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PLATINUM

Frank Tarantino and Kay live in Pennsylvania, USA. He was 55 when he was diagnosed in March,1993 His initial PSA was 4.8 ng/ml and his Gleason Score was 3+4= 7. He does not state his staging but it was likely T1c. His choice of treatment was Surgery - Prostatectomy. Here is his story:

Had Surgery in July 1993, with a result of suspicious margins. Several months after RP my PSA was about 0.5 ng/ml so I underwent Radiation Therapy [RT] 3 times a week for about 12 weeks.

About a year after RT my PSA bottomed out at undetectable.

About 1995 my PSA started a very slow upward climb. My doubling time was typically about 2 to 3 years. I have had several bone scans, MRI'S, Cat Scans, etc over the years and all were clean. At my choice I have avoided Hormone THerapy. My decision was to start it if any tests showed metastasis or doubling time dropped below 1 year.

My latest PSA [December 2007] was 26.0 ng/ml and doubling time was about 14 months so I will be starting hormone therapy [HT] soon.

The only symptoms I have had over the 13+ years is an irritable bladder probably from the RT and some occasional minor incontinence. I have handled the normal impotence problems associated with my treatments by using a VED. It has been quite effective. I don't particularly recommend my course of action for others---the conventional wisdom now is to start HT much earlier, but I am happy with the choice I made.

 

UPDATED

March 2008

 

In December of 2006 I was still on "WATCHFUL WAITING' with a PSA in the high 20's and a doubling time of 14 months. This was about 15 years after initial treatment.

In April 2007 my PSA climbed to 35 and doubling time was about 10 months so I started 4 month Lupron injection and one Casodex pill every day. I am almost one year on Hormone therapy now and my PSA is down to 0.1. I have encountered the usual side effects of hot flashes, loss of libido , low energy. etc but I have been able to tolerate them.

Life continues normally-we spent 2 weeks in Italy in September and 2 weeks in Florida in February this year. In October I had problems with blood clots in urine and blocked bladder. I had a bladder neck opening procedure; it was blocked by scar tissue from radiation treatment.

 

UPDATED

May 2009

 

 

Well it is a little past my 16th anniversary of diagnosis so I thought it time to update.

Had some success with the Hormone Therapy for 2 years with my PSA reaching a nadir of 0.1 about a year ago. Then it was at 0.2 for three successive readings and the last reading was 0.6. Looks like I am probably getting Hormone Resistant.

Had first consult with an Oncologist yesterday---he wants to wait for next PSA [in July] before taking action. He also ordered Bone Scan and Pelvic CT.

I WILL UPDATE AGAIN IN ABOUT A YEAR. I INTEND TO BE AROUND FOR SEVERAL AFTER THAT.

 

UPDATED

August 2010

 

 

I am now about 17 years past my initial diagnosis.

Have been on Hormone therapy for about 3 1/2 years. My PSA bottomed out at 0.1 after 14 months on Hormones and has been very slowly increasing since then. It currently is 3.6.

I have no symptoms other than back pain which is associated with spinal stenosis.I spend an hour or so at the gym twice a week strengtherning my back. My Doc wants to schedule bone scan, CT scan, etc in about 4 months to make sure there are no mets.Last round about 18 months ago showed all clear.

My current biggest concern is when to move on to Ketoconzole and Cortisone.

 

UPDATED

November 2010

 

 

My hormone therapy is continuing to not be effective. My PSA has been slowly rising for about a year or more and is now about 7. About a month ago I had some continuing rib pain so was subjected to a bone scan and pelvic cat scan. All tests were negative .

I will see my Uro Doc in about 3 weeks and discuss what/when about treatment strategy. The rib pain has gone away.

 

UPDATED

April 2011

 

 

Last Fall my urologist recommended I start seeing an Oncologist after he removed a small cancerous lesion at my bladder neck in late December 2010.

I chose Dr. Gary Hudes who is chief of Medical Urologic Oncology at Fox Chase Cancer Center just outside Philadelphia. I first saw him in early 2011. He recommended I stop taking Casodex and watch for a PSA decline due to its withdrawal. That did not work (current PSA is 15.0) so in March 2011 he added 150mg Nilandron daily to the Lupron.

At the end of April 2011 I have a PSA, Bone Scan and Pelvic/Abdomen CT Scan scheduled and based on those tests the next step will be determined. Meanwhile I continue a normal life except for major incontinence due to several bladder neck procedures in the past.

 

UPDATED

July 2011

 

 

Last post in March 2011, my PSA was about 15 and withdrawal from 50 mg daily Casodex did not work. My Oncologist kept me on four months Lupron shots and put me on 150 mg Nilandron daily (to replace Casodex).

Quite surprisingly, in mid April my PSA was reduced to 1.5 and just this week the latest PSA is 0.2. Bone scan and pelvic CT scans done in March were all clean. I am overjoyed at all the good recent news. Back in March I was assuming that Keto and/or Chemo were soon going be necessary for me. It just tells me that there are a lot of things we still dont know about PCa. I would never have expected that just changing from one type of anti-androgen to another would have such significant results in PSA reduction.

 

UPDATED

December 2011

 

My last test a week ago came back at 0.1. Amazing and unexpected.

Frank's e-mail address is: ftarantino2@comcast.net