Atlanta

Not knowing might be a good thing. Then again….

Abiraterone, Advanced Prostate Cancer, Atlanta, David Emerson, MDV3100, PSA, Zytiga -
From half a world away, a quote that so succinctly captures my mental state, I had to include it in today’s post.
I have been exchanging emails with Ivan from Australia and in his most recent communication he stated the following:
“I sometimes find myself caught between wanting to know everything and wanting to know nothing.  It’s a confusing place!” 
It’s almost like he read my mind.  For those of you not battling cancer, the beauty of this quote may not be clear, but for me this is perfect. At times I think I want to know what is going to happen, when it’s going to happen, etc. On the other hand, perhaps I’m better off not knowing the details and the timeline.
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Yesterday was my last trip to Atlanta. The Oncologist’s office had asked a few weeks ago if I could see the doctor one more time to ‘close out’ the trial I had participated in for Zytiga (Abiraterone).  I agreed and looked forward to the appointment as an opportunity to talk with the doctor one last time, as he was not in the office for my last visit. He started off by stroking my ego a bit. Apparently the doctor I met with last time  (his partner) made rather complimentary notes that I was an exceptionally informed PCa patient.  He said something about not having seen a patient like me in a long time. (I am hoping he meant that in a positive way!) Then there were additional notes about my good looks and handsome off spring, as Brad was with me last month.  JK!!
We talked for twenty minutes or more. He was in agreement with our plan to pursue XL-184. He also said we should keep our eye on MDV 3100, and if we need to consider chemo, there are several options. In closing I must reiterate that if I lived in Atlanta, or the region, I would see this doctor without hesitation! Although I have not responded to the treatment as we had hoped, the experience participating in this clinical trial has been a good one.

Your co-pilot on this flight will be…

Advanced Prostate Cancer, Atlanta, David Emerson, PSA -

Friday Brad made the marathon trip with me to Atlanta. I figured that since he is now officially graduated from 8th Grade, as of Thursday night, he has a little more time on his hands.

Instead of the usual marathon, I thought I’d make it a little more special for him so we stayed the night in Atlanta. Everything else was the same; the early morning flight, the MARTA, the Zip Car Prius, the doctor appointment, etc. I did rent the car for an extra hour so we wouldn’t be so rushed to return the car and get to the hotel.

We laughed, we ate, we hit a few Starbucks, we swam at the hotel, we enjoyed the beautiful Atlanta Spring weather, we stayed up late and watched movies and woke up totally exhausted. My kind of get away!

There was more… but you’ll have to come back for that part of the story!

Up, however

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

I received a call from Atlanta Friday morning with my PSA results from Thursday. Below are the four results I received from my trips to the doctor in Atlanta. For the record, January 27th was the day I started the trial.
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Date          PSA        Rate of Increase

27-Jan      200
24-Feb     250          20%
24-Mar    293          15%
21-Apr    328           11%
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At first blush, yes my number is up again, but the good news is the rate of increase continues to drop.
Additionally, when I talked with Dr. A Thursday he indicated that he has had several patients that he took off the trial after two to three months. Unlike my case, these men continued to see a rapid rise in PSA and, more importantly, a progression in bone pain. Although my number is up, the rate is slowing and the number of and severity of the aches and pains I experience are down from the previous visit.

Today I am seeing my local Oncologist. The bad news is that KUCC is not yet able to accept patients for the trial. I am less hopeful that they will be ready by May 20th, the date of my next check-up. I have made a few inquiries through some connections and should have a better idea by tomorrow.

In the past few days I received two separate emails with sad news. We lost two more men to this dreaded disease. One in his late 60’s the other in his late 70’s. Some what older than me, but still hard on both families.
In one case the man’s daughter said that though her dad was not much for computers, he always asked ‘how’s the young guy with the blog doing?’ From time to time she would update him on my progress and she indicated in her message he found it inspiring. That makes me feel good, I just wish the entire circumstance was different.

How many more have to lose their battle before we make a break though?

Monday’s a pain but Thursday’s a grind

Abiraterone, Advanced Prostate Cancer, Ash Wednesday, Atlanta, David Emerson, spring -
I made my third bi-weekly trip to Atlanta this past week. Although I’ve got the thirteen hour round trip down to a science, last night I realized how quickly it has become a real drag.
I’m getting quite a bit of reading done, and I sleep really well on Thursday nights after the trip .However, half way though the three month bi-weekly process, I’m ready for it to be over.  It’s very worth every trip if we see a reduction in my PSA and we are able to regain some control of the caner with the Abiraterone.

There is a rumor the same trial will open here in Kansas City, perhaps in April. That would be ideal since I have already booked the flight for the next three trips. I have held off the April 24th trip because of this and because the airfare on that particular date is $300! The chances of the rate changing are slim, but you never know.

I saw blooming dogwoods while I was on the MARTA Thursday and that means one thing, Spring is here. My favorite time of the year! Ash Wednesday, Lent and soon Easter. Our hyacinth are peeking up and I really cannot wait to get outside and spend time in our yard.

Thursday’s grind will certainly get tougher over the next few weeks as the signs of Spring continue to increase.

Trailblazing….

Abiraterone, Advanced Prostate Cancer, Atlanta, David Emerson, David Emerson pca, FLHW -
It was just a brief comment during a phone call. The friend, and fellow PCa patient, said something to the effect of  “You are out there trailblazing for me and the rest of us!”
Trailblazing? Wow, I never looked at it that way. Perhaps I was living in a momentary bout of selfishness? I was looking at my current clinical trial from a me, me, me point of view. Yes, it is true I really need this treatment to work, but just as important, we, all of us fighting this disease, need it to work. 

This past week I have been dealing with a bit of back pain. It is manageable, but I do plan to discuss with Dr. A in Atlanta on Thursday and with Dr.V next Monday. It’s on my right side and feels like it is in the middle of one of my ribs. After doing some research on line this afternoon, I learned that back pain is one of the listed side effects for the clinical trial drub, so I am hopeful that is the source of the pain, versus a bone met.   Tylenol and Advil have been taking care of it and I have spent the last few nights sleeping on the heating pad, which has helped as well.


Tomorrow I will complete my second one-day round trip to Atlanta. When I printed my boarding pass for the departing flight this morning, the forecast said 61 and sunny in Atlanta. I just print the boarding pass for my return flight and the forecast says 41 and snow flurries in KC when I return! If my flight is oversold, I might just have to get off and stay the night. (Just kidding Mary!)