Testosterone Replacement after Successful Seeds, EBRT or Radical Prostectomy

Hi Sam, Jeff and Fairwind

I am really glad to see you guys trying to face this issue of T supplementation squarely and trying to educate each other. I'm having seeds March 30 in Seattle with Peter Grimm and I just had a phone conversation about this subject yesterday with him. Grimm calls me from the ER where he is visiting his sick father in law. Tells you what kind of amazing dedication he has to me and his family. Anyway I asked him about his recommendation that I wait about two years to try T supplementation again. He explained that he would want to see "the pattern of my PSA's" and that he would know when things were stable. He's an artist I believe of seeds-- a kind of savant. He expects my psa to bounce around a lot the first year particularly since I am coming off ADT just I am getting seeds so I will probably have some rise in PSA just from going off. He said that it would be difficult for him to tell what was causing what if during the first year I took T and my PSA rose from 1.0 to 1.5 for example. He is of course trying to ascertain if I have PC outside the prostate and somehow the seeds missed it. What we need is an artist to read our case who is not baised either way for or against T. I get the feeling Myers is biased again.

What I get from all this is that if we have stable psa's and the cancer seems to have been confined within the prostate then it is safe and desirable to supplement with T. If we have PC outside the prostate and its controlled with ADT then for about 30% of guys ( a la Leibowiz and Turners practise) they will be able to go off ADT and remain on T for a long time if not permanently and a lot of other guys can cycle off and on ADT and T as a chornic treatment. This is my current reading of the issue, which is just that, my thinking. Also the best protocol for raising T is John Crisler, DO though he knows not much about PC.
Best
Richard

 Richard:
I have been using testosterone replacement therapy since 2003. My goal was to get my "T" above 1,000 and keep it there !!  I'm not sure what caused my "T" to get in the castration zone the Lupron shot, the radiation or maybe it was low to begin with and that is why PC showed up. Never the less I did not fair too well with low testosterone. I was in a fog, I couldn't do the check book, I cried a lot and constantly thought life wasn't worth living and wanted to end it. At the same time my youngest daughter was dying of breast cancer. So I was at the lowest point ever. She told me I always fixed things so fix my self and get some testosterone. The last 8 years have been very good !! the fog has gone my libido and ability are back. Life is good. Other then getting married (50 years and going strong) the best decision I ever made. I never bought into the idea of testosterone being a cause of PC and when I read that women with breast cancer develop PSA in their breast and the ones with the highest numbers live the longest-- I do not have a PSA phobia. I track my testosterone, progesterone, estradiol and PSA ever four months and keep a chart. Weird but that is what I do.
 
Things that piss me off about the medical INDUSTRY - why didn't they check my testosterone and estradiol before they chemically castrated me ?? That is why I am my own health determiner.
Henry
 
 
History: Biopsy 2002 = Gleason 7 = Seminal involvement = 3 mo Lupron shot =IMRT radiation = angina attacks > EECP treatment Jan 2003 =Testosterone Replacement Therapy Sept 2003, goal testosterone >1,000 = PSA > 22 started VRAC (Very Rapid Androgen Cycling) Jan 2011, PSA now at 10
 

Hi Richard:
 
Sorry about being slow to get back to you. I have been kind of busy doing some projects around the house. I am a tinkerer and usually have several projects at once. I have been that way ever since I can remember. I was born in 1934 and can remember messing with a crystal set radio made out of an oat mill box and a lot of fine wire when I was very young (KDKA Pittsburgh). I guess a start like that explains why I spent my working years fixing things and fixing processes in glass factories, tire plants and semiconductor plants. I never went to college but worked as an engineer from 1962 until I retired in 1989.
 
I March of 2002 my yearly physical showed  some irregularities in my DRE and my PSA had gone above 13. I knew a little about prostate cancer since I had been going to the local Man to Man meetings since early 2000. I had read that a father of a daughter that had breast cancer was a prime candidate for PC and since I was 64 at the time the statistics gave me a 64% chance. A biopsy confirmed I had PC, Gleason 4+3=7 in May of 2002, bone scan was clear but MRI showed the tumor extending into the left seminal vesicle. Aug 2002 a Lupron shot to shrink the tumor followed bt IMRT starting in Oct 2002 ending in Dec. In Jan 2003 I had several angina episodes during some all out sprints(I am a runner) I attributed this to low testosterone and a slight blockage. I Had EECP treatment(after arguing with the cardiologist -another story)starting in Jan and ending in Apr. My first blood test for testosterone (jan 2003) was 95.(why do they give Lupron shots without establishing a base line for T ??) this was a bad time for me as the low testosterone put me in a brain fog and everything was getting very difficult. I was getting 44 hot flashes a day with thought of suicide ! My youngest daughter was dying of breast cancer. All was bad !! In 2004 my daughter (my running partner for 20+ years) could  barely walk but she gave me Hell. She told me "you have fixed things all your life so darnit FIX yourself!! - tell the doctors to go to hell and get Testosterone" (she decorated her speech to get my attention) Jan 2005 I started using Androgel as a testosterone replacement. My goal was to get my T above 1,000, since then I have.  I have done some personal experiments to see what effect blood sugar and other variations can have on PSA, T, Estradiol and other blood parameters.
 
Early as I was fighting my way out of the brain fog. I read books by John R lee on hormone balance. Some things stuck. If testosterone is the boogeyman why don't 18 years have it big time since their T is in the 2,000 range. The big question of PSA, what it is and what it does. Does it kill cancer cells as some studies have shown ?  I have ever read a study that shows PSA promotes PC. Is it a messenger - should we kill the messenger ?? That sort of explains why I'm not too concerned with my PSA numbers. On the other hand if I do something that kills cancer cells as some studies show then it is not unreasonable to think there will be a reduction in messengers.
 
My PSA never got below 0.3 after radiation so the idea of waiting until it gets to zero would be unreasonable. My personal experience shows that within six days of not taking Androgel my T is in the castration zone (68) so why wait any longer ? thus my idea of VRAC (Very Rapid Androgen Cycling)  From what I have read estradiol is more then likely the culprit when it comes to unwanted growth (like breast in weight lifters and older men with low testosterone) Testosterone gets converted to estradiol and for that reason I take 1 mg Arimidex on the first day of my high cycle.(VRAC as I do it - high cycle, day 1 - 3 = 15 gr Androgel per day=15 mg T,  day 4 - 9 low cycle = nothing.)  I get a blood test about every four months.  We have an open Lab in the area where you can get blood drawn with the results the next day, no scrip needed.
 
I had set a PSA upper limit of 20, so when it reached 22 in Nov of 2010 I started my VRAC. My last test  March 2011 it was down to 10 after  11 cycles. a 50% drop in 4 months.
 
Well that is my story (practically a book) but one more observation: If I knew in 2002 what I know now,  would I take the same path ???   NO WAY I would have jumped on VRAC and not wasted the year + of my life and the stress on my family. But my biggest failure in life was not knowing enough about cancer when it came to my daughter. She died Oct 2004 of breast cancer.
Henry
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Heh Henry
I agree with what someone else said that I hope you wont blame yourself for not saving your daughter. I know how crushing that could be. My wife was murdered during a home invasion burglary many years ago and I used to through the list of things I could of done to prevent it. Finally I had to accept is that each person has their own life journey brought about my choice or fate or Karma or accident. We rarely can intervene to change it. Our only hope is to continue loving that person- dead or alive. I am still in love with my dead wife and certainly your love with your daughter will only grown. Nevertheless I am sorry to hear of her passing and for you pain. May you live long and prosper in memory of her.
Richard

This topic is near and dear to my heart.   At my last 6 month checkup I again had a PSA of Zero but my testosterone was in the 150 range.   My surgeon was concerned and asked all the questions.   Yes I am tired all the time and yes I get sleepy driving and yes my sex life is acceptable if not mundane, blah, blah blah.   We had a long talk about risk and determined that although I had a Gleason of 3+4, my post op PSA was always zero.   With all the new tests out I was a prime candidate to try testosterone treatment. I did this with the acknowledgment that I am old.   I will not be 16 again and I have had major surgery which will never allow me to be absolutely perfect in every way.   I have been on Testim 1% gel since August of 2011.   My first checkup will be in November, so cross your fingers that my PSA stays at ZERO, I will report.   I do not fall asleep at work anymore but I have not seen the energy to jump tall building in a single bound.   Please refer to where I said I was old.   Now before you get crabby about my attitude, I have a bucket list that is pretty ambitious and I will live past my statistic life.   My experience is pretty mild but if the information helps, good. Age 61 at diagnosis PSA Jan 2006 2.8, PSA Jan 2007 3.7, PSA Jan 2008 4.4 DRE Normal, Biopsy positive 1 core in 10, Clinical T1C, Pre surgery Gleason 3+4=7 Bones scan Normal, Cat Scan Normal Da Vinci robotic Surgery April 30, 2008, Fremont Nebraska Post surgery Gleason 3+4=7, Pathological P2C Lymph nodes clear, Margins clear Hospitals stay 2-days, Catheter out 10 days 1-pad a day for 3 weeks Back at work 7-days after surgery, desk job Both Nerves spared Post 42 month PSA-undetectable Testim 1% gel August 2011

OK guys I'm about to ask some very stupid questions.  I have studied this disease for 7 years and I guess I need some enlightening.  Maybe I've been getting an education from reading the wrong books written by some of the finest Oncologist.         "Testosterone theapry".

If a patient has been treated with ADT to reduce the number of PC cells then how does that occur?  Maybe the reduction of T to a casterate level for a period of time???????????  Is not T a food source that counteracts androgen deprivation??????????  Where does it say that ADT is supposed to make one feel good during its treatment??????????  If its that bad then why not just jump straight to Chemo???????????  Reducing the PSA to undetectable for a few months and then instead of watching in order to determine its result, its ok to dose with large amounts of artificial T in order to feel good????????????

Sorry if this offends someone but I have sure wasted one H___ of a lot of time in research if it turns out that T theapry should be used to counteract the effects of ADT.  Someone please enlighten me.......

This will probably get me into trouble but I'm posting it anyway.

 

Art

Thanks for your explanation.  I hope it works well for you.  If it improves your QOL than that is all that should count for you and your family..... 

Msp,
I respect your decision.
It is a hard thing to take a chance like we are doing, but we may also be wasting a lot of quality of life sitting around wondering.
Keep me posted on your progress.
I started my TrT last week with the patches and I am seeing an endocrinologist the 10th of Nov, to see it I can speed things up a little.
Good luck
Art