we’re going to be here awhile’

Abiraterone, David Emerson, PCa, Provenge, PSA, XL 184 -

The title is a frivolous attempt at humor, but it appears we are in another holding pattern.

With all of the information that continually bombards those of us dealing with PCa, it was good to hear the doctor from Boston say this today, “You have done a remarkable job of managing your case by not panicking and constantly switching protocols. You have managed to survive longer than the average, longer than most,and in very good overall health!”. This is not the first time we have heard this.  We also heard it when we visited MD Anderson in April 2009. It tends to make me puff out my chest when two of perhaps the top five Prostate Cancer researchers in the country reaffirm that we have made the right decisions throughout my treatment process. Long term, things are bad, but they could always be worse.

After reviewing my chart and discussing my case for 15-20 minutes, the doctor informed us that I am not currently a candidate for XL 184 (A requirement for the trial is that lymph node and/or organ involvement would need to be present in addition to the bone metastasis). Believe it or not, I was not discouraged, mostly because of the doctor’s words and presence. He was unbelievably gracious and supportive.  He encouraged us to stay in touch and invited us to confer with him again before we make any treatment changes in the future.  He also reminded us that clinical trials change and my condition might change as well.

I obviously am not a doctor, but my experience with this journey tells me this, because my treatment options are limited, I have to get the most out of each treatment. When making  the decision regarding when it is the best time to alter treatments, I believe it is a combination of considering quality medical advice, PSA doubling times, scan results the patient’s overall health and how he is feeling and then following your personal instincts.  That has been our approach, and so far, so good!

With XL 184, we were just trying to line up another option. XL 184 is targeted directly to the bone tumors, which peaked our interest in this relatively new treatment option. When the time comes to choose the next treatment regimen, we plan to have two or three options lined up, Provenge, Abiraterone, or maybe this newer drug XL 184.  It is truly a luxury for an advanced prostate cancer patient to have treatment options after being diagnosed almost 6 years ago.

The good news, and this is sometimes hard for me convey in words, is that unlike when I started this journey,there are more options. Five years ago my next step would have been to try chemotherapy again. Since it didn’t work as well as we had hoped the first time, the chances of it working a second time are not very good. Now, in late 2010, I find myself with three potential treatments.  It will be a difficult decision, but it won’t have to be made until sometime in the future.  Once again I find myself sleeping well and remaining encouraged that in the midst of my chaotic life, things are very encouraging!

And yet another

David Emerson, PCF, XL 184 -

Friday was both my monthly appointment with my oncologist and a periodic bone scan. This translated into an entire day at the cancer center. We left the house a little before nine and we didn’t get back home until nearly six.

It provided a chance for a lot of together time for Mary and I, as well as time for a lot of people watching. NOTE: I swear Lady Gaga walked into the Starbuck’s on the Country Club Plaza!  We both got a laugh from this one! We also observed the typical jackass at the cancer center. This is the type of patient that visibly expresses their fear and concern through one of those permanent pissed off looks on their face. They follow that up with harsh words for the poor lady at check in and the cherry on top is when they make comments that clearly articulate the fact they certainly didn’t listen to a word of the instructions they were provided explaining the CT scan process. The prime example is the statement he rudely yelled at the admin person behind the desk, “No I haven’t received any liquids to drink, I’m here for a CAT scan, why would I have to drink anything?”. OK Einstein, I’m going to speak real slow so you can follow along…..you must drink the liquid in order for the scan to capture the pictures of your insides!

Sorry, but sometimes rude, ignorant people just get to me. Back to the matter at hand, my status update….

Every time I have a bone scan Mary patiently waits in the reception area and when I come out she asks me ‘what did you see? How did it look?’ Usually there is not much to report, and there didn’t seem to be this time either. However, after having radiation treatments back in June, I had expected much less visible activity on the monitor than I began to see as the scan was about half way over. There was a clearly visible spot on one of my hips. I’m not sure that it is more or less than March, but as I said, it was more than I expected to see.

Dr. V then provided this update; my hips and legs are ‘stable’ when compared to the last scan in March. I was hoping they were better after having radiation treatments in June but stable beats the alternative! My PSA however was at 35.08, up from 28.69 last month. Not too much of an increase, but not lower.

We spent considerable time discussing a new trial that was recommended by Dr. Simons of the Prostate Cancer Foundation. When I was in Washington, DC he mentioned that I should look into the trial and discuss it with my local Oncologist. There are three sites he recommended; San Francisco, Ann Arbor and Boston. At this point we are leaning towards Boston and hope to connect with the doctor there this week. Dr. Simons was kind enough to provide us with the contact information for all three centers.  We have selected Boston and have sent an email requesting to be considered for the current trial. The drug is called ‘XL 184’ and is specifically being used to target cancers that have metastasized in the bone. 

I’ll post again as soon as we talk with the doctor from Boston.

The silence is deafening….

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Earlier last week the Prostate Cancer Community lost another wonderful man, Howard Hansen.

Here is a brief synopsis of Howard and his work from the website he managed (http://www.hrpca.org):

Hansen has battled prostate cancer since 1993 and he co-founded Hormone Refractory Prostate 
Cancer Association (http://www.hrpca.org/), an independent nonprofit, more than 10 years ago. The association operates through the HRPCA.org Web site and through an email-based support group. Hansen and other volunteers provide information that helps patients manage their disease thereby maintaining their quality of life. The group of cancer patients also shares the latest medical literature on the newest treatment opportunities and strategies to aid them in discussions with their oncologists.

I never met Howard or even spoke with him on the phone but we exchanged a few emails and I read every post he sent to the Prostate Cancer support message boards. He was a wonderful resource and will really be missed by both us seasoned veterans and those that are newly diagnosed.

God bless you Howard, Joan and your entire family.

14 years later

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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

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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.

Six is magical

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Tomorrow at this time I will be knee deep in getting the 6th Annual FLHW Golf Tournament off the ground. God has once again promised us a perfect day of 75 degrees and no rain! We’re six for six when it comes to the weather.

This year we find ourselves in an interesting spot; the number of players and teams is down slightly, we’ll have 31 total, but the number of sponsors and donations are up quite a bit. At times like this I’m so overwhelmed with others generosity, and I’m not sure what to say that will adequately express my appreciation. So I try to just smile and thank them once, maybe even twice, but it never seems to be enough.

In a few hours I’m off to the airport to pick up one of my life long friends. We go back more than forty-two years. He sacrifices a weekend from his wife and daughters each year, flies across the country and spends it with us. In addition a number of family and friends will come to Kansas City from St. Louis to spend a few days here as well. I’m not sure I can find words to appropriately thank them for their support and participation as well. I am truly blessed to be surrounded by friends, family and even strangers, all helping me do our little part to rid the world of this awful disease.

I’ve said before that since I was diagnosed, I didn’t ‘get’ cancer, God ‘gave’ it to me and it is up to me to figure out why and what to do with it. These examples are just a few of the many I have experienced in the past five and a half years that lead me to believe I’m getting closer to figuring it out.

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