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Cancer: Prostate Message Board


Cancer: Prostate Board Index


[COLOR="DarkGreen"]Hi Gleason9 (Tom),

Welcome to the board! :wave: May I assume from your chosen identity that you are the ninth son in the Gleason family? ;) (Lame joke, but humor helps, sometimes even bad humor. Anyway, I'm glad you are with us. I'm sorry about that double hit with lymphoma. :( I'll make some comments below about triple blockade, but I'm not sure how it would dove tail with treatment for lymphoma. :confused: My hunch is that both could be done in parallel. We've had some folks with that double hit in our local education and support group and on this board, so it's not common but not extremely rare either. At least it is low grade. At least one of our support group guys had treatment and knocked it out as far as could be told.

I' responding to your first post, but have read through your post #5, including helpful responses from Baptista. I am now in my eleventh year of intermittent triple blockade, with maintenance (finasteride), for a challenging case of prostate cancer as my sole therapy. I'm now five months into my third vacation from the Lupron and bicalutamide. Life is good! :D[/COLOR]

[QUOTE]I recently underwent robotic surgery for what was believed to be Gleason 7 T2b prostate cancer. The post-surgery pathology report upped the score to Gleason 9 with right-side positive margin, but didn't find any other evidence of spreading except perineural invasion. (They did find low-grade lymphoma, however. :( ). My PSA six months prior to surgery was 14. My urologist, etc., dropped the ball and didn't do a pre-op PSA test to get a good idea of my doubling rate.[/QUOTE]
[COLOR="DarkGreen"]That's too bad, but you still have some good clues. (I never got a handle on my doubling time either. My first ever PSA was 113.6, and within two weeks I had my first Lupron shot.) When you look at your score of 4 two years ago, your score of 7 one year ago, and your score of 14.7 six months ago, it suggests a doubling time of somewhere between six months and a year. Specific dates might make the picture clearer, but there is always the chance that some growth in healthy tissue or especially some infection or inflammation could also be contributing, which would increase the doubling time of the cancer (a good thing). Unfortunately, there's no way of telling. At least you have some tentative figures.

If that rise from 7 a year ago to 14.7 six months ago is solely due to the cancer, that adds a risk factor, and it's worth making sure your doctors know about it. In essence, a PSA velocity of more than 2.0 per year in the year prior to diagnosis is a fairly strong indicator of a more aggressive cancer, in addition to the usual risk staging characteristics (PSA level, Gleason score and stage). Unless the rise you experienced is mainly due to one of the non-cancer factors, which is probably not that likely, your rise is in the higher risk area.

You can check the research on this by going to www.pubmed.gov, a site we can use on the board because it is Government sponsored. (It's our gift as taxpayers to us and to the world. PubMed electronically provides leads to all the significant medical papers published all over the world, providing abstracts in English for the vast majority of them.) Dr. Anthony D'Amico, a prominent radiation expert in Boston led the team, so you could search PubMed for something like (without the quotation marks)" d'amico a [au] AND prostate cancer AND "Preoperative PSA velocity" AND 2004 [dp] ". I think that will get you right to the paper or to a small group where the right one will be obvious. I have the paper, and I strongly recommend you get the whole paper. There are a lot of medical libraries around that will give access to patients. Mine even copies articles I want for me. If you have questions about the paper, I can probably answer them.

Though you will see that being at higher risk in this way affects a patient's chances, keep in mind that the men whose results were tracked were treated a long time ago as prostate cancer time is counted (things move fast in research and development for us). Therefore, results today, for men treated intelligently, partly as a result of the D'Amico research, should be much better. :D

By the way, Dr. D'Amico is the same doctor who pioneered the now universally used low-, intermediate-, and high-risk categories based on PSA, Gleason, and stage.[/COLOR]

[QUOTE]So now, I visited an oncologist who wants to do standard hormone therapy and radiation. I'm currently undergoing tests, but I've also been doing research and found references to triple hormone therapy.[/QUOTE]

[COLOR="darkgreen"]I am so not fond of the idea of standard hormonal therapy, probably meaning just a single drug, for a patient with a case history like yours! (Then again, I'm a survivor with absolutely no enrolled medical education under my belt.) I'm convinced that we patients with extra high-risk case characteristics need full triple hormonal blockade, hopefully intermittent, which is very often possible, even for us high-risk guys.[/COLOR]

[QUOTE]It is clear that I have high-risk prostate cancer, and I can assume that micromets are still in my body after the surgery. I like the idea of hitting them hard right away.[/QUOTE]
[COLOR="darkgreen"]Right, and AMEN![/COLOR]

[QUOTE]Because of that, I wonder if the recommended approach might not be as effective.[/QUOTE]


[COLOR="darkgreen"]I'm thinking it would not be as effective as you need.[/COLOR]

[QUOTE] It would seem that radiation would only be done to focus on the remaining positive margins, especially since there was no evidence of the cancer having spread beyond the prostate. [/QUOTE]


[COLOR="darkgreen"]I think Baptista addressed this, right?[/COLOR]

[QUOTE]I would think that other therapies could deal with the positive margin just fine without the risks, expense, etc., of radiation. [/QUOTE]

[COLOR="darkgreen"]Hormonal therapy might be able to deal with the margins, but usually it does not totally kill such cancer, as I believe Baptista also indicated.[/COLOR]

As for the standard hormone therapy, it seems that it is both not enough and yet too much. It isn't broad-spectrum enough, and it is continued far too long, leading too easily to resistant cancer.

[COLOR="darkgreen"]My impression is that single drug therapy, or even two drug therapy (LHRH-agonist plus an antiandrogen is typical) are more prone to earlier resistance than triple blockade, especially if the latter is intermittent. There's a lot of informal information about this, but only a handful of published studies on triple blockade. Doctors who are not expert in hormonal blockade greatly overestimate the potential for early resistance with triple blockade (and for other types). I can explain the likely reason for their misconception, but for now, it may encourage you to know that many of us respond well (to first line hormonal therapy) for ten to eleven years, or indefinitely. After that, there is second line hormonal therapy, and there are other non-chemo options.[/COLOR]

I have read the Leibowitz documents, but have not yet reviewed the books from other practitioners. But I'm hoping that this would be a good treatment option for my high-risk case.

[COLOR="darkgreen"]"Dr. Bob" Leibowitz's writings are what initially persuaded me to switch away from external beam radiation to a reliance on hormonal blockade as sole therapy, back when I was deciding around May 2000. For a long time he focused his writings on men who had not had surgery or radiation, just focusing mainly on men going straight to triple blockade as their sole therapy.

One other major practice with many triple blockade patients has published two books that cover triple blockade as well as many other topics. The first is "A Primer on Prostate Cancer--The Empowered Patient's Guide," originally published in 2002 but revised in 2005. It's by Dr. Stephen B. Strum, MD, and Donna Pogliano. It has a long secton on hormonal therapy (aka androgen deprivation therapy), and it has two graphs of success with triple blockade, including one that is specifically for men with prior surgery, prior radiation or both. Both tables are encouraging. Do you have the Primer?

The other book has just been published. It's "Invasion of the Prostate Snatchers--No More Unnecessary Biopsies, Radical Treatments Or Loss of Sexual Potency," by Dr. Mark Scholz, MD, and Ralph H. Blum. It has at least three chapters with key information about hormonal therapy, though it calls it by the awkward name "Testosterone Inactivating Pharmaceuticals" (TIP).

A third practice has also resulted in a book. Dr. Charles "Snuffy" Myers, MD published his book "Beating Prostate Cancer: Hormonal Therapy & Diet" just a few of years ago. It too has great information about this strategy. Dr. Myers has the unique qualification among these authors that he was on triple blockade for nineteen months for his own challenging case of prostate cancer.

While some of the information in these books overlaps, I am convinced the patient who is contemplating hormonal therapy will learn a lot from reading all three. Both practices have ample experience with men who are starting blockade after recurring following radiation or surgery.

There are also several prostate cancer newsletters that often feature information about triple blockade.[/COLOR]

[QUOTE]Since I live near the Twin Cities in Minnesota, it would also be nice to find a local oncologist who uses a triple hormone therapy. Mayo is even close, if they would support this treatment. Any recommendations would be wonderful.[/QUOTE]

[COLOR="DarkGreen"]I do not know of any such doctors near you, but the headquarters of the national education and support group Us Too International is in Downers Grove, Illinois, not that far from you. They might have some fairly "local" knowledge of doctors who know the ins and outs of triple blockade. You could also check with the Scholz/Lam and Myers practices for leads. [/COLOR]

[QUOTE]I would appreciate any advice you folks would care to give.

Tom[/QUOTE]

[COLOR="darkgreen"]Just a parting thought: you may not have recurred, even with that positive margin. Have you thought of insisting on an ultrasensitive PSA test to substitute for that conventional test your doctor is using? Personally, with your history, I'm not impressed that the doctor chose to monitor with a conventional test. :( However, please remember that I lack medical credentials.

Take care, and good luck,

Jim[/COLOR]
[COLOR="DarkGreen"]Hi again Tom,

I'll insert some thoughts in excerpts from your latest post, #7 as well as posts #5 and #3.[/COLOR]

[QUOTE][COLOR="Black"]Hi Jim,

A great big Thank You! for your wonderful post. I just ordered the Primer yesterday, and I'll get the other books as well. I'm hoping they will help me explain what I need to a local oncologist, if I can't find one who uses the triple blockade therapy.[/COLOR][/QUOTE]

[COLOR="darkgreen"]You're very welcome. Baptista, I, and all of us are a big band of brothers and sisters here to help each other. :)

I'm convinced it's best to have an expert medical oncologist who specializes in prostate cancer to manage triple blockade therapy, but there are only a few who do that, and consulting one of them is often not practical. Fortunately, they are generous in sharing their techniques and results. That enables a lot of us to work with a local oncologist. That's what I have done. My doctor seems to me to be an excellent general medical oncologist, and he manages a number of prostate cancer patients. I like his experience, his compassion, and his open mindedness. We have made a good team. I hope you find someone like that.

[/COLOR]

[QUOTE]In retrospect, I am disappointed with my clinic urologist, who performed only the simplest tests. I've seen literature, from Strum I think, that describes in detail how to use the standard and sensitive PSA tests, and I had none of that. Even my surgical urologist (a different one) didn't take a pre-op PSA, referring instead to the one that was seven months old. Had I known how important it is to create a solid baseline and history, I would have asked for more timely tests and wouldn't have assumed that these doctors would order advisable tests.[/QUOTE]

[COLOR="darkgreen"]Don't feel lonely! :( It seems that most of us assume the doctors we see are objective, are highly experienced and talented, keep up with the field, and have a computer-like memory for all details of our cases. After a while we realize that they are only human and often have shortcomings, as well as some wonderful talents and experience. I'm convinced that patients who become empowered have better outcomes.[/COLOR]

[QUOTE][COLOR="Black"]Thanks again. I am so happy I discovered this great forum.

Tom[/COLOR][/QUOTE]

[COLOR="darkgreen"]You're welcome again. Now on to some points in posts #5 and #3.[/COLOR]

[QUOTE][COLOR="Black"]#5
...
Not being delighted at the prospect of years on hormone therapy, I looked around for alternatives and found the Leibowitz site. Leibowitz was recommended, actually, by my wife's osteopath. I like the sound of his 13-month protocol because, even though it is shorter, it seems to promise better results than standard hormone therapy. He also claims to make great efforts to reduce side effects.
...[/COLOR][/QUOTE]

[COLOR="black"][COLOR="DarkGreen"]Doctors Strum, Scholz and Lam like to see the PSA get down to <0.05 for their patients on triple blockade (aka triple hormonal therapy, aka triple therapy with TIP - Testosterone Inactivating Pharmaceuticals), and if it happens quickly, usually within several months, they like to see it remain that low for about a year. They may have changed their thinking on that, but that used to be their approach and I suspect it is still about the same. However, as they have gained years of experience with triple blockade, I think they now sometimes go for shorter periods on the full therapy depending on the way the patient responds and on his personal case and overall circumstances.

There is one other difference I consider a major difference between the approaches: the dose of bicalutamide (brand name Casodex), the antiandrogen part of the triple therapy. Dr. Leibowitz and his former partner, Dr. S. Tucker, always used three 50 mg pills a day for a total of 150 mg of bicalutamide. Drs. Strum, Scholz and Lam used 50 mg as the standard dose, unless the patient was metastatic, in which case they used 150 mg. (I have always been on just 50 mg.)

While Dr. Leibowitz has been very reluctant to use bicalutamide again if the blockade needs to be repeated for a second round, that's not the case with the other practice. Dr. Leibowitz has been concerned about mutation of the cancer so that the bicalutamide becomes fuel instead of an opposing agent, and my impression is that he's seen that happen enough times to be concerned. The other practice does not seem concerned about repeating bicalutamide, but makes an adjustment if the PSA starts rising while on the triple regimen with bicalutamide.

My impression is that either approach will work, but Dr. Leibowitz has achieved virtually 100% success with his low-risk patients after just one round of blockade, and impressive success with higher-risk patients after just one round. :D Then virtually all of them recover from the side effects after a few months, and they return to enjoying life as it was before diagnosis, except that they stay on finasteride as the maintenance therapy.

The Strum-Scholz-Lam team has achieved substantial success after just one round, but not near the 100% of the Leibowitz approach. Does that make the Leibowitz approach better? Not necessarily. The Strum-Scholz-Lam team initially used a PSA of 2.5 to restart blockade (maintained with finasteride, and now often with Avodart) after triple therapy, more recently increasing that to higher numbers, around 5 I believe, depending on how fast the PSA was rising. In contrast, Dr. Leibowitz pioneered the approach of letting the PSA rise to as high as 10 before restarting, as long as it was not rising in that tell-tale exponential pattern that signaled steady regrowth of the cancer. He found that some men experienced a roller-coaster PSA pattern, or a saw tooth pattern, both with marked swings up and down, often repeating; yet, for many of these men, the PSA would not keep rising in that steady exponential pattern. He observed that these men did not need to restart full triple therapy in order to maintain control of their prostate cancer. (He discovered that these up-and-down patients were experiencing the GOK Syndrome: the God-Only-Knows Syndrome. ;))

If the Strum-Scholz-Lam group had used the same loose trigger for restarting full triple blockade, they might also have achieved results very similar to those of Drs. Leibowitz and Tucker.

Another difference, likely important but not as major, is in the dose of finasteride. As I recall it, Dr. Leibowitz was using only 5 mg per day. For years I thought that's what the other group was also using, so that's what I used. I was able to get my DHT well below 20, but not below 10, which was a mild concern. Then I realized that the Strum-Scholz-Lam group was using 10 mg of finasteride a day, not 5 mg. I started on 10, and it was not long before my DHT dropped a lot. During this last cycle it was below the lower limit of the test at a DHT of <3.

A related difference is that, at least up until a couple of years ago, Dr. Leibowitz strongly preferred finasteride instead of Avodart. The other doctors prefer Avodart. However, a small proportion of men have a genetic inability to take full advantage (maybe any advantage) of Avodart, and if the DHT has not responded well, the doctors will switch to finasteride. Also, as insurers are bearing down on costs, the doctors will often try 5 mg or 10 mg of finasteride first; if the DHT responds as is needed, then fine; if not, they will switch to Avodart.

My impression is that Dr. Myers likes to see his patients on 150 mg per day of bicalutamide along with the other two drugs (the LHRH-agonist and the 5-alpha reductase inhibitor). However, if the response is inadequate, Dr. Myers sometimes has used higher doses of bicalutamide. I'm not sure what dose of finasteride or Avodart he prefers, but I suspect he uses enough to get the DHT very low.

One other important point is that a very few patients do not tolerate bicalutamide (or other antiandrogens) well and start to develop liver injury. That is not serious if caught early, so men should have "liver function tests" until the doctor is sure that they do not have this problem. Dr. Myers has observed that certain drugs often help such men - often enabling them to stay on the antiandrogen without injury to the liver - one of them being Ursodiol. I've heard from some of his patients that he puts them on it as a preventive. I suspect the other doctors are also aware of such drugs. (My liver tests were fine.)

One common point among the experts is that they are not shy about moving on to more aggressive approaches if they are not seeing the PSA get down to <0.05 (I think <0.01 with Dr. Myers for most patients). Often that would mean switching from bicalutamide to high dose ketoconazole with hydrocortisone. It might mean adding Leukine to the mix. It could involve transdermal estrogen patches. My impression is that sharp medical oncologists who do not specialize in prostate cancer can do a good job managing first line triple therapy, if they take the time to learn from what the experts have found (possibly with our help in the education process). However, when the cases get more complicated, it seems to me that expert advice is very helpful.

As for side effects, all the experts are savvy about how to avoid or reduce them. Drs. Scholz and Myers in particular have written extensively about this. Dr. Scholz has recapped his advice in the new book "Invasion of the Prostate Snatchers--No More Unnecessary Biopsies, Radical Treatment or Loss of Sexual Potency". A lot of Dr. Myers' comments are in issues of his newsletter, "Prostate Forum".

These doctors also believe in lifestyle tactics as important support for hormonal therapy. Dr. Myers in particular has had a lot to say over the years about such tactics. He discusses many of them in his book "Beating Prostate Cancer: Hormonal Therapy & Diet." (Additional advice, with more detail on some of the mechanisms by which these tactics work, is in an earlier book he co-authored with his wife (a Ph.D.) and sister-in-law.[/COLOR]

[QUOTE][COLOR="black"]#3
[QUOTE]...
I was thinking of something like the Leibowitz protocol, which is a 13-month cycle of triple hormone blockade, supplemented with low-dose chemotherapy and an antiangiogenic cocktail.
...[/COLOR][/QUOTE]

[COLOR="DarkGreen"]As a layman survivor of a challenging case who has paid attention to triple blockade thinking for over ten years, I'm thinking that the experts would not think that low-dose chemo or the antiangiogenic cocktail would be necessary at this point. I think they would try triple blockade first and see how you did. However, there is research on adding chemo at earlier stages, and it's possible one or more of the expert practices would recommend this.

I think you may have asked about costs of the drugs in a previous post. Many doctors, let alone patients and the media, are not aware of the fact that major costs for prostate cancer treatment are plunging downward. :D This is true even with the recent approval of the very expensive drug, Provenge. Triple blockade patients are and will benefit from these changes. Here is how the five classes of drugs I have been on (three for triple blockade plus a bone density drug and a statin in support) are affected:

LHRH-agonist (the heavy hitter drug class in triple blockade): Lupron is still expensive, but Zoladex, which is equivalent in effectiveness to Lupron, is losing its patent protection this year and will soon be available as a generic. Generally, drugs rapidly drop to about one third of the former price when they become available as generics. That's good, because these drugs are very expensive. Last November my oncologist billed my insurance company $5,408 for my four month Lupron shot; I believe the reimbursement was about $1,000 less based on the contract between the practice and the insurer, but you can see that the shot was expensive. Once Zoladex goes generic, we will have a much less expensive option, and that may put downward pricing pressure on the Lupron option as well as other LHRH-agonist options. :cool:

Anti-androgen class (the mid-weight hitter class in triple blockade): the preferred drug, Casodex, went generic (bicalutamide) a year or so ago and costs plunged. My insurer tells me its wholesale cost for my drugs so I'll appreciate the deal I'm getting with my copay, and here is that information: for a 6/10/2009 prescription, it was paying $12.79 per Casodex pill; once it became available generically as bicalutamide, it paid $4.52 per pill (9/4/2009). This large and sharp drop in price should have quite an impact! :D

Brand name Proscar cost $2.20 per pill in the Summer of 2005; it's now available as generic finasteride at $.78 per pill, a reduction of 65% (7/19/2009). My DHT tests are proving there's no problem with the generic.

Bisphosphonates, such as brand name Boniva for maintaining bone density (preventing/limiting osteopenia/osteoporosis), on 7/23/2009 cost my insurer $178 for three months of treatment, versus alendronate (formerly brand name Fosamax - some mix and match here but medically very close), three month supply $61.46 (9/18/2009), a reduction of 65%. Given the wide use of such drugs, this should have quite an impact. I prefer Boniva; I think it's giving me better results and is certainly more convenient with once monthly vice weekly dosing. I'm willing to pay a substantially higher copay to get it as a brand name drug. However, alendronate is a very effective drug also.

Brand name Zocor 20 mg, a statin used to reduce cholesterol, helping counteract one of the common side effects of LHRH-agonist drugs, cost my insurer $3.82 per pill (9/18/2009) versus generic version simvastatin, $.20 per pill (6/30/2009), a reduction of 95% for this widely used class of medications!

I hope all this helps.

Take care,

Jim :wave:
[/COLOR][/COLOR]
Jim,

You previously wondered:

[QUOTE][COLOR="darkgreen"]Just a parting thought: you may not have recurred, even with that positive margin. Have you thought of insisting on an ultrasensitive PSA test to substitute for that conventional test your doctor is using? Personally, with your history, I'm not impressed that the doctor chose to monitor with a conventional test. :( However, please remember that I lack medical credentials.[/COLOR][/QUOTE]

I did some research today to help me better understand an issue related to PSA and aggressive PCa. The main reason my oncologist does not want to wait for a rise in PSA is his claim that PCa can turn aggressive without a significant rise in PSA. At first, I took that statement at face value, and my initial research seemed to confirm it.

But today I looked closer. I found this statement at the Prostate Cancer Research Institute site in the article: "What Every Doctor Who Treats Male Patients Should Know:"

[QUOTE]Aggressive variants, in general, have high PSAs (over 10) OR very low PSAs associated with very aggressive, high Gleason score [(4,3), (4,4), (4,5), (5,4), (5,5)] cancers. These variants are very dangerous, often escaping investigation for long periods of time because the PSAs appear to be in the so-called normal range. Investigating all PSAs of 2.0 and over will help to catch these aggressive prostate cancers while they are still organ-confined and treatable with local therapies such as surgery and radiation. The probability of detecting these low PSA/high Gleason score cancers is enhanced if patients and doctors monitor even very low PSA levels over time to note any persistent increases.

High Gleason score cancers often have reverted to an embryonic state in which PSA secretion into the blood is markedly reduced.
Checking the serum for abnormal elevations in markers such as CGA (Chromogranin A), NSE (Neuron Specific Enolase), CEA (Carcino- Embryonic Antigen) and PAP (Prostatic Acid Phosphatase) is important to discern PC activity secondary to these de-differentiated tumor cell populations. Therefore, in cases such as this, the normal guidelines for PSA velocity and doubling time may not be applicable. HOWEVER, the concept of slope or trend in a biomarker of disease activity remains valid, and any biomarker elevation should be tracked at regular intervals to determine the presence of abnormal growth of primitive (embryonic) tumor cell clones.[/QUOTE]

It is clear from this statement that even this kind of aggressive cancer does produce PSA, just at reduced levels. Thus, even if my PCa were to be this type, I would see a trackable rise in PSA, especially if the ultra-sensitive test were used. Any suspicion of recurrence could be followed up with tests for the other markers of such cancers. So, as you said, I could just wait for a while to see if I in fact have a recurrence before taking drastic measures. It's nice to have another option.

Live and Learn! Or is it: Learn and Live!
Tom





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