Advanced Prostate Cancer

Worried? Not enough to stop the getaway

Abiraterone, Advanced Prostate Cancer, David Emerson, LA Lakers, LAX, Tommy's Burgers -

When will I stop worrying? The answer is likely, never.

It is true, I have started the next step in the journey, but the way that this whole process evolves in my mind is a little tricky. As I go through this post I hope I don’t leave you with the impression I am not grateful or that in any way I am not thankful for the opportunity that this new drug provides.

The next, and first measurement will be a PSA blood test in four weeks. In between I will have my potassium level and other markers measured but the key marker will be the stabilization of my PSA, and eventually the lowering of the PSA. As long as this continues every four weeks I will remain on Abiraterone indefinitely.

You may be saying, great that will make you so happy. Well on one hand yes it will, but on the other I will return to living my life in 28 day cycles. I would give practically anything to have 6 weeks, two months or more without having to worry about this disease. As I mentioned in my last, it’s an emotional grind and yes, I should be cherishing this opportunity but not yet. I pray that it comes in time.

I was able to put it aside from time to time this past weekend. After spending Thursday night back in Kansas City I left for Los Angeles on Friday to help a friend with some business. There was a convention in LA that I agreed to help him with last minute.

We arrived on Friday around 2:00 pm and were pleased to see a convertible Mustang waiting at Avis. Though it was the color a blue Smurph would have envied, we didn’t express any complaints.  Our first appointment was about an hour south of LA so with the top down and the temperature a perfect 72, we hit 405 south.

It was around 4pm when we got back on the highway to LA and we began discussing how much we’d be willing to pay for Lakers tickets that night.We got a real bargain on StubHub, better yet, he had a connection that got us into the club level for the game.  The Lakers ended up losing but it was a fun time and a good experience.

We spent Satruday at the trade show, hit Tommy’s Burgers (I passed on the burger), drove up and down Rodeo Dr. and watched ‘Due Date’ before calling it a night. Sunday we grabbed some breakfast, returned the car and returned to LAX. [side note: back and forth to Atlanta and LA in one week, no one at the TSA came close to patting me down and the security personnel were all pleasant.] We spent about an hour in the terminal brain storming ideas for business and then back to the cold midwest with new stories forecasting a blizzard in the coming week. for Kansas City. It was a nice distraction and freat way to end a very stressful and hectic week. J, I owe you big time!

Today I had my monthly Oncologist visit and I received the standard shot and infusion. My PSA spiked but it was a different lab than last week and I’m now five days into the treatment. It’s too early to tell if anything had changed so I’m going to mentally discard today’s reading. It’s the test on the February 24th that will hopefully  start to indicate how things are going.  Dr. A in Atlanta did attempt to set our expectations by explaining that a patient does not typically see a positive response for a month or two.  We will do our best to have patience.

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.

Go west, young man

Abiraterone, Advanced Prostate Cancer, CT scan, David Emerson, Provenge -

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’.

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

Abiraterone, Advanced Prostate Cancer, David Emerson, PCa, Provenge, XL 184 -
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.