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  DIAMOND  
This is his Country or State Flag

Terry Allen lives in California, USA. He was 55 when he was diagnosed in August, 2002. His initial PSA was 4.70 ng/ml, his Gleason Score was 7, and he was staged T1c. His initial treatment choice was Surgery (Retropubic Prostatectomy) and his current treatment choice is ADT-Androgen Deprivation (Hormone) (Other). Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

In June 2002 my PSA moved to 3.5 ng/ml from the prior year's 1.2 ng/ml. My GP referred me to a Urologist and by August 2002 my PSA was up to 4.7 ng/ml and a biopsy was done. It was positive in 2 out of 8 cores and I was staged T1c.

Did RP surgery in Sept 2002, pathology report knocked the tar out of me... Gleason upgraded to 8... one positive lymph node and microscopic trace in my seminal vesicles.

PSA stayed at 0.06 ng/ml until Feb 2004 when it rose to .17 ng/ml. I started hormone therapy in March after doing bone scans, ct scans and MRI where nothing showed up.

In May 2004 did 30 IMRT treatments...PSA stayed at 0.05 ng/ml until Feb 2006 when it rose to 0.12 ng/ml ... by April 2006 it was now 0.21 ng/ml. My doctor says we will repeat PSA again in 60 days, then talk about some scans. We have not decided on a number to restart hormones...I'm thinking between 1.0 - 2.0 assuming it continues to rise...I'm hoping my doc is on board with this.

I feel physically great but mentally well that is a different story...I'm going to have to learn to live with PCa.

UPDATED

August 2006

In June 2006 PSA moved to 0.26 ng/ml from April's 0.21 ng/ml, in August PSA now at 0.31 ng/ml ,so it is moving slowly for now, will continue to monitor every 60 days. Not sure when I'll go onto ADT3.... thinking at some level above 1.0 ng/ml, hopefully that may be many months yet.

UPDATED

November 2006

In Oct 2006 my PSA moved up again ...to 0.40, I consulted a new oncologist who agreed with my prior doc that it was premature to start ADT at this PSA level.

I was offered a chance to enroll in a Phase II Clinical Trial using high dose Calcitriol and very high dose Naprosen (Aleve), each agent is thought to slow the PSa progression, so hopefully the two together will work even better.

I return for a battery of tests in early Jan, we'll see what happens.

UPDATED

June 2007

Under the Clinical Trial I started high doses of both Calcitriol and Naproxen sodium in November 2006, my PSA had risen from 0.4 in mid Oct to 0.5 in November.

In Jan my PSA was stil at 0.5. However, I started to experience bouts of extremely painful abdominal cramping, and vomiting. My oncologist and regular doc didn't think it was the trial drugs, but I decided to stop the trial.... all my symptoms cleared!!

But by Mar 1 2007 my PSA was now at 0.8. moving closer to the level that I want to go onto hormones. I retested on May 2nd and my PSA had dropped to 0.7 so I will retest in mid July.

Back to feeling good physically.... mentally well.... that can be a little challenging.

UPDATED

August 2008

Your site has been a big morale boost to me and I recommend it to men in my US Too group. I thank you for your efforts.

In July 2007 my PSA was 0.9 and was rising about .1 every 3 months since failing my salvage radiation which was completed in June 2004. In Sept 2007, I visited with DR. Snuffy Myers and at his request started supplementing with 7000 IU's Vit D, taking pomegranate extract, lycopene, soy, fish oil. The hope was to slow the doubling time. In March 2008 PSA was at 1.2, so things were looking good. However, by June it had moved to 1.8 and 3 weeks later it was now 2.06. Dr. Myers recommended Avodart to see if that slows things down... I will be retesting in mid August. I think hormones are just around the corner. Obviously I am too thrilled by this.

UPDATED

October 2009

After completing salvage radiation along with a brief 3 months of ADT2 in June 2004, my PSA dropped below 0.05 for about 18 months when it began a slow steady upward progression.

By April 2009 it had reached 3.17 and both of my oncologists were suggesting to start hormones before the PSA reached 5.0. Well after a slow upward movement 45 days later my PSA had jumped to 4.65.....biggest movement in 5 years !!

I commenced Casodex 50mg immediately followed by Lupron injection 10 days later. Within 30 days my PSA was down to 0.53 and 90 days after that 0.07 in Sept 2009. I also take Avodart. One of my oncologists ( Dr. Myers) wants to see my PSA drop to 0.01 hopefully it will get there.....the battle just keeps going on and on.

UPDATED

March 2011

I stayed on ADT3 (Lupron, Casodex, Avodart) from May 2009 until June 2010. My PSA had dropped to less than 0.05 for about nine months.

However in October 2010 it rose to 0.40 and six weeks later it jumped to 1.40 so in December 2010 I started back onto ADT3. By March 2011 it was dropping to 0.25.....hopefully it will continue downwards.

I must say that I was extremely disappointed that I only got a six month holiday. The fight with this monster never seems to end.

UPDATED

April 2012

After stopping ADT3 in June 2010, I had restart ADT 3 in Dec 2010....my PSA rose from 0.05 in June 2010 to 1.46 by December 2010. By August 2011 I reached my nadir of 0.12......but in November my PSA rose to 0.14....the rise continued in 2012 with a 0.23 in Feb and 0.27 in March. So clearly ADT3 is failing. [These seem very low numbers and bearing in mind the inbuilt accuracy issues of Ultra Sensitive PSA tests, may not indicate treatment failure.]

In mid April I am hoping to be accepted for a Clinical Trial for ARN-509 , which is considered to be an improvement over MDV 3100 which itself is up for FDA approval. Both drugs act like a super casodex...we'll see. The struggle continues...quality of life is good, just the bouts depression are troublesome.

UPDATED

September 2012

Started a phase 2 clinical trial in April 2012 with ARN 509, my PSA starting was low at 0.52, in fact I was surprised that I got accepted because of the low number. Since then my PSA (every 30days) has been 0.19, 0.15, 0.20, 0.17, 0.20, so for now I am stable. Can only hope this continues. Side effects are some intense nausea for about 20 minutes after taking the drug, after all is good.

UPDATED

November 2012

I have been in the Phase II Trial with ARN-509 since April 2012....my PSA has now dropped to <0.05,obviously I am extremely happy with this..... since 2002 when my journey began, I have failed surgery, SRT, and ADT3. I also was a Gleason 8 with mets to my seminal vesicles and 1 lymph node.

UPDATED

May 2013

Until Feb 2013 I was enrolled in a Phase II Trial with ARN509......had been on just about a year and it was keeping my PSA in the 0.05 range (also using lupron). However in Dec 2012 I was dx with Stage III Rectal Cancer......had a lower anterior resection and permanent colostomy in Jan 2013. Since there was 1 lymph node involved I have to do 12 rounds of folfox chemo....as a result I was forced to leave the trial.A huge disappointment since the drug was working so well.

In early April I tested my PSA and it was 0.07 , which I view as excellent news....no idea why it has stayed low in the 2.5 months I've been off the trial. Great news since the chemo for my rectal cancer is very, very difficult to tolerate...not sure I'm up to fighting 2 cancers at the same time.

UPDATED

June 2014

My PSA remained in the 0.07 range until Sept 2013 (lupron only)...then it started to increase slowly in Sept 0.14 , Nov 0.17 then Jan 2014 up to 0.45, March 0.76 so clearly the lupron was failing. In April I was started on Nilutamide and by May my PSA dropped to 0.45 , I will be testing in late June. Upon disease progression my oncologist and I have decided to do Provenge and then follow up with Zytiga. I hope the nilutamide will work for a while...time will tell, the fight continues almost 12 years and I am doing pretty well. In July will be doing scans to check on my colorectal cancer.

UPDATED

July 2015

Well, over the last year my PSA continued to rise whilst on Nilutamide...going from 0.46 to 5.3 in June 2015, a 13 month period. A bone scan indicated a met in my 7th rib....so have just today started Xtandi. More troublesome is my colorectal cancer...last July (2014) I had a solitary met to my liver which was resected in Oct followed up with 7 rounds of chemo. In June this year a ct scan showed growth in 2 nodules in my right lung.....going to rescan in 3 months to see if still growing...most likely a colorectal met.If so will probably have to do a lung resection and more chemo!! So the fight goes on...still have pretty good QOL notwithstanding having to deal with 2 Stage IV cancers.

Terry's e-mail address is: terryamail-public AT yahoo.com (replace "AT" with "@")

NOTE: Terry has not updated his story for more than 15 months, so you may not receive any response from him.


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