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Old 11-19-2009, 04:02 PM   #1
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Smile Again, still so far so good - 14th month , third round, tenth year, IADT3

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

 
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Old 11-19-2009, 06:45 PM   #2
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Re: Again, still so far so good - 14th month , third round, tenth year, IADT3

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

 
Old 11-23-2009, 03:47 PM   #3
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Re: Again, still so far so good - 14th month , third round, tenth year, IADT3

Hi medved,

Thank you so much for your kind words in post #2.


Quote:
Originally Posted by medved View Post
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.

As I'm sure you know yourself, this encouragement helps keep us motivated!

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).

I was on one month shots at the beginning back in 2000, and I'm convinced that's the better course for those just starting hormonal blockade. A small percentage of us, somewhat under 10% I believe, will clear the Lupron, Zoladex or other LHRH-agonist type drug unusually soon and will be underprotected toward the end of the anticipated dosing period, and some will unfortunately have out-of-date, improperly stored, or improperly injected drugs, and a multi-month shot may tend to cause complacency by doctors who should be monitoring how we are doing. I've heard from experts that about 10% of us will be underdosed because of these various causes, counting both faster drug clearance and faulty delivery. If a one month shot is given, meaning 28 days ideally, then the testosterone (or other key enzymes like LH or LHRH, as I recall) can be checked toward the end of the period, and corrections can be made if needed, such as decreasing the dosing interval. My doctors have monitored me closely, and things have gone well.

However, when you are doing fine with the one month shot, the three or four month versions (3X28 days or 4X28 days) can be tried, with testing near the end of the period to ensure the shot is doing its job throughout the period. I'm doing that now. However, as I target (hopefully) going off therapy in the coming months, I may switch to a three month shot, a pair of one month shots, or a one month shot to hit that target at the end.



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).

From what I've seen, there's not a substantial difference for most of us. Key considerations would be (1) does a certain statin work for us, (2) does it have a good side effect profile for us, and, perhaps, (3) is it inexpensive. My internal medicine doctor and I discussed the choice, deciding we would start with the lowest dose of an the inexpensive but well-studied statin simvastatin. It has worked very well for me. Talk about cheap: my insurer pays 20c per pill for me, and my copay for a three month supply is either nothing or $10.

Third -- and if you would prefer not to answer this question for any reason that is perfectly understandable -- who is your oncologist?

He is Dr. Arthur N. Kales, a general medical hematologist/oncologist practicing in Falls Church/Fairfax, Virginia.

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).

He has some important characteristics that we want in our doctors: he's talented, he's experienced, he's observant, he's confident but also open-minded, he communicates well, and he's compassionate. He would be the first to admit that he is not a specialist in prostate cancer, but he is open to ideas and information from those who are leading specialists. The use of low-dose thalidomide to extend off-therapy periods is a good example of his willingness to try a new approach, watching carefully to see if it is working as expected.

All the best, Medved
Take care,

Jim

 
Old 11-23-2009, 03:51 PM   #4
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Re: Again, still so far so good - 14th month , third round, tenth year, IADT3

Quote:
Originally Posted by kcon View Post
Philippians 4:6-7

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

Thanks for your thought!

Jim

 
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