Asking for input or advice

dreadnought

New Member

Joined : Sep 2006

Posts : 18

Posted 10/7/2007 2:22 PM (GMT -7)

Hello fellow travelers on this journey,

Let me give you some background before my question.

I was diagnosed 9/2006 with PC after PSA of 12 and biopsy showed Gleason of 7. I had DaVinci on Oct. 23.
Biopsy of removed prostate showed positive margins (no lymph node or seminal vesicle involvement) and an upgraded Gleason of 9. This last bit of news seemed to somewhat un-nerve my surgeon and he suggested aggressive treatment.
PSA in 12/06--<.1
PSA in 3/07--<.1
PSA in 6/07--<.1
PSA in 9/07--<.1
(these levels are called "undetectible" by the Lab at UAB)

So, I began Lupron injections in December, 2006 and IMRT radiation in March.........38 sessions which ended June 1, 2007.

My issue involves my Ocologist, who insists that I continue Lupron for another full year.
Many, many of you have experienced the side effects of this powerful drug, and I have had them all.
In addition to the side effects I feel as though I am going through life in a fog.......or seeing life pass me by in black and white. I seem to have lost most of my initiative, energy, and desire to experience what is really a great life.

I am ready to try to FULLY recover....re-gain energy, passion for life, sharpness of mind.

Do any of you have insight into this dilemma? I cannot imagine another full year of Lupron........and its effects.

Thank you all for your input.

Gordy

Veteran Member

Joined : Jun 2005

Posts : 528

Posted 10/7/2007 2:45 PM (GMT -7)

Since you've been undetectable for a year, I believe most oncologists today would take you off the ADT and just keep watching you. If your PSA starts to rise, be prepared to go back on the meds.

I think it's time for a second opinion.

-Gordy

1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01 AND REMAINS THERE TO THIS DAY
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
7/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA STILL UNDETECTABLE

bluebird

Veteran Member

Joined : May 2006

Posts : 2542

Posted 10/7/2007 8:22 PM (GMT -7)

Hey ~ I personally think it's time that you have a chance to recover and heal.... Mentally and Physically. The information I'm adding here is an excerpt from a posting on Opie's thread: Low level PSA after surgery Excerpt: Here’s a scale that helped me to understand our scale with having Retropubic Radical Prostatectomy: ( green is in the undetectable range for our lab) <0.01 (no pennies) 0.01 = 1 penny 0.06 = 6 pennies 0.07 = 7 pennies 0.09 = 9 pennies 0.1 = 10 pennies At this point we would start monitoring. 0.11 = 11 pennies 0.12 = 12 pennies 1.6 = 160 pennies 2.0 = 200 pennies 2.5 = 250 pennies <end excerpt> I may be wrong in my thinking... but ~ I truly feel you need to get back to the new norm.... filled with energy, passion for life, and sharpness of mind!!! You know your body... listen to it! We're glad you reached back to all of us!!! We hope you'll stay a little closer and let us know your next steps. We will always be here for you! In Friendship ~ Lee & Buddy mama bluebird - Lee & Buddy… from North Carolina v We invite you to visit our personal thread : Click Here: “Our Journey” ~ Sharing is Caring April 3, 2006 53 on surgery day RRP / Radical Retropubic Prostatectomy PSA 4.6 Gleason 3+3=6 T2a Confined to Prostate 3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)

hawkfan75

Regular Member

Joined : Jan 2007

Posts : 165

Posted 10/7/2007 8:36 PM (GMT -7)

I had a lower gleason score, but am similar because of the positive margins. I started Zoladex two months prior to RT and haven't had huge side effects - a little warm flashes. However, I've only been on it three months. My doctors recommend two years of HT. They say that this will decrease the probability of reoccurance. The longer I can take the HT up to two years the better. Have you asked about switching to a different hormone. Since they all do the same thing, I wonder if one would be easier on you than another.

I have a question about checking PSA while on hormones. Doesn't the HT surpress any PC cells and thus leave the PSA test not useful?

PSA 4.7 (up from 3.2 one year ago)

Biopsy November 8, 2006 1 of 10 cores positive 5% LEFT Side Gleason 3+3

Robotic surgery January 19, 2007

Post Surgery Pathology

Stage T3a, Gleason 3+4, positive margins and

capsular penetration RIGHT Side

Post Surgery PSA: March 5: 0.01

5 month PSA, June 13, 2007: 0.08

Adjuvant therapy began June 26 with Zoladex injection

Radiation began August 23

War-eagle

Regular Member

Joined : Sep 2007

Posts : 219

Posted 10/8/2007 3:33 PM (GMT -7)

Dreadnought,

I'm with Gordy (Les) on this one. It would not hurt to get the second opinion. I was on Lupron for some time then we switched to Elgard. I know what you mean about the fog and desire to enjoy life. It kind of trys to drain the will out of you. But man you have to fight. Find something that makes you want to get out and enjoy the world. My wife MADE me get off my rearend and engage again. Once I engaged I found my motivation. I still fight it every day, but I still fight. You can too. I know you will. Do what ever it takes to win the battle. "Persist without exception".

I poured myself into my singing and my church. Find your spot and go for it.

We all love you here and are praying for your light to return so it can shine on others. You are a legacy for future generations.

All our hopes and prayers and.................WAR EAGLE.

Walt

Age: 54

PSA 43 7/2005

Biopsy 12/14 Gleason 7 & 9

Divinci 9/2005 - spread to bladder

HT - 10/2005 (Eligard every 6 months)

RT - 10/2005 (38 treatments)

PSA 0.12 to 1.9 2/2007

Bone Scan and CT 4/2007

Casodex 4/2007

Spread to Spine (L4 & T5), rib, and pelvis

Zometa infusions 4/2007

PSA 4.9 8/2007

PSA 4.9 9/2007

"I will persist without exception - I will find a way where there is no way"

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