Another Zero, but still need some help Pls

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Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 6/2/2010 11:42 PM (GMT -6)   
Very please to score another zero today 0.03 again @ 18mnths.  But Doc is concerned about my very low testosterone, and wants to put me on a patch or gel, as it is dangerously low.
I am scared to increase testosterone, in case it brings on a recurrance.  Has anybody had any experience with this situtation, and what should I do?.  Any advice would be greatly appreciated..............................Kev
Age 51yrs
6 out of 8 cores positive 3 X 60% / 3 X 10%
PSA 4 Gleason Score 3+4=7 Stage T1c
Robotic Surgery 24/12/08
Upgrade Gleason Score 4+3=7 Gleason Differential 60%/40%
Stage T2c Three small foci total volume <10%
Neg Margins and Nodes
Nil - Extraprostatic Extentions
Dry less than 1 week. ED- okay with Meds.
PSA at 12mths no change remains 0.03
"Everyday in Everyway I get better"


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 6/3/2010 4:54 AM (GMT -6)   
Kev, it will be interesting to see some of the responses to your question. I would expect that in a PCa patient, the doctor would want to see a low T level but it may be like estrogen...you don't want alot of it (if you're post menopausal) but you want some due to the risk of heart disease. Did the doctor explain his/her concern?
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 6/3/2010 5:39 AM (GMT -6)   
I just had my T level measured for a base line before HT. I was surprised to see it come back below normal, at 234. Range is 300-800. Don't know what this means. Haven't yet discussed with my Uro.
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


Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 6/3/2010 6:56 AM (GMT -6)   

Hey Kev......while my numbers are not as low as yours, I have experienced symptoms of Low "T" for about a year, now. I have posted on this in a couple of threads, but have been laying low until more in-the-weeds-testing results have emerged. I have recently been seen by an expert endocrinologist at HUP in Philly, whose specialty is this stuff. There have been studies where testosterone supplementation has been done to men with low risk PCa recurrence, but the prevailing medical wisdom dictates that it's risky to supplement. I've been tested for not only overall (serum) testosterone, but also "free" testosterone, % of free tesotsterone, sex-binding globulin hormone, and the other markers such as estradiol, LH, FSH and prolactin. All of these play a role in optimal male functioning. I go back to Dr. Peter Snyder on 6/8 to discuss the latest results, which show a low, but in range, levels for serum and free "T"......my percentage is out of range low, and the SBGH is fairly high. Long story short, with all the research I've done, and in consult with Snyder, the part that this SBGH plays is huge. It acts as a Pacman to serum T, which when high, lowers the amount and % of free T to ineffective levels. The key may be to find a way to lower the amount of SBGH and perhaps estrogen as well, to the point where enough free T is freed up. So, just increasing T by patch or gel could be ineffective in the long run, because the body's natural instinct to maintain homeostasis will cause it to raise the SBGH as the T level increases........I realize your overall T levels are too low, and supplementation would have to occur just to get them up in the normal range. But you might ask your doctor about these other things as well. Just be prepared for a Uro's eyes to cross as it's out of thier area of expertise. That's why I went the endo route. Sorry if this is rambling; I'm still getting my head around it. I'll post more after 6/8, and hopefully I can help those of us who have had these difficulties post-treatment.

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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/3/2010 7:31 AM (GMT -6)   
kev, congrats on another zero, espec 18 months out. i don't understand, why would that low "T" number be dangerously low? isn't a low one a good thing when dealing with PC? this is an area i know nothing about, so i am having a hard time understanding.

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 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


55 and healthy in NJ
Regular Member


Date Joined Apr 2009
Total Posts : 58
   Posted 6/3/2010 9:31 AM (GMT -6)   
I was getting some benefit from Viagra/Levitra/Cialis, then for some reason even they weren't working. So I decided to get a baseline testosterone level test. I was surprised to find that my testosterone was below normal range. I was also concerned about the testosterone-recurrence possibility, but I wanted to get my level up a little at least so that I could perform. I found out that the only nonsteroidal testosterone supplement is the herb tribulus terrestris, which reportedly has no side effects or contraindications. So I tried that for a couple of months and then got my testosterone level rechecked. My level had risen into the normal range. I'm not saying that there is a direct connection, but since I started taking the herb I haven't had the problem again.



Greg

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 6/3/2010 9:50 AM (GMT -6)   

Greg, that's interesting.........I too did the research on the natural supplements and came up with the TT as a way to raise T levels. What I also found was that Avena Sativa, which is basically green oat extract, lowers SBGH, thus freeing up T w/o direct steroidal supplementation. Also, Stinging Nettle Root extract does the same thing-------I've found the references on a couple of medical sites, but also on weight builder forums, where T plays a huge part in that. Did you have any side effects with the T-Tribulus such as a speedy feeling, or increased heart rate? You're the first guy I've seen that's tried this..........did it noticeably raise your libido?----I haven't tried any of these remedies pending my next visit with the Endo.

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


Super7
New Member


Date Joined Jun 2010
Total Posts : 1
   Posted 6/4/2010 1:09 PM (GMT -6)   
My T score is currently 49. And I have many of the side effects of Trelstar.
(Hot Flashes, Gynecomastia, Constipation, Dizziness, Headache, Edema in legs,
Osteoporosis, Coughing, ED.)
Some people have gone on intermittent treatment because of these. The Gynecomastia does not go away.

Cholesterol numbers are great.
The only issue is that my Creatinine level is starting to creep up. (CKD stage 3.)
57 years old
Dx fall of 09, PSA ~5, Gleason 4+3, T2c

Started on Trelstar LA Dec 09. I have many of the side effects.
Radical prostatectomy (da Vinci) at Boston Medical Center April 10.
May 10, PSA < 0.1.

Post Edited (Super7) : 6/4/2010 1:13:10 PM (GMT-6)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/4/2010 4:12 PM (GMT -6)   
Congrats on the 18 mt.s zero, wishing you a lifetime of them.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 6/4/2010 4:26 PM (GMT -6)   
My doctor tested me last visit, I was OK.  But he said he has been testing many of his patients and many are low and he has been giving them testerone prescriptions, his argument was, since you prostrate was gone it was not still a problem in getting PC. 
Dx'ed 5/08 one core 2%  out of 12  3+3 gleason
DREs all negative
PSA was in the 3-4 range then jumped to 7
I have the enlarged prostate, on the order of 100cc.  After taking Avodart for 3 months  my
PSA was cut in half.
I did Active S for a year but concluded that I didn't want a life
of biopsies and Uro meetings.
DaVinci on 6/24/09  UCI Med Center  Dr Ahlering, long surgery based on size and location
Final was 5% one side all clear, but had a huge 90 grm prostate
Now we work on pee control, ok at night but sitting is a big problem.

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