David Emerson

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.

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”!

I got the music in me

Advanced Prostate Cancer, David Emerson, Frank Zappa, Kenny Chesney -

Ain’t got no trouble in my life
No foolish dream to make me cry
I’m never frightened or worried
You know I always get by.
I heat up
I cool down
Something gets in my way I go around it
Don’t let life get me down
Gonna take it the way that I found it
~~~~~~~~~~~~~~~~~~~~~~
Through all the ups and downs of this battle, the one thing, aside from the support of Mary, family and friends, that is a constant and that is music.

For you regulars you know my taste is all over the place. When I wrote this on Wednesday I had already listened to a variety consisting on amongst others; Peter Frampton,  Frank Zappa,  Jason Aldean, Kenny Chesney, Dave Brubeck and Keb Mo.

It’s the escape, the flood of memories, the highs, the lows, the smiles, the tears. I never learned to play an instrument, I wish I had. No regrets becasue not being able to play has not tempered my love for music.

Help me help the PCa community!

Advanced Prostate Cancer, David Emerson, MEDCAC, PCa, Provenge -
As I mentioned yesterday, one of the options that might be available to me is a new drug called Provenge. Though this treatment was approved by the FDA back in April, Medicare is still dragging their feet.  I do not have Medicare, but this decision has an indirect impact on my insurance coverage because most private insurers follow the lead or negotiate the amount they pay the pharmaceutical companies, based on the decision of Medicare.
The Medicare Evidence Development & Coverage Advisory Committee (MEDCAC) of the Centers for Medicare & Medicaid Services (CMS) meeting is Wednesday, Nov 17th. Discussion will focus on the currently available evidence regarding the clinical benefits and harms of on-label and off-label use of Autologous Cellular Immunotherapy Treatment of Metastatic Prostate Cancer (aka Provenge), and if it is adequate for the Committee to advise that the treatment costs be covered by Medicare.
THIS should be very important to all of you, regardless if you or a loved one has Prostate Cancer. Why? This is a landmark and historic decision by MEDCAC as they are evaluating for the first time ‘how much is too much’? Depending on their decision, it could have historic impacts on other cancer treatments, as well as other medical treatments in general.
We still need your help…

For those of you who have not already signed the petition, please do so by clicking the links below. If you have already signed it, I thank you for your action, but ask you to please forward this email to family, friends, and anyone who might be interested in signing it.

Help me help the PCa community and sign the online petition NOW

David

‘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.

Six is magical

ball golf, charity, David Emerson, FLHW -

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.

My visit to The Hill

David Emerson, Senator Brownback, The Hill, ZERO -

Earlier this week I had the honor of attending the 2010 Summit to End Prostate Cancer. This annual event is sponsored by ZERO (zerocancer.org), an organization that focuses on lobbying Congress on behalf of prostate cancer.

The 2010 Summit focused on effective strategies for increasing the federal investment in prostate cancer research and on the last day of the Summit, we had the opportunity to meet with our elected officials on Capitol Hill.

There were hundreds of people present, primarily survivors, their family members and advocates. We came representing the hundreds of thousands of survivors and family members whose voices are not heard by our elected officials.

Although the US government has spent hundreds of millions, perhaps billions of dollars on prostate cancer research, it’s not enough.  In order for a cure to be found, the research must continue to be supported. With 217,000 men diagnosed each year, the need for a cure cannot be denied. The most impressive presentation for me was given by the Program Manager for the Department of Defense Prostate Cancer Research Project. Her project is funded annually with $80 million dollars. Though this is a considerable sum of money, the amount has remained flat for the last five years and is actually down from $100M from the proceeding four years. This is a travesty, we aren’t even keeping up with the rate of inflation. As Ms. Best explained, this leaves her with no choice but to fund fewer research projects on an annual basis.

For me, I departed with the feeling that it is all moving at a snail’s pace. It’s like watching paint dry or grass grow.

I was forewarned that I would in all likelihood just be meeting with staff members of the two Kansas Senators and our Congressman. My first meeting with Senator Roberts was in fact with his staff. Both ladies were very cordial and took rather extensive notes during the meeting. The Senator however is as fiscally conservative as I am, so am not sure my meeting will make a difference.

My second meeting with Senator Brownback began with a senior staffer but much to my surprise, after two minutes, the Senator stuck his head into the meeting room and asked what we were meeting about. When I replied prostate cancer, he shut the door and joined us.

For the next 25 minutes I had his undivided attention . He was truly interested in my story and expressed sincere empathy for both me and the prostate cancer cause in general. We also spoke about how cancer changes you, in our cases, for the better.

When I flew home a few hours later it turns out he was on the same flight. At one point during the flight he recognized that I was four rows back and took a few minutes to come back and thank me for coming by and sharing my story and concerns with him. We may never see each other or speak again, but I felt like I had made a friend and my message promoting the importance of research for a cure for PC was definitely heard.

In addition to the Senator, I made a number of other new friends from Charlotte, Austin and a number of other locations. Washington is a beautiful city but the inner workings of the federal government would be a bit too frustrating for me.

Once again, many, many thanks to Skip and everyone else at Zero!

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.