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Cancer: Prostate Message Board


Cancer: Prostate Board Index


[COLOR="DarkGreen"]Hi Tim,

On behalf of all of us I'll say "you're welcome." That's what we are here for - to share experiences and to learn from each other.

Congratulations on that nice drop in PSA. You are off to a good start. I'll add some comments in green in response to an excerpt from your initial post. Please keep in mind that I'm a layman with no enrolled medical education. When I make a statement, it's usually based on something I've heard or read from doctors I follow closely or from published studies, but I have no personal medical authority to back up what I write.[/COLOR]

[QUOTE=Tim E;4237810]... Prior to the second appointment with the oncologist, I sent a letter stating what I wanted to measure and his thoughts on adding a medication to my present therapy.

[COLOR="darkgreen"]What a great idea! :D I've phoned in a concern a couple of times, but I don't recall that anyone has sent in a letter in advance of an appointment. That gives the doctor a chance to think through our concerns and perhaps do some research in advance. :cool:[/COLOR]

He was impressed at the detail, and seemed very open to the suggestions, but his comment, its too soon to tell. We just stated treatment. But he seemed open to this.

Present state, 2nd hormone shot given, 3rd Zometa given.
PSA after RP was at 10- 3 months after the 1st Lupron it was at 0.5. Because of the drop, he seems to think that Lupron is enough. The plan is to have Lupron and Zometa every 3 months. I know that this guy inst an expert on prostate cancer,

[COLOR="darkgreen"]There are experts, and then there are the in-depth, exceptionally gifted experts who are years ahead of their peers. I suspect your doctor knows a great deal - early use of Zometa is a good thing in my layman's opinion, but I'm almost sure from what you have written that your doctor is not one of the experts in hormonal blockade who are setting the pace with this approach. Often these gifted experts specialize almost exclusively in prostate cancer, and many of their patients have non-routine cases that pose special challenges. Just the extra volume alone of such cases helps them see what works and what does not.

The doctors I follow closely - especially Drs. Charles Myers, Stephen Strum, Mark Scholz and Richard Lam - all are convinced that triple blockade is usually best for challenging cases of recurrences, like yours, rather than just a single hormonal drug approach or even (better) a combined two-drug approach. Dr. Strum likes to use the concept of "hitting the cancer hard when the patient is strong and the cancer is weak," in other words, hitting it hard up front rather than holding drugs in reserve. It seems to me that's especially true with a patient who has some bone mets and a challenging response to surgery, as indicated by the high post-surgery PSA. This combined approach, especially triple therapy, is very much in line with current thinking by cancer researchers who see cancer as a flexible, adaptive disease that will try alternate pathways if the main pathway is blocked.

The Scholz-Lam-Strum team has had some of their triple blockade research published in the prestigious Journal of Urology, and elsewhere, I believe, though the terminoloty is difficult if you are not used to it (such as TIP - "testosterone inactivating pharmaceuticals" - whew!:dizzy:). Morever, a Japanese study that extensively surveyed hormonal therapy in Japan, while not a prospective randomized clinical trial, provided some impressive figures indicating that a single drug (or just physical castration) did not work well with challenging cases after just a few years. (The fall-off after about four years was scary :eek: :(, especially in sharp contrast to much greater success with other approaches. :cool:) While Dr. Myers has not published research his results in using triple blockade with his patients, he has written about it informally in his Prostate Forum newsletter and has described impressive success in talks as well. Dr. Robert Leibowitz is another expert with triple blockade, but he focuses more on using it as the primary therapy rather than as a follow-up; he and his former partner Dr. Stephen Tucker have presented their research at a prominent conference, and they are looking to have it published.

However, the research is in the nature of reports of their own "clinical series", in other words, it's based on how their own patients have done. Many conventional doctors - including excellent physicians - won't change their medical practice in response to research unless it is based on clinical trials, especially carefully controlled randomized clinical trials. That means that a great many doctors are not paying attention to advances in hormonal blockade therapy. Years ago Drs. Strum, Scholz and their colleagues tried to get Merck to sponsor a trial for triple blockade, but Merck was not interested in providing financial support, and the trial was never launched. Finally, recently, a leading medical oncologist, Dr. Oliver Sartor, is leading a trial on triple blockade; however, we won't have results for several years, which doesn't help you.

Therefore, you may need to provide copies of some of the studies to your doctor AND assure him that you recognize that triple blockade is "investigational." In other words, you are taking a big part of the risk off his shoulders. This is what I did with my oncologist way back in 2000, and it's worked out well. While triple blockade suffers from lack of published trials, there is a body of research on two-drug blockade. That is a pretty well documented approach.

The Primer has a great section on hormonal blockade, with key pages and graphs on triple blockade, so you probably already understand the essentials. Bascially, prostate cancer often finds a way to work around single blockade that just blocks testosterone produced by the testes. The main open door is due to testosterone produced indirectly by the adrenal glands, especially when the body senses there is a shortfall in testosterone. Casodex, now available much more inexpensively as bicalutamide, is able to block much of any remaining testosterone or dihydrotestosterone from reaching the androgen receptor docking sites that bring fuel to the cancer cell. Avodart (or finasteride - the generic version of Proscar) blocks virtually all or at least the vast majority of any conversion of testosterone into the much more potent DHT. Hence the triple blockade. Two gold standard type clinical trials have proven that both finasteride and Avodart have partial effectiveness in preventing prostate cancer, so that may ease some physicians' doubts about using these drugs.

While your drop in PSA to .5 is fine, the experts are really looking for a drop to below 0.05. If they don't see it on triple blockade, they quickly shift the mix of drugs and don't stop tinkering until they get the desired result. They work hard so the cancer is not able to build up a head of steam.
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he stated doubling time is overrated. Based on what happed pre treatment- my doubling time is no good.

[COLOR="darkgreen"]That kind of comment by the doctor concerns me. You might want to get copies of the two reports by the teams led by renowned prostate cancer doctor Anthony D'Amico, especially the one about pre-diagnosis doubling time for surgery patients, and give them to your doctor with your pre-treatment PSADT highlighted. My strong impression is that the fruits of the D'Amico research have rapidly found their way into practice, though not universally.

There is an opposing view, and the times I've heard it mentioned it has rested mainly on research by AJ Vickers and colleagues, especially two 2009 papers. I've looked at one that was based on a literature review. While it may be valid for early stage prostate cancer, I find the D'Amico work compelling for cases that are not routine. The Vickers paper I've read (available free from www.pubmed.gov, a site we can use here because it is Government sponsored) involved about half its database of papers covering patients who had not yet been diagnosed, a group not real appropriate for patients like us who have not only been diagnosed but are facing some challenges, such as recurrence. Moreover, while the paper referenced the D'Amico paper on RP patients and PSA velocity, it did not address it directly. The other paper has an abstract on PubMed, and the abstract indicates that the follow-up for the vast majority of the patients was quite short - just 2.1 years. It strikes me that the follow-up is just not long enough to support the objectives of the study. Again, I'm really impressed with the D'Amico work but not by the Vickers team's work, at least for our purpose as patients in dealing with a case like yours. If you look at the studies and see it otherwise, I would welcome your observations. [/COLOR]

I do have 2 small spots on the rib- which I know is not a great thing (to say the least).

[COLOR="darkgreen"]Right, but I've heard so many accounts of such spots disappearing under the assault of triple therapy, especially when augmented with Zometa. Good luck![/COLOR]

I am 46- working full time,

[COLOR="darkgreen"]I did that too, from age 56 when I was diagnosed with my challenging case until age 60 when I chose to retire from my mentally demanding job, five years beyond minimum retirement age for my employer. With the aid of countermeasures to side effects, I did well at work. In fact, I was rarely ill and had a better sickness record than almost all of my co-workers. However, some men do experience some mental and emotional side effects, usually mild. (A great thing about intermittent triple blockade is that the side effects go away, usually within a few months for most of us, when you take a vacation from the heavy duty drugs.)[/COLOR]

and have really increased my activity. I probably biked 80 miles this week, and this is no problem for me.

[COLOR="darkgreen"]For a long time we've had promising evidence that exercise helped fight the cancer as well as helping us cope with side effects. Recently a study was published that provided some direct evidence of benefit. Research is strongly suggesting that strength exercise is needed as well as aerobic.[/COLOR]

I am currently experiencing little to no side effects from the lupron, I am waiting for the hot flashes to come, and if I am getting them- they are very minor.

[COLOR="darkgreen"]I'm thinking you will be one of the lucky few who gets the benefits of the drugs without the side effects, but if you are getting a one month shot (not a bad idea at the outset), it is too early to be sure. According to the Primer, flashes usually start - if they are going to start - within the first few months. (The Primer has good information about all the likely side effects.)[/COLOR]

I heard that diprovera (sp) is good for helping this.

[COLOR="darkgreen"]Yes, for those who need a drug, Depot (meaning the way it's stored in the body) Provera has proven highly effective for many. However, the majority of us relatively mild cases of the flashes and sweats that do not require drugs - maybe fans, zippered garments and soy, but not drugs.[/COLOR]

I have eliminated all the red meat from my diet, my wife pours the low sodium v8 down me, I take calcium and vitamin d3.

[COLOR="darkgreen"]That brings back memories. Back in 2000 my wife practically insisted I down a can of tomatoes at each dinner. That got old. I do down at least two cups of low-sodium V8 daily though, and I use a couple of tablespoons of ketchup or cocktail sauce at lunch, with occasional tomato based sauce at dinner.

Are you getting your vitamin D level tested? It should be tested with the 25-hydroxy vitamin D blood test (just another vial when PSA is tested). You want a level at least above 30, and the docs I follow like to see the level between 50 and 100, preferably toward the upper end. Apparently many brands of vitamin D don't have much punch. Dr. Charles Myers recommends using the Life Extension Foundation brand. I've heard that Carlsen's has a good product, and I've heard favorable reports of several other brands. The proof is in the pudding: if the 25-hydroxy level is good or rises to the desired level, then the brand is working.

Other good nutrition includes fish oil capsules (good quality without rancidity or fishy odor), green tea (with a few drops of lemon to prevent oxidation, stirred, and brewed for at least three minutes - I brew for at least 5), quality pomegranate extract capsules, SuperBioCurcumin from Life Extension Foundation, possibly 200 mcg of yeast based selenium as well as 200 IU of gamma tocopherol vitamin E daily (though there have been some recent reservations about both, including Dr. Myer's shift to thinking that other antioxidants are superior), extra virgin olive oil but not flax seed oil or canola oil, and fruits and vegetables (especially cruciferous). Dr. Myers said in his latest newsletter that dairy products are still a concern but not a major concern. He emphasized the value of fish in the diet. Stress reduction - not that easy - is also advisable.[/COLOR]

One thing to note- 18 months ago i was treated for Thyroid Cancer, and had radioactive iodine treatment. I am wondering if this set the prostate cancer off.

[COLOR="darkgreen"]I have a good friend who wonders about that too. You might want to check www.pubmed.gov to see if you can find studies about that.[/COLOR]

My next step I believe is get with my primary doc- and measure blood sugar- the vitamin levels, etc.

[COLOR="darkgreen"]Dr. Myers cautioned in his latest Prostate Forum that many of us on hormonal blockade start to crave carbohydrates and sweets in particular. It's desirable to be disciplined about both. Note that the concern with sweets is not directly with prostate cancer; unlike many cancers, PC does not usually make much use of sugar as energy.[/COLOR]

Also, I need to request all of the records from the oncologist, to make me a better manager of my disease.

[COLOR="darkgreen"]Good move. You might want to routinely ask for copies of your tests, and then file them in an organized way so you can access and analyze them.[/COLOR]

...

I am interested if you guys think I am on the right track. Due to suggestions here, my oncologist knows I mean business....and I do.

[COLOR="darkgreen"]Yes - you're definitely on the right track toward being an empowered, effective patient partner with your medical team![/COLOR]

Thanks to all,

Tim[/QUOTE]

[COLOR="darkgreen"]
I hope this helps.

Take care,

Jim :wave:[/COLOR]





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