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Old 04-09-2010, 08:38 PM   #1
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Thumbs up Ready for vacation from triple blockade - mostly good test results, but a concern too

I'm now in my 19th month , third round, eleventh year, of IADT3 (triple intermittent androgen deprivation therapy, aka hormonal blockade), and I got my ultrasensitive PSA result at my appointment this afternoon: 0.04. That's a fine result at this point, especially considering my starting point, but it is 0.01 higher than last time on 3/2/2010 (not reported here), and it persuaded my doctor and me that it would not be worthwhile to have another Lupron shot in order to continue to see if my PSA would drop below 0.01 as it had on my previous two cycles.

It really looks like my PSA has leveled off, and, since it's slightly higher than it was at the end of my previous two cycles, it's possible I've developed a little androgen independent prostate cancer - cancer that cannot be controlled by withdrawing androgens like testosterone and DHT. It's also possible the cancer hit a low point (0.03) and is already headed upward (0.04). It's also possible that the cancer has just mutated and is now using Casodex as fuel, but that seems highly unlikely for me at this point in view of the PSA pattern. On the other hand, the increase from the March result could be due just to day-to-day variation or lab testing variation. It could be due mainly to rounding (such as a "true" result of 0.034 rounded to 0.03 in March and a "true" result of 0.035 rounded to 0.04 in April, or something close to that. Not being able to reach <0.01 might be due in part to the fact that my lab is now using a Roche ECLIA ultrasensitive test instead of the Immulite 3rd Generation ultrasensitive test used the previous times. But the bottom line is that it now makes sense for me to take a vacation from the heavy duty drugs - the Lupron and the Casodex.

I'm greatly pleased that my DEXA bone mineral density scan showed that I was back in the normal range - no longer classified as having osteopenia. That's a real accomplishment after a year and a half of hormonal blockade involving Lupron. I credit this success to Boniva, calcium and vitamin D supplements, and regular strength exercise. I'm going to take a vacation from Boniva too.

----------------------------------------------------------------
I'm delighted that my PSA has more or less plateaued 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.


My main concern is that the impact of three cycles of Lupron totaling (34, 19 and 19 months) 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 from January in this fresh thread. 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.

JUST PSAs
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
March 2, 2009.........PSA---0.03
April 2, 2009...........PSA---0.04



ALL SIGNIFICANT TESTS
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

March 2, 2010 PSA 0.03
Vitamin D 54

March 25 DEXA: "Normal", improved from osteopenia, remarkable after 19 months of hormonal blockade therapy

April 2,2010 PSA 0.04 Vitamin D 62 (I had increased the dose of Vitamin D3 by 1000 IU; would like to get the 25-hydroxy vitamin D level in the 80 to 100 range.)



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 was to stay on blockade for at least a year (done)and to get that PSA below 0.05 (done), 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 (not going to happen). (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. )

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

 
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Old 04-10-2010, 10:54 AM   #2
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Re: Ready for vacation from triple blockade - mostly good test results, but a concern

Pretty impressive results. Would not surprise me if the increase from .03 to .04 was attributable to change in assay. Of course, there's no way to know that for sure. Did you consider staying with the same assay? (I guess in your case that would have required a change in lab). My most recent psa test was done with Roche ECLIA, and when I saw that I asked that it be re-tested using Beckman-Coulter, which I have used in the past -- just for consistency; there was a modest difference between the two. How much Vit D3 do you take to achieve those very good results? Also have you found a reliable brand? Dr. Meyers recently stated that some brands seem unreliable, and maybe dont even contain Vit D. So I am in search of a very reliable brand. Ideas? Thanks. I wish you continued strength and success.

 
Old 04-10-2010, 05:40 PM   #3
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Re: Ready for vacation from triple blockade - mostly good test results, but a concern

When Dr Myers put me on Vit D, < edited > my dose is 7000IU's and my last blood test was 63.

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Old 04-24-2010, 04:05 PM   #4
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Re: Ready for vacation from triple blockade - mostly good test results, but a concern

Hi Medved, ziggymonster too, and fellow board participants,

I'm just getting back to the board from a heavy duty dose of cancer information, which I'll explain in another post. In brief, I returned a couple of days ago from representing cancer survivors at an international annual conference - this year in Washington, DC - held by the American Association for Cancer Research. I had applied and was accepted as one of thirty nine survivor/advocate representatives among the 17,800 researchers and physicians who attended over the five days of the event. It was intense, including preparation, but immensely rewarding. Like me, most of the survivor participants had no professional medical background or enrolled medical education. The idea was to learn what's going on in cancer research so we could pass that on to our communities, and to pass on our perspectives to the researchers. It's the third time I've participated in the program.

But back to this thread. Both the .03 and more recent .04 PSA results were with Roche ECLIA technology. My oncologist and I think that most likely the slight increase of .01 represents a day-to-day or lab variation in testing, but my next test in a couple of months will provide an indicator whether my PSA was already starting to go up. Of course I have my fingers crossed on that issue, but I'm confident. I've had only the Roche ECLIA assays for many months now, ever since the lab we use switched away from the Immulite Third Generation assay a couple of years ago. (I don't know the reason for the switch.)

It's possible that, for me, .03 or so on the Roche assay is equivalent to the ealier scores of <.01 I was able to achieve on the Immulite assay, but I suspect not. I suspect that, for whatever reason, my nadir (low-point) PSA is now in the .03 to .04 range. The most likely reason is that I've developed a little androgen independent prostate cancer. I would like that not to be the case, but if it is, I'm confident that I can move to a second line of defense (such as ketoconazole - with hydrocortisone -instead of Casodex, along with Lupron and finasteride), again bringing the cancer under control, including any part that is androgen independent prostate cancer. I've known at least two fellow survivors who continue to have good success on following rounds of intermittent androgen deprivation therapy despite not being able to drive their PSAs to <0.01.

(By the way, I had attended the National Conference on Prostate Cancer 2010 held in Los Angeles last year, and I submitted a question to Dr. Myers about how you could tell if your cancer was becoming androgen independent despite a good response on androgen deprivation (aka "hormonal" therapy). He responded that one clue was whether or not you could drive the PSA to <0.01.)


Medved, you asked:
Quote:
Originally Posted by medved View Post
... How much Vit D3 do you take to achieve those very good results? Also have you found a reliable brand? Dr. Meyers recently stated that some brands seem unreliable, and maybe dont even contain Vit D. So I am in search of a very reliable brand. Ideas? Thanks. I wish you continued strength and success.
First, I want to thank you for your support; it helps keep that goal of controling cancer and feeling good shining brightly. Just to give you a taste of the AACR meeting, several of us with more challenging cases in our survivor group joked about how our banner should be "Race for the Chronic" instead of "Race for the Cure." I suppose you have to be a survivor to appreciate that kind of humor.

About a month ago I increased my vitamin D3 slightly as my 25-hydroxy vitamin D score was 54 - in the good range of 50 to 100, but not in the 80 to 100 range where I want to be. I'm now taking about 5,600 IU of vitamin D3 a day, up from about 4,600; my latest test, on April 2, already showed an increase, up to 62. The important point here is that each of us is to achieve our vitamin D target if we get tested. It's fairly unlikely that we will get too high a dose, but I know it's possible as I did it; many of us are likely to be too low if we don't get tested.

It was back in the early days of testing for vitamin D. In fact, I was the first patient tested in my oncologist's practice. We were using a test version that is fine for showing you can metabolize the vitamin, but that test was not the right one for monitoring the level. When we realized that and switched tests, my level was 141! That's very near the level considered "vitamin D intoxication," and the most worrisome consequence is a risk for excessive calcium absorption. We tested for the calcium level and I was okay, but I knocked off all supplements of vitamin D and got my level down into the desirable range. It turns out that the herring I eat daily at lunch, plus 4,000 to 5,000 IU of fish oil daily, plus several servings of fish each week at dinner, plus about 5,000 IU of supplements daily, plus some sun exposure were putting me at too high a level.

An important point is that each of us is different in our ability to make vitamin D out of the foods we eat and the sun to which we are exposed at different seasons of the year. It's very important to get periodic tests so we can adjust our dosing, with a high likelihood of needing more supplemental vitamin D during the cold weather months. Vitamin D deficiency is apparently epidemic among new prostate cancer patients, and some men are so low that they need the 50,000 IU pill that has been approved by the FDA! On the other hand, a youngish person (say 40s) who is outdoors a lot without sunscreen (keep it to 15-20 minutes say the skin doctors) in the warmer months might not need to supplement at all. Skin color makes a huge difference too.

Dr. Myers tests all of his patients regularly for vitamin D3, and he has found that the Life Extension Foundation brand, which is actually manufactured by Hoffman LaRoche, is the most reliable, with a surprising number of other brands not being reliable. That's the one I use. I've also heard that Carlson's (or Carlsen's is good), and some of the research studies have used other brands. The acid test is whether taking a certain brand works for you, as demonstrated with the 25-hydroxy vitamin D test.

Sometimes I'm in awe of just how far our technology has come just since I was diagnosed in late 1999, and vitamin D is one of those areas.

Take care,

Jim

 
Old 04-28-2010, 03:49 PM   #5
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Re: Ready for vacation from triple blockade - mostly good test results, but a concern

Hi Jim,

It's nice to see that you are hanging in there and doing okay. I hope I can say the same thing for myself in the future.

Everyone on this board needs to read your posts, especially for anyone on hormone therapy, because your post are thorough and obviously you have done much research on the subject.

I go next month for the results of my most recent psa test ( today actually ) and find out if I'm good for another six months or whether or not I start hormone therapy ( something I'm not keen about ). I know that with a Gleason 8 cancer, it's only a matter of time before that's a reality.

So until that time, when I will most likey have a million questions to ask of you ( since I consider you the expert here on hormone therapy), I with you the very best and have a great day.

Lionel

 
Old 04-29-2010, 10:07 AM   #6
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Re: Ready for vacation from triple blockade - mostly good test results, but a concern

Jim,having failed both surgery and salvage radiation, and now having been on a triple blockage for 10 months, I am inspired by your story and your knowledge. My lab only reads down to 0.05 . Fortunately my last PSA in Feb was <0.05. I will be testing in late May again ..... assuming it stays at that low level,then in late June come off the heavy drugs and stay on Avodart. Keep up the good fight, you make difference.
T

 
Old 04-30-2010, 03:27 PM   #7
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Re: Ready for vacation from triple blockade - mostly good test results, but a concern

Hi ziggymonster (T),

I'm delighted to provide some inspiration!

I'm glad you too are doing well on triple therapy and are looking forward to the vacation from the heavy duty drugs.

Have you requested a different lab, one with a test that will go down to <0.01 as the lower limit? That would be wise in my layman's opinion, as it would give an indication whether there is any androgen independent prostate cancer, and determining the true lower limit would give you a bench mark for comparing subsequent cycles on the full combination of drugs.

I was the first patient in my oncologist's large multi-doctor practice to have the more precise ultrasensitive test, and it took a couple of false starts before the staff got used to the ordering and special (but not uncommon) procedure to protect the sample for shipment. My samples are shipped out of state to a lab in North Carolina.
The initial trouble was worth it, and my testing is now fairly smooth. However, I always check to make sure the technician understands that I'm getting the out-of-state version of the ultrasensitive test and knows how to label and prepare the vials. Several times I've averted a problem.

Even if you do get the more precise test but a result that is higher than <0.01, as I understand it, it is still reasonable to go on the vacation if your level is where it is now, that is, <0.05. I'm thinking the odds are that you will now be toward the bottom end if not <0.01.

Take care and good luck,

Jim

 
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