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IDguy55
Regular Member


Date Joined Mar 2010
Total Posts : 27
   Posted 3/22/2010 10:54 PM (GMT -6)   
After lurking for the past 2 months I thought I should introduce myself. I live in Southern Idaho with my wonderful wife of 35 years. As noted in my signature I was diagnosed with PC 4 1/2 years ago at age 50. As you can see, surgery and radiation has failed to get it out of my system, so I'm now on intermittent hormone therapy with good results so far.

After reading the posts I feel I have found a wonderful source of information and support. I wish I would have discovered this site at the beginning of my journey.
Current Age 55, DX October 2005 PSA 50
Biopsy 11/15/2005 Gleason 4 + 3, High Grade PIN, Perineural Invasion, T2 NX MX Stage 2
Bone Scan Clear, CT Scan Negative
open RRP on 12/19/2005 Gleason changed to 3 + 4, Tumor estimated at 25% of prostate volume, Negative Margins,
Extensive Perineural Invasion, Lymph Nodes Clear, Catheter removed 1/3/2006 (holidays) Dry at night. moderate incontinence during the day.
1/25/2006 PSA .046, Moderate Incontinence
2/28/2006 PSA .027
6/22/2006 PSA .043 Just a little stress incontinence
9/08/2006 PSA .065
IMRT Start 10/12/2006 45 treatments 80 gy
1/4/2007 Almost Total Urinary Blockage, Cystoscopy performed, The next few days I had the Urinary tract of a teenager.
1/8/2007 Clogged up again, Catheter put back in. Removed myself (highly recommended) 7 days later No problems since with only occasional very mild stess incontinence since.
1/11/2007 PSA .03
7/26/2007 PSA .011
1/24/2008 PSA .027
5/22/2008 PSA .104
9/25/2008 PSA .383
2/17/2009 PSA 1.06
5/12/2009 PSA 1.5
8/25/2009 PSA 3.8 LHRH agonist (3 month Zoladex) started
11/24/2009 PSA .021
2/23/2010 PSA 0.99 another 3 month Zoladex


Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 288
   Posted 3/22/2010 11:27 PM (GMT -6)   
Welcome Idaho,

Seems like you have covered some ground already and glad to see you are responding well! Your insights will be most desired as some of us follow your trail.

Take care,
Jake
Diagnosed 8/2008 Pre-op psa 4.2, Age 60 at dx
7 of 12 biopsies positive 3+3
DaVinci LRP 11/08
Post Op pathology clear margins, confined to prostate, absent extraprostatic extension, vascular or perineural. Gleason 3+4=7, 5-10% of 4 and location in right mid-gland.
3 month psa .1 2/09, 6 month .1 5/09, 9 month .2 8/09
broke ankle bones 6/09
9/21/09 Bone scan clear, psa still .2
11/12/09 chest xray was clear, psa however up to .3,
01/05/10 psa still .3, radiation setup done with tats, 01/19/10 started 39 sessions 70.2gy, psa at 6th week salvage IMRT up to .4


skeener
Regular Member


Date Joined Dec 2009
Total Posts : 214
   Posted 3/23/2010 5:11 AM (GMT -6)   
IDguy55
 
Welcome.  Since you have been lurking for two months, you already know this is an excellent forum for pca brothers.
 
Thanks for providing a detailed signature.  You have had a challenging pca journey.
 
Please keep us informed of your progress.
 
Skeener
Age:  63 
Biopsy: May 09 showed 2 of 12 cores positive for prostate cancer -- 1 at 5% and 1 at 25%.  Cancer indicated as non aggressive.  Gleason Score: 3+3.
RRP on Oct 23/09 in London, Ontario.  Excellent surgeon. 
7 Weeks Post Op -  The fears I had about bad things about the operation and recovery did not materialise except of course ED!!.  Otherwise, everything went very smoothly.  Incontinence not a problem.  Wear a pad when out just in case. Pain was never a problem.
Pathology:  Unremarkable 
First followup PSA and Visit: Feb 11/10 - 0.0.
 
Next PSA May
Next doctor's visit in 6 months      


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/23/2010 6:08 AM (GMT -6)   
I am surprised you had a psa doubling time of 3 months 5/12 to 8/25 of 2009 and further surprised a at rise in Psa recently, so it is good you started on something like LHRH drug you are on now, ask your doc about doing ADT3 combo(zoladex, casodex, proscar/avodart) perhaps for ultimate hormone therapy slam, see what he says, then maybe compare same with another onco-doc especially a PCa oncologist. Once you are into this land of failed primary and secondary(salvage) treatments, you are litterally outside the expertise of the average uro-doc and probably in your best interests to consider seeing a PCa oncologist. (this is mentioned in Dr. Strum's book also...not just my stupid idea- LOL). You might do better with ADT3 as to hitting hard right now for longer term remission, the doubling time is something to try halt as well as possible. No nobody herein is total expert on this(me either), neither is your uro-doc, so understand where you are in this mix. Hopefully you are seeing an oncologist or maybe your rad-doc prescribed this?

There are alot of protocols on hormone and drug therapies, more than you likely know about, I could list 30+ therapy drugs that are possibly useful in controlling PCa, since your life is on the line (same with mine since diagnosis, high stats), probably worth your time to find out all you can on anything (unless one doesn't care that much) and uro-docs know little or nothing on these others...or do not bother with them(lawsuits, profits, risks...who knows). If you ever fail on the LHRH drugs, there are other 2nd line hormone therapy drugs to consider, found on www.prostate-help.org  and  www.hormonerefractorypca.org  and such, to read about.

My psa was similar to yours(46.6), only my overall stats were way-way worse than yours...been about 8 yrs. for me Dx-2002 (done ADT3 for 2 yrs., doing DES off/on almost ever since with better results and little to no side effects, little to no cost, too). I call this area of PCa 'Limbo-Land' as you don't know exactly how you are doing even if psa doesn't move much.


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 3/23/2010 5:52:53 AM (GMT-6)


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 664
   Posted 3/23/2010 6:45 AM (GMT -6)   
Welcome Idaho,
Thanks for the post, what a journey!
Hero
Age 51, PSA 08/31/2009= 6.8, DRE Neg.
Biopsy 9/24/09 =10 of 12 positive. Gleason 6. involving up to 75%
da Vinci at Wash U, Barnes on 11/02/09
Modified Pathology, Gleason 4 + 3 = 7. Gleason 7 present throughout Prostate.  Negative surgical margins
4 of 4 periprostatic Lymph Nodes Negative, 10 of 10 pelvic Lymph Nodes Negative. Seminal Vesicles tumor free. No prostate extension
Post-op PSA 12/10/2009, Undetectable
12/12/2009, Pad Free and Started jogging.


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 3/23/2010 6:58 AM (GMT -6)   
Idaho: Welcome, sence you have been lurking for a while, you know how the board works Zufus is a real example of why we are on here. His knowledge of advanced treatment is so much better than many of us. He gives us hope and other treatments to think about when needed. You have had a heck of a journey already. We are here to stand by you and walk with you in the PC trip.

Good luck with treatment and to hang with us. Keep us posted.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 3/23/2010 7:32 AM (GMT -6)   
Welcome to the Forum and thanks for sharing your stats and background with us.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
Gonna Make Myself A Better Man: www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 3/23/2010 8:09 AM (GMT -6)   
Welcome Idaho and thanks for posting and sharing part of your journey. Hope that you post again and stay with us for awhile. Get a cup of coffee and pull up a seat my friend. You live in a great state as well.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 3/23/2010 8:14 AM (GMT -6)   
Welcome Idaho
You have had quite a journey. That must have been some 50th birthday party you had 4 years ago. There is some disagreement about what constitutes a "Bad" PSA. But everyone agrees that if it's the same as your age you need to do something. I'm glad you got right on it.

I noticed that your post RP PSAs were to 3 digits and you started treatment when you reached 0.065, up from 0.027, 0.043. Many of the guys here only have results to one digit. They would have only seen "<0.1" and would be enjoying a beer - not far from a toilet of course. Who know when it would have crossed the 0.2 threshold?
A while back, we collected costs for PSA tests around the country and found that a single digit "screening" test costs virtually the same as a 2 digit "diagnostic" test. Surprisingly, one lab actually charged more for the single digit. Why? The prices ranged from $60 - $110 + ~$15 for the phlebotomy.
Do you have any idea what your 3 digit test cost? If you don't that is OK. I don't want to burden a new guy with homework.

Thanks
Jeff (the Leaking one)

By the way you don't have a lock on potatoes. Someday you must try a Wayland Potato.
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 6=3+3. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (Try cutting down on fluids. Bad idea. I know.)
12/11 5 months: Still 3 pads per day. 400-450ml/day
2/26/10 7 months: Still 3 pads but leak is now 320 ml (5 day avg.)
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05.

Post Edited (Worried Guy) : 3/23/2010 7:21:30 AM (GMT-6)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 3/23/2010 8:19 AM (GMT -6)   
Welcome to HW.

As you have probably read, we have guys in your position who have been successful for many years in combatting PC on regimens like yours.

Sometimes just having a place that we can vent a little is a help, as well as learn new ideas/developments about treating PC.

Stay with us. Hopefully you can be a help to others as well, by sharing your story here.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


IDguy55
Regular Member


Date Joined Mar 2010
Total Posts : 27
   Posted 3/23/2010 1:36 PM (GMT -6)   
Thanks Everyone for the warm welcome. The posts here have opened my eyed to the need for more aggressive therapy. I have read Dr.Strum's "Primer" and wish I had it a few years ago. Although I would have followed the same route I might have dome the radiation and hormones sooner. For some reason the thought of surgery and radiation didn't bother me at all but the idea of "hormone shots" really freaked me out.

Thanks Zufus for your comments. Although I have what I feel is excellent care from my ORO-Surgeon and Radiaiation-Oncologist, I also see the need to find a MED-ONC PC specialist. I will soon be posting for recommendations for a doctor in my area.
Current Age 55, DX October 2005 PSA 50
Biopsy 11/15/2005 Gleason 4 + 3, High Grade PIN, Perineural Invasion, T2 NX MX Stage 2
Bone Scan Clear, CT Scan Negative
open RRP on 12/19/2005 Gleason changed to 3 + 4, Tumor estimated at 25% of prostate volume, Negative Margins,
Extensive Perineural Invasion, Lymph Nodes Clear, Catheter removed 1/3/2006 (holidays) Dry at night. moderate incontinence during the day.
1/25/2006 PSA .046, Moderate Incontinence
2/28/2006 PSA .027
6/22/2006 PSA .043 Just a little stress incontinence
9/08/2006 PSA .065
IMRT Start 10/12/2006 45 treatments 80 gy
1/4/2007 Almost Total Urinary Blockage, Cystoscopy performed, The next few days I had the Urinary tract of a teenager.
1/8/2007 Clogged up again, Catheter put back in. Removed myself (highly recommended) 7 days later No problems since with only occasional very mild stess incontinence since.
1/11/2007 PSA .03
7/26/2007 PSA .011
1/24/2008 PSA .027
5/22/2008 PSA .104
9/25/2008 PSA .383
2/17/2009 PSA 1.06
5/12/2009 PSA 1.5
8/25/2009 PSA 3.8 LHRH agonist (3 month Zoladex) started
11/24/2009 PSA .021
2/23/2010 PSA 0.99 another 3 month Zoladex


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/23/2010 2:43 PM (GMT -6)   
Best to you IDguy55 good to see you have one of the most informative books on PCa at your finger tips, if second edition I am on the inside cover the 3rd guy down from top of page, in the photos, from Michigan. This book helped me know more about choices and the seriousness of my own case. Monitor psa atleast every 3 months or more is my suggestion and doc is doing same already?(I would go monthly perhaps) I used to get psa tests at nearby walkin testing at Hospital here $15, anytime and anybody...mail results back to you. I was a hawk right after radiations and doing ADT3 (2002-2004) and caught the slight ever increasing rises while on ADT3, and switched drugs and got more control over psa, lowered, stabilized so well that I went off all drugs for about 2 yrs. (maybe that was a wrong risk going off for 2 yrs. and caught the psa increases starting again), resumed last Nov. 2008 and back in control, but watching it and also considering what I might do in future choices if and when it looks necessary.
Youth is wasted on the Young-(W.C. Fields)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/23/2010 3:40 PM (GMT -6)   
Welcome, Idaho, you have been given a wide range of good advice here already. Hope you stay with us and keep us well posted as your journey continues. The brotherhood is real and good here.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


IDguy55
Regular Member


Date Joined Mar 2010
Total Posts : 27
   Posted 3/25/2010 9:32 PM (GMT -6)   
Zufus, I am getting a PSA every 3 months. I do need to find a Med-Onc PC specialist as the Radiation-Oncologist I've been seeing might not be as up to speed on the "Hormone" therapys.

Purgatory, I've read your story and can't imagine what you've gone through. Just being "clogged" up twice, and needing a 2nd catheter just a year after surgery was bad enough for me. Hope your latest surgery works out for you.
Update, I just read your latest post, Sorry for the setback.

Dallan
Current Age 55, DX October 2005 PSA 50
Biopsy 11/15/2005 Gleason 4 + 3, High Grade PIN, Perineural Invasion, T2 NX MX Stage 2
Bone Scan Clear, CT Scan Negative
open RRP on 12/19/2005 Gleason changed to 3 + 4, Tumor estimated at 25% of prostate volume, Negative Margins,
Extensive Perineural Invasion, Lymph Nodes Clear, Catheter removed 1/3/2006 (holidays) Dry at night. moderate incontinence during the day.
1/25/2006 PSA .046, Moderate Incontinence
2/28/2006 PSA .027
6/22/2006 PSA .043 Just a little stress incontinence
9/08/2006 PSA .065
IMRT Start 10/12/2006 45 treatments 80 gy
1/4/2007 Almost Total Urinary Blockage, Cystoscopy performed, The next few days I had the Urinary tract of a teenager.
1/8/2007 Clogged up again, Catheter put back in. Removed myself (highly recommended) 7 days later No problems since with only occasional very mild stess incontinence since.
1/11/2007 PSA .03
7/26/2007 PSA .011
1/24/2008 PSA .027
5/22/2008 PSA .104
9/25/2008 PSA .383
2/17/2009 PSA 1.06
5/12/2009 PSA 1.5
8/25/2009 PSA 3.8 LHRH agonist (3 month Zoladex) started
11/24/2009 PSA .021
2/23/2010 PSA 0.99 another 3 month Zoladex

Post Edited (IDguy55) : 3/25/2010 9:21:45 PM (GMT-6)


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/26/2010 2:41 PM (GMT -6)   
All good brother, if zoladex ever fails, you should either starting looking at choices now or exactly when that happens, you do have choices even if a particular doc doesn't offer them, there are others to choose from too. It is not one size fits all in drug therapies, although a few of the big sellers would like us to think so. You think it can get more bizzare.....oh yeah....see what some patients are doing at www.hrpca.org and they have a group you can join too. I cannot imagine some of the protocols some guys have done or are doing, but it is a choice and depending upon where you are on the spectrum the bizzare could end  up being ones choice.


Youth is wasted on the Young-(W.C. Fields)


JoeyG
Regular Member


Date Joined Jul 2009
Total Posts : 162
   Posted 3/29/2010 11:07 AM (GMT -6)   
IDGuy,
 
Welcome to the board!
 
I see you may need to find a Prostate Onco in Southern Idaho. I need to find one in Pittsburgh (all I get is "he is informed in many cancers.")...inotherwords bring on the Taxotere, baby!
 
Can anyone help both of us?
Age -57; Diagnosed 10/05 PSA 13.4 GS 7 (4+3) Organ confined (T2B)
Cryoablation 4/06 Allegheny Hosp-Dr Ralph Miller (Cohen/Miller)
Post Cryo Nadir 8/06 0.2
Rising steadily to 0.7 4/09 :-(
Steady at 0.7 (7/09)
Doubled to 1.5 (2/10) YUCH!
Hoping to qualify for salvage cryo or radiation


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4271
   Posted 3/29/2010 12:49 PM (GMT -6)   

Joey:

JohnT, whom I personally believe is the most knowledgeable and credible poster on this forum, posted this list in another thread some time back:

It is extremely difficult to find a Prostate Oncologist. The PCRI website had a list and discontinued it because of of complaints from drs that were not on the list.
The only other list I found was on US TOO.
On The East Coast:
Charles Meyrs, Earlysvill Va 434 964 0212
Maria Mallarino, Sarosota Fla 941 3777 9993
Daniel Petrylak, New Yorl City. 212 305 1731
Dan Costin, white Plains NY 914 684 2779
Robert Dipaola, New Brunswick NJ 732 235 2465
William Berry, Raleigh NC. 919 781 7070.

The only Dr I have heard of that has an excellent reputation is Charles Meyrs; I don't know anything about the others.
We need a better way to find Prostate Oncologists

I guess it's just by word of mouth.
On the West Coast there is Stephen Strum in ORE, Mark Scholz, Richard Lam, and Bob Liebowitz in Los Angeles, all highly regarded.
JohnT

Perhaps John or others will weigh in with an update or other names.

Tudpock

 


Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/09.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!
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