PSA

When you put it that way…..wow!

Advanced Prostate Cancer, David Emerson, PSA -

On the prostate cancer message boards we often discuss the cost of treating prostate cancer. Last week I provided a summary on the 2010 costs for my treatment. Below you will find the summary, these are 100% prostate cancer related as I am otherwise healthy :-).

During the year I had two bone scans, a CT scan, a MRI, 14 radiation treatments, 13 Zometa and Lupron treatments. I was on DES (not included in this cost) I have been on Lovenox since mid-October.
Billed Amount $117,005.53
Paid by Plan $46,156.01
Patient Responsibility $1,684.97

Billed Amount = amount medical provider billed insurer
Paid by Plan = amount insurer paid medical provider

For a general idea of what this has cost so far, take these numbers and multiply times six.

All I can do is say a little prayer for the fact I have great health insurance!

It’s Blog-aversary VI

Advanced Prostate Cancer, David Emerson, hrpca, PSA, the Big C -
February 2, 2005
Entry #1 – The start of the end?
(This is just a portion of my first entry)
So here I am, a 42 year old, white male and tomorrow I am having a biopsy to determine if the problems I am experiencing are ultimately diagnosed as Prostate Cancer. Grim thought indeed.
…. I am fighting to remain positive. I pray a lot more than I ever have.
I worry most about my wife and young son and how they would go on?…. But I worry about them both emotionally and psychologically. I can’t imagine going on without her or him, it saddens me deeply. I pray a lot more than I ever have……
February 2, 2011
Entry #589 – It’s Blog-aversary VI
Now I find myself here, an outlier, way down the right side of the bell curve. Wondering, worrying, still trying to find fresh perspectives to share with you.
I try to keep the focus on what I am feeling and thinking versus what I am doing. For example; when I share that I had/have treatment I think readers appreciate it more when I share that it worries me, that I am hurting and what I’m thinking about. Anyone can post the mechanics of living with this or any disease, but I have always tried to reach deeper, beyond the scans, tests and needles. I really try to provide something unique that other survivors can use. Maybe they learn something and gain just a little insight in order to deal with what may lie ahead for them.
As I mentioned to a fellow PCa survivor earlier today, “It’s a badge that most of us would relinquish if we had the option. We don’t have that choice so some of us share it hoping to provide just a little light in an otherwise dark cancerous world.”

Birthday presents

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

On Tuesday Mary and I traveled to Atlanta. The purpose of this trip was to meet with a new doctor and be approved for a clinical trial that offers a drug that should help quell the beast. With the continued increase in my PSA, it was critical that we find a new treatment. The drug, Abiraterone, is on the verge of FDA approval.

Tuesday was unbelievably stressful and tiring. We had to get up at 4:45am in order to get ready and catch a 7am flight. The trip to Atlanta was non-eventful but when we landed it was raining. The rain continued all day and the gloominess hung over me like the large gray clouds that blocked the view of the Atlanta skyline. After getting a rental car and driving to the Buckhead area, we only had time for a quick lunch before heading over to the doctor’s office.

Somehow our luck continues when it comes to finding pleasant, professional and accommodating medical support. Dr. A’s staff was fantastic. We spent 30 minutes or so with the doctor followed by a trip to the hospital for tests. Dr. A has been involved with this specific drug throughout all stages of the clinical trial. He has seen excellent results from the majority of the men on the trial and very few complications. The primary side effects noted are low potassium and leg cramps. In order to monitor my health through this trial, I will be returning for blood tests and visits with the doctor every two weeks for the first 3 months and then once a month after that.
The remainder of Tuesday afternoon was spent at the hospital where I had both and an EKG and an echocardiogram. I wasn’t familiar with the latter, but learned it is basically a sonogram of your heart. I was able to view the monitor and I must say it was pretty exciting to watch my heart valves open and close! At one point I could see all four chambers at once, quite amazing.

By the time we checked into the hotel and got to our room it was nearly 5pm. We took a few minutes to drop our things and headed off to dinner. Wouldn’t you know it, we found one of our favorites, Houston’s right down the road. We had a nice meal but the craziness of all the travel and the stress of waiting another 36 hours had caught up to me, I was exhausted.

We spent Wednesday working from the hotel, working out and swimming and then had dinner at a restaurant I had discovered a few years ago when I had to travel to Orlando on business, Seasons 52. They have a great grilled scallop dish that we both enjoyed and we were back in our room by 8:00pm.

Neither of us slept particularly well on Tuesday and Wednesday it was worse. Tossing and turning continued and we threw in the towel and got up a little after 6am. We arrived at the doctor at 9:30 and they were once again the epitome of efficiency. By 10am I had the trial drug in hand and was taking my first dose. A quick stop at their pharmacy for the Prednisone and we were on our way back to the airport.

I really despise airlines when they charge you to change flight. It cost $50 each for us to walk up to a kiosk, scan our boarding passes and use the on screen menu to change from the 4:10 to the 12:50 flight. $100 and not a single second of human intervention! Complaints aside, it was well worth it to get home three hours earlier on my birthday.

Perhaps I failed to mention that previously…yesterday I turned 48. As I look at those words on the screen in front of me I am taken back for a number of reasons. First, my how life flies by, 48! I also look at the header of this blog and think about all that has happened in the last 6 years. The highs, the lows, the ups, and the downs. The new friends I’ve made and cherish, the friends I made and lost, and those this disease has allowed me to reconnect with after so long. What a life I have led in such a short time.

Ahead lies more than a 49th, 50th and more. Birthdays are the milestones but everything that happens the other 364 days are a blessing. Take some time to slow down and enjoy them because once they are gone, you can’t get them back.

At the end of the day I pray that this new drug is successful in taming my disease for months and perhaps years to come. I would like nothing more than to look forward to 12 years from now and be able to post, “Yesterday was my 60th birthday and Mary and I stayed at home, had a nice quiet dinner and shared a cupcake with one candle on it!”

Dealing with the grind

Abiraterone, Advanced Prostate Cancer, David Emerson, PSA -

A friend asked the other day if Mary and I talk about what’s going on a lot. I explained that at home we are very open with Brad and that her and I talk as appointments near and as decisions need to be made, but we don’t talk about ‘what if’ much anymore.

As you can probably imagine that topic usually leads to tears. I think the last time I had a real good cry about this might have been three or four years ago. I’m not afraid to have the discussion and as a matter of fact a good cry is very cleansing. We just choose to focus our energy on beating the disease and don’t dwell on ‘what if’.

It’s not that we live in denial.  We have just learned to live in the now and we always try to remain positive. Thinking about death, and the end, and what happens when we run out of options is just not in our repertoire. There are far too many options that still lie ahead of us. None of them offer a cure, but they each offer time. Add them all up and who really know how long this can go on?

I’d be leaving something out if I didn’t say that it all weighs heavily on my mind. As I mentioned in my last entry, we have a new normal. I don’t care for it much at times, but for the most part, life goes on in some ‘normal’ way.

This is a big week in this journey. It reminds me somewhat of the days and weeks that led up to chemotherapy back in 2008. I am a bit nervous, certainly anxious, and will be very happy when this week reaches a conclusion.

Extra prayers to Brian and Kim in New Zealand tonight. Brian is in a similar stage as me and had to be taken to the hospital by ambulance. His pain had reached a point that he couldn’t drive himself.
This prayer is dedicated to Brian:

Prayer to Saint Peregrine ~ Patron Saint to cancer patients
O great St. Peregrine,
you have been called “The Mighty,”
“The Wonder-Worker,”
because of the numerous miracles
which you have obtained from God
for those who have had recourse to you.

For so many years
you bore in your own flesh
this cancerous disease
that destroys the very fiber of our being,
and who had recourse
to the source of all grace
when the power of man could do no more.

You were favored with the vision of Jesus
coming down from His Cross
to heal your affliction.

Ask of God and Our Lady,
the cure of the sick whom we entrust to you.
(Pause here and silently recall the names of the sick for whom you are praying)

Aided in this way by your powerful intercession,
we shall sing to God,
now and for all eternity,
a song of gratitude
for His great goodness and mercy.
Amen.

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!

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.

The first question and nearly every question that follows…

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

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”!

‘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!

Two years and nine months ago

Advanced Prostate Cancer, David Emerson, PCa, PSA -

After five and a half years and nearly 550 entries you can probably imagine that there are many, many times that I struggle to come up with a subject that is even faintly interesting. This is particularly true when things are  going well medically. This is one of those times.

Monday was my recurring four week appointment with my oncologist. The results were once again favorable, my PSA is down again and now stands at 28.69!  A reason for celebration! I just checked and this is the lowest level since December 2007!

I woke up Tuesday morning and thanked God, for a number of things: Mary, Brad, the support, love and comfort I receive from friends, family and strangers, and finally, a win by the Kansas City Chiefs! I try, most of the times rather feebly, to explain how much the process of living with this terminal disease has changed me. I look at things so differently and I hope some of you can see the changes through my actions and how I live my life. I am certainly not saintly, without sin, or without set backs, but I try to live a life that is more balanced and less stressful.

Less stressful you might be asking…How is that possible when you are living with a cancer that will, without a miracle or scientific break through, ultimately take your life? It’s really no secret, just don’t sweat the small stuff. On a daily basis nothing is going to transpire that will make a significant difference in the outcome. Eating right, exercising, remaining spiritual, are all required, a given if you will. So enjoy the little things, stop and smell the roses.

Great Prostate Cancer Challange – Kansas City

David Emerson, David Emerson pca, FLHW, Great Prostate Cancer Challenge, KCUC, PSA -

For those of you in KC, here’s a great walk/5k that you should put on your calendars.
Mary and I participated last year and really enjoyed it.

I hope to see you there this year!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Date / Time
Sunday, September 19, 2010 @ 8:00 AM
5K Race and 1 Mile Fun Walk – 8:00 a.m.
On site Registration – 7:30 a.m.

Address
10701 Nall Ave, Overland Park, KS
Northeast corner of I-435 and Nall in Overland Park, Kansas

Registration Closing Date
Pre-registration via website through Wednesday, September 16, 2010.
On-site registration Sunday, September 19, 2010 beginning at 7:30 a.m.

  • $20 Pre-race registration
  • $25 Race-day registration
  • $10 Fun Walk

Entry fees are non-refundable

Brief Description
Join us on September 19, 2010 for the 2nd Annual Great Prostate Cancer Challenge® in Kansas City to benefit ZERO — The Project to End Prostate Cancer. In the inaugural race last year Kansas City Urology Care donated $10,000 to ZERO and $5,000 to the Kansas City Prostate Cancer Foundation.

We are passionate about prostate cancer! We are dedicated to helping fund research and educating the
Kansas City Metropolitan area about prostate cancer. Help us make this passion come true. Sign up today
to run or walk.

Information and Sign-up