PCa

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!

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.

There are times when you just have to pray, and hold on

Advanced Prostate Cancer, David Emerson, PCa, PSA -

If any of you have watched the recent HBO mini series, The Pacific, there was a quote I had written down from Episode 2. I’m not sure the exact context of the statement. The series, produced by the same team that produced ‘Band of Brothers’, provides a glimpse of what these wonderfully brave men went through in order to defend our country. It’s rather gut wrenching at times.




The quote, “There are times when you just have to pray, and hold on”, stuck with me.With treatment and a doctor appointment coming up once again, I find myself in the 28 day funk I have mentioned here before. These four weeks between appointments just seem to fly by some months. 


I’m feeling great and believe, as Dr. S pointed out, that the radiation continues to provide benefits. Even with his recently positive comments, I don’t know what will happen next week, next month, or next year, but then again, do any of us? 

No worries, I’m fine, it’s just one of those moments when I find myself holding on and praying.

It is for her….

Advanced Prostate Cancer, David Emerson, PCa, radiation -

It is for her…

It is but your beauty
that which awakens me
and guides me
throughout my day, my life.

It is but your smile
the look in your eye
as you look upon me
the look that inspires me
and retains my desire to go on.

It is but your love
for him, for me, for us
the love that shines
for all who encounter you
The love that I cherish with all my heart.

Ooops, where does the time go?

Advanced Prostate Cancer, David Emerson, Oxicoden, PCa, radiation -

Sitting here watching the US Open, it suddenly dawned on me that it had been awhile since I posted. Not only had it been nine days, but so much has happened. Once I explain it all, my negligence will be understandable.

After my first three radiation treatments, basically over last weekend, I found myself once again in some considerable pain. The odd thing is that the pain on my right side, which initiated the radiation treatments was completely gone and now it was my left hip and femur that were causing discomfort. It was not nearly as bad as what I had been experiencing with the right side, but it was pretty darn close. Sleep was tough because I could only get slightly comfortable on my back. Using the Oxycodone every 4 to 5 hours, I was able to get through the weekend. On Monday I went in for my 4th radiation treatment and met with the Radiology Oncologist. I left with a prescription for 12 hour, time released Oxycontin. What a God send! I’ve been sleeping great since and was even able to return sleeping on my side that first night. Two days later I completely stopped taking the other pain medication during the day, so I now only need it at night to get some sleep without interruptions from pain.

Today I spent most of the day in the yard. My contribution was minimal, but I was able to pull a few weeds, stake and tie up the tomatoes and provided a slight bit of help to my brother in law as he worked feverishly through the heat of the day to replace some wood trim on the house.

On a related note I discovered something today; there are times when you just have to step back, face the facts and let people help you. I have always been the type to help friends, family, etc. Whether it be with a project in the yard, repairing a computer or whatever, I really take pride in lending people a hand. I however find it difficult to ask for help. Rich taught me something today, other people like to lend a hand as well! As I sat in the shade and watched him work like a horse, I knew how he was feeling. I truly appreciate his time, hard work and support.

Tomorrow is Father’s Day, and I think I’ll take some time to enjoy it! Brad is back from camp, Monday I have my monthly check up with the oncologist (hoping for another decline in the PSA!), a Lupron shot, and a Zometa infusion. After we have the visit at KU Cancer Center, Mary will take me over for my 9th of 13 radiation treatments.

Here are a few lyrics of a song I was listening to while writing this post ~

Life is a carnival
It’s in the book
Life is a carnival
Take another look

The Good, the Bad and the Ugly

Advanced Prostate Cancer, David Emerson, PCa, PSA, U2 -
I could have sworn I used this title before but after searching the blog, I’m in luck, the title is available!

Let’s start off with “The Good” – I’ve been off Advil for nearly two days. After experiencing quite a bit of pain in my left hip last week and earlier, things took a turn for the better over the weekend. I still don’t have full leg motion, but being able to put the Advil aside is great. I was at the point where I was taking 800mg every 8 hours. This isn’t an issue once in a while, but long term use at this level can cause stomach issues. I walked a mile yesterday morning and worked out for about twenty minutes this morning. While at the oncologist’s office yesterday I had my left hip x-rayed. If this turns out to be arthritis then it looks like I might add Celebrex to my daily dosage of meds. Updates on this to follow. It’s strange that I am hoping that it is arthritis. The alternative is not a welcome thought at this time.

“The Bad” also has to do with yesterday’s appointment. My PSA number came back and it has once again gone up a little. Currently my PSA is 129.6, up from 118.3 last month. No panic has set in, we just hope to bend the curve next month!

“The Ugly” is the fact that I will be looking for a job as of June 30th. Though I have known about this since September, there were some indications until yesterday that the date may be extended. It’s not all that terrible, I have 36 weeks of severance. Additionally, and perhaps most importantly, I can switch to Mary’s health insurance next year when mine runs out. With twenty years of experience in telecommunications and a pretty solid resume I have faith I’ll find something in due time.

Oh but there’s more…Looks like out air conditioner just went out! When the thermostat is set at 76 and the temperature in the house is 86, you know there is problem! To top that off, the U2 tour was just postponed until 2011, so much for my first live U2 experience this summer!

In closing, I want to add this cliché ridden statement; “It’s all good people!” Seriously, we’ve been down this road before and we’ll come out better when it’s all through.

Quite memorable

Advanced Prostate Cancer, Charity Disc Golf, David Emerson, FLHW, PCa -

I heard this on television last night; “The things you do for yourself die with you. The things you do for others lives on forever”

I did paraphrase this, and although I searched for the original source, I could not locate it. However, it remains my unwritten mantra. Even before I was diagnosed with prostate cancer, I was the type of person to jump in and help others without anticipation of reciprocal favors. This idea lives on in Faith, Love, Hope, Win. The foundation is not about helping David, it is and will remain about helping others battling this disease by supporting the research for better treatments and perhaps one day a cure for advanced prostate cancer.

Isn’t it sad that so many people in our society live with a mindset completely opposite, the old, “What’s in it for me?” approach to life. The gift of life is too short to live that way. I continue to believe I was put here for a reason and given prostate cancer in order to help others. “It’s not all about Me”, as I have said many times in the history of this blog.

~~~~~~~~~~~~~~~~~~
I am looking forward to Friday and Saturday’s FLHW events. I know they will go well, but I always get nervous leading up to our events. Once again the weather is forecasted to cooperate. Saturday will be a chilly 42 when we get started in the morning, but perfectly sunny with temperatures climbing into the mid-sixties!

I walked the disc golf course yesterday with the owner and his wife. They are truly good, generous people. Even though I have played the course a dozen times I couldn’t help express my gratitude to them for the use of this piece of property. To repeat an earlier description; where the subdivisions end on the south end of Overland Park is where this property and the ‘country’ begins.

With that thought, I close by repeating the quote I started with because it applies to these people as well as to myself: “The things you do for yourself die with you. The things you do for others lives on forever”.

A hectic week ahead for FLHW

Advanced Prostate Cancer, Charity Disc Golf, disc golf, FLHW, PCa -

On Friday, May 7th, FLHW will be hosting our 2nd annual ‘FLHW Friday Night at the Greenhouse’ event. The owner of Suburban Lawns and Garden will be donating 10% of all sales between 5pm and 8pm, at the 105th and Roe store to FLHW. He also provides live music, beverages and light snacks. It is a very nice event and will be a fun night! It’s also the Friday before Mother’s Day, so a great time to pick up some flowers!

Details? http://www.flhw.org/images/stories/pdf/2010%20greenhouse%20event.jpg

The following day is the 3rd annual ‘FLHW PC Doubles Shootout’. It will be played again at the beautiful Thornfield disc golf course, a privately held course in Stilwell, KS. This disc golf tournament will attract approximately ninety disc golfers for two eighteen hole rounds, lunch, a few beverages and prizes for the winning teams. As with the ball golf tournament, the day will run smoothly due to the help of the FLHW Board and the wonderful volunteers. This year we will be selling limited edition, commemorative discs. Even if you do not play disc golf, please consider buying one to help support the cause! Discs are $25 including shipping (domestic). Email me at ‘info at flhw.org’ if you are interested. We’ve already had some sales, which is great. There is a picture of the disc below. We appreciate everyone’s support! The picture on the front of the disc was taken at last year’s event.

Have a great week-end!

This is big, this is REALLY big!

Advanced Prostate Cancer, David Emerson, hrpca, PCa, Provenge -

Today the Federal Drug Administration approved Provenge for use in certain men with advanced prostate cancer. Here is the press release: http://bit.ly/bgfhul

This is the first new treatment for advanced prostate cancer to be approved in something like 15 years.

With an estimated 192,280 new cases of prostate cancer each year, and with approximately 27,360 men expected to die from the disease in 2009, this is significant. Just to be clear, this is NOT a cure. Provenge is a new treatment that has shown a survival benefit of four months

over the current treatment, Taxotere. Additionally, it is given over three treatments spanning a month and the side effects are significantly less than those associated with chemo (Taxotere).

There are a lot more details to be released from Dendreon such as availability, cost and where it will be available. Dendreon has provided more information at: http://www.provenge.com

My ability to use it in the future is uncertain. I’m not sure I will qualify and I’m not sure how much and/or where I can even get it for some time. The important thing is that it is now another viable option in my very narrow inventory of future treatment options.

All in all, a good day, no a great day for the cause!