Yesterday I got a devastating message,

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Arno
Regular Member


Date Joined Apr 2010
Total Posts : 54
   Posted Today 1:53 AM (GMT -6)   
and it kept me awake the whole night: I got the lab result of my July 9th blood sample, PSA = 5.7. Okay, my starting PSA, August last year, was 575, a lot higher. In September I got on HT and the December and March values looked so promising: 0.3, and <0.1. But then the June 8th blood sample had PSA = 2.3. I got worried, and because my next appointment in the hospital will be in September, I asked our family doctor for an additional PSA test. Yesterday's rsult makes my PSA doubling time over the last month as low as 24 days !!

I already discussed becoming officially HRPC with my urologist last month. He offers the taxol chemo, which, as he explained, has a response rate of only 60% and a survivaltime, on average, 1.5 years. With my doubling time I might not get half of that, I presume. After the taxane fails, I might join clinical trials.

Dr. Leibowitz claims that his treatment of HRPC leads to: 'Living Successfully with "Incurable" Prostate Cancer'.
Will I have to move to Los Angeles in order to let dr. Leibowitz help me to survive at least another year ?
And will I be able to pay for it ?
March'06: PSA 3.6
Diagnosed at age 63 Sep'09: PSA 575, GS 7 (4+3)
3 positive cores in 6
Bone scan: as a fully lit christmas tree
With Zoladex+150mg Casodex PSA <0.1
Additionally 4-weekly Zometa (zoledronin acid)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted Today 2:15 AM (GMT -6)   
Hi Arno,
Those are some tough numbers but you still have a lot of artillery to fire off at it. As good as they are, Myers, Leibowitz, Strum, etc, they don't always agree with what is a best protocol for everybody. You mentioned moving to LA but not where you are. You may already have access to a top oncologist without moving. Additionally moving may be totally unnecessary while still using the oncologist of your choice.

Starting chemo with Taxotere might not be a bad protocol, but you might want to check all options first. And when you see statistics with averages, throw them out. I have seen guys do way better than the averages. It will help you to stay positive, and also to pay close attention each step of the way.

Let us know where you are in the US...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4108
   Posted Today 7:13 AM (GMT -6)   
Arno, Man that is a tough go buddy. Get opinions of more than one Dr. There are several treatments and all are just a bit different. Try to see a PCa Oncologist.

Do 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%


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted Today 7:35 AM (GMT -6)   
You have other choices or options, because other docs have and/or do use them in very similar scenarios of advanced PCa patients. If you decide to go chemo route, see abstract that showed that the new Cabazitaxel worked on prior patients whom failed on Taxotere chemo and showed improvement on further survival even when compared to Mitoxantrone (both with Prednisone added). I posted some info on that yesterday, you can research it and read on it. Not a recommendation just patients should compare and research any or all options, only you do the protocol(s). You could try any of the endocrine therapies with your hrpca situation, if they don't work within few weeks, drop them. They have less side effects(usually) than chemo, see Page 136, 137 Dr. Strums book a Primer on Prostate Cancer. You could find another onco-doc or take trip to see one of the reknown PCa specialists, atleast for an office visit and maybe recommendation and then have them inform your local doc on the protocol under advisement.

What I am saying is this disease is war at this level and probably best to think of it as hand to hand combat. You have to be the fighter, the doc is maybe the General or Major and at the office literally and hopefully strategizing a war plan. This forum you have the supporters from back home waving the red, white and blue. Get through this year and you might be able to try Provenge or the DCVax (in trials now) vaccine therapies(might be another vaccine therapy outside the USA right now maybe search for that info), these are the newest hope for PCa and way different type of combat tool. We salute your choice(s) whatever they are.
Youth is wasted on the Young-(W.C. Fields)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted Today 9:52 AM (GMT -6)   
Arno,

I hate to read the news. I can only wish you the best of luck as you move onto the next course of action, and hope beyond hope that you can beat the odds and buy a lot more time than that. Like others have said, there are more than one way to skin the cat at this point, hope you find your's soon.

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, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 still in place


Drums
Regular Member


Date Joined Mar 2010
Total Posts : 134
   Posted Today 10:27 AM (GMT -6)   
Arno,
The others here can offer better advise then I regarding treatment options, but know that you have all our support and prayers. Focus on doing your research and get as much info as possible.
Bill
Age 52 at diagnosis, father died of PCa
 
PSA: 10/16/09 - 2.8; 1/11/10 - 3.8
Biopsy 11/25/09, 11 core samples - HG PIN on right side
Biopsy 2/17/10, 11 core samples - left side, adenocarcinoma, Gleason 6, one core at 5%
Notified of dx on 3/12/10 (27th wedding anniversary) via phone by the nurse! (dropped this Uro!)
MRI 3/17/10 and bone scan, 3/23/10, indicate: gland volume is 27mL, PCa is confined to prostate, seminal vesicles and vas deferens are unremarkable.
 
RALP conducted 19 May 2010 by Dr. Lee at U. Penn Presbyterian
Pathology report on 10 Jun 2010: Gleason 6; gland involvement by carcinoma < 2%; tumor in peripheral zone on BOTH sides; no capsular, extracapsular extension, lymph node, or seminal vesical involvement; and no positive margins.
 
Incontinence: first four days after catheter removal - only1-3 pads/day (but urethra was inflammed); 2d week (after inflammation) - 8-10 pads/day (sometimes more!); 3d week - 4-6 pads; 4th and 5th weeks - 3-4 pads; 6th week down to 2 pads. Of course, all this depends on how much I stand and it gets worse later in the day.
 
ED: started the pump the 4th week after the catheter removal. Four sets, twice a day per instructions. Not as fun as it sounded.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4235
   Posted Today 11:44 AM (GMT -6)   
Arno,
An intital consultation with one of the top oncologists would be worth while. Any treatments recommended can be done locally with follow ups by phone.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted Today 1:05 PM (GMT -6)   
Hi Arno,
So sorry to read about your challenging  journey, but never give up hope. You have no doubt read the tread from Gordy?
 
 
Wishing for all the best.
 
Magaboo


Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
Open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 days - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09 <0.04; JAN 10 <0.04; Jul 10 <.04

Post Edited (Magaboo) : 7/17/2010 11:44:45 PM (GMT-6)


Burlcodad
Regular Member


Date Joined Nov 2009
Total Posts : 254
   Posted Today 1:12 PM (GMT -6)   
Arno
 
I am sorry for the news.  As others have said and you probably all ready know, do your research and dont give up.  I wish you the best
 
Ray
Diagnosed 9/09 at age 54  
PSA 6/09 1.3 
Stage 2b (biopsy done because of firmness felt on right side) 3 positive cores out of 12 (all less than 25%) Gleason 6
 
Surgery  1/13/10 at UP- Penn Presbyterian - Dr David Lee. Home 1/14/10 Nerves spared on both sides -Catheter removed 1/19/10  Path report scheduled for 2/11/10
 
Post OP Pathology Report Gleason score was upgraded to 7 (3+4)
no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, gland involvement 2-10%
 
Since report was good and recovery going well next appt is now  the first psa test appt scheduled for 4/22
 
POST OP PSA   4/10 <0.1,
 
Incontinence - Initial 6 pads a day, 3 Weeks - 3 pads a day relatively dry at night , 3 Months mostly dry 0-1 pad per day
 
ED - yes but seeing some improvements - levitra 10 mg 2x week 3 months  100 mg almost daily
 
 
 


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6979
   Posted Today 1:20 PM (GMT -6)   
Arno,
I can't begin to imagine how you are feeling with news like this. I can only offer my best wishes and hope for the best for you.

gold horse
Regular Member


Date Joined Nov 2009
Total Posts : 360
   Posted Today 8:43 PM (GMT -6)   

Hi Arno,I just want to let you know that we are a big family here and we are here to support you

with advices and prayers.We all are at war with pc just do not give up.God bless you. nono


DIAGN=46 YEARS
GLEASON=3+3
FATHER HAD PC,THEN I THEN MY BROTHER STILL HAS TWO BROTHER PC FREE.
MARRIED,TWO CHILDREN.AGE 13 AND 8.
LAPROSCOPY SURGERY 6/2005
PATOLOGY REPORT.
GLEASON=3+3
TUMOR VOLUME=5%
LYMPHOVASCULAR INVASION=NEG
PERINEURAL INVASION=POSI
TUMOR MULTICENTRICITY=NEG
EXTRAPROSTATIC INVASION=NEG
SEMINAL VESICLES BOTH=CLEAN
MARGIN ALL=NEG
PT2ANXMX
DEVELOP SCART TISSUE AND NEEDED A SECOND SURGERY BECAUSE COULD NOT URINATE,
PSA 6/05=0.04,0.04,0.04,6/06,0.04,0.04,0.04,6/07,0.04,0.04,0.04,6/08,0.04,0.04,1/09
0.04,10/09,0.04
 


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted Today 11:10 PM (GMT -6)   
Hi Arno,

So sorry for the discouraging news. As Tony says, there is still hope on the horizon.

I hope you find options that will work for you.

We'll be here for support.

Kind regards,

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/'07 <0.04; 12/'07 <0.04; 03/'08 <0.04;
06/'08 <0.04; 12/'08 <0.04; 06/'09 =0.06; 09/'09 <0.04; 12/'09 =0.05;
3/'10 <0.04; Latest PSA 6/'10 <0.01


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 7/18/2010 1:34 AM (GMT -6)   
Arno, bummer news, that's for sure. But from what others have said above, and bright knowledgeable people they are too, it seems there are options available that can make a difference.

You sure don't want to take any medical advice from me, Arno. But, aside from that, like the rest of HW we're here to support you. Please, keep us posted.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  


Arno
Regular Member


Date Joined Apr 2010
Total Posts : 54
   Posted 7/18/2010 7:40 AM (GMT -6)   
Dear all.

thank you for your supportive reactions and well-wishes.
Until now I have only been seen our family doctor (a very supportive guy) and an urologist of the local hospital.

I started to study PC therapies, and it is now clear to me, as also indicated by some of your responses, that I should search for a good (local or nearby) oncologist. Also recommended was to consult a oncologist reknown in advanced PC, say for a second opinion. I already found the name of an oncologist in a hospital within 30 miles who is well-known for his use of chemo together with a stimulant of the immune system (Neupogen or Leukine), at least when he is treating breast cancer.

Curious that the treatment of breast cancer seems to be ahead of that of prostate cancer, although there are a lot of similarities. Taxotere, for example, was used for treatment of breast cancer first.

The treatment by dr. Leibowitz consists of combining 2 other chemo's with taxotere, taking lower doses when possible, in order to reduce the side-effects, together with 2 or 3 anti-angiogenics, and Leukin to support the immune system. All applied concurrently, and only for 4 to 5 months. Survival is extended in a series of treatments. This is what I will be looking for in my next treatment.

I still wonder why the 'standard' approach seems to be using mono-therapies, and then continuing them till failure. Many studies have proven combination therapies to be more effective. And drugs often regain efficacies after a vacation.

I will have to wait till next week to discuss this with my doctors. Both are on vacation now.
March'06: PSA 3.6
Diagnosed at age 63 Sep'09: PSA 575, GS 7 (4+3)
3 positive cores in 6
Bone scan: as a fully lit christmas tree
With Zoladex+150mg Casodex PSA <0.1
Additionally 4-weekly Zometa (zoledronin acid)


Piy
Regular Member


Date Joined Mar 2010
Total Posts : 145
   Posted 7/18/2010 8:14 AM (GMT -6)   
I still wonder why the 'standard' approach seems to be using mono-therapies, and then continuing them till failure. Many studies have proven combination therapies to be more effective. And drugs often regain efficacies after a vacation.
This is one of the reasons it's SO important to see not just a good oncologist, but one who specializes in prostate cancer!  IMO
Dx June 2007 - age 48
davinci RRP October 2007
75% of prostate involved
Gleason 9
Positive margin
Scans clear
No detectable mets
SRT - February 2008
PSA:
Mar '09-0.4
Jun '09-0.7
Aug '09-1.7
Feb '10-.008
Apr '10 - .007
Commenced Dr. Robt Leibowitz "Three Pronged Approach" protocol in August 2009
Completed chemo Dec 28 2009


BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 7/18/2010 11:42 AM (GMT -6)   
Arno, my medical oncologist told me that breast cancer responds better to chemo. Best of luck with the new doctor. BB
Dx with PC Dec 2008 at 56, PSA 3.4


Biopsy: T1c, Geason 7 (3+4) - 8 cores taken with 4 positive for PCa, 30% of all 4 cores.

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Jun 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31
psa May 10  .50

Aril 10 MRI and Bone Scan show lesion on lower spine, false positive. 
 
Started HT 5/25/10 with 3 month shot of Trelstar. SRT scheduled for late July


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 7/18/2010 12:44 PM (GMT -6)   
Arno,

Having gone through a similar path and diagnosis as you, I'd suggest considering a second line hormonal treatment before chemo.
Look into HDK+HC or DES+Wafarin

There is a lot of information on both at hrpca.org
Dx'd 2/11/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
Been on Lupron since beginning
Was on Casodex, then HDK, the Nilandron
Finished 12 rounds of Taxotere on January 26th
14 radiation treatments in June 2010 for leg/hip pain

Current (6-21-10)
PSA: 108
Treatment: Lupron, Zometa, DES+Cumadin
~~~~~~~~~~~~
Personal Blog:
prostatecancerat42.blogspot.com
Facebook Profile:
www.facebook.com/david.e.emerson


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/18/2010 5:29 PM (GMT -6)   
Arno,

I know that in your situation, numbers mean a lot.

I can only say, that if possible, keep it all in perspective. Compared to 575, you are still numerically doing much better. With your starting point, 5.7 has a different signifigance than a post RP patient, in my opinion.

The most important thing is to not despair and give up hope. We have many men on here who are also in not so good situations, why have continbued to defy the nomograms.

I would continue to search out other protocols and other treatments. Zufus is an amazing wealth of information. Perhaps direct e-mail and/or phone conversations with him would be useful. He also is friends with Ohio State who has had some good success with various strategies.

I wish you the best on your journey. Discouragement and depression are not abnormal side effects to PC. If there is any way you can stay positive, even with the help of medication or counseling, it will make your journey more bearable.
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
1 year psa (364 days) .01


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3781
   Posted 7/18/2010 9:05 PM (GMT -6)   
Hey Arno, read "David's 5.5 year history".. Never give up the ship.....
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. A "top" radiation oncologist here in Denver, equipped with the latest IMRT/IGRT/RapidArc machine says he can do better by me..


Arno
Regular Member


Date Joined Apr 2010
Total Posts : 54
   Posted 7/20/2010 1:04 PM (GMT -6)   
FLHW(David E) said...
Arno,

Having gone through a similar path and diagnosis as you, I'd suggest considering a second line hormonal treatment before chemo.
Look into HDK+HC or DES+Wafarin


David,
thank you very much for your advice. I have found a lot of information indicating that the 'standard' chemo's, such as taxotere, had very little effect on survival time, although it is a very expensive treatment.
For example, www.ncbi.nlm.nih.gov/pubmed/15630849. In another study, over 1998 to 2002, the effect of chemo on the average survival time of PC patients, is said to have been even negative by 1 month. I have gone through your weblog and I think the period of 13 months chemo, with the additional medications against side effects (self-injection as well) did not have the highest quality of life for you.

Your weblog: what courage, energy, belief. Awesome ! And what angst, sleepless nights, pain. Gruesome ! But you do belong to the less than 25% which are surviving 5 years.
Looking at your treatments: it has been 80% HT, 20% chemo. 2 times Casodex, whith very long anti-androgen withdrawal response, 2 times ketoconazole (no AAWR ?), once nilandron, and now DES. And the chemo had not much effect on the PSA, isn't it ?
You wrote: 'Cancer is with me everywhere, every minute, everday', and that has become true for me too.
March'06: PSA 3.6
Diagnosed at age 63 Sep'09: PSA 575, GS 7 (4+3)
3 positive cores in 6
Bone scan: as a fully lit christmas tree
With Zoladex+150mg Casodex PSA <0.1
Additionally 4-weekly Zometa (zoledronin acid)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 7/20/2010 4:18 PM (GMT -6)   
Arno
I can only add my well wishes to this discussion. You are walking in an area as foreign to ma as the moon. Guys like Zufus and living1963 are much better guides.
It would be instructive to let us know how your high PSA was discovered back in August 09. Was this part of a regular physical or did you have other symptoms? Did you have any warning?

You've made my pee problems insignificant.
I wish you well.
Jeff (the leaking one)
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 3+4=7, 3+3=6. 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 controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. "There must be another issue."
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 15 "Short sphincter"
7/15/2010 one year: 2 pads per day. 140 ml/day, dry in bed.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05,
4/14 9 months - 0.04 (Siemens Centaur) and <0.01 (Roche ECLIA).
7/12 1 year - 0.03 (Siemens Centaur, direct chemilum); <0.01 (Roche Cobas 601 ECLIA)


Arno
Regular Member


Date Joined Apr 2010
Total Posts : 54
   Posted 7/21/2010 4:00 AM (GMT -6)   
Worried Guy,

I had not seen our family doctor for 30 years or so. Not even ever having a cold. Then in May, June '09 I felt less fit, and a month or so later I had pain in my upper left leg when I walked up a staircase. I went to the doctor, and from thereon my life changed dramaticly.

And this could have been so differently.
March '06 I had a company medical checkup, and my PSA was 3.6. I did not known anything about PSA, and I was told all values between 0 and 4 were okay. Having never been ill, I believed it. There were no further checks, nothing.
With my PSADT at that time, of less than 0.5 year, and when I had been measured less than 1 month later, my PSA would have been above 4, I had gotten a biopsy, and my PC would have been curable.
As the preacher said: '...but time and chance happen to them all.'
March'06: PSA 3.6
Diagnosed at age 63 Sep'09: PSA 575, GS 7 (4+3)
3 positive cores in 6
Bone scan: as a fully lit christmas tree
With Zoladex+150mg Casodex PSA <0.1
Additionally 4-weekly Zometa (zoledronin acid)

Post Edited (Arno) : 7/21/2010 3:23:48 AM (GMT-6)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 7/21/2010 4:58 AM (GMT -6)   
Arno,
Your sentence: "Then I felt less fit, and later I had pain in my upper left leg when I walked up a staircase." is very instructive.

Before this experience educated me, I thought prostate cancer meant you couldn't pee. Now I know it can be joint pain, back pain, tiredness.

How many guys just wait and blame the pain on working in the yard or lifting something too heavy?

All the more reason to do PSA screening.
Thank you for sharing your experience.
Jeff
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