Holy Jeez- Back to Square 1- It's Not Low T

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Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/5/2010 3:43 PM (GMT -6)   
Well it's safe to say for me at least that I am learning a lot more about the abyss of PCa than I ever wanted. I am faced with symptoms that suggest that I MIGHT be suffering the effects of low T. Then I open this can of worms and a good healthy debate about low T and high T and the causal relationship to cancer and the possibility of treating low T in the presence of PCa.

More gas on the fire. My doc called today with her smiling voice of I have good news, "Your Testosterone Level is great, it is 760.0". To which I replied, "well doesn't that just suck".

Caught her by surprise with that one I'll tell you. I explained that now the onus is on her to figure out the exact causes of all of these symptoms I have. I am sick and tired of being sick and tired and the ball is in her court. Of course I was very nice and polite about it. You don't really want to p*ss off your PCP after all.

So she agreed to do some research and figure out the selected tests for deficiencies or overages of whatever and get back to me.

Mel started a new thread today about exercise and there have been lots of conversations about nutrition and supplements. So I am also going to avail myself of the Nutritionist team that MDA has on staff to deal with us cancer folks.

Dang I was hoping I could avoid all of this healthy eating and working out stuff. It sure puts a cramp in my care-free pick up and go in the RV whenever I feel like it, style. Might have to learn a whole new way of cooking and as we all know the healthy stuff is usually more expensive and really doesn't taste as good. I mean that's why we eat the bad stuff in the first place. It tastes good.

So for the time being I have eliminated low T as a cause of my issues. I have also eliminated the for certain fight with my Rad Onco and PCa Onco about whether or not to treat low T when you have PCa. I mean talk about locking up their jaws. It seems like the second phrase out of their mouths after "good day" always seems to be "let's talk about HT".

Onward and Upward my brothers, Once more into the trenches. I am fighting the fight against PCa for life and longevity, it is too much to ask to have the strength, stamina and mental outlook to really enjoy it.

Crap, I forgot, yeah I know, "EVERY DAY IS A BONUS".

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

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 8/5/2010 4:09 PM (GMT -6)   
Hi Sonny,
 
As always, I've enjoyed your writing style in your interesting post. I'm glad to hear that your T level looks good, but now you have to battle on and find out the reason for your fatigue sad .  I know you will find the answer and feel better soon.  
Hope that you will recover from your present low and feel better quickly.
All the best to you.
 
Mag

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

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/5/2010 4:19 PM (GMT -6)   
Thanks Mag. You know I would have never known I had PCa without the tests. Never felt anything out of the norm. Surgery, IMRT and now MET rad have all been almost non-events. So this thing is really beginning to wear thin on me.

Maybe it's a smack in the head from the PCa Gremlins (can't call them anything else) telling me "OKay you've had it easy so far, how about a dose of reality".

Who knew,

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

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 8/5/2010 4:25 PM (GMT -6)   
Hi Sonny,

Well, so it isn't T after all. Hmmmmmm?

I think all at HW would agree that you are the most chipper person here. But ..... is there a chance you might be depressed?

We have the benefit of having a very close friend who is a psychiatric nurse practitioner and from her I've learned many things. Two being that A) Clinical depression isn't being depressed as in "I'm so depressed," or "That's depressing," it's about having low energy and finding the highs, and lows, of life are clipped and B) It's something you 'get' not so much because of what's happening in your life, but because certain chemicals in your body are out of kilter ---- not a lot different than my need for a thyroid pill to keep my body chemistry in balance and my energy level up.

If your T levels are good, and I assume your thyroid is A-okay, then you might want to ask about depression.

Think about it. Whatever it is you need to get on top of it and get that RV rolling to mid-Canada. Eh? ("Eh?" being the Canadian verbal question mark which American's always tease us about ---- but interestingly find nothing funny about the American verbal question mark equivalent, "Unh?")

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, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/5/2010 4:45 PM (GMT -6)   
Sonny:
 
You know the old adage about quacking like a duck and walking like a duck means...IT'S A DUCK??
 
From my reading, the effects of radiation are cumulative and often delayed. My guess is this could well be the radiation that is causing these symptoms. It seems that everyone who has radiation seems to run up against a brick wall called fatigue. It also seems to last for a long time but then eventually goes away.
 
That's my medical opinion, Sonny. If I'm wrong, I'll refund my fee.
 
Mel (who may eventually be following in your footsteps!)

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week). As of 6/22/10, I would say I am 100% continent, but I do have (controllable) significant urgency.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.

Second post-op PSA on 6/21/10--0.02--Not too bad!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/5/2010 5:04 PM (GMT -6)   
Sonny, thought this was a good link of a study that shows T-levels at different points in a man's natural aging process. Looks like your number is way up there, Stud Muffin.

http://dspace.dial.pipex.com/town/estate/aquc35/book/mohr.pdf
Age: 58, 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: Aug 3
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 - 17 days, Total Blockage, Cath # 20 - 7/19

RCS
Veteran Member


Date Joined Dec 2009
Total Posts : 1247
   Posted 8/5/2010 5:30 PM (GMT -6)   
Sonny,
 
Glad to hear your T is so high.  Real good news.
 
Sorry to  here you are depressed.  I figure at the rate you are getting hit with Rads, side effects (including depression) are inevitable.
 
I've had anxiety and depression (pre-PCA).  Its nothing to fool around with, and certainly nothing a Rad, Onc or Uro is trained to diagnose or treat.  Get professional help if your are depressed (Psych).
 
I've followed your posts for months, and can only admire you and your wife.  You guys have been through a lot.  I  can not imagine facing what you have.  But yet you keep coming back and helping others.  Hang in there buddy, you are only a couple of clicks from ok.
 
 
PSA 2007 - 2.8
PSA 11/24/2008 - 7.6
Pc Dx 2/11/09; age at Dx 62
RLP 4/20/09
Biopsy -  Invasive moderately differentiated prostatic andenocarconoma; G 3+3=6; PT2C; No evidence of Seminal Vesicle or Extraprostatic Involvement; Margins clear; Tumor identified in sections from prostatic apex.
70 gram prostate.
Immediately continent after removal of cath.
ED - Trimix works well; viagra @ 70%
PSA - 7/31/09 <0.06
PSA - 12/1/09 <0.06
PSA - 3/29/10 <0.06
 
 
 

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 8/5/2010 5:36 PM (GMT -6)   
Hey Sonny...........could you spare a brother a little "T"? Skim a little off the top and send it my way!------well, so that ain't it. At least the process of elimination showed something, and it wasn't in an "iffy" range. I see the suggestions of depression, but the suggestions of post-radiation might be spot on, too. Do some research as to Vitamins/minerals. There are other meds that can block absorption of such...........I've had several doctos suggest a psychiatric eval, and I think that's such a default place for them to go, because it can be so nebulous, and treatment is often hit and miss for months and years. Getting on top of the things that are easy to detect, and progressing to the more difficult as you rule out sounds like a sound plan.
 
Arnie in DE
Age 56 (biopsy & surgery)
PSA at Diagnosis-3.9
Biposy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3)
 
Surgery 1/26/09-DaVinci Robotic Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA
Dr. David Lee
 
Pathology Report- Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, Gleason 7 (3+4), Stage T2C, NO MX, Prostate 61.8 grams, gland involvement 2-10%
 
Catheter removed after 8 days, totally dry at 3 months. ED issues continue, Viagra (via ADC) nightly (100mgs), VED use in earnest at 6 months. "Ball Park Frank" plumping at this point......ED at 10 months continues to improve, albeit slowly. Continued daily use of 100mg Viagra (ADC). Discontinued pump use; manual stimulation to varying states of erections; achieved penetratable erection on a couple of occasions----At 13 months, nocturnal erections are frequent. Still taking 100mg of ADC Viagra nightly. Libido still in the dumper, but working on it with doctors.
3 month PSA--<0.1
6 month PSA--<0.1
10 month PSA--<0.1
13 monthPSA--<0.1
18 month PSA--<0.1

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 8/5/2010 7:14 PM (GMT -6)   
Sonny,
The most prolific word that you used in your post was "abyss." I know my energy is low and I hit the sack early, but hey I am eating those healthy foods and getting exercise and the fatigue lingers. Decided to live with it another 6-12 months before I do anything else as I have to think, well surgery in May 2009, IMRT in Jan. of 2010 and 61 years of age. The good news is my pubic hair is back and I might just go get me a Speedo to wear at the lake just to see how many people turn their head the other way. The best to you and Lynn and as always keep us posted.
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 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 8/5/2010 10:03 PM (GMT -6)   
T level is good. Now ask what your free T is and what your E2 and D3 levels are. PCP could consider it job security :>)
 Hilarem datorum diligit Deus

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 8/6/2010 4:25 AM (GMT -6)   
Sonny, Well you figured that oun out wrong. What a supporse, I was shocked to say the least. So now lets get to figureing what to do to fix this thing that is going on. Sheldon and Mel made great points I was thinking all along that it could be a combination of the two. Radiation fatique and a bit of depression. All of us are going to life changing events and as humans we are very resistance to change.

Now we know your a Stud Muffin I guess next we will be calling you a Gyn RAT! LOL

Give my love to Lynn.

Your PCa Brother
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%

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/6/2010 7:40 AM (GMT -6)   
Well, I just got back from my 9th radiation treatment. One more to go and I will knock that one off on Monday. Everything with the rad is going along nicely except for the Love/Hate relationship I have developed with the technicians.

They love the do-nuts I bring in and cuss me out at the same time because they lack will-power and believe they are putting on pounds. Maybe it's some deep seeded need I have to cause them suffering as well. I think not, but who knows.

So wasn't the T level an unexpected surprise. But then again I guess nothing should surprise me in the realm of dealing with PCa.

Many of you commented on the possibility of depression. I have had some experience with it over the course of my life and in fact, am currently on medication for the possibility of chemical imbalance issues. My PCP just changed my meds about 3 months ago. So if I am depressed it is not on any conscious level that we can determine, but rather on a cellular/chemical level that we are trying to find the right fix for. It is true that the symptoms of depression and low T almost mirror each other, so who knows what the heck is going on. I mean we definitely ruled out low T as the cause.

Sheldon, I am fearful for you that it may be as simple that I have to start eating differently and become a "Gym Rat" like our brother Jeff "Corvetteman". The energizer bunny has nothing on that guy. I have met him in person and know this for a fact.

The reason I am fearful for you about this is that if it turns out that healthy eating and exercise cure the ills, your wife is going to be more adamant about you regimen.

Mel, thanks for the input. In my case thought the duck is not quacking, but rather leaving things all around me and they aren't the "golden eggs".

David, thanks for the link, good information. Don't know about the Stud Muffin title though. I feel a little more like the minister some years ago that revealed that he "lusted in his heart". I have the lusting part down, then the mind kicks in and tells me "so what, there ain't a darn thing you can do about it". Time will tell on that part of the recovery though.

Arnie and Swimom, yep, ruled out the low T and yes I am providing my PCP with job security. It's cool though. As I said in another post earlier, I have reached my total out of pocket max for the year and anything I do for the remainder of 2010 doesn't cost me a penny. So I'll sign up for any of the tests they want to put me through and hope in the end they find something definitive.

RCS, thanks for the kind words. Lynn and I are truly trying to enjoy life and relish in the day. I mean you can't really just sit down and quit can you.

Michael, you know our time line is almost identical. 61 years old, my surgery in Sept 09 and IMRT in Dec 09/Jan 10. I am not sure I agree with the part about giving it 6-12 more months before dealing with it though. So maybe I will discover something in my travels that may be of help to you. Man that would be cool. It would give me the opportunity to give back here at HW, and that is something I really want to do after all of the help and support I have received.

Jeff, okay I'll sign up for the exercise part of the program. But there is no way on this earth that I am signing up for that torture thing you go through called "Spin Class". Count me out on that one brother. You gotta have a mean streak to go through that one. I have seen it on TV and it wears me out just to watch.

Thank you all, my friends, for your continued support,

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

Post Edited (Sonny3) : 8/6/2010 7:46:05 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/6/2010 8:37 AM (GMT -6)   
Sonny, this mind sound too obvious, but let me lay it out.

Why don't you enroll in an Oncology Rehab Program. With your insurance situation, and your cloeseness to some great hospital, you must have a choice of programs. Just ask your Rad Oncologist, and a simple referal will get you in.

I am still going to do that in my area, as soon as the great catheter war ends for me. I am in terrible general shape because of all this, and I know it.

When I did this 10 years ago, it was great. I was assigned my own personal fitness person. I had weekly access to an oncologist dietician, who helped me adjust my diet. Mine was on the 10th and top floor of my hospital, had a nice indoor track, etc. I was treated like royalty every day I was there. I spent 6 months, lost over 25 lbs, then they extended it another 6 months.

You would have to have some good options there. Took about an hour out of my time a day, and it helped me the first time around to overcome all the radiation fatigue. Just an idea, brother. I am looking forward to doing it again, as soon as I can

David in SC
Age: 58, 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: Aug 3
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 - 17 days, Total Blockage, Cath # 20 - 7/19

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/6/2010 10:18 AM (GMT -6)   
David, good suggestion. I will be calling MDA today and see if they have such a program. It's definitely worth looking into.

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

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 8/6/2010 10:52 AM (GMT -6)   
Sonny said, "The reason I am fearful for you about this is that if it turns out that healthy eating and exercise cure the ills, your wife is going to be more adamant about you regimen"

Regimen? Regimen? What's with this regimen stuff?

Here's my regimen. I'm at the lake cottage. It's 11:45 a.m. I'm still abed working on the computer. My wife has brought me coffee and toast and peanut butter. I shall rise shortly, amble down to the beach, have a swim, (nothing major, think of a nice dip in the lake) then perhaps over to the boat house to check the little aluminum boat with the 25hp and give some consideration to going fishing this evening. But, now it is lunch time. A rest on the deck and, who knows, a snooze? Then, in a burst of energy I'll go have a look at the tool shed which my wife claims needs a clean up. I'll be too overwhelmed at the thought and head back to the deck noting that in an hour or so it will be rum and coke time. This bright thought will spur me to a burst of energy and I'll head for the beach to see how the grandchildren are doing. From the cottage the rum and coke will be yelling louder and louder. And I'll realize that in Newfoundland it is evening drink time and in honor (or, honour as some here like to say) of that fine province I'll head for the deck and a R&C pleased with myself for having had such an active day. I'll decide to skip fishing --- an awful mess if you actually hook one --- and perhaps, after dinner, go out in the boat with my camera to see what's going on at the bald eagle nest a couple of islands over.

That Sonny, is a regimen. If you have any nonsense to spout about healthy eating and exercise please don't tell my wife. She already thinks I'm the family dog ---- she keeps telling the kids she's going to take grandfather for a walk. Haaaarrrrrrumph!

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, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/6/2010 1:51 PM (GMT -6)   
Nicely put Sheldon. I am absolutely drained from reading about the energy that you shall expend before days end.

I am going to bed and take a nap for both of us. Maybe 3-4 hours ought to do the trick.

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

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 8/6/2010 2:52 PM (GMT -6)   
Sonny,
I do know part of my fatigue is from urinary frequency which came back with a vengence after cancer reoccurance and even more so after SRT. I felt really alive today being at Wal Mart at 3pm. My son is getting married September 18 at 7pm, just hope I can stay up that long. I'm going to sit next to the person giving the toast and if he gets long winded, will kick him on the shin.
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 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/6/2010 3:07 PM (GMT -6)   
Michael, shopping, attending weddings and kicking folks in the shins are all good exercise and aerobic activities. You could be onto the easy mans way of staying in shape and building energy routine.

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

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/6/2010 3:08 PM (GMT -6)   
Michael,
I know that solid wall of fatigue feeling well. Mine hits the first time around 2-3 PM as a rule, doesn't matter if I am doing anything or not. Just comes on like an invisible fist. If I am sitting or laying about, it almost feels like I am paralyzed, and it takes great effort of mind and body just to move. I do not ever nap by nature, my entire life, use to getting by on 4-6 hrs sleep at night, but these days, I can be sitting up reading, and my wife will find me passed out cold asleep, sometimes with a pen in my hand and a note pad on the floor! Is very real for those that doubt.
Age: 58, 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, 8/6 .06 3
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 - 17 days, Total Blockage, Cath # 20 - 7/19

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 8/6/2010 9:26 PM (GMT -6)   
Sonny, Michael, David, et al .....

Well the day went in the crapper about an hour after I last posted. My wife announced we were going to a lake some 30 miles away to visit and have dinner with her brother and his wife. Better I should have my teeth extracted without benefit of anesthetic. But, off we went. The guy is a vegetarian and I'm so loaded on broccoli salad I may never recover. I've been ODing on slices of summer sausage and extra stiff rum and cokes since getting back to our Lake of The Woods cottage (near Kenora, Sonny, mark it on your motorhome map.) Tomorrow I'll skip the beach and boathouse and stick to my chair under the shade umbrella on the deck. Haaaarrrrumph!

The only energy I plan on expending is deciding between ribs and hamburgers for dinner.

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, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  
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