November 24, 2010

and in my human frailty....

Thanks to a friend Jeff for this video.
Stick with it, I liked the closing lyrics best.

Happy Thanksgiving to all.....

November 22, 2010

An all around bad news day

First off, no news about me, we are still waiting for the doctor to call with updates on potential treatments. I'll be calling tomorrow if we don't hear from him.

A good friend and fellow PCa survivor just received some real lousy news. Although his PSA has been low for the past few years, it started to increase slightly. He had new scans and unfortunately he has a few new tumors and must pursue a new treatment. He also looked into XL 184 but the current trial would require too many trips to the doctor. He's young and would like to continue to maintain a full time job, much like myself, so the logistics of the clinical trial pose another challenge to the 'next treatment' decision. I have corresponded with him over the last five years and hope to meet him in person some day.  My prayers go out to him and his family.

On the other coast there is a young couple who are struggling with their current treatment. He is my age and is in the midst of a clinical trial that is proving to be rather tough on him.  The side effects are becoming rather severe.  His wife posted earlier that they had spent most of the day in tears, so once again, my thoughts and prayers are with them as well.

In the spirit of Thanksgiving,  I ask that you join me in sending  your prayers their way. If you're not a praying person, at least send positive thoughts their way.My heart goes out to both families during this difficult time.

November 16, 2010

The first question and nearly every question that follows...

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"!

November 12, 2010

I got the music in me

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.

November 11, 2010

Help me help the PCa community!

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


November 09, 2010

The times they are a changing, again.

 The times they are a changing

I'm a little late in getting started with the blog this month, but after today's Oncologist appointment, November is certain to be full of updates.

My PSA is up from 36 last month and now sits at 52.

This is not the news I was looking for at all. It seems that after seven months DES (estrogen) has run it's course. Though I am feeling fine, we now find ourselves at a crossroads once again. We have several options we are going to pursue and the plan is to review these with Dr. V when we meet with him next Monday.

One option is Provenge. I have written about it here before, but at a high level it is a new and emerging class of drugs called 'Immunotherapy'. Provenge is administered in three treatments over a one month time frame. With each treatment the patient spends several hours having their blood cells extracted through a process called 'Leukapheresis'. The extracted matter is sent to a laboratory where it is merged with Provenge, fermented and three days later sent back to be re-infused into the patient. There are two outstanding issues with this option: Will insurance pay for it? If so, can we find a location with supply such as Omaha or will we have to travel further? (the drug was just FDA approved in April and remains in short supply until next year)

Another option, and the one we prefer, is a drug still being evaluated in clinical tests called Abiraterone. The latest news from Johnson & Johnson is available here. Again, at a high level;  Abiraterone acetate is a novel, targeted, investigational, oral androgen biosynthesis inhibitor being developed for the treatment of metastatic advanced prostate cancer that has progressed after developing resistance to conventional hormonal therapies. This is also known as castration-resistant prostate cancer (CRPC).
There is a Phase II trial I might be eligible for but we'd have to travel to San Francisco a number of times.  Additionally, Abiraterone is also going to be made available through expanded access, as a non-blinded Phase III trial, but the timing for that approval may be longer than we are comfortable with, as it could be late December or into next year.
There is a third drug called XL 184 that I found out about through friends at the Prostate Cancer Foundation. Once again, there is a timing issue and an eligibility issue with my specific case.

All of this will be reviewed on Monday.  After we review the options with the doctor, we will make the decision we feel is best at this time.  The bad news is the test score and the increase in my PSA level. The good news, if you can call it that, is that we have a few options in front of us.  The challenge with the options is the timing and availability of the drugs.  Treading through the gray area of decision making is always a bit stressful, but we choose to remain positive and continue to have hope and faith that we will select a treatment that responds favorably.