Most up to date information

[Blair77]

I'm trying to find the most up to date information on Metastatic prostate cancer. I've been looking on twitter, google etc. , but not much is coming up. I'm surprised that 2 drugs ( HT and docetaxel ) both developed over 60 years ago is still the best option for my husband. Is there nothing more cutting edge?

[bhammel]

You really need to talk to an oncologist. HT means hormone therapy and docetaxel is a drug which may or may not be useful.

[rguerrero997 in reply to bhammel]

Bhammel, how are you?

[bhammel in reply to rguerrero997]

Just changing from Lupron to abiraterone and prednisone in next week or so since PSA not effected by Lupron after about 4 years. Feel good.

[Scruffybut1 in reply to bhammel]

Good luck with Abi+Pred. Been on since Sept after 10 cycles of Docetaxel and have great results to date and nil side effects. Now 0.06 PSA original 200.

[Blair77 in reply to bhammel]

We are being seen at UCSF by an oncologist. I'm just not impressed with the options.

[Hidden in reply to Blair77]

What would impress you?

[Blair77 in reply to Hidden]

I'd be impressed with a cure or my husband getting to see our 3 year old or 6 year old graduate college. That would probably impress me.

[Hidden in reply to Blair77]

(hormone therapy plus chemo therapy) is the accepted choice at the moment. The Hormone therapy is to reduce testosterone from the testes, via leuprolide. There is a question about doing more by also blocking the production of androgen from the adrenals, and blocking the androgen receptors. The probable best choice at the moment, the casodex replacement (aka bicalutimide), is enzalutimide. And Proscar to inhibit DHT creation (edgy).

Or a trial sort of like this clinicaltrials.gov/ct2/show...

There are many others trials too.

The chemo, docetaxel, is available,but a newer drug, Jevtana, is FDA approved, but not sure if you can start with that.

The immune therapy is the next relatively safe bet. CTLA4 seems to be the magic word at the moment. But look for videos on You Tube.

If you are near LA, go to the 2017 PCRI mid-year (1 day) patients conference.

[Blair77 in reply to Hidden]

Thank you. I will check on CTLA4.

[Hidden in reply to Hidden]

Here is an example of the trial that targets CTLA4. clinicaltrials.gov/ct2/show...

I think it might be time well spent to check out the clinicaltrials.gov/

web site. I like the "advanced search" better.

[Darryl Partner]

You might find some new treatment ideas at advancedprostatecancer.net

[JamesAtlanta]

I highly recommend a book by Dr. Walsh entitled "Guide to Surviving Prostate Cancer". Make sure you get the latest edition, which includes the most current treatments. It is available on Amazon (hardback and electronic). Many call this book "the bible" for prostate cancer information. I wish I had found this book much sooner.

There are a lot more second line treatments than were available previously, and many more being tested, so I think all of us with PCa should remain very optimistic.

Hope this helps! And this forum is very informative, too. I have gotten a lot of helpful advice.

Good luck!

James

[Hidden]

The newest AND best PC book I've found so far (I've read >25) is Chodak's "Winning the Battle Against Prostate Cancer: Get The Treatment That's Right For You 2nd Edition".

We're still using old ADT (androgen deprivation therapy) drugs because of momentum, the decades required to prove what works with a disease that takes 20 years to kill us, the many billions of dollars it costs to vet a new drug, and ... oh, yes ... they've not found (i.e., PROVED) any newer drugs to work better at this task*. Some of the newer drugs used after docetaxel fails may prove to work earlier, but that's still speculation.

* By "works", they mean "prolongs the life of many men, but with a long list of onerous side effects (SEs) ranging from certain (ADT will ultimately stop working, driving our cancer into its ADT-resistant stage, which is lethal), to virtually certain (crushing fatigue BECAUSE it drives our testosterone near zero to starve our cancer), to less certain but still frequent SEs (e.g., congnitive impairment, diabetes, and long list of other SEs of various likelihoods.) Some of them include hot flashes, osteoporosis and fractures, sexual dysfunction, increased body fat (11%), decreased muscle mass (4%), adverse changes in cholesterol and triglycerides, increased fasting blood glucose and hemoglobin A1c with an increased risk for diabetes, changes in arterial compliance with an increased risk of heart attack, painful breast enlargement with some medications that have estrogen or progesterone-like properties (this side-effect can be minimized by pre-treatment irradiation of the breasts, tamoxifen, or surgery), dry skin, dry eyes, hair loss, anemia, loss of energy, cognitive dysfunction, depression, and vertigo. Individual drugs have their specific side effects. zoledronic acid must be used with caution in patients who have had extensive dental work, as it can cause ONJ.

Your best source of cutting edge medical knowldge is PubMed -- 26,000,000 peer-reviewed, VERY easily searchable, research papers current right up through this morning. Virtually every good doctor on the planet uses it. It has several basic inherent problems, though, including:

1. For every such trial reporting one new finding, there will be one -- or 8 -- similar-sounding but contradictory trials. Get out your darts, or use the Cochrane Library to weed out the weaker studies.

2. Many, probably most, reports lie, because if they don't support the outcome desired by the drug makers, funding and public recognition die off. (Not just my opinion; published research has often concluded that.)

3. A single powerful study proves very little unless it runs long enough to verify its life-altering claims ... 10-20 years in the case of PC. Most studies rush to publish at 4-5 years to beat the competition and save or recoup a few billion bucks. The problem with that is that often just going fishing will achieve the same results as a mere 4-5 years of heavy, very onerous, drugs.

4. A body of godlike men and women assemble every year or so, examine all the research, do their best to separate fact from BS, and decree Standard of Care treatments for each of mankind's ailments. Doctors can lose their licenses if they fail to follow it, insurance will not pay if it's not SOC, and the bigger and fancier the hospital, the more rigidly it relies on the SOC protocols.

5. Doctors get paid for the first 12 minutes of each consultation with patients; the other half hour or hour is unreimbursed by insurance, so they eat it or walk out of the room. They make their money by treating us, not talking to us, giving them minimal time to talk and minimal incentive to list the SEs which just might prompt the cash cow sitting in front of them to do the walking. I've talked and/or typed with MANY men whose oncologists omitted even the most common -- sometimes virtually guaranteed -- SEs of their proposed treatment. I've seen men lied to by oncologists, been lied to myself by several of them, and been deliberately and accidentally (because so many of them cannot or will not keep up with even long-proved medical facts) misled countless times. How do I know? By studying this $#!+ for many thousands of hours to prolong my own life, health, limbs, and other parts and to protect myself from the 50% of physicians who graduated in the bottom half of their class. Heck, even the brilliant physicians can't possibly keep up.

6. If I sound cynical, it's because I've read so many of such reports, including quite a few which concluded #s 1, 2, and 3. There are even some VERY persuasive theories supported by research that cancer is not even caused by rogue genes, that the rogue genes are simply one of the effects of cancer caused by other factors such as metabolic flaws.

There are exceptions to all of the above, but not as many as we'd like to think. If there were many, we'd be at the mercy of charlatans, idiots, darts, thalidomide, etc. All this scrutiny saves many lives overall ... we hope.

That said, I've tried some big guns (Mayo Clinic and Fred Hutch), some local guys (same SOC meds as the big guns but just 7 minutes from my home), and have consulted by phone (face to face next week) some self-described mavericks. These particular mavericks have treated only PC for decades, use SOC medicines in cutting edge blends with FDA and insurance provider approval, have given many men 10-20 years of vigor after the big guns told them they'd be dead in a year, and have very often beaten those big guns to new applications by decades (Johns Hopkins is just starting to boast about successes with some treatments these mavericks have used for 20 years).

My next step, based on still another thousand hours of research over the past few months, will be to go see the mavericks at Compassionate Oncology Medical Group with a VERY high likelihood of implementing Dr. Leibowitz's Three-Pronged Protocol under his direct oversight but administered (i.e., injected) largely by my local medical oncologist seven minutes away from where I sit. I expect to make 6-10 trips to his Los Angeles clinic for hands-on results testing and drug tweaking over the next 13 months, then get the hell off ADT before it kills me, as it always does if done the way the big guns do it: 'Til Standard of Care Death Do Us Part. I've talked at great length with neighbors who now play tennis and soccer and travel the world 17-18 years after The Big Guns gave them a year to live. They credit their lives to COMG's expertise and personalized care. Just one example: Those neighbors tell me my first face-to-face consult with Dr. Leibowitz will be at LEASTa 6 to 7 hour sprint through my records ... he's that thorough. It starts at 6 PM ... after 3-4 hours with his partner (I've already sent them a hundred pages of medical records plus new labs they requested just Wednesday via fax to my local lab.)

I can't get even an hour from most oncologists. My local medical oncologist spent just minutes reviewing those records, his questions showed it, and I had a hell of a time getting him to even request, let alone look at, even the most basic and vital labs ... such as whether my newly initiated ADT drug is even DOING anything for me.

Do your husband a favor and Google Compassionate Oncology. Set aside a few days to study the extensive library of videos and papers on their website. They have patients from all over the world (50 just from Germany alone). And get this: unlike any reputable oncologist you'll find anywhere else, they will treat many newly diagnosed men very successfully WITHOUT surgery, radiation, or a lifetime of ADT. They consider their program superior to those archaic protocols for a carefully chosen, medically select group of new PC patients.

[Hidden in reply to Hidden]

Talk about standard of care hangups. I happened upon a Men's Health Conference and got to ask a Mayo doctor about Mayo's opinion on HIFU treatment. I got the same answer I've gotten elsewhere: results haven't been tabulated 10 years out so therefore it isn't an option they are interested in. How does SOC advance when treatment options are resisted using the old ten year rule? Good luck with your treatments at COMG and keep us posted. Does insurance / medicare cover this?

[Hidden in reply to Hidden]

I wouldn't call it a "hangup". It's just science: PC kills us so slowly that a mere 5 years doesn't tell us much. You give 1,000 PC patients fishing poles, you gouge out the next 1,000 men's prostates, you cook the next 1,000 men's crotches, you make the next 1,000 drink their own urine, the next 1,000 get some horrible drugs, then you watch them all and see how long it takes them to get metastases, then how long it takes them to succumb.

At 5 years the main difference between those five cohorts is the side effects, so all you learned was that SEs suck. We already knew that. But then the institution running the study is told, "Crap or get off the pot if you want any more money or expect to get published", so the headlines scream, "Prostate cancer is harmless; it's the treatments we need to worry about".

However, at TEN years, they've started to drop dead, and at 15 years the cohorts look VERY different. But anyone who didn't publish sooner than that is bankrupt and forgotten. It's sort of like planting 5,000 acorns to find out which ones produce the longest-lasting trees.

I understand that the FDA, Medicare, other insurers, etc. approve/cover COMG's patented 9- or 13-month Three-Pronged Protocol treatments (the Total Hormone Blockade, the months on chemo, and their anti-angiogenesis cocktail). I'm sure it also covers the much less onerous drugs (primarily Finasteride, IIRC) many of their patients take for the rest of their lives. I'm not sure about their subsequent high-T treatment some men qualify for, but it's just T cream, so I wouldn't expect it to cost much.

[Hidden in reply to Hidden]

I was on T cream for a month and a half for low T and fatigue. After a month and a half I discontinued it when it didn't provide much benefit. I recalled the "gasoline on the fire" analogy with regards to the risks associated with prostate cancer. Sure enough a year later I was diagnosed with prostate cancer. Could have been a coincidence. There is a local "compounding house" that was able to whip up this concoction for cheaper than the big pharma prescription cream somehow. It was $65 a month a couple of years ago. The regular prescription stuff can be over $200 a month.

[Hidden in reply to Hidden]

One doesn't just "take T" to fight prostate cancer any more than they would "pop taxotere" and call it chemotherapy or suck on dynamite sticks to stop angina attacks. In each case, a highly specialized physician (a uniquely trained PC oncologist, in our case) tests the patient thoroughly, decides whether he's a candidate for treatment, prescribes the right dosage and schedule, tests continually throughout the process, decides whether it's working, etc. Of course, this all requires an enlightened oncologist who no longer believes in the gasoline model of prostate cancer treatment. They are hard to find, but increasing in number as evidence piles up against the gasoline model.

Prostate cancer's gestation period is many decades, not one year. You and I had since we were young men.

[Hidden in reply to Hidden]

No, I know that. I am just relating that I took T and then developed prostate cancer. There's debate on whether T supplements are dangerous in that regard. I am interested in that BAT strategy that alternates ADT with T treatments. Good look with your specialized treatment regimen.

[Hidden in reply to Hidden]

Well, actually, you took T and then FOUND your PC. That $20 bill I found at the car wash was already there when I happened to look down; it didn't appear BECAUSE I looked down.

It's not even clear to me yet how "specialized" my upcoming treatment is. The newest drug in the lot is degarelix/Firmagon, and it's been on the FDA and insurance company approval lists for over a decade (why people still choose Lupron over it escapes me). My primary chemo agent will be Ye Olde Taxotere -- been around for generations -- just in lower but more frequent doses for the same old monthly quotient. And my anti-angiogenesis cocktail is just a proprietary mix of common drugs long known to promote apoptosis and deter tumor vascularization. Along with all three are other common meds used to fight nausea and other common SEs. I've already told them I couldn't care less about my hair, my present levels of continence or impotence, or a slight and temporary reddening at my Firmagon inject site. The deal-breakers are disabling chemobrain and neuropathy ... two nearly-ubiquitous and potentially awful SEs our medical oncologists don't tell us about.

Of course, I'm just now encountering studies showing that we usually get medically significant "ADT-brain" just from ADT, but at least it's not as bad, as instantaneous, as irreversible, or as likely as it is with chemo. OTOH, I just read last night from one of the world's leading experts in cancer-related cognitive impairment that two of the best ways to minimize it are studying new facts and writing ... the second and third foremost obsessions in my life. That researcher implores us to force ourselves to learn a new fact and write a few paragraphs daily.

Except for serious gym time and my sport, studying and writing are almost ALL I do almost EVERY waking moment of almost EVERY day. There's almost nothing I enjoy more. I've even reduced my news-watching time by several hours a day and my news-debating time by 100% because they PISS ME OFF too much.

[Hidden in reply to Hidden]

PCa might kill us slowly but incontinence and sexual dysfunction quality of life issues can show up almost immediately for the more invasive treatment 'modalities' (see, I can use medical jargon just like a doctor). It just seems odd that the least invasive treatment, promising the mildest quality of life problems, is the one being strenuously resisted by the medical establishment.

[Hidden in reply to Hidden]

I fully agree. But high T treatment has many constraints in terms of candidate selection criteria, administration protocols, and much more. I couldn't write much more than a few paragraphs about it, if that much, for the same reasons I couldn't have written a page about ADT or salvage radiation or chemotherapy once upon a time: they weren't staring me in the face yet. Funny how motivated we get when a new alligator surges to the head of the pack. I have no clue, for example, whether or when I might be a candidate for high-T treatment, or whether 90% or 10% of men are eligible.

My top priority right now, for example, is to find out as best as I can by Tuesday evening the benefits gained by early (with ADT) vs late (after ADT has failed) chemotherapy. I have until 9:00 Thursday morning to decide whether to sit in that chemo chair, and the odds appear extremely high that that decision will make of break the rest of my life. Is "Early's" survival benefit worth even 6 months, let alone 6 years, of its SEs? My last question before that decision will probably be, "What likely benefit will I throw away by waiting something like 6 months, or even until ADT fails, to decide about chemo?" (I have a pretty good idea what I may gain; it's the downsides of the delay that aren't at all clear.)

The medical establishment was taught the gasoline model and the slash/burn/poison solutions, just as they were taught that stress causes ulcers, sat fat causes high cholesterol, statins are good for almost everyone, high cholesterol causes heart disease, Type II diabetes can be mitigated only by drugs with their own SEs to worry about (and only early in the game), and PPIs are safe and desirable for years if we ever get heartburn. The youngest and most inquisitive doctors know better now, but they are bucking a chasm of momentum.

[Hidden in reply to Hidden]

What are you rreferring to? if you dont mind my asking...:

(Johns Hopkins is just starting to boast about successes with some treatments these mavericks have used for 20 years).

[Hidden in reply to Hidden]

One example is the BAT (bipolar androgen treatment) high-testosterone PC treatment J-H and Fred Hutch are jointly testing. It's being reported everywhere from PubMed to the health newsletters to forums like this one to Rolling Stone as a miracle cure for some men. Leibowitz has been doing it for 20 years. The sake goes for many of the drugs we now use: Leibowitz beat the FDA to them by 10-15 years.

I would LOVE to still be around to see which side wins the pissing contest between the DNA-changes-cause-cancer side and the cancer-causes-DNA-changes side. The treatments would be as different as night vs a monkey wrench. OTOH, ISIS will get nuclear weapons first, or at the very least an EMP burst over Kansas will kill most Americans, and I don't want to be around for that.

[Hidden]

I am not a Doctor, just someone who was Stage 4 PCa 13 years ago and PSA still remains undetectable. My last Lupron injection was seven years ago. First, researchers discovered how to kill cancer in 1978. The only problem was how to kill cancer with out killing the patient. So much of the research has been along the lines or new agents and dosages that were safe for humans and still kill the cancer.

I have no idea of where your husband is at this point of his disease nor the strength of his body to fight invasive cells mutating and destroying. Nor, his age..... I am different from many patients in that I sought out chemotherapy first while my body was strong and the tumor burden minimal. A paradigm shift, if you will.

Within a year of PCa diagnosis and after primary treatment my PSA exploded and I had two mets on my spine. My decision, and we all have to make our own decision which none could ever be considered as wrong, was early chemo to kill this bastard rather than to sit around waiting for a known end.

I recommend Dr. Robert Amato in Houston, Texas. He is primarily in academia and research; and sees patients all over the world. I was extremely fortunate to be among his early cohort in this trial. And example for the protocol which I under went (Published in Cancer Chemother Pharmacol. 2013 Jun;71(6):1629-34. doi: 10.1007/s00280-013-2163-4. Epub 2013 Apr 21.)

A phase II trial of androgen deprivation therapy (ADT) plus chemotherapy as initial treatment for local failures or advanced prostate cancer. Enrolled patients received ADT in the form of leuprolide every 12 weeks for 24 months with bicalutamide initiating after the completion of chemotherapy. Chemotherapy consisted of ketoconazole and doxorubicin for weeks 1, 3, and 5 and estramustine and docetaxel and for weeks 2, 4 and 6. During weeks 7 and 8, no treatment was received.

Forty-six patients were enrolled, and forty-five patients were evaluable. Median progression-free survival (PFS) was 23.4 months. Median overall survival (OS) was 53.7 months. Out of 45 patients with measurable disease, 22 patients had an objective response: 9 patients achieved a complete response; 2 patients achieved a partial response; 10 patients achieved stable disease. Frequent grade 3 adverse events included elevated ALT (17 %), hypokalemia (13 %), and hypophosphatemia (13 %). Grade 4 adverse events were rare and included low bicarbonate (2 %), hypokalemia (2 %), leukocytopenia (2 %), and neutropenia (2 %).

I wish the best for your husband and Godspeed.

Gourd Dancer

[Polarbear66]

Thank you JamesAtlanta, very helpful.

I am 81; diagnosed with metastasis into the bones 4 months ago and put on to Xtandi which so far has pulled down PSA from 16 to 11. Only outward signs are lethargy. However is any one experiencing a declining ability to walk very far which has been going on for over two years. I had assumed it was worsening spinal scoliosis which I have had for many years. But the mets go into hips and leg early on and I am wondering now whether this was been the cause wiyhout my knowing. Mobility is important for me as I live in the country, and do not want to ignore other possible treatment for the walking if it is not the metastasis.

Any info would be welcome.