Another try to discuss HT alternatives- The other thread kinda got off track

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Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/14/2010 2:28 PM (GMT -6)   
Hi ya'll,

Thought I might give this another try to learn about the various alternatives in the Wonderful (or Not So) World of HT.

This is a decision I may be faced with very soon and I feel ill equipped to honestly evaluate it and understand it. I am doing all of the research I can, but I have come to know that you folks here have been at this a might longer than me.

The other thread I started about the DNA Ploidy test and it's value kinda got off track with discussions and debates about Big Institutions vs private practices, the old tried and true vs new ideas and cutting edge and so forth.

You guys have the experience I do not. I really want to learn about the drugs, regimens, side effects, successes and so on from the everyday folks like me. Trying to research this stuff is a mine field at best for the non-medically degree'd individual like me.

So bear with me please and let's give this another try. Just point me in the direction and I will head off to do more research. Let's talk about the drugs, the combinations, the docs names you hear the most about and so on.

I am fairly adapt at gleaning the wheat from the chaff. I understood the surgery stuff, the radiation stuff and the things I have been through. Chemistry was just never a strong suit of mine and there is in fact a lot more variables to HT.

Thanks. Remember, this may not be just for me, but for every other guy that ends of facing the same process that I am.

I truly appreciate all of your opinions, your experiences, and the honest way we all share.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -performed
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.
7/22/10 PSA test 1.3 - Begin radiation for MET on leg
8/9/10 - Met radiation completed

erbob
Regular Member


Date Joined Jan 2010
Total Posts : 281
   Posted 8/14/2010 3:13 PM (GMT -6)   
Hi Sonny.  I'm sure there will be a lot of information on HT here soon.  I can only pass along the tiny bit that I have experienced.  Received a 90 day regimen of Bicalutamide back in the middle of Feb and got the 3-4 month shot of Lupron at the end of Feb.  Neither one was really very troublesome but I now have no hair on my legs any more and lost most of my chest hair. Whiskers and scalp hair growth have also slowed down lately.  Have put on a few pounds around the belly and a couple weeks ago had some BAD mood swings.  Have had numerous hot flashes but they are finally tapering off during the last few days. That stuff did weaken me somewhat but not to the point where it worried me.  Didn't weaken me to the point that I could NOT do the "honey do's.
 
I am really anxious to hear the information that the other PC guys will offer on the HT treatments.  Although my HT therapy was really only to shrink my prostate for Brachytherapy, I still did receive the stuff.  Hey, whatever it takes. 
 

Bob, located in Southern Colorado

Age 73 Retired Railroader.
Dx Jan 2010, Volume 51.345
Gleason 3+4=7, second opinion 4+3=7 (Don't know which to believe)
PSA
2.6 4/96.......... 3.7 4/07
1.9 5/97.......... 3.2 1/08
2.3 4/98.......... 6.1 4/09
2.2 10/99......... 5.3 5/09
2.4 8/00......... 5.3 8/09
2.3 6/01......... 6.9 10/09
2.9 2/03......... 7.3 12/09
3.6 4/04......... 6.1 1/10
3.0 5/05......... 5.0 3/10
4.7 4/06......... 0.7 5/10 (Lupron/Bicalutamide)
Volume study at CPCC (Westmont, IL) Feb 15, 2010 = 55.7cc
On Feb 15, 2010 put on 90 days of Bicalutamide
Got LHRH Lupron shot on Feb 29,2010
Another Volume study May 24, 2010 = in mid-40cc
BRACHYTHERAPY received May 26, 2010
Received 80 I-125 (Iodine seeds)
Activity per seed (mCi) 0.373
Total activity implanted (mCi)29.80
Measured exposure @ 3 feet (mR/hr) 0.06
Received the Brachytherapy at the Chicago Prostate Cancer Center from Dr. Brian Moran
Walked in the facilty and just a few hours later walked right out.
No after effects other than just a little sore from the needle sticks but NOT serious
enough to take ANY meds for pain.
PSA to be taken in three months (Aug 2010).

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/14/2010 3:23 PM (GMT -6)   
Bob, thank you very much. I appreciate you taking the time to give me some very important details. I had not heard much if anything about the body hair loss.

I have to admit that not shaving as much would be welcome. I am one of those guys where my face actually hurts if I don't shave everyday. My beard while not really thick grows very prickly and is a pain, and in the past has passed along some pretty good "beard burns". This one side effect may be welcomed by my wife.

Thanks,

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -performed
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.
7/22/10 PSA test 1.3 - Begin radiation for MET on leg
8/9/10 - Met radiation completed

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/14/2010 3:34 PM (GMT -6)   
Sonny,

You know my situation well. I am paying close attention to what you are trying to seek here. I have to admit, you other thread on learning about the ABC's of HT got off on a rabbit track. Like you, I know nothing about the HT side of things, and though I am not favorable to that path, I am not foolish enough to rule out an option before I actually need to make that choice.

The shaving bit, to this day, after all the neck/throat radiation I went through 10 years ago, I don't even need to shave the left side of my face or chin, as no hair has grown there ever since. I could grow a perfect half beard, but that would be silly.

I will be watching for your answers, and see what I can glean from them. Hope you get some good ones, ones that can help.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7/7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy, on Catheter #20

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/14/2010 3:57 PM (GMT -6)   
Hey Sonny I am staying out of this thread so doing A.S. or Watchful Watching!
 

Post Edited (zufus) : 8/14/2010 7:30:43 PM (GMT-6)


erbob
Regular Member


Date Joined Jan 2010
Total Posts : 281
   Posted 8/14/2010 4:17 PM (GMT -6)   
Sonny, a couple things that I neglected to mention in my post above are just a couple more things that I personally had experienced with HT.  One is that my fingernails and toenails really slowed down in growth.  Now they are just getting back to normal.  Of course all the goofy things that I experienced with the HT may or may not be encountered by other  PC guys on HT.  During the 3/4month period of being on Lupron and for the two month period after that injection should have worn off, my mind seemed to be in a fog or a haze.  Took a lot more time than usual for me to analyze things.  Of course, being 73 years old may have "something" to do with that but I am just now about back to normal with my thinking process.  Finally, my libido went down to absolutely zero when I received my PC Dx so don't really know how the Lupron affected that.  Physically, every thing "down there" functions just fine but the libido (drive) has to catch up yet.

Bob, located in Southern Colorado

Age 73 Retired Railroader.
Dx Jan 2010, Volume 51.345
Gleason 3+4=7, second opinion 4+3=7 (Don't know which to believe)
PSA
2.6 4/96.......... 3.7 4/07
1.9 5/97.......... 3.2 1/08
2.3 4/98.......... 6.1 4/09
2.2 10/99......... 5.3 5/09
2.4 8/00......... 5.3 8/09
2.3 6/01......... 6.9 10/09
2.9 2/03......... 7.3 12/09
3.6 4/04......... 6.1 1/10
3.0 5/05......... 5.0 3/10
4.7 4/06......... 0.7 5/10 (Lupron/Bicalutamide)
Volume study at CPCC (Westmont, IL) Feb 15, 2010 = 55.7cc
On Feb 15, 2010 put on 90 days of Bicalutamide
Got LHRH Lupron shot on Feb 29,2010
Another Volume study May 24, 2010 = in mid-40cc
BRACHYTHERAPY received May 26, 2010
Received 80 I-125 (Iodine seeds)
Activity per seed (mCi) 0.373
Total activity implanted (mCi)29.80
Measured exposure @ 3 feet (mR/hr) 0.06
Received the Brachytherapy at the Chicago Prostate Cancer Center from Dr. Brian Moran
Walked in the facilty and just a few hours later walked right out.
No after effects other than just a little sore from the needle sticks but NOT serious
enough to take ANY meds for pain.
PSA to be taken in three months (Aug 2010).

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 8/15/2010 10:14 AM (GMT -6)   
Hi Sonny, I have been on HT for 3 months. The HT is being used in advance and during SRT in the hope that it will make the SRTmore effective and/or drive the PCa into remission for some period of time. I started with just a shot of Trelstar and subsequently added casodex and avodart to get me to ADT3. The HT has already knocked my PSA down to < .01. The effects of HT are bothesome and more than a little scary. I have the hot flashes, but no hair loss or mood swings as of yet. My weight hasn't gone up, but I am working at keeping it where it is. It is very clearly shifting from chest, arms and legs to my waist. My biggest issue/concern at this point is muscle loss. My legs bother after exercising and I can't perform at the same level as i did pre-HT. Longer term I am worried about chlorestoral levels and diatbetes.

You would not believe the number of opinions that i received from doctors on the use of HT with SRT. Every doctor that i saw (Uro, med onco, and rad onco) said SRT was the way to go. My initial local oncologist and uro said 3 month lupron shot in advance and during HT. Not to be continued. The doctors, both rad and medical oncoligists in Boston, said at least 2 years ADT2, casodex and lupron. Casodex to be started first to avoid testosterone flare. My local doctors didn't think that it was an issue with my low level of PSA at the time. When I consulted with Dr Myer, he recommended the addition of avodart to get me to ADT3. He didn't want me to stay on HT for more than a year because I am already pre-diabetic.

In my case the issue of what type of HT to use and for how long has been the biggest decision that I have had to make. I am comfortable where I ended up, although who knows if it is the right answer. I guess only time will tell. I think for me hitting the PCa hard and early makes sense , and limiting HT to one year is something that is doable. I don't know if I could do two years without knwing it was absolutely necessary.
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

April 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

psa July 10 <.01 HT at work

aspen4
Regular Member


Date Joined Dec 2008
Total Posts : 59
   Posted 8/15/2010 11:42 AM (GMT -6)   
Hello to All,
Just wanting to add my two cents worth as far as the HT goes:
The first year was the toughest. Loss of body hair and libido. Hair has actually gotten thicker.
Mind was foggy at times but just tried to pay attention more so than usual....of course the wife helped out also;)
After the initial side effects wore off it seemed to me that life was really ok. I still get emotional at times but nothing like the first year. On day 44 of my Proton treatment I did break down in front of the proton team after my last treatment. They understood as do most people who go through the same thing. Overall it has not been the beast that some people claim it to be.

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 8/15/2010 11:46 AM (GMT -6)   
I also started having trouble sleeping through the night since I started HT. Can easily get to sleep, but usually wake up in the wee hours of the morning and cannot return to sleep. No problems with my level of energy, I do get a decent amount of exercise every day.
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

April 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

psa July 10 <.01 HT at work

dkob131
Regular Member


Date Joined Apr 2008
Total Posts : 364
   Posted 8/15/2010 12:15 PM (GMT -6)   
Sonny:  I've been on HT for exactly 1 year, I plan on staying on it for 1 more year for a total of 2.  The HT was started 2 months prior to SRT, its my last chance for a true cure obviously.
 
I guess I would say I've been one of the lucky ones in terms of side effects from the treatment.  I have all of the above mentioned issues hot flashes, loss of body hair, loss of libido and a larger mid section than when I began but these issues haven't changed my lifestyle other than the loss of libido.  I'm still very active golf, running, and enjoying things as they come.  I look at it as a means to an end and even if it doesn't work I know I've left no stones unturned in a try for a cure.  I don't want to downplay the issue that come along with HT because they can be very different from person to person.  It is what it is and I'll get through it, if my PSA starts back up I'll turn my sights on a long term remission and not look back.
 
Here's what I'd suggest, try it and if its something you can't live with then you can always stop the treatment, its not something you can't stop after you start. It would also give you some breathing room time for the cancer to not be growing while you look into some other treatments that may be a little easier on the body.  I try to look at it from the K.I.S.S. view, if you're stopping the cancer from growing you're prolonging your life and a extending your chances that they'll find the next bullet for us to use.(They already have a couple in the chamber.) 
 
I believe that you are being seen at MDA, if you're dead set against HT why don't you look into a clinical trial of some sort, if there is such an animal out there the MDA Doc's would certainly know.
 
I guess my final thought on this would be, although I don't know you personally it seems from your posts that you're not the type of person to go sit in a corner and let nature do its thing. 
 
Whatever you decide Best of Luck.  Keep on Truckin !!!!
 
David 
 
 
54 y.o.
Diagnosed 4/10/08

DRE Normal

PSA-5.5

Biopsy- 12 cores, 4 positive highest 4+4=8

Bone scan, CT scan and Chest X-ray clear 4/16/08

Urologist suggested surgery 4/16/08

MRI on 4/24/08 clear no suggestion of lymph node involvement.

4/24/08 -Started on Lupron and Casodex preparing for HDRT and IMRT in late July. This treatment will not preclude me from surgery if I change my mind.

Decide to have DaVinci surgery after another consult with surgeon.

6/19/08- DaVinci surgery at University of Washington.

6/25/08- Path report, clear margins, no noted extension

9/12/08- PSA <0.02

12/05/08-PSA <0.02 Six months after surgery

3/02/09-PSA <0.02 Nine months after surgery

5/02/09-PSA .10

8/17/09-PSA .21 Begin HT and set up for SRT to begin in 2 months.

12/31/09- SRT completed, still on HT and will be for 2 years, PSA is <0.01

7/30/10- PSA still <0.01, on HT 1 year with 1 to go.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3748
   Posted 8/15/2010 1:09 PM (GMT -6)   
I'm not HT expert, that's for sure, but my U-doc and R-doc both went over the subject...

When I brought up Orchiectomy, they both said it was the most effective and cheapest HT protocol...They also pointed out it was seldom used anymore because it was irreversible and "the other obvious reasons"...Then my R-doc added: "After you have been on Lupron for 2 or 3 years, the effect of that drug becomes permanent in most men so Orchiectomy is not that big a deal, really"....He also added: "If we do achieve a cure, we can always put you on testosterone but those cases would be very rare"....

So I suspect much of the decision making here is based on who is paying for the HT drugs and how old you are...
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 12 core 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. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

deer hunter
Regular Member


Date Joined Jan 2010
Total Posts : 246
   Posted 8/15/2010 5:23 PM (GMT -6)   
Hi Sonny my experince on ht was cassdex 4 months and two shots of lupron at the same time hot flashes hair loss onlegs beard growth was slow chest and stomach hair loss mind dissfunction at times forget things mode swings crying modes at times over love storys on the tube and the situtation I'm in with this pc! but 8 months out nearly back to normal what every that is with this stuff. I still get tired about 1 to 2 need nap but not taking one still trying to work thru this with walking and exercise but it doesn't seem to help but I'm trying to get back to normal can't handle not being able to go 10 to12 hrs a day
dx age 57 01/06 open RP 4/06 psa in 01/06 8.1  surgery path report Gleason 3+4=7 poorly differentiated  tumor was 90%involved in both lobes surgical margins postive. in the right apex and right radial margins tumor grade G3  perineural invasion present high grade of PIN found  T2c NX MX PSA 0706  .01 10/06 .02 01/07 .03 04/07 .04  06/07 .05  07/07 .08 07/07 bone scans pelvic ct neg. 08/07 proscintic scan neg.9/07 psa.10 net with rad onc. wanted to do SRT but i did not do it 10/07  saw a new dr at Emory University [my old dr urg. suggested second opinion ]  bone scans negs ct scans pelvics neg. biopies of the bladder and adrinal glands neg.another proscintic scan neg.12/07 Psa .11 clinial trial Emory injected with protons to try and find the cancer cells no luck 3/08 psa .17 06/08 psa .23 psa 09/08 psa .32 12/08 psa .39 3/09 psa .39 6/09 psa .43  meet with medical onc. he said  i might have waited to long to start SRT 7/09 psa .50  another bone scan ct scan all neg.MRI neg. meet rad. psa the last of 7/09was .55 onc. 7/09 started casdex 50mg 1 day for 30 days 2 shots of lupron started rad treament 10/09 40 treatments 75 gm 12 shots each time all aroud pelvic finished 12/09  psa .07 and psa 01/10.05 next dr visit 03/10 wait and see 3/10 psa.05 5/14/10  family doc done blood work at my request her lab psa .01  
6/17/10 saw rad.onc. having problems with hips and muscles {bone density test sch, 6/25/10 wait and see

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/16/2010 7:52 AM (GMT -6)   
Bob, BBFan, Aspen, Dkob131, Fairwind, Deerhunter,

Guys thank you very much for your personal insight and experiences with HT. This info is really valuable and has given me some new directions to look into regarding my decision, if I am faced with the decision in a few weeks.

David, I know you and I both have been fairly vocal about our personal opinions on HT, but like myself I am glad to see you are open to the continued evaluation of data.

Zufus, you are probably one of the most experienced guys here on HT and I value your information and insight, so I am kinda surprised at your stance of not participating in this discussion. Also, I am not quite sure about your mention of AS or WW. I understand the meaning of the terminology, but usually find it in discussions about the treatment of PCa in the first place. If you are referring to doing some testing and waiting a bit on the decision of HT that's where I am at this point. I am just trying to get my head wrapped around this part of the journey before it gets to the true decision time.

My wife and I actually had a discussion the other day about doing a little waiting. I have a Dr appointment on Sept 10th and will have a PSA test run the day before. I am kinda leaning towards not having another PSA test done until January. Call it a time out, break, vacation or whatever, but it is not one I have taken in this process since it began. Don't know the ramifications of such a decision, especially since I have had one MET already, but I do know I need it.

I just want to travel with my wife for a bit and enjoy the days and her company. The fall trip we have planned that kicks off with a visit to Niagara Falls and the GFMPH weekend and lasts for 6-7 weeks is just what I need at this point.

Guys thank you very much for your input and continued support. As I said, this is the first time that I really feel like I have a little control over the situation and the decision process. And whatever the decision is I will know that it is mine and I will be comfortable with it.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -performed
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.
7/22/10 PSA test 1.3 - Begin radiation for MET on leg
8/9/10 - Met radiation completed

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/16/2010 9:38 AM (GMT -6)   
Sonny,
The idea of taking a PSA break at this point in your journey makes perfect sense to me. Like me, you have used your curative cards, and in your case, you have already dealt with one MET. As your friend, I say reach a point with your HT learning, then put it on the back burner. Get HT, PSA, and PC off your brain, and go on that North East trip. It will be a major highlight for you and Lynn. Go while you are both feeling good, relativily and enjoy the compay of each other in that great big beautiful motor home. I only selfishly ask, for you to hit Easley SC either north bound or south bound. I want to see you guys again if I can.

Your PSA is free to do as it pleases right now, whether you stick around and monitor or become OCD about it. Your only real choice at this point is to start HT, not to do HT, or to do HT later.

I want to be well enough to take a long trip with my wife. We want the honeymoon we never had. Got married on a Sat and back to work on Mon, so we been talking about this for over 36 years. We want to go to San Francisco and the NAPA valley, plus Peg always wanted to see the Redwood Trees.

Bottom line, this might just be the perfect quality time ahead that you two both need, and might be the best window of opportunity to take this trip without worrying about cancer constantly. Just my take.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/16/2010 10:34 AM (GMT -6)   
David,

Very well said and exactly the same thought process that is going through my mind. I hope things start to turn around for you. You need the break too and a honey moon would be a great idea.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -performed
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.
7/22/10 PSA test 1.3 - Begin radiation for MET on leg
8/9/10 - Met radiation completed

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/16/2010 11:36 AM (GMT -6)   
Sonny you missed my sick humor the A.S. and Watchful Watching....was saying I am surveiling and watching the thread. That would be super stupid to suggest that to you right now. Maybe to use caution when deciding...you are already doing that and pre-thinking you next protocol(s) like a chess game is suggested by some people in PCa, seems wise.
You witnessed side effect issues, they are very real and better to know of them upfront.

There are so many ways to treat PCa in the drug arena, so even if one drug is loser or semi bad pick for whatever reason....you can switch or go to something else. You can end up learning about drugs that you didn't know existed, and learn how to spell some of them too! I only know something on some of them, some others are just as foreign to me as they would be for you and others. Like MDV3100 (ok called super casodex, in trials, why is it different, does it do alot more, side effects increased along with being 'super', would it feed hrpca more than normal casodex, should that event occur?. is their any risk to liver damage or weird side effects, does it negate going to chemo useage or some other drugs and why???, what are the risks in using this?) Talk about complex world of drugs...these questions and more get asked about.

Here is my Phd in Chemistry with PCa: flomax, cipro, casodex, proscar, zoladex, lupron, DES, coumadin, DCA (small trial amount as gineau pig...non-FDA approved), D3, herbs, alternative PCa additives- quercetin, artemisinin, milk thistle(silymarin), and some others that were tried at one time. I have another degree, a B.S.- Side Effects & Jelly Belly (lol), I have an A.S. (associates degree)- 2 yr. degree in ADT3 with studies in: hot flashes, heavy sweatings, muscle atrophy (atleast I got a trophy!), weight gain, bone loss, libido labotomy (different head of course), memory loss (CRS) and insurance overpayment accounting classes. Compared to some guys I am just gettin started....hoooo-rah!  (no more jelly belly, been around 160-165 lbs. at 5'11"...back to normal guy, even have the same warped humor I had since High School).

Post Edited (zufus) : 8/16/2010 11:43:13 AM (GMT-6)


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/16/2010 3:30 PM (GMT -6)   
Zufus,

This is exactly what I was talking about. You a veritable wealth of information. Glad you are on my side and coming forth. By the way congrats on the returning to the slim figure of the youthful man you once were. BTW, you have never had a signature line since I have been here, how the hell old are you anyway?

Thanks for jumping back in here on this discussion. And thanks for clearing up the AS and WW reference too,

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -performed
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.
7/22/10 PSA test 1.3 - Begin radiation for MET on leg
8/9/10 - Met radiation completed

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/16/2010 3:36 PM (GMT -6)   
zufus,
bro. sonny has a good point. us "old timers" know you well, and have seen your rare signature on occasion, but there are a lot of new faces here, so it wouldn't help to put it out there for others to see. just my thought
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/16/2010 4:12 PM (GMT -6)   
I have posted my stats sometimes in my threads, LOL didn't want to brag about how wonderful those stats were. I guess I will put them out there for the new people especially to see how treatments do vary, and alot depending upon ones risk level. Hey I am 59-1/2 now, like a kid you gotta get the 1/2 in there, only I am doing it cause with PCa that 1/2 year someday could mean alot more than one wishes to contemplate right now. But just turned 52 when diagnosed in 2002. Here is my poster child stats in PCa:

Dx-2002 drove myself to emergency for total urinary blockage (painful), Rx for flomax with a catheter installed too (nice day huh). Uro finds...bPsa 46.6 12/12 biopsies all PCa 75%-95% levels, gland size 35 normal (no bph-cancer caused blockage), Gleasons scores 7,8,9's (two sets like that), ct and bone scans clear (let's say appearing clear), Treatment: ADT3 drugs 5 months, then radiations of Neutron(Cyclotron) sessions later Photon sessions(IMRT), ADT3 total 2 yrs., quit and switched to DES 1-mg, did better in controlling psa and about no side effects, went off for 1 yr. for my chosing, resumed DES thereafter(sometimes random or intermit.) and still doing well at year 8.5 now, not cured but looking for control and duration in maximum possibilities. I was refused surgery by Dr. Menon who was righeous and correct, I got 8 opinions face to face and others by correspondence like Dattoli or Rcog. (I will shorten it next time-lol)
Youth is wasted on the Young-(W.C. Fields)

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/16/2010 5:34 PM (GMT -6)   
Hey Guys, as one who eventually may end up with HT (far from that point right now), I read about all the side effects and it just makes me want to go out there and start HT immediately.
 
(Now that's my example of sick humor, just in case someone takes me seriously!!)
 
Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. Next PSA late Sept.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4229
   Posted 8/16/2010 9:47 PM (GMT -6)   
Most side affects can be minimized with other medications and living a healthy lifestyle. The lack of Libido is certaintly an issue that can't be fixed. I know a lot of individuals that have been on HT for over 10 years and are living normal lives. I guess it's something you just learn to live with just as many other PC patients learn to live with ED and incontinence. There are few free rides with this disease.
JT

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


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/17/2010 6:01 AM (GMT -6)   
Good one Mel (sick humor or any humor has soothing effects), HT it's like looking forward to getting your gonads removed (lol). But, the good news is you have alot more choices than you know of. Hey, when I switched drugs and went anti-mainstream I took that leap and glad I did, the quality of life is wonderful now, the only docs that mentioned this choice or existence of that drug were my onco-doc and radiation-doc (both mentioned it has been used with results in others). My uro-doc didn't even inform me about casodex and no casodex prior to Zoladex, so nice flare thrown at me (with high stats), not wise. He got fired later for a few reasons, that was actually a day of celebration for me.
Youth is wasted on the Young-(W.C. Fields)

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3748
   Posted 8/17/2010 9:54 AM (GMT -6)   
There is a new thread on this board, started by chadhad, where it looks like orchiectomy ALONE lowered a stage 4 patient's PSA from 500 to .04

Is it possible this time-honored treatment is more effective than all the expensive drugs or is <chadhad> just a unique case....??
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 12 core 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. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/17/2010 12:44 PM (GMT -6)   
Sorry Sonny this thread has now morphed again, I hope you got your questions resolved, sounds like you are on top of this, kudos for you on that.
 
(Orichietomy)-Hey there is nothing really ridiculous about doing such, men don't like the idea of jewel removal, but it works (his psa is fabulous right now). It is not reversible and is permanent, which means whatever side effects are probably staying (maybe hot flashes, sweats), but maybe somebody like stxdave or others can elaborate on this much better. I suppose you could get 'T' supplementation if possible for ones scenario.

You still have other T being produced in your body, low amounts in comparison. So psa could rise and require treatments over time.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35 normal, ct and bone scans appearing clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off for 1 yr., controlled so well, resumed, using intermittently, pleased with results

Post Edited (zufus) : 8/17/2010 5:22:24 PM (GMT-6)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/17/2010 3:25 PM (GMT -6)   
Sonny,

Thanks for "unmasking" the real Zufus. As John T and Tudpock are in my mind the Brachy guys, Zufus is by all means the HT guy. HW is indeed honord to have these guys as a resource here. We are indebted to them.

This is not to diminish the many contributions made by so many, but these three guys rise to the top in my mind.

My thanks to everyone who has made this site a veritable treasure chest of PC knowledge. All with one click of the mouse. It saves so much time to have guys who have taken the time to digest the volumes of data and information to understandable explanations.
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
15 month PSA <.01
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