Pain in the Ass

My Story

I never thought about Prostate cancer before, I had lots of other things to worry about. But it happens and here is the story of Prostate Cancer and me.

Working on it!! (can't do it all in a day - I need my sleep!)

Please stay tuned

February 2008

I had no symptoms but went to my Dr. to see about a TwinRix vaccination before I headed out on a Caribbean cruise - You may remember the commercial - "Did you know you can get Hepatitis A or B from an ice cube? If you are traveling to the Caribbean ask your Dr about TwinRix."  Well I asked and after looking at my file the Dr said "Oh you're 50! I don't have any recent blood tests - time to book a physical and we will see"  A week later I had a physical including a DRE (digital rectal exam) yes it is uncomfortable but I assure you it is not that bad. The Dr said my prostate was a little ``firm`` and sent me for a PSA (prostate-specific antigen) test along with my other blood tests for cholesterol, blood sugar etc,

PSA 558
Well my blood tests came back and the Dr. called to see me about the results. He said my blood sugar was a little high and my bad cholesterol was a bit high but then he came to the PSA... He said my PSA should be around 3.5 or less and that mine was 558! I asked what that meant and he said that he had never had a patient that got that high before they died. I was a bit in shock as I felt fine and he advised me that he wasn't quite sure what to do but send me for another PSA test to confirm there wasn't a mistake. In the mean time I hit the internet to see what I was in for. It became quite clear that if your PSA is over 20 you have a very high risk of cancer and at 558 you have cancer and will need something done and soon.
My second PSA test results showed that my PSA had risen to 638 in a little over two weeks time (about the max 3.5 increase daily!) and it was decided that I needed to see a surgeon so we booked an appointment and away I went.
The surgeon said my prostate was not a little firm, it was "toast". After a biopsy and a few other test it was confirmed that it had spread and was too late for surgery and I was sent to the next Dr. - Dr Chi
Dr.Chi said it was terminal and I had a life expectancy of three years and treatment would be palliative and he wanted to start treatment that day - I was given my first shot of"Zoladex" and told to come back in three months!! I had a few tests in between that determined it had not gone to my bones as is the usual case but had gone to my liver.

Dr. Chi's new life expectancy was now "lets just say less than three years"

the side effects are a pain - lots of sleep leaves me a pretty short day and then there are the hot flashes -  I know - no sympathy on that one.  Loss of bone density and muscle mass means it is very important to get lots of exercise.

done my work, now time to play

Tuesday May the 10th 2011 - Just past three years and going strong - just got my lowest PSA  yet!!

Team Pain in the Ass goes for the fourth run and hits it big.  We won top survivor team and raised over $10,000 in 2011 thanks to you!!!

November 2011 Gone to Mexico for my third annual farewell trip - things can't be that bad!

January 10th 2012 - new numbers look steady

February 7th 2012 - four years since my first PSA test - stay tuned for the latest forecast

April 2012 - Dr Chi admits that he didn't think I would make it past the first year. He has no idea why I am so sensitive to the medication but I know that the sleep, exercise and attitude seem to be working in my favour !

June 17th 2012 - our 5th year that Team Pain in the Ass participated in the 
  Safeway Father's day walk/run for Prostate Cancer:

we raised a new record of $11,268.06 - the top Survivor team in BC!! 
A great team and a great day - thanks everyone for your support!

July 2012 - PSA is up but still hanging in there. See where we are in October!

October 2012  Still going up but stay tuned
Remember Movember!

January 2013 results had increased to 1.09 (good number if you don't have cancer) but was the threshold for going back on another drug - bicalutamide - nasty side effects and I had been on a long break after my numbers came down. We decided that since the numbers were still linear that we will wait for April to go back on it as I got excessive breast pain and a few other side effects. Hopefully my #'s will go back down. We will see but keeping positive until I have to worry or run out of options. could be here 6 months or who knows maybe I will make 60!

June 17th 2013 Team Pain in the Ass raised over $9000.00 and was top fundraising team in the lower mainland! Thanks for the great support!!! I got to sing O Canada for the 900 attendees!

July 2013 - Back on the Bicalutamide :( but better than the alternative!!

August 2013 - The bicalutamide has brought my #'s down so will continue and see how far we can get. Hopefully low enough by October to go to one pill every 2nd day instead of daily.

August 31 2013 -Cruise for a Cause Gala fundraiser - I got to be the surprise guest speaker! 

December 2013 - PSA still coming down but not by much - on the pill until mid January minimum.

It is off to Mexico for the 4th annual final farewell tour!! It doesn't get much better than this.

May 2014 my PSA is still down and I am still on the Bicalutamide but it keeps me here!! Getting ready for the 2014 Safeway Do it for Dad Run - 10.8K - lets raise some money!!!! We did - over $8700.00!!

December 2014  The "Ron Johnson 2014 Pioneer Award" was presented to Jacob Gordon
at the Prostate Cancer Foundation BC 
Grant Awards on Dec 11th at VGH!!
Jacob Gordon a PhD Student in the Faculty of Pharmaceutical Sciences received the award for his research paper on targeting SR-B1 - mediated cholesterol influx and intercellular cholesterol synthesis to suppress de novo steroid genesis and castration- resistant prostate cancer progression. Thanks Jacob for the great work!!

June 2015 -Father's Day Run - we had a great turnout of " P.I.T.A.'s " for our 8th run/walk and we raised over $11,000. for Prostate Cancer Foundation BC and were the top survivor team''

August 2015 - my PSA is still stable and I am still enjoying life while I can. Wondering about your PSA? Talk to you Dr. about your options.  Or come out to the Prostate support group on the first Tuesday of the month. See details on the first page.

In 2016 and 2017 Team Pain in the Ass raised over $16,000 to bring our total to over $83,000!! How great can it get - so thankful for all the PITA's who have joined us for a walk or run on Father's day each year!!

Since May my numbers have doubled -not the best news but they have not run rampant and I feel just fine. I am still quite low .67 but the numbers are different for different treatments - If you have your prostate out you should be near zero. I still have my prostate but on Androgen Deprivation Therapy (ADT) it is best to get down to a low # and stay there - I have done quite well for the last 9 years so I can't complain. I guess it will just be another part of my journey!  

January 2018 - numbers still creeping up but not much to do till it gets higher and I can stop one of the drugs and wait it out. I have been back running a lot more after taking a long break with foot problems. Seems like I found my balance! 
I only ran 5k for 2018 - I figured I had done well for 10 years and would take a little break. I have no problem with the 5k and it was a very hot day!!

July 2018 - My numbers have been going up 1.2 ( double in 6 months) - not good but I dropped out a major sugar source and they leveled off - could be the extra running and the fact I lost 10+ lbs! 
Will see in November where my numbers are and will work from there!

Well my #'s leveled for the balance of 2018 and it's Jan 4, 2019 and I just hit 1.5
 - highest # since going on Bicalutamide in 2013
See the Dr on Tues. Jan the 8th -  still waiting for the 2.0 to change drugs. And at least it is not going up dramatically!

 I had run a couple 8k's in early February and then the snow hit and I wasn't taking a chance on slipping and sliding on the ice so took a couple weeks off!
Got my Feb 22, 2019 #'s  @ 1.8 - looking to get out for a few more runs and try to lose a bit of weight hopefully we can level off a bit. The longer I can stay below the magic 2.0 the longer I have before moving on to shorter term (for me) drugs.
Feb 27 - Got a 5k in today dry and no ice but a cold wind!! 

April 2019   Well I hit the 2.0 and stopped the Bicalutamide (Casodex). In May Dr Chi advised that I had 2 choices - Enzalutamide or Abiraterone. Since the Enzalutamide increases fatigue and reduces cognitive ability more, it was an easy choice as those are two of the biggest problems I have. I can barely remember how tired I am....
 I also had a chance to  be in a trial - double blind so I may get sugar pills with the Abitrateone and Prednisone or a new drug called Niraparib.

I went for initial testing and information on June 6th -PSA 2.5

All signed up for the new trial and waiting for blood / DNA tests and other testing and should start mid July on the new drugs. Psa has gone to 3.7

Well it's August 2019 and my PSA is 4.7  I go for a bone scan and CT scan and assorted tests on Aug. 30th and and my trial starts the first week of Sept. as they worked around assorted schedules. 
So I went for my final tests and talk to the Dr before I started the new drug trial on   Sept. 5th and found that the drugs I am on have shrunk the 

  metastisis to under the limits and I am not eligable for the drug trial!!  I sort of felt it was good news bad news as I wasn't sure what the next step would be after waiting so long. My PSA has risen to 6.1..... Ends up that  I am maybe eligible for a drug called Apalutamide which is for "nmHRPC "- Hormone resistant progressing cancer that does not show as metastatic on the scans. 

Who knows - after getting 11 years on a drug that usually lasts 3 months I guess I can consider myself pretty lucky and you never know.  

Started on Apalutamide (Erleada) in October 2019 - two weeks in I am feeling pretty good after a short bout of hormonal imbalance - extra hot flashes,irritaion, excessive fatigue and a little more than my usual worrying But my PSA has already dropped to 3.3 !!
I have my next appointment on Nov. 27 2019 and my PSA Nov. 22 has dropped to 1.1 so I am definitely going on the right direction!!
January 2020 down to .50
March 2020 down to .25 Unbelievable!!
Septmber 2020 I have hit my lowest # ever!! .09
Life goes on - don't waste it! Raymond James Father's day run