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Old 01-05-2010, 11:10 AM   #1
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Once again, still so far so good - 15th month , third round, eleventh year, IADT3

I was delighted and relieved to get my 12/24 PSA test result this morning: 0.04, down from 0.05 two months ago (10/28), and continuing the decline to my hoped for target of <0.01. This is an especially important milestone, as the experts in hormonal therapy I've been following for the past decade have used the ability to get the PSA below 0.05 as the key criterion for taking a vacation from the heavy duty drugs (Lupron and Casodex for me), and I've now done that.

Unless that downward course reverses, which seems quite unlikely, I will probably go "off-therapy" after the four month Lupron shot I got on 12/24 wears off in April. I would like to reach a PSA of <0.01, and I may decide to get a one month shot, if I'm not yet at that point in April, which seems likely, to see if I can do that. That would tell me and my doctor that I'm able to get to as low a level as I have the past two cycles.

But even if I cannot get that low, I'm delighted to get my PSA below 0.05. I never would have believed this would be possible when I started on this journey slightly over ten years ago with a challenging case. I'm sure all of my doctors, even the experts I have followed (Myers, Strum, Scholz, Leibowitz, Lam, Tucker), would have considered this success extremely unlikely, even if I stuck closely to their recommendations, which I have done.

I was more concerned than usual with this result as I had lost a grip on the days and my shot and tests were five days overdue, measuring by a strict 28 day month X 4 months =112 days. Still, that's not that bad, and the Lupron would retain some influence during that slight overshoot. Of course the Casodex and finasteride I'm on daily would also help, as well as the dietary/nutrition/supplements, exercise, and stress reduction supportive program. I have been lax about the pomegranate and soy supplements I used to take up to several months ago , but I will resume them shortly. Maybe that will help me get down to <0.01 at the end of this four months shot's effective period.

My main concern is that the impact of three cycles of Lupron totaling (34, 19 and 15+4 months) at least 72 months intermittently over the three on-therapy cycles has the potential to permanently shut down production of testicular testosterone, especially as I'm now 66 years old. I think the risk is reasonably low, especially as I'm taking countermeasures, but it is there. If it happens, I'll probably follow the advice of the experts and take some testosterone supplementation during the off-therapy periods.

I've updated my previous update of 11/19/2009. The updated information is in green, and the rest is in black.



Here's how I have done from the last 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 [previous update] 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....

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
December 24...........PSA---0.04

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 [before simvastatin]. )
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 [In the current Prostate Forum newsletter, Dr. Charles Myers, one of our leading experts in hormonal therapy, said he likes this result to be below 10.]
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.) [In the latest Prostate Forum newsletter, Dr. Myers said he likes to see this value between 60 and 100. I've added an additional 1,000 IU of vitamin D3 per day, and my oncologist and I will be checking how I do with the 25-hydroxy vitamin D test. I once way overshot my target, hitting around 141, near what is called "vitamin D intoxication." I've been more cautious since then!]

October 28 PSA 0.05

December 24 PSA 0.04

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 in my PSA 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 ....

.... 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

Last edited by IADT3since2000; 01-06-2010 at 05:38 AM. Reason: Spelling.

 
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Old 01-05-2010, 03:20 PM   #2
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Re: Once again, still so far so good - 15th month , third round, eleventh year, IADT3

Jim-
Great to hear such continuing good news. You've been such a provider of information on this board and this data can give hope to others with difficult cases, especially if they read your detailed posts. Nice to hear you're looking forward to a break from some of the heavy duty drugs this spring.

 
Old 01-06-2010, 10:32 AM   #3
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Re: Once again, still so far so good - 15th month , third round, eleventh year, IADT3

Hey Jim,
That's terrific news about your latest PSA score.If anyone deserves continued good news about their own case,it surely is you....for all you've learned and then so helpfully shared about prostate cancer.
My posting on 12/12/09 gave all the details about my case and I'll have the latest PSA & testosterone score next week and my first Zometa infusion on 1/20/10. Will be posting again at that time--probably with some questions.
But until then, I just wanted to send some "hurrahs" to you on your good news.
John

 
Old 01-06-2010, 01:31 PM   #4
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Re: Once again, still so far so good - 15th month , third round, eleventh year, IADT3

I would like to raise a toast (heart-healthy red wine, of course) to your successes in managing and overcoming the challenging case which has confronted you, and for your continued successes.

(Jim, you may depart from formal State Department protocol, and imbibe to seal this toast!)

Cheers!

 
Old 01-06-2010, 05:33 PM   #5
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Re: Once again, still so far so good - 15th month , third round, eleventh year, IADT3

Jim:
Let me add my congratulations and accolades to the others. You've been an inspiration and invaluable resource to so many on this website over the years. You've walked the walk as well as talked the talk and overcome almost unbelievable odds and challenges.
Have you or any of your Dr's considered writing up your case history for the urology journals?
It seems to me that the protocals you've followed for 11 years and the extraordinary success should make medical history and add to the treatment options offered to others with your profile.
Again, all the best for another great year and a long and healthy life.
Bob

 
Old 01-07-2010, 04:25 PM   #6
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Re: Once again, still so far so good - 15th month , third round, eleventh year, IADT3

This is great news, and I wish you continued success. It seems that you have a very thoughtful (or at least cooperative) oncologist, willing to do things that not every oncologist would do, or would even know about. If you don't mind sharing this information, who is he (she?). I could imagine some others with advanced p ca wanting to consult with such a doctor.

 
Old 01-08-2010, 09:51 AM   #7
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Re: Once again, still so far so good - 15th month , third round, eleventh year, IADT3

Hi Jim,

So glad to hear of your good news. I can just imagine how happy you are at this time! Let's hope that you achieve your psa goals and that it decides to stay there.

You certainly have helped me out with lots of useful information in the past and I surely appreciate it!

Take care and all the best for you....Lionel

 
Old 01-09-2010, 03:48 PM   #8
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Re: Once again, still so far so good - 15th month , third round, eleventh year, IADT3

You have never seen me post- I am new. I had a RP at the end of September, and my PSA is still at 10. Early December, I found you on here- and you gave my wife and myself much needed comfort, that I will be on a long journey, not a short one. I have begun exercising, now one month into it. I know the Hormones start probably next week. You don't realize the good you are doing. Thank you.

I went here to send the link to a co-worker. Her Dad has been on Hormones for a year and having a real hard time. And I said- look for Jim.

For many others, thanks. And I will post my details in the next few weeks.

 
Old 01-13-2010, 03:15 PM   #9
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Cool Re: Once again, still so far so good - 15th month , third round, eleventh year, IADT3

Thanks to all of you for your kind comments, and especially thanks to our newcomer, Tim E.

Bob (shs50) - I would not object to having my case written up, but fortunately, there are a number of others with cases roughly like mine who are responding well too. Together we are proving that at least some men with multiple high-risk case characteristics can do well long-term on intermittent triple androgen deprivation (hormonal blockade) therapy.

To medved - My doctor is Arthur N. Kales, practicing in Falls Church, VA - a suburb of Washington, DC, near Inova Fairfax Hospital. However, he would be the first to say that he is a general hematologist/oncologist rather than a specialist in prostate cancer. He and I are closely following the lead of doctors with long and deep experience in not only prostate cancer but hormonal therapy, including Dr. Charles "Snuffy" Myers (practicing in Free Union, VA near Charlottesville), Drs. Marck Scholz and Richard Lam (practicing in Marina del Rey, CA in the LA area), Dr. Robert Leibowitz (practicing in Burbank, CA), and Dr. Stephen B. Strum (semi-retired in Ashland, OR, but still practicing I believe).

I got my testosterone result back a couple of days ago from that same 12/24/2009 blood draw. The result was 5, the lowest I've ever been.

Take care all,

Jim

 
Old 01-14-2010, 10:57 AM   #10
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Re: Once again, still so far so good - 15th month , third round, eleventh year, IADT3

That is great news..I wish you continued success. I was wondering if you would mind sharing the type of medications you are currently taking and the regimen? My father currently is on double blockade and his PSA levels have risen dramatically lately. Thanks in advance for your help

scott

 
Old 01-15-2010, 05:57 AM   #11
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Re: Once again, still so far so good - 15th month , third round, eleventh year, IADT3

Hi Scott,

Thanks, for your concern, and I'm sorry that you and your father are experiencing anxious times with that rising PSA. You wrote:


Quote:
Originally Posted by modena35 View Post
... I was wondering if you would mind sharing the type of medications you are currently taking and the regimen? My father currently is on double blockade and his PSA levels have risen dramatically lately. Thanks in advance for your help

scott
My intermittent regimen has been and currently is Lupron, bicalutamide (Casodex) (50 mg for me daily), and finasteride (which is generic Proscar, 10 mg for me daily), with the plan to drop Lupron when it runs its four month course in April and stop Casodex at the same time, while continuing the finasteride as maintenance during the "off-therapy" vacation period. I'm also continuously on a bisphosphonate drug in support, coupled with vitamin D3 and calcium supplementation. Lifestyle tactics, including nutrition, exercise and stress reduction, are also important parts of my program.

That has worked very well for me, but some of us do better with 100 or 150 mg of bicalutamide (or even higher under the guidance of expert doctors, something I had not heard about until recently from Dr. Myers' Prostate Forum newsletter). Also, most men starting a 5-alpha reductase inhibitor drug - finasteride or Avodart - are put on Avodart these days; sometimes they start with finasteride to see if 5 mg or 10 mg will do the job, and then switch to Avodart if the DHT does not drop low enough.

Here's what I've learned as a survivor on hormonal blockade therapy. I have had no enrolled medical education, so this is based on advice from doctors I consider leading experts.

Your dad may have just run into a problem with inadequate delivery of the LHRH-agonist inhibitor, usually Lupron or Zoladex. If it is working as it should, his testosterone level, which definitely should have been tested to see what's up, should be below 20. If that has not been done, it can be done now. Some doctors use below 50 as the threshold of concern, but I'm absolutely convinced that is an obsolete approach. It's possible he is clearing the LHRH-agonist drug too quickly, which can be addressed by shortening the dosing interval. It's possible there was a delivery problem; for instance, with Zoladex, sometimes the little inserted coil slips out.

DHT should also be tested. If it's not very low, that can wreck the attempt at hormonal blockade until corrected. That's where the finasteride or Avodart shine. Many doctors do not understand this or appreciate its significance.

It's also possible that the second drug he's on - I'm guessing it's Casodex - is now fueling the cancer rather than blocking it. That can happen if the cancer mutates in a certain way and is not uncommon. The Prostate Cancer Research Institute (PCRI), a non-profit organization, has excellent information on this.

I wish you and your dad a good outcome with this gut-wrenching situation.

Take care,

Jim

 
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