September 13, 2011

UPDATED: The ugly truth

The pictures below are a comparison of my first and most recent bone scans. The picture on the left was taken in Boston last month. The one on the right was my original bone scan from February of 2005.

Both cause me to take a deep breath and acknowledge just how serious my situation is.
I’m not going to speak to 2005, it was a long time ago and it is water under the bridge.
However, last month’s scan, as I wrote here before,  was and is a bit difficult for me to look at.
The areas of most concern to me are: the base of my skull, right shoulder (the scan is from the back), left lower femur, upper ribs (both sides) and spine. It doesn’t leave much NOT to be concerned about! You can probably imagine why, after seeing this last month, I decided to stop playing disc golf for a while. In closing, I would like to add – ‘Come on medication!!’
I love the double entendre, today’s post is a triple! Here is the second part.
After receiving my two shots yesterday, we asked the nurse to check on my PSA test.
It was ready for once and as she handed the printed page over she commented, ‘wow, it really went down a lot!’ She hands me the print out and it shows my PSA at 71.4!  Mary started to get really excited, but I cautioned that there must be something wrong. XL-184 doesn’t impact PSA to this degree, and surely not so quickly. I had taken 14 doses so far. We stopped by the Oncologist's office before leaving where they confirmed, the the machine in the lab errored and the decimal point was in the wrong place (Oops!!!!!!!!!!!)  The real number (unfortuantely) is listed below.

So here is today’s third ‘ugly truth’, my PSA for the past 18 months. On one hand, because our focus is on the current trial (XL-184), we are not investing much energy in dwelling on the numbers. Our hope lies in the new med and that is where we are focused. The trial uses the scans to measure the success of the treatment and the first updated scans will not be done until October 11th. On the other hand, the PSA trend is very concerning. Below is snapshot of the PSA trend and treatment changes for the last 18 months.

The Oncologist office called this morning. Apparently the lab was REALLY screwed up Monday. They re-ran my PSA three times. It turns out it was 595, not 714. Quite a difference and quite a relief!


Anonymous said...

You and Mary are a tremendously awesome fighting team! We are praying now more than ever for a cure!


Bob Evans said...

While we only met last year at the ZERO Summit, I very much enjoyed meeting you and am inspired by your fight. Keep fighting and I'll keep praying for you and for a cure.

Terry Herbert said...

You're an amazing bloke, David. What else can one say about your courage in the face of this dispiriting information? You are an absolute inspiration to so many people.

Here's hoping that those new meds will kick in soon

Anonymous said...

I second what Terry said. Love you very much David!


Puch said...

Dave, I just spent quite sometime going over your entire site and listening to all your radio and TV spots. Outstanding work! You are teaching many people much more then you will ever know! Especially your son! Im proud of you!

MP said...

Wow David the numbers very harsh, the scans very scary.... they don't say a thing about the man living in those bones; the brain that's thinking of ways to increase funds to increase medical research and improvement in treatments; the heart that shares, supports and inspires others in their fight against this horrible disease. I see in those scans a wonderful father, a strong advocate and a good friend. I see in those scans a man that is way to young for such advanced disease. I'm sorry for you and pray that something is found that kicks that cancer and allows you a long life. Your Friend - MP

Anonymous said...

have you ever looked into Tak 700 or MDV 5100 or ARN 509?

tak 700 looks more promissing than abiraterone from the anecdotal evidence I found on many different forums

it is still in late stage clinical trials at this point

Anonymous said...

MDV 3100, not 5100, just to correct the typo

Marylanders said...

What a day... again, thanks so much to you for sharing your experiences and thoughts. It helps others traveling the same difficult path know that they are not alone. Courage is truly contagious!

Dan said...

David, hang in there. I was on XL-184 (100 mg/day) for 7 months, and during that time my PSA went from 143 to 775--but I lost all pain/numbness in my pelvis and most bone lesions healed over (lymph nodes stayed unchanged, but didn't increase in size). Four weeks after discontinuing XL, PSA had dropped to 445. As my oncologist said, "we'll ride this pony as long as we can..." but what a bumpy ride. The key outcome is improved bone status and reduction of pain, not a PSA drop. And ouch, I hope that lab gets their act together with test results!

Anonymous said...

David, you are a true inspiration to many...I wish you good fortune in your fight.

Beth L. said...

David, keep up the good fight! Best wishes with XL-184.

Anonymous said...

God loves you and He is with you always