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Old 01-23-2011, 08:04 AM   #1
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Just diagnosed with pc. Psa 245 with one bone met spot.

New to board. Just diagnosed with pc. Psa 245 with one bone met spot. Started HT in oct. Monthly psa reading drop to 12, .44 with latest .19
Urologist continued with Zolodex shot (first shot was Lupron) and 50mg casodex. He hopes to see further drop in psa.

I welcome comments and advice on my case.

 
Old 01-23-2011, 02:23 PM   #2
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

Hi Lklklo
Your PSA results are extraordinary. The drugs seem to be doing its job. It surprises me that your doctor has changed the original drugs. Any reason for that?
Many guys in this forum will surely comment on your case but it would be better you post some other data related to your case; Age, biopsies, DRE, clinical stage, symptoms, etc., if any.
Wishing you the best.
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Old 01-23-2011, 10:34 PM   #3
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

T4 with neighbouring lymph nodes affected and one bone spot (undetectable in bone scan and X-ray but suspected via MRI. One out of 10 cores showing 30%. Apparently, tumour located deep in capsule near bladder which according to urologist explains why the bone mets is not widespread given the PSA reading.

I too do not quite understanding why the drug switch except that he said zoladex is a more recent drug. He hopes to see further drop and depending on the next reading he may put me on monohormone therapy. He is pretty pleased with the results too.

Judging from the little i ve read, am concerned about the refractory issue looming ahead

 
Old 01-24-2011, 01:42 AM   #4
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

Hi Baptista

Thanks for your quick reply.

I should also add that I am 60 y.o. and the Gleason score is 3+3 = 6 which is about the only good news in the bundle of bad vibes coming my way these last few months. Notwithstanding I remain optimistic of life. I am onto promegranate juice, daily exercise of 5km brisk walks, non-dairy no-meat diet from mid-oct. I do what I can the rest I leave to the doctors and God.

 
Old 01-24-2011, 08:52 AM   #5
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

Quote:
Originally Posted by Lklklo View Post
Hi Baptista

Thanks for your quick reply.

I should also add that I am 60 y.o. and the Gleason score is 3+3 = 6 which is about the only good news in the bundle of bad vibes coming my way these last few months. Notwithstanding I remain optimistic of life. I am onto promegranate juice, daily exercise of 5km brisk walks, non-dairy no-meat diet from mid-oct. I do what I can the rest I leave to the doctors and God.
Lklklo

You have no reason of not being optimistic. Your Gleason of 6 classifies your cancer in the well to mid differentiated “category” which is theoretically slow in growth.
The metastasis to the bone if confirmed sets you in the high risk group of patients, were treatment options like; HT, chemo, estrogens or immunotherapy, or a combination of them, are known to be very effective in controlling the advance of the cancer by keeping it “at bay”.

Your doctor may have changed drugs because HT drugs are metabolized differently in different patients. The agonists Zoladex and Lupron work similarly as they mimic normal Luteinizing hormones (LHRH) and fills the receptors of the pituitary gland that receive usually body manufactured LHRH. These drugs are made from different active ingredients (Zoladex=goserelin acetate and Lupron=leuprolide acetate) and they can be changed when patients are not doing well because of nasty symptoms or because the drug is not doing its “job” properly.

I read reports from guys that have changed drugs or that have added other drugs to the “cocktail” (antiandrogens plus 5-alfa redutase inhibitors) and were successful in driving down the PSA level.
In this forum there is one guy with the acronym IADT3since2000 which is a successful case of HT for the past eleven years. He had a high PSA at diagnosis and managed to keep the cancer “at bay” with hormone therapy as is prime treatment. You can click on his name in a post here under and read about his experience.

If your cancer does not respond to the new set of drugs, your cancer may have become refractory, as you comment. To confirm that, through a blood test, your testosterone level should be lower than 50 ng/ml and your PSA should be increasing. Hormone-refractory prostate cancer (HRPC) patients are required to withdraw from the hormonal drugs. That will lower immediately the PSA for a period of time. This is a status known as Anti-Androgen Withdrawal Response. AAWR patients have a choice of treatments of the so called “second line” hormonal therapy which incorporates Ketoconazole or an estrogen (DES) with immunologic therapy drugs or with chemo drugs.

I would suggest you use the time while waiting for the results from your new set of drugs, to do some tests to check any other health problem (ECG, BCG, Lipids, ALT, AST, etc.) that could interfere with the possibility of a “second line” hormonal treatment, because all drugs to treat advanced cases have side effects and are restricted in certain risky patients and restricted to be taken with certain medications.

Two good informative books for cases like yours which I recommend you to read are; "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. C. Myers, and "A Primer on Prostate Cancer - The Empowered Patient's Guide” by Dr. S. Strum & D. Pogliano
You can also read about AAWR by googling this sentence “Hormone-Refractory Prostate cancer A Continuum of Diseases”.

Hope this information helps in your quest.
Baptista

 
Old 01-24-2011, 07:40 PM   #6
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

Hi Lklklo,

Welcome to the Board! I'm sorry you had to pay such a steep initiation fee with that PSA and the suspected metastasis. Baptista has already covered a lot of key points, and I'll add some points in green to what you wrote in post #3.


Quote:
Originally Posted by Lklklo View Post
...
I too do not quite understanding why the drug switch except that he said zoladex is a more recent drug.
I have been on intermittent triple blocade but with Lupron instead of Zoladex. I've always heard they were equally effective, but in the US my impression is that Zoladex is now less expensive. You could ask the doctor why he switched. It might have been simply a supply matter.

Quote:
He hopes to see further drop and depending on the next reading he may put me on monohormone therapy. He is pretty pleased with the results too.
Yes, that's a wonderful plunge downward in PSA! However, the experts in hormonal therapy that I've been following for 11 years would not want to do switch to monotherapy! Instead, they would be very serious about wanting to get that PSA at least to <0.05 using an ultrasensitive PSA test, ideally one sensitive to <0.01. They would use not only an LHRH-agonist drug (Lupron, Zoladex, other choices) but also bicalutamide (Casodex) plus a 5-alpha reductase inhibitor, finasteride or Avodart. They would use all three now and not wait. If that PSA stopped falling short of the goal, they would probably add other therapy, such as Leukine.

Knowing that the therapy was likely to lead to a decrease in your bone mineral density (since testosterone can no longer help make the bone), they would want you on a bisphosphonate drug plus a calcium and vitamin D3 supplement that is required while on the drug.

They would be doing periodic testosterone and DHT tests to make sure those were in the desired range. They would not be satisfied if the testosterone was above around 20, rather than 50. (Many other non-specialist docs who are not leading experts are satisfied with getting the testosterone down to 50 or less, but opinion is changing to recognize that <20 is much better.

I got my PSA down from 113.6 to <0.01, and I went off therapy (off Lupron and Casodex, continued finasteride and Fosamax for 34 months). I went back on therapy for 19 months, then off after again reaching <0.01 for about that long. I was back on for 19 months and have now been off for nearing 10 months. (Lupron should go generic in 2013. Casodex is now generic as bicalutamide. Proscar is generic as finasteride. Fosamax is now generic as alendronate.

Dr. Stephen Tucker, MD, is a medical oncologist who is especially expert in hormonal therapy, including triple blockade, and he is now practicing in Singapore.


Quote:
Judging from the little i ve read, am concerned about the refractory issue looming ahead
That is a real issue, happening to almost all of us in time. However, under triple blockade, it seems to be much delayed for many, even for some of us with quite advanced cases. Many of us do fine for around 10 to 11 years, with some of us cruising for many years beyond that point. Meanwhile, treatments keep improving, and more options open up.

Good luck and please keep asking questions.

Take care,

Jim

 
Old 01-26-2011, 03:36 AM   #7
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

Jim

Thanks for weighing in on our discussion.

I have read your case and am comforted by your amazing fight against this silent killer. One moment I thought I was in the pink of health (no pain, no discernable symptoms) the next I was staring down the abyss of despair and hopelessness. Both you and Baptista are doing a great job providing useful info to the newbies who in most cases like me are still recovering from the devastating reality. We need to hear from the guys " on the return journey". Keep the information flowing!

I wish to keep this short so let me just shoot a few quick questions troubling me.

1. Is it possible for the Gleason score to migrate to a higher or lower level over time?

2. What is the prognosis for those with PC with metastasis? I can't seem to find many messages from those with such challenging cases who survive over
the 10 yr mark?

3 My doctor seem to suggest that I should not for my case take a vacation from HT at any time. Is this consistent with the view that PC with metastasis should not be left free to spread?

4. I know you are a strong proponent of triple HT but is there a danger of using up all your weaponry upfront and coming up short later. Isn't better to use what works first and keeping some weapons ready for the next onslaught. Sorry, just some layman's logic.

Thanks again and keep up the good work!

Lklklo

 
Old 01-26-2011, 11:22 AM   #8
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

Lklklo

I hope Jim will answer your questions. Here are my views regarding the issues. You can add them to Jim’s detailed explanation.

(1) As far as I know from Dr. Myers presentation of 2008 about prostate stem cells, the Gleason pattern of metastasized cancerous cells (stem) do not change but cancer cells become more aggressive due to the drug-cocktails they are subjected to along the treatment. Meaning that they become resistant to the treatment.
In a paper from AUA (2008), however, there is an article under the name “Change in Prostate Cancer Grade Over Time in Men Followed Expectantly for Stage T1c Disease”, mentioning that some patients have shown biopsies with more aggressive grade.

(2) There are some studies targeting periods over 20 years, but they include patients from the years pre-PSA when treatments were rather “primitive”. It is therefore difficult to take them as comparison. JH have some studies in their site and the European Urology has published a German study where they have followed patients during 22 years, A Swedish 20 years study is still running. You can try to google their abstracts.
NCCN Guidelines "Prostate Cancer" V.3.2010) publish the protocols followed by most professionals around the world as the standard care for prostate cancer. These standards are based on 5 and 10-years statistics, but they are reliable.

(3) The “continuous” modality in hormonal treatment is the protocol of the majority of doctors. I think that they follow the guide lines of NCCN above. However, there is a group of oncologists specialized in prostate cancer that includes famous people like Dr. Myers, Dr. Scholz, Dr. Strum, Dr. Lam, etc. who are the pioneers of modern HT modalities such as; the intermittent and triple blockade. Their protocols are proved to be reliable but not accepted as world standards.

(4) This is also a matter of controversy. Nevertheless, I notice in Dr. Myers comment during his presentation of 2008 saying that he recommends lowering DHT on his patients (triple blockade) because DHT promotes the “fabrication” of new blood vessels in metastasized cancer. Surely, if his comment is a fact, then 5-ARI drugs are not secondary weapons but prime.

I notice you are from Singapore. I was attended several times there at Johns Hopkins local Hospital.

Wishing that my insights help in your quest.
Baptista

 
Old 01-26-2011, 06:18 PM   #9
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

Lklklo,

Hi from Taiwan! Like Jim, I want to encourage you to check out Dr. Steven Tucker in Singapore. Wonderful doctor, and especially focused on treating advanced prostate cancer. I tried the Taiwan route, but the treatment approach was pretty limited. Got in contact with Dr. Tucker, made a trip to Singapore, and got tremendous reassurance (and hope) with his plan for treatment. If you need any contact information, please let me know and I'll get it to you.

Blessings!

Gregg

 
Old 01-28-2011, 08:54 AM   #10
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

Hi Lklklo,

I'm responding to your post #7 (6:36 PM a couple of days ago. (Before we lost power for 18 hours; we were on the luckier side regarding power loss - not as bad as for many, but it did get cold inside.) Baptista has provided key information, so I'll be working off that regarding your questions. Also, I'm delighted that Gregg has responded about his own experience with Dr. Tucker. I'll add thoughts in green.


Quote:
Originally Posted by Lklklo View Post
Jim

Thanks for weighing in on our discussion.
You're welcome. We are here to help and learn from each other.

Quote:
I have read your case and am comforted by your amazing fight against this silent killer. One moment I thought I was in the pink of health (no pain, no discernable symptoms) the next I was staring down the abyss of despair and hopelessness.
I too thought I was in great health. However, I was way overdue for a physical exam at age 56 back in 1999, and I had never had a PSA. I was training for racewalking, trying to bring my time for a mile down from around 10 minutes 15 seconds to the 9 minutes 30 seconds I had achieved in earlier years. That's really fast for my age. Despite regular training, I was not succeeding. Also, one time after hydrating with several glasses of water before the racewalk workout, I experienced a terrific urgency when I arrived at the track and experienced great relief that the portable toilet was not locked. These circumstances persuaded me to get that physical, and I insisted on a PSA. However, like you, I was expecting a clean bill of health. I was shocked at my high PSA, 113.6 (as was the embarrassed doctor). I then commenced the early part of the journey that you are now embarked on.

Quote:
Both you and Baptista are doing a great job providing useful info to the newbies who in most cases like me are still recovering from the devastating reality. We need to hear from the guys " on the return journey". Keep the information flowing!
I hope you will someday soon be in the same place and will be able to help others. It meant a lot to me when I heard a fellow survivor with a challenging case ask questions and make comments at one of the first education and support group meetings I attended. The speaker was a medical oncologist who treated some prostate cancer patients, but it was clear that the survivor knew much more about some of the advances in treatment than the speaker. I'm trying to pay-it-forward for the great benefits I've experienced from fellow survivors and dedicated physicians.

Quote:
I wish to keep this short so let me just shoot a few quick questions troubling me.

1. Is it possible for the Gleason score to migrate to a higher or lower level over time?
The cancer cells do not seem to become less aggressive (lower Gleason), but, in addition to the process Baptista mentioned, they can occasionally become more aggressive (higher Gleason) due to mutations. That's one of the reasons a lot of us believe that antioxidants in diet and supplements are important; antioxidants appear to give some protection against additional mutations.

Regarding prostate cancer cells becoming resistant to treatment, I view it more as a case of the treatments wiping out the cells not capable of resistance, on the one hand, leaving resistant capable cells to gradually grow and become dominant in the cancer cell population. On the other hand, sometimes cells mutate and can even mutate in a way that enables them to use the cancer medication as fuel. For hormonal therapy, this does not seem to happen with the LHRH-agonists (Lupron, Zoladex, etc.), or the 5-alpha reductase inhibitors (finasteride or Avodart), but it certainly can happen with the antiandrogen class (Casodex/bicalutamide, flutamide, nilutamide).


Quote:
2. What is the prognosis for those with PC with metastasis? I can't seem to find many messages from those with such challenging cases who survive over
the 10 yr mark?
Here are some key points to bear in mind about prognoses for such patients, or any prostate cancer patients. Baptista makes a critical point that prognosis is based on research, and research, by its nature, has to be based on past events. With progress in prostate cancer advancing so rapidly, you and all of us need to be skeptical about predictions.

I saw two highly respected prostate cancer doctors from highly respected institutions in early 2000 (City of Hope in Duarte, CA, near LA) and Johns Hopkins in Baltimore. Both were reluctant to predict (which was wise), but the best they could give me, when I said I really needed to know for planning, was three good years plus two declining years. For months I accepted that as my likely fate, and I was not fully free from that forecast for several years, when I was doing very well on intermittent hormonal therapy. That makes another key point: doctors are often minimally aware of major positive developments outside their own specialties. I believe that is especially true for surgeons, and I feel the justifiably revered surgeon Patrick Walsh is not immune. (He is rather ignorant of advanced hormonal blockade.)

Even the leading, pioneering, expert doctors in hormonal therapy were skeptical of my chances when I talked to them and heard them present in late 2000; they had recently seen wonderful results for triple blockade, but they were not at all sure that many of us with rather challenging cases would do well, as I have. That makes the third point that even the experts in a therapy strategy do not have a basis for high confidence before an approach has a demonstrated track record with a certain kind of patient. I believe that's where your kind of prostate cancer is now; medical oncologist experts are becoming more confident that there can good and long-term results for men with metastatic cancer, especially if it is limited, but they are not yet sure how good and how widespread the results will be.

Here are some data points to frame your thinking about prognosis. First, for men with "high-risk" cases (based on the traditional Gleason, PSA and stage), survival at the ten year point is 95%. (From PCRI's pamphlet "What's Your Type?", citing "Long-Term Survival Rates of Patients with Prostate Cancer in the Prostate-Specific Antigen Screening Era: Population-Based Estimates for the Year 2000 by Period Analysis. Journal of Clinical Oncology Vol. 23 page 441, January 2005. Note that was before some recent advances of the past half-decade, including Provenge.) On the other hand, most of those high-risk men were probably like me - high PSAs, Gleasons, or stages, or a combination of higher-risk characteristics, but without established or detectable metastases.

Survival is not the only prognostic focus; another key focus is on the duration of the success of an approach. That's where intermittent triple blockade has been so impressive, though with limited published data. Here's an interesting study by the one-time president of the American Urological Association and colleagues: survival time after clearly demonstrated, carefully time recorded failure of old style hormonal blockade in the 1990s - for men with a positive bone scan for cancer at that time, survival averaged 40 more months; for men with a negative bone scan at that time, survival averaged 68 more months. (Oefelein MG, Agarwal PK, Resnick MI, Case Western Reserve University (near and interacting with the famed Cleveland Clinic), "Survival of Patients with Hormone Refractory Prostate Cancer in the Prostate Specific Antigen Era," J. Urol, 2004 Apr, 171(4), pages 1525-8.) There is a myth that such patients only survive around 20 months; that myth is based on counting survival from the point they enter clinical trials, which is often many months after they became refractory, and it does not consider modern advances.

My bottom line is that no one can give you a prognosis with high confidence. I believe that you will enjoy many good years if you choose wisely and work at controling the cancer.


Quote:
3 My doctor seem to suggest that I should not for my case take a vacation from HT at any time. Is this consistent with the view that PC with metastasis should not be left free to spread?
I'm building on Baptista's helpful comment. I believe that the leading experts he mentioned would want to see an excellent response to triple hormonal blockade before letting you go intermittent. I think Dr. Tucker, also an expert, would also want that. Specifically, if you could get your PSA down to <0.05 on triple blockade, or, even better, <0.01, I believe they would feel that intermittent blockade would work for you. Such success, probably backed with imagery showing the metestatic points had shrunk or disappeared, would make it unlikely that the cancer would spread substantially while taking a vacation from the heavy duty drugs. If you could not get that low, they would want to move on to some other approaches, such as possibly second line hormonal blockade, the drug Leukine, possibly Provenge, possibly chemo, or other options.

Quote:
4. I know you are a strong proponent of triple HT but is there a danger of using up all your weaponry upfront and coming up short later. Isn't better to use what works first and keeping some weapons ready for the next onslaught. Sorry, just some layman's logic.

Thanks again and keep up the good work!

Lklklo
That's not only layman's logic, but, very unfortunately, tragically, in my view, it is also the logic of a good many well-meaning and even talented doctors. However, I'm fully convinced they will be proved wrong. I'm convinced the doctors will be proved right who believe that it is better to hit the cancer very hard when the cancer is earlier and weaker and the patient stronger, than vice versa. A drug like Lupron or Zoladex is the heavy artillery. However, it often cannot do the whole job and leaves key channels open for the cancer to wreak its havoc on our systems. Antiandrogens go a long way toward closing the remaining gaps; to me and the experts, the evidence, including what they see in their own specialized practices with high volumes of challenging patients, is conclusive. But even these two classes of drugs have not proved as good as the triple combination, which involves adding the 5-ARI drug finasteride or Avodart. The experts would insist on supporting triple blockade with an adequate bisphosphonate to preserve bone density or minimize its loss, and to help against bone mets.

There are several key points here. One is the momentum analogy. Hormonal therapy works better when the cancer is caught earlier. The idea is to hit it hard before it builds up much momentum.

Another point is the view now taking hold among cancer researchers that cancer will seek different channels to spread when one channel is blocked. It can often overcome two channels that are blocked to it. However, when three or more channels are blocked, therapy seems to have a better chance of success. This was a major theme of the 2010 national meeting of 18,000 cancer researchers at the American Association for Cancer Research annual meeting.

I can provide more evidence and leads, but I thought I'd give you time to digest this. I'm dearly hoping you won't let your doctor stop blockade and instead will be able to convince him to move to triple blockade. Ideally, hopefully, you will be able to see an expert, such as Dr. Tucker.

Take care,

Jim

Last edited by IADT3since2000; 01-28-2011 at 05:28 PM. Reason: Spelling.

 
Old 01-28-2011, 12:32 PM   #11
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

Thank you, Jim, for building confidence in those of us who either are dealing with or who love somebody who is faced with advanced prostate cancer.

It appears, in Toronto, that triple blockade isn't the popular route and I'm convinced, by your success and your years of research that this would be the best option for Irv, regardless of that fact that he had a prostatectomy and whether or not he chooses to go for radiation. In my mind, cancer cells are cancer cells and those that remain after treatment are no different than those which exist before any treatment is done.

Whether or not surgery was the best option for Irv is now irrelevant. What's done is done and the major portion, and, from my understanding, likely the oldest, more aggressive portion, has now been removed. In medical terms, the tumor has been debulked. Still, some remains and if we were aggressive enough to do the surgery, then we already started a route to just hack away at this beast as hard as we possibly can, right from the outset.

With proven metastasis, the option of surgery likely won't be an option for Lklklo, but, as far as I'm concerned the situations now look very similar. Even if the bone scan and the ct scan are negative for metastasis, it just may mean that the cancer is too small to be seen by these methods, which, I've learned from you, is usually the case.

So, with all of that being said, like Irv, Lklklo is on a similar mission and I really do believe it makes sense to attack with all the heavy artillery while the army is still weak. Don't wait for the troops to gain momentum. Please just bring on all the studies in the medical journals which support triple blockade because I'd like to use them as our initial artillery....that is...to throw them in the laps of the medical professionals here to get them to realize our seriousness in wanting triple blockade for Irv.....Let's get the weaponry all charged up and go on the attack!!!

Thanks, Jim and Baptista and all the rest of you here who give such valuable input...You're the best.

Regards, Rhonda

Last edited by honda50; 01-28-2011 at 12:34 PM.

 
Old 01-29-2011, 07:16 PM   #12
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Re: Just diagnosed with pc. Psa 245 with one bone met spot.

Hi Rhonda,

I'm hoping that Irv can get triple blockade too. By the way, have you seen the movie "My Life in Ruins"? One of the key characteris is named Irv. I'll put a comment below on my own struggle to get on triple blockade.


Quote:
Originally Posted by srhonda61 View Post
... It appears, in Toronto, that triple blockade isn't the popular route and I'm convinced, by your success and your years of research that this would be the best option for Irv, regardless of that fact that he had a prostatectomy and whether or not he chooses to go for radiation....
Triple blockade was not popular near me in early 2000 either, in fact it was virtually unknown, and that has not changed much among doctors, though it is slowly emerging on their radars. My excellent urologist team was happy to manage my case on Lupron and Casodex, but they just were not comfortable adding Proscar (now available as finasteride, the generic version) and testing bone mineral density. They referred me to a medical oncologist, who immediately put me on a bisphosphonate for bone density even before having me scanned. He was not familiar with triple blockade, but he was willing to study some material about it. I think I mentioned before that he wanted me to understand that he had not used it before and considered it investigational, but also that he was willing to manage my case with triple blockade. Your husband may need to follow a similar path.

Check the Primer, page 148 in my original edition, for Figure 60 and supporting text. It shows encouraging results for men on triple blockade who recurred after surgery or radiation. More than half had not had to go back on triple therapy as of the 60 month point of their vacation from the heavy duty drugs (typically Lupron or Zoladex plus Casodex); they just maintained with finasteride. (This was before Avodart was available as an alternative.)

By the way, I have not posted a new update yet, but my last test was good. I may be doing even better than during my second vacation period.

Take care,

Jim

 
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