Again, still so far so good - 14th month , third round, tenth year, IADT3

[IADT3since2000]

Here's how I have done from the time I decided to resume full therapy. (This updates and includes some of the same information from my thread started 3/27/09, "Still so far so good - 3rd PSA test (6 months) third round, tenth year IADT3.)" My earliest thread on this board about my case was "Eighth year anniversary as a survivor - challenging case, today", started back on 12/7/2007. I'm happy and grateful that my PSA continued to fall to 0.05 as of the test on October 28, 2009. However, the rate of decline slowed somewhat, and, while confident of reaching my goal of <0.01, I have some concerns. I'm putting new information in green, starting with just the PSA results for my whole current (third) "on-therapy" period, then with those results in the context of other results.

September 3, 2008 PSA 9.53 (Last test before returning to triple therapy)
November 2008......PSA---2.27
January 16, 2009....PSA---0.86
March 18, 2009.......PSA---0.46
May 4, 2009............PSA---0.28
July 2.....................PSA---0.15
August 28...............PSA---0.07
October 28..............PSA---0.05

September 3, 2008 PSA 9.53 (testosterone 631)

Decided to end vacation from major drugs and go back on triple hormonal blockade (continuing finasteride, 2 X 5 mg daily on vacation and on full therapy).

September 17 - last thalidomide, used to prolong vacation

September 18 - first Casodex, 50 mg

September 26 - first Lupron shot (getting four month shots)

November 2008 PSA 2.27

January 16, 2009 PSA .86

March 18, 2009 PSA .46
March 18, 2009 28 testosterone (too high)
March 18, 2009 75 vitamin D (nice!)

May 4, 2009 PSA .28
May 4, 2009 DHT <3 (That's fine - the lower limit of the test.)

July 2 PSA 0.15
July 2 DHT <3

Cholesterol results are important for hormonal therapy patients too, and I was reassured by these fine results from my internal medicine doctor that my countermeasures were doing the job:

July 6 Total Cholesterol 198 (Once was in the 250s. )
July 6 HDL 87 (My internal medicine doc was clearly awed by this one! )
July 6 Ratio 2.3
July 6 LDL 101
July 6 Trigs 49

August 28 PSA 0.07
August 28 Testosterone <10 (Goal: <20; so that's fine.)
August 28 DHT <3
August 28 25 hydroxy vitamin D: 53 (Would like it higher; but it's toward the lower end of the acceptable range of 50 - 80, or even 100, recommended as ideal for us by the experts I trust.)

October 28 PSA 0.05

My triple hormonal blockade consists of Lupron (four month shot for me, = 30 mg), Casodex (50 mg/day for me), and finasteride (2 X 5 mg/day). Intermittent triple hormonal blockade is also known as Intermittent Androgen Deprivation Therapy 3; it's abbreviated as IADT3.

This is following up on the thread I started on January 22, 2009 entitled "So far so good, 2nd PSA, third round, tenth year IADT3," and a previous thread, November 27, 2008, entitled "So far so good - first PSA, third round/ninth year IADT." (I'm also on Boniva for bone density, simvastatin to lower the risk of lethal prostate cancer plus heart health benefit, and a supportive program of diet/nutrition/supplements, exercise, and stress reduction.)

My goal is to stay on blockade for at least a year and to get that PSA below 0.05, but based on what Dr. Charles "Snuffy" Myers has been saying and writing lately, I would really like to see the PSA again drop to below 0.01. (I think that 0.05 goal was established when we lacked ultrasensitive PSA tests that could reliably report PSA to as low as less than (<) 0.01.) Unlike many patients who get below 0.05 within a few months on triple blockade, it has taken me many months on the two previous cycles. But my PSA has declined to below 0.05 twice before (in fact, to <0.01 twice before), and that's most important. The unusually long time to get there is not surprising considering my highly challenging case.

...

I'm still really happy that IADT3 is still working for me at this time. Quite a few men run into a hitch at this point - around ten to eleven years, and have to switch to another line of defense. Our fellow prostate cancer survivor and highly respected medical oncologist Dr. Charles "Snuffy" Myers, MD, said recently again that the patients he knows who are doing very well despite challenging cases are the ones who are diligent about their supportive care, including diet/nutrition/supplements, exercise, and stress reduction; I'm in that group. (Many of the men in his practice, which is specialized in prostate cancer, have challenging cases, and he also repeated this year that most of these men who die earlier than other men with similar challenging circumstances are men who ignore supportive care lessons, eating whatever they want, being careless about exercise, and so on. ) ...

However, the previous rate of decline was 50% every two months, and that would have put my October 28 score at 0.035, rounded to 0.04, instead of 0.05. I'm not too concerned because my PSA is still apparently declining, and with day-to-day variation, slight lab variation, plus rounding of this and earlier scores (possibly a true 0.074 rounded to .07 last time and possibly a true 0.04.5 rounded to 0.05 this time, I may be right on a smooth flight path to <0.01. Of course, it's possible that I've now stabilized at 0.05 due to some cancer that no longer responds to hormonal blockade, and it's possible my PSA has already hit bottom during the past two months and is now climbing ; I doubt those scenarios, but I know they are there.

Here's hoping for encouraging results toward the end of January. I would like to see 0.03 at most, but I will be satisfied with 0.04. All this said, I'm extremely grateful that I'm responding well to intermittent androgen deprivation therapy at virtually the ten year point since my diagnosis in December 1999. Back then I talked to several of the experts in hormonal blockade, and even they were doubtful that I would enjoy prolonged success. Now in 2009, quite a number of their patients with extra challenging cases similar to mine are also doing extraordinarily well, and all that I know in that group are diligent about supportive care (nutrition, exercise, etc.). Many of us are also spiritual and active church members who pray and invite prayer support. We don't talk about that much on the board, but I'm convinced that spiritual life and support also is key.

Good luck to all of us as we cope with this disease,

Jim

[medved]

First, you deserve all of the success that you have had with your treatment, for the enormous contribution that you make on this board -- I am absolutely certain that you have saved lives.

Second, a couple of questions (just so I can learn more): First, why do you take 4 month Lupron shots rather than one month? I recall reading some time ago a suggestion that one month might be preferable because the Lurpon dose could "wear off" toward the end of the relevant period, and that is less likely with a shorter time period (and perhaps more frequent T level testing). Second, how did you decide which statin to use? A doc friend of mine said he has a "slight preference" for Lipitor, since it has been more thoroughly studied than others (though he added that, in his view, its not a big deal either way). Third -- and if you would prefer not to answer this question for any reason that is perfectly understandable -- who is your oncologist? The reason I ask it it seems he (she?) is up to speed, or at least willing to become up to speed, and do things that some less well informed docs might not (including thalidomide). All the best, Medved

[kcon]

Philippians 4:6-7

Written by Paul to the people of Philippi as he sat, chained in Roman prison facing a very uncertain future...

[JB71]

Jim;

your detailed postings continue to be, as in, me seeing the
light at the end of that tunnel. I have not seen the insides
of a gym for some 30 years but because of you,
I have an appointment next week with a personal trainer
who has develloped a 'strenght/bone density/fight
osteporosis' program. There is this saying: "If I had
known I was going to live this long, I would have taken
better care of my body." Maybe now is the time to play catch-up.

My mind may be ready for the surgery but my body is not
yet but soon will be. Now I need to have a second look
at my diet. Steak barbeques and cocktail hours are now
a no no. Having spend the last 35 summers on our sailboat
was pretty well a non-stop party. I am going to miss that.

[sjohnp]

Hello Jim,
Good luck with your third round of treatment. I have been following the details of your case because I face the potential of hormone treatment. Unfortunately, I had recurrence from RRP surgery after 21 months

I just completed salvage radiation, and the 6 month PSA was .56 by the Roche assay and .3 by the Bayer assay method. The Urologist/Oncologist wants to use the lower value and wait another 4 months for another reading. That is OK with me. However, the lab that I use (Quest) does not perform the sensitive PSA test (two decimal places). I prefer to use the more sensitive test if I undergo hormone therapy to monitor PSA as you have.

I would like to know the name of the PSA assay method that your lab uses and what lab do you use to get this degree of accuracy (<.05)?