Zytiga

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.
~~~~~~~~
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.

Great insight on Cabozantinib (XL 184)

Advanced Prostate Cancer, Cabozantinib, David Emerson, PSA, taxotere, XL 184, Zytiga -
There is a flurry of XL 184 information circulating after last week’s ASCO conference in Chicago. This link to MedPageToday includes a brief video interview with Dr. Maha Hussain, University of Michigan.
On a personal note, this is the drug that we are pursuing for my next treatment. There are currently open Phase I and Phase II trials, though neither are available in Kansas City.
The Phase II trial is recruiting in multiple locations, it looks like Las Vegas might be the best option for me. The Phase I trial is only available in Boston and though it is currently full, they will likely recruit 11 additional patients to expand the trial in late July. My Oncologists’ office is currently helping us determine if I qualify for either trial. Stay tuned!
If this doesn’t pan out, and because I am not responding to the Zytiga, my other option will likely be Taxotere, i.e. chemotherapy. If we do go down this path I will discuss using Taxotere in combination with some other drug in an off label or experimental basis. I’m not sure if there is anything available, or if this even makes sense, but we will be discussing these options with my Oncologist.
I have thought about Provenge but becasue it does not immediatley have an impact on PSA, it is not a path I am ready to pursue. 
Overall my health remains stable. I continue to have a few minor aches and pains from time to time but it is easily alleviated with a few Advil. 
My thoughts and prayers are currently with Terence in Seattle and Brian in New Zealand. I ask that you send your prayers and/or positive thoughts their way as well.

Hit me with your best shot.

Advanced Prostate Cancer, David Emerson, PSA, XL 184, Zytiga -
On the Thursday (May 19th) before my last trip to Atlanta, and vacation in Florida, I had my monthly appointment with my local Oncologist.
My PSA was 383, UP considerably from April. This was followed by a PSA in Atlanta that was up considerably as well (I’ll post historic numbers in a later entry).
This was not the news we were looking for and in all likelihood means Zytiga (Abiraterone) is not working. Though the Oncologist’s office in Atlanta was able to get me transitioned from the trial to receiving the drug via prescription, it was a poor consolation prize.  In order to close out the trial I will have to return to Atlanta one more time in mid-June and because I had already purchased the tickets this is no real burden.
What lies ahead is either another clinical trial or chemotherapy. Having been through chemo before this does not scare me since I tolerated it so well. What does concern me is the fact I did not have very good results from chemo back in 2008. The clinical trial would require considerable travel to Boston; every three weeks for the first 5 treatments and then every 6 weeks. While I was frolicking in the sun last week, Mary spoke with the study nurse and now we are waiting for a call back to proceed with the process of qualifying for the trial. The drug, XL 184 (targets the cancer tumors in the bone) has shown unprecedented results in previous trials and I pray that I can get into the trial as soon as possible.
 
On another note, the Prostate Cancer community lost another of our brethren last week when Walt, a gentleman from Alabama passed away. I didn’t know him well, although we did exchange several emails from time to time. I am saddened and pray for his wife and family.
I dedicate this prayer to Walt and his family….

Hail Mary, full of grace, the Lord is with thee; blessed art thou amongst women, and blessed is the fruit of thy womb, Jesus. Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death. Amen

…. for a reason.

Advanced Prostate Cancer, anna maria island, David Emerson, metastatic, PSA, Zytiga -

Ever since I’ve known Mary (25+ years) she always has used the expression, “Everything happens for a reason”.

While we were at the beach we spent a lot of time looking for sea shells. One afternoon Brad walked up to the north end of Anna Maria Island and while looking for shells he lost his blue silicon FLHW bracelet.

Then, on Tuesday while we were at Busch Gardens I received the following email:

As I was strolling along the beach at sunrise this morning on the north end of Anna Maria Island in Florida…I noticed a blue bracelet at the edge of the sea…just sitting there mixed in with all the beautiful shell shades….so I picked it up and read Faith Love Hope Win www.flhw.org.

Upon returning home I went to your website and I am still dazed and amazed at what I found. My husband passed to heaven 20 years ago…he was 42…our daughters were 5 and 8 at the time….he had prostate cancer. Not quite sure yet what his message is to me here… just thought I would share this with you. In light, LM

I hope your reaction was like mine. WOW! A coincidence? Perhaps it was, but I believe it was something more. For her? For me? I’m not sure and I may never figure it out. Anyone could have found the bracelet, but it ends up in her hands and with her story it had to happen for a reason.


I met her on the beach one morning and we walked (a long way!) and talked, and talked and talked. She told me about her husband and daughters and I told her about Mary and Brad. It was probably the fastest 90 minutes I have experienced in a long time. The discussion was fascinating, enlightening and touching.

Reflecting a few days later I am left with the thought of how much she still misses him twenty years later. I was also left with the thought that perhaps I had just met Mary, twenty years from now?

AMI – 5.21-5.28

Advanced Prostate Cancer, anna maria island, David Emerson, PSA, Zytiga -

After Brad and I spent the night in Atlanta we boarded a plane on Saturday morning. Instead of heading back to KC however, we continued further south to Tampa where we met my dad and brother Dan.

Brad always teases me about renting a ‘cool’ car versus a ‘dad’ car. The rental was supposed to be a Taurus or similar car but it didn’t take much arm twisting on the part of the man at the rental counter to upgrade us to a Chrysler 300. This is currently one of Brad’s favorite cars so when I pulled up outside the baggage area in the red 300 I thought his jaw was going to hit the ground.

The weather in Anna Maria Island, FL was perfect all day, everyday. No clouds, 85 degrees and a gentle breeze. We spent each morning by the pool and afternoon at the beach. The only exception was Tuesday when Brad, Dan and  I went to Busch Gardens to ride roller coasters.

Each night we ate fresh seafood, key lime pie and basically just chilled out. It was fun, relaxing and just what the doctor ordered, so to speak. There are a few more observations and incidents to report, but that will be part of my next update.  There is also a medical update, but that too will have to wait for now.

Are you kidding me?

Advanced Prostate Cancer, David Emerson, MARTA, University of Kansas Cancer Center, Zytiga -
I am always reluctant to celebrate good news too soon after hearing it. There is usually a ‘but’ attached to its arrival.

In this case it was last week’s announcement of the FDA approval of Abiraterone (the clinical trial medication I am currently taking). Once the drug received the official approval, all work on opening up additional trial sites ends and the focus for the drug manufacturer becomes the launch of the product. While this makes sense from a business perspective, what this means for little old me is that the University of Kansas Cancer Center drug will not be an approved trial site. It also means I will be returning to Atlanta monthly until my insurance company begins approving the use of the drug for its customers.

Just another case of really, really bad timing and that is the positive spin on what just happened. Actually, I remain thankful that I am receiving the medication in the first place and am confident that eventually it will all work out.
So it’s hello again Atlanta! Welcome me back MARTA train and to the cute little red Prius Zip Car at the Arts Center, you are on notice – I’ll be back for you a few more times.
I’m not even going to predict if late May will be my last trip, because it will likely be June, July or God only knows.

Exposed once again

Advanced Prostate Cancer, David Emerson, JnJ, Zytiga -
Tuesday I had the pleasure of speaking to a large group of pharmaceutical employees. I traveled to Newark on Monday and Tuesday morning at 11:30 I exposed my heart and soul, the good, the bad, the ups and the downs of this journey. I really missed having Mary there this time.  She is my rock.

The audience was warm and receptive.  I hope that it was well received. I appreciate these opportunities, I  enjoy sharing my story, but even more, I enjoy educating people about the disease. I look at it as one small victory at a time. If just one or two people leave that meeting and either get checked or encourage a loved one to be checked, it was well worth my time I would consider it a success. If not that, perhaps someone heard me when I encouraged the audience to eat better and exercise more and to not wait until something happens to make a change. I guess I’ll never truly  know, I always leave these events feeling hopeful.

I met several really wonderful people again and I even discussed disc golf with a few people before lunch. Seems I should have brought a few discs and played a course at Rutgers University. Maybe another time!

As I mentioned before, this month is very hectic, so this is all I have time for now.

Guess who’s at it again?

Advanced Prostate Cancer, David Emerson, JnJ, Zytiga -

Tomorrow I’m off to Newark, NJ where I will have the privilege of sharing my story once again. I will be speaking in front of several hundred marketing and support employees for a large pharmaceutical company. It is an honor to share my time with them and to provide a brief glimpse of prostate cancer from the patient’s view.  I will basically be repeating my presentation from March, and sharing my six year journey with prostate cancer.  http://flhw.ddmpreview.com/the-big-speech/

It’s not one-hundred percent serious. I try to work in a little humor, as to not completely depress the crowd after 30 minutes. As I was preparing my notes I came across the slide where I explain that although I am honored to be there, I am not standing up there alone, but rather representing all the other men fighting the disease. I list the names of many of the guys I stay in touch with on line and then I show a list of five men whom we’ve lost over the years.

What stopped me was the fact that I need to add two names to the list. One was the father of a man who resides here in Kansas City. The other man’s daughter had reached out to me years ago when he was first diagnosed. I was quite saddened last week when I received emails from both letting me know their fathers had passed.

This is the truly sad part of this disease, when good men die. And now I find myself speechless. I pray this doesn’t happen on Tuesday morning. I will try my best to maintain my composure as I share my story, but there are times like this when I am reminded how much I hate this diesease!