Since early ADT did not offer much benefit to OS it looks like it might make more sense to delay ADT and thereby delay CRPC which is the fatal form of the disease.
Gus
ADT and PSA Only Recurrence - Advanced Prostate...
ADT and PSA Only Recurrence
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gusgold
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•
Gus, Ok they see no difference, but maybe that too is an interesting conclusion. ADT appears to have done no harm from side effects, at least to the extent of [not] increasing mortality from other causes. Did I read that right? Plus they clearly cherry picked their candidates. A guy may have started with psa-only but may then have developed mets-how soon were those identified and how soon was this guy "censored" from the group?
herb
So they are asking, after initial treatement for curative effect, upon PSA relapse should we do ADT immediately or wait for a while? So they are not asking about salvage radiation, which would still be done, or even as an adjuvant to surgery. But could you not with as much logic ask whether ADT should not be delayed in the case of men newly DX with metastatic prostate cancer?
So would that mean treat hose people with chemo only rather than the staampede combination of chemo and adt?
• in reply to
Of course I am proponent of ADT and Chemo. It is the only way known to cure Stage 4 PCa.
Gourd Dancer
Kevinski65• in reply to
I thought you couldn't cure stage 4 ...
• in reply toKevinski65
Well that depends.my research medical oncologist said I was in February 2010. He had me stop Lupron injections to prove it. Tens months later I still doubted, and he had me use Androgel in low doses to jump start my testosterone. It never came back. The next year with PSA <0.1 and hsT ranging between 550 and 750, I started to come around. It wasn’t until November 2016, after a nuclear bone scan and soft tissue CT scan, did I buy in 100%.
I still do quarterly blood work; two weeks ago, PSA was undetectable, hsT right at 200 (note T varies depending on when I apply the 4 mg of Androgel).
Search this group and look at previous posts or google, gourd Dancer advanced prostate cancer, for details. The trial which I underwent in 2004 used, Adrimyacin and Taxotere alternating every week in three eight week cycles. Week 7&8 no infusions. Additionally each infusion drug was accompanied by orals.... Ketoconazole and Estramustine each infusion week. Continued with Lupron /Eligard. Plus 30 mg of Prednisone daily for 180 days of the trial duration.
I can’t tell you why, other that it is a similar protocol for breast cancer today. Prostate and breast cancers are related. And, I started the trial within two months of confirmed metastatic lesions.
I had one medical oncologist tell me elevens years that it would never work. Last year my current Urologist, knew of Dr Amato’s research and was excited.
Fifteen years later at age 72, I know that I have been very fortunate. I also recognize that mine and the eight others with complete responses, are atypical. I am so glad that I went the path of academia and research oncology rather than community oncology.
In closing, there a person in this group who came later to the protocol after the trial and is still fighting the fight. Perhaps he will comment. One day, there will be more, until then, keep kicking the bastard.
Gourd Dancer
Kevinski65• in reply to
My own case is atypical. Initially diagnosed with Gleason 9, PSA 31, 5 month doubling time, stage M1, 3 bone mets, one slightly enlarged lymph node, I started Lupron and casodex (4 weeks for flair). PSA went to 0.2 for 2.5 years. It then went up 3 times to 2.8. I then went in a clinical trial at NIH on the prostvac Xtandi, clinical trial. It was 2 tiered. One group prostvac and Xtandi, the other Xtandi only. I got in the Xtandi only group. It's now been 4.5 years on Xtandi ( and Lupron which both groups had to continue to take). All bone mets are non detectable , PSA is undetectable for 4.5 years. At NIH you get tests up the kazoo. Blood tests...17 vials , they test everything. It's all been normal for 4.5 years. Pet scan, cat scan, bone scans all normal. Occasionally I get a yearly zometa dose, after a bone density test showing osteopenia. The only thing unusual that I did was take supplements during the Lupron phase of 2.5 years. Since there are thousands of vitamins and herbs that have some evidence of slowing down prostate cancer , I took 8 to 10 at a time for 2 months then switched to another 8 to 10. When I went into the trial I had to stop the herbs. The damage to the prostate cancer, in my view had been done. Yet I keep taking Lupron and Xtandi with perfect scores, while my body gets weaker. I was 59 and now I'm 66.5 years old. I want off hormone therapy but the doctors claim it might come back. What should I do? The side effects are non too sweet. I have unbelievable fatigue, weight gain, depression, hot flashes, non existent labido , all the QOL extravaganza's patients bitch about. I would love to quit hormone therapy or do something further and be done with the beast, any ideas? Going down the chemo route seems unlikely with these scores.
• in reply toKevinski65
Great on keeping the bastard at bay. After Brachytherapy and 25 sessions of IMRT, with a Gleason 4+3, I developed Mets at ten months - just turned 57. I learned a new word, “micro-metastases”. Doctor A told me that it mattered not which primary treatment I had under bone, it was too late as unseen cancer cells were floating in my lymphatic and vascular system, probably at initial diagnosis.
I don’t know much about the new drugs developed after I started treatment. Of I was aware of them as they were in the arsenal if the chemo-hormone trial failed.
GD
• in reply to
gourd_dancer
My thought is that at some point the prostate itself will need to be treated. Systemic therapy is not going to fix the prostate in enough cases. And my question was a way of "backing into" the idea that salvage radiation after RP failure does not seem THAT different medically from stage 4 "salvage" radiation after chemo and ADT with no RP. In both cases you have men who have received treatment, but are left with cancer remaining in the pelvic area. Why use radiation on one, and not the other. I am not of course saying that these are equivalent cases; but they do not seem all that different, either.
I had BCF in 2005 and in 2015 when a CAT scan showed pelvic lymph node involvement; I went on 150 mg. of Casodex.
Rich
BigRich,
What tx did you do from
2005-2015?
Any delay is a QOL gain. -Patrick
My oncologist is considered one of the "rock stars" in the pc world and his view has not been changed by the TOAD study or any of the others. He starts ADT at a psa somewhere between 5 and 20, depending on psa velocity, with or without mets.
• in reply towoodpecker43
Re Woody's "My oncologist is considered one of the "rock stars" ... [and] starts ADT at a psa somewhere between 5 and 20, depending on psa velocity, with or without mets."
That's a common criterion and prescription in the U.S. Pacific NW, such as at Seattle's Fred Hutch. In the U.S. Midwest region, such as at the Mayo Clinic, the norm is to not treat PSA but hold off until they find some actual CANCER to treat. They have waited until 4-digit PSAs (i.e., > 1000) to treat some men because it's cancer, not PSAs, that damage our organs. (New England, such as Johns Hopkins, has some third paradigm , and I don't know how they do it in Texas.) There are lots of rock stars at all those institutions; who among us can tell who's right ? I chose the guys who think like I do: Why ruin a man's QOL just because a computer printout says his cancer is returning?
Woody: 5-20 that's a pretty wide range. Also, is it ADT-1,-2, -3 or now, -4? Am I right in assuming if DT is long he waits longer and the reverse if DT is short?
herb s.
Two sentences from that link jump right off the page for me:
• "The optimal timing to start ADT in patients with rising PSA as the only sign of relapse is unknown."
• "Our study suggests little or no survival benefit of immediate vs deferred ADT initiation (at clinical progression or at least two years after PSA relapse) among PC patients with PSA-only relapse."
If the survival outcomes are not clearly, preferably profoundly, superior for early ADT, why degrade our QOL for it? I get it that some men value longevity as not just their foremost goal but their ONLY goal, but that's a personal choice many or most of us do not share. My early oncs really wanted me on adjuvant ADT as soon as my surgery healed up. They even talked me into a 28-day free trial Lupron injection, claiming (falsely, according to the literature) that it would induce all the SEs for me to evaluate.
28 days and hundreds of peer-reviewed studies later, I called BS on them and postponed ADT until it was necessary. (Notice all the references to ME and MY CASE; we each have our own reactions and criteria, but the decision process is almost universal. Here's how mine has evolved, in case it's of illustrative value to the next guy.) So when is ADT necessary for ME?
• At BCR (PSA = 0.2)? No way; my DT was 24 months and climbing. I'd be way past 100 years old before I'd care that I had PC.
• Adjuvant to SRT? No way; SRT's benefit IN MY CASE was pegged by the MSK SRT outcome nomogram at rock bottom, extreme SEs were estimated at virtually 100% likely FOR ME even before my prohibitive visceral layout was discovered, and 300 studies also cried BS on SRT, let alone ADT.
• When my DT dropped over a two-month period from 30 months and climbing to a very consistent 4 months? Nope; not while whac-a-mole still offered a good chance of setting my PSA back by years without SEs.
• Three years later, when scans finally showed that whac-a-mole was useless as evidenced by the appearance of MANY scattered tiny mets? Not yet; we have a little time to do some more testing and to research an array of treatment methods and sources.
• When I've chosen a treatment and a source, my PSA is 50, my DT is still 4 months, and my PC is still just a number on paper and a speck on the state-of-the-art scan (no other scans can see it yet)? Umm ... YES! The crap is airborne towards the fan and symptoms and pathology (damage) are imminent; it's TIME. Let's try to stop this locomotive or even put it into reverse with ADT even though it WILL devastate MY lifestyle.
But, wait; which ADT drug ... Lupron or Firmagon? Dig, dig, dig ... OK ... OK ... Firmagon. Let's get it on. But whose protocol ... a) Leibowitz's Three-Pronged Protocol, which includes triple blockade ADT, chemotherapy, and an antiangiogenic cocktail for a year and then replaces all three with a high-energy, low-drug permanent protocol offering a very high QOL but involves lots of air travel or b) Ye Olde Standard of Care Can of ADT and Can of Chemo ... i.e., Lupron + chemo until ya die ... 10 minutes from home? But, wait; there's a c) option: have Local Guy implement Leibowitz's protocol.
I LOVE no-brainers! We start Monday with a triple dose of Firmagon, followed by a month or two to evaluate its behavior in MY body, then chemotherapy. And if tests show that Leibowitz's protocol isn't working for me, Local Guy can always switch me to his SOC protocol with no time or progress wasted.
BUT WAIT! Hold the presses. What's with all this literature about chemo brain, brain fog, etc? Whaddaya mean it is not just sometimes but almost always devastating? Whaddaya mean it is usually permanent? Whaddaya mean that >50% of oncologists say, "It's all in your head. Just deal with. ACCEPT being a moron who can't make sense of a children's movie or book. I kept your heart beating, didn't I? Kwitcherbitchin!"
IQ tests, memory tests, MRIs, everyday behavior, 'round the clock confusion, inability to drive or to read a magazine or remember which shoe goes on which foot or that shoes go on feet, large scale observational evidence, saddened friends and family, your own head-banging frustration by even simple tasks or conversations, and more all show you to be a blithering idiot for the rest of your life, and the medical oncologist who gave you these drugs calls your complaints "bitching"? Whaddaya mean this near-Alzheimer's level of mental function can BEGIN years after chemo has stopped? What ever happened to, "First, Do No Harm, Doc?"
Monday just got harder, because not only do I get my first Firmagon injection, but I also buy my first in-depth, decision-making, treatment-planning telephone consultation with Leibowitz's clinic. It's time to rethink this whole plan, Doc. In particular, will your different chemo protocol GREATLY reduce the odds of chemo brain? If not, fugheddabout chemo. Even the most optimistic ADT scenarios rob me of my consciousness-altering sports. leaving me with only my intellect to buoy my spirits, accomplish anything, or pass the time for the rest of my life. If chemo is likely to rob me of even that, what, exactly, do you expect me to gain with all these drugs?
I'll take the ADT. I can always walk away if MY reactions to it are too far on the down side of the bell curve. I CAN take the same approach with chemo, but a) that would impact my choice of ADT treatment, b) its SEs are FAR worse and more likely permanent even if I quit, and c) walking away does no good if even the usual, let alone slightly worse cognitive impairment SEs prevail.
Got more digging to do before that phone call and its most fateful four questions:
1. Will your chemo administration protocol dramatically reduce chemo brain?
2. REALLY? Or is this just a sales pitch?
3. Should we even start your 3-pronged tx given a significant likelihood that I may drop the chemo prong?
4. Do my reservations and criteria even SUGGEST the idea of beginning, rather than ending, with bipolar testosterone treatment?
herb1• in reply to
Hi Its-baaaaaaaaaaak: Fraid the drugs have gotten to you already 
Sure we always worry about the side effects, but what if they don't happen, or don't happen badly? I'm probably that case. Been on IAD-3 for 15 yrs. Started with some cardio issues (urologist would not do surgery!), terrible family cardio history, wasn't really expecting long fight. Still here, cardio unchanged, still playing racquetball at 81 and walking my dog. Had some hot flashes, some peripheral neuropathy, but still here. I still contend it's easy to start and stop ADT if it gives you problems. But then you just have to go to something worse.
herb s
• in reply toherb1
Big difference, though, between ADT and chemo. And the odds are that your initial cancer was a G6 or non-metastatic G 3+4=7. I don't buy lottery tickets and I don't gamble against the house odds of 0% chance of cure, <10% chance of ANY benefit, and a 100% chance of devastating side effects ... and that was just MY OWN salvage radiation odds. Chemo's odds aren't much better, as best as I can tell yet.
I AM, however, encouraged by your ability to play racquetball on ADT at any age, let alone 81. But as you say, we can hop on and off ADT, whereas chemo brain begins on the day of the first dose, increases with more doses, and/or can strike ANYTIME after completion. It's a whole 'nuther level of threat and frustration.
In addition and by definition, for every man who gets 15 years out of ADT, there's one who gets nuthin' but side effects ... i.e., zero benefit. I prefer to base my plans on the most likely outcome.
herb1• in reply to
I did a quick check of chemobrain from AmCancer Soc (not my favorite). it doesn't sound as bad as you make it out, AND (A) IT MAY NOT OCCUR, (B) IT MAY NOT BE AS BAD OR DURABLE AS YOU EXPECT AND (C) IT MAY GO AWAY AFTER TREATMENT IS STOPPED. But you gotta do what you gotta do, pilgrim.
• in reply toherb1
I like my "MAYS" to go the other way, as in chemo MAY reduce us to bumbling idiots, with the implication that it seldom does. So far I'm seeing just the opposite.
AlanMeyer• in reply to
ItsBaaaack wrote:
"... We start Monday with a triple dose of Firmagon, followed by a month or two to evaluate its behavior in MY body, then chemotherapy. ..."
Personally, I'm glad you're starting treatment. If nothing else, it should knock down the cancer for enough time for you to continue your study without having your cancer running wild while you do it.
Here are some questions to consider when researching chemotherapy mental deficits.
1. Is it dose dependent? Fred Hutch researchers appear to say yes: fredhutch.org/en/treatment/...
2. How big a dose of chemo do you need? I've seen some recent claims that high dose chemotherapy is no more effective than lower dose chemo at killing cancer - a surprising finding. If it's true, that is VERY important to know and its very important to get no more chemo than you need.
3. What's the best dosing schedule? Some docs give a big dose every three weeks. Some docs give the same total dose, but split it into 1/3 dose once a week. Is that better in reducing brain side effects? Intuitively, the answer is yes, but we all know that cancer treatment can be very counter-intuitive.
4. Are there preparations that can help protect you?
5. What kind of patients get the best and worst cognitive results? Will your high standard of physical and intellectual conditioning be protective? I admit that this is a slippery question. Highly educated and intellectually active Alzheimer's patients do much better than others in protecting themselves from the performance effects of Alzheimer's, but maybe not in protecting themselves from the physical damage.
Best of luck.
Alan
• in reply toAlanMeyer
The evidence-based macrodoses (mg per chemo cycle) are fixed in stone for PC at about 75 mg/month (for docetaxel). That's one reason I'm starting with Leibowitz's protocol and will ask him very specifically whether his three 20-25 mg doses per month cause fewer SEs than the SOC one full dose. One would think that's the case, but then the brain-cellular devastation one single dose of chemo drugs induces is visible on a brain scan. The most fundamental cognitive degradation problems I see so far with chemo are that a) in cell cultures chemo drugs kill healthy brain cells at a much higher rate than they kill cancer cells and b) the rates, depths, and varieties of specific cognitive impairments many studies show are FAR higher than Fred Hutch's study suggests.
Just one small example: about 30% of ex-chemo patients in one study were actually able to return to work a few years after completing chemo, although in much less demanding and only part time jobs. In short, various specific and well-identified aspects of their former brain power is simply gone. The other 70% couldn't even do that. A MAJORITY of EX-chemo patients in some reports cannot even carry on a cocktail party conversation because they cannot remember what they or anyone else said two minutes ago and cannot dredge up the right word for "cat" or "hamburger". Some of those people were CEOs, neurosurgery department heads, rocket scientists, etc. and now they can't even make sense of a sitcom or a magazine article. The blow to their psyche is as devastating as the blow to their productivity and sense of self-worth.
I know when I get a blank stare from people in a conversation that I'm speaking too rapidly for them, so I slow down. Ex-chemo pts say they get stares of incomprehension all the time, but the problem isn't due to a speech habit; it's due to simply making no sense. That leaves at least a large minority of them unable to do much more than nod and smile and stay home, lest they face the embarrassment of looking like the idiots they have become. Whether that's 20% or 80% I don't know yet. A lot of the next month or two will be devoted to the study of such numbers.
A big question on Monday will be 'If I decide to pass on the chemo prong of your 3-prong program, what's the impact"? If his answer is "6-8 months of survival", the choice is a no-brainer. If we can't read, watch Mary Tyler Moore reruns, drive a car, shoot the breeze with friends, figure out how to use a toothbrush, remember whether we told our patient this morning to get radiation or surgery, etc., it's time to go, what did those 6-8 months gain anyone? The bigger question is , "How likely is that scenario FOR ME?" They're starting to find some answers to those questions.
As for protection afforded by high levels of performance going in ... such people can suffer the biggest blows, at least emotionally. They're often the ones who get most clinically depressed.
herb1• in reply to
Ok, chemo brain is real. But those nasty numbers and stats you're presenting: are they docetaxol in men with PCa or other chemo on other-cancer patients?
Again, I do read you and I'm not, for a moment, saying I disagree. Merely trying to add some thought to your BIG problem and need for decision-making. Good luck.
herb
it's ba-ck. Almost forgot. There is another protocol for docetaxol, I think it's 15 mg? every week instead of 75 every 3 wks. I have no comparison data.
• in reply toherb1
Leibowitz uses that at 20-25 mg / week, and my local/mainstream med onc uses it with patients who can't tolerate the 75s. That raises a big flag for me, and it says, "If some pts can't tolerate 75 mg, it must be worse than three 25s, so WHY GIVE 75s TO ANYONE? "
OK, if its SEs are mild and it's a long drive to the infusion clinic, what the heck ... give me the 75. But my clinic is <10 minutes away, and (maybe) 75s fry more brain cells, so let's go with the 25s.
I gotta admit, though, that I am not looking forward to a Firmagon shot every 28 days vs 6-month Lupron shots. But only the first Firmagon is a triple dose, and "They" say our bodies quickly adapt to them anyway.
herb1• in reply to
just looked back at your history info. I don't see any ref to Abiratarone or Xtandi. Did you try those along the way? Also, sounds stupid, but you are aware of the ice gloves and cap for docetaxol? It's supposed to help with side effects, but I'm not sure which.
herb
• in reply toherb1
I'm not far enough along yet for the mCRPC drugs you mention, but the more studies I read the farther I'm moving towards refusing chemo (docetaxel or anything else). Its overall odds of inducing permanent chemobrain have been pegged by many studies at 70-75%, greater with even slight impairment (I've noticed declines in word recall and multitasking ability for years) before initiating chemo. I'm considering testing for both the gene and the cognitive decline that predicts permanent and ever-worsening chemobrain in advance ... as though 90% isn't convincing enough.
And I haven't even studied the neuropathy and constipation SEs yet. Many chemo pts rate the latter as the most debilitating, horrible impact of their entire cancer experience, and I want to know how commonly neuropathy interferes with niceties such as walking across the room without falling. I fall or catch myself to prevent falling multiple times every day due in significant part to limited proprioceptive sensation in my feet and ankles. If their sensing abilities worsen at the same time ADT and low T are weakening me and drugs are impairing my balance, I'm going to get injured in no time.
Paranoid? Not at all, IMO. We need to know these things before sticking out our veins and tongues and placing the length and quality of our lives in the hands of doctors who flat don't have the time to share all their relevant knowledge with us. One guy in another online forum said his oncologist had never heard that ADT very strongly promotes diabetes! Another onc hadn't warned his pt about the crushing fatigue that's almost guaranteed w/ADT. My brother woke up the day after his first ADT shot believing he had broken his hip; the ER doc asked him "Didn't they warn you about this pain?" Almost NONE of my many doctors for decades knew that high triglycerides -- literally an infinitely better predictor than cholesterol of heart disease -- can be driven into the basement simply by dramatically reducing our consumption of empty carbs; no onerous drugs required. Ditto high blood pressure, obesity, Type II diabetes, and most other leading killers short of medical errors ... which brings us right back to the necessity of helping our providers do their jobs correctly. Any doctor or nurse who resents that does not deserve their shingle.
At 0900 tomorrow I will tell some nurse this: "This will offend you, but I must ask anyway: Have you been trained by the manufacturer specifically how to inject Firmagon? " I have, and if s/he has not, I will quiz her on its fine points such as NOT shaking the vial, injection angle, injection time, delaying needle withdrawal to let the medicine gel, and more. Ferring's approved injection video and verbal tutorial is right there on the manufacturer's website, and I'm not betting its efficacy or a few days of severe and apparently unnecessary side effects on the overworked nurse's diligence.
herb1• in reply to
its_baack. I still think you're being over-protective to the point of creating a placebo effect in reverse--you will CAUSE apparent side effects! I do agree about Firmagon injection, but instead of taking the ride, why not call and ask before hand? I know, MOnday 9A. But she and her colleagues have been doing it, PRESUMABLY WITH MINIMAL PROBLEMS, if in Liebowitz's office.
Good luck.
herb
• in reply toherb1
No, my local med onc will be handling my care, probably under Leibowitz's direction. Localdoc says his clinic injects Firmagon about once a week. My concern is that if injected like any other subcutaneous drug, Firmagon's unusual requirements (e.g., time to gel, extreme irritability to any tissue besides fat, and having to throw away the entire vial and order a new one if the needle touches muscle or blood vessel) may interfere with proper injection.
As for causing SEs ... it has been shown in trials that the best predictor of chemo-induced nausea is the belief that chemo will cause nausea. I'm just gonna have to trust what I've read and heard from many sources: "We have great new medicines that do a marvelous job of suppressing the puke reflex." Now let's just hope that includes the nausea and not just the puking part.
As much fun as I did NOT have last time I got food poisoning and lost 7 pounds overnight, I'm not too worried about nausea or puking. That can be mitigated with drugs, changing foods, and/or quitting or intermittent chemo. It's the permanent stuff that scares me, the stuff not one oncologist told me about despite their clear and present danger as described in countless studies and authoritative books.
Either they really don't read the literature, or the literature conceals those facts. I've seen clear proof of both of those problems.
herb1• in reply to
I understand your concerns, about Firmagon injection, docetaxel, anything. But [I thought] you had made your carefully analyzed decision to go with Liebowitz protocol, at local doc. Have faith in your own analysis and take the most positive attitude you can. In fact, your above statement "...predictor of chemo-induced nausea is the belief that chemo will cause nausea." Is it the belief? or the chemo?
As I've said to myself and to others: "at a point, you must choose a path and stay with it." I think this is it for you.
herb
• in reply toherb1
"Have faith in your own analysis and take the most positive attitude you can" summarizes my attitude perfectly, but the analysis take me a lot of time (if the issue is important). I read, discuss, ponder, etc. until my gut says "Eureka!". It's often that distinct.
The problem here is that it may not be up to me whose protocol to employ if Leibowitz gives me the boot if I reject early chemotherapy, and whether I reject it depends in part on what he says tomorrow. If it's, "Oh, well, yeah ... you'll spend the rest of your life a blithering idiot all right, but at least your heart will be beating. That's your only option here", we're done.
If it's "We can adapt to that; you're not the first pt to make that call. It'll cost you a few months of heartbeat, but you'll feel good until you go castrate resistant", I'm all in.
If it's "Well, our solution then is a course of ADT followed by bipolar T treatment. We've gone straight to that with some cases like yours and had very good results with monitoring your status and reverting to standard tx when necessary"
Lots of possibilities.
As for ,"...predictor of chemo-induced nausea is the belief that chemo will cause nausea." Is it the belief? or the chemo?"
Yes.
herb1• in reply to
It's back: That conversation is also OK, maybe not as expected, but it's still another fork (or fxxk) in the road. Pick one, ideally with maximum imput from credible sources, but nevertheless a pick.
• in reply toherb1
Or, as Yogi Berra said, "When you come to a fork in the road, take it."
• in reply toherb1
I am not comfortable with chemo every week. It's off the beaten path as I understand it, and I'd like to stay near it. I thought the 2 weeks of no treatment was to allow the non-cancer cells to recover.
• in reply to
The low-dose protocol is 3 weeks @ 1/3 the usual 75 mg dose, then a week off. Same total dose, same two weeks between cycles, but minus the concentration peaks and valleys. Sounds good on paper, but so did Thalidomide.
• in reply to
I cant make out what you are saying.
Do you want constant levels, no peaks and no valleys?
• in reply to
Dang! Am i getting ADT-brain awreddy?
Steadier blood levels seem logical, and two med oncs I know treat based on their experience that SEs may depend in part on the highest blood levels of drugs in our system. Leibowitz almost always spreads the SOC 75 mg of taxotere over three 25 (or 20) mg doses and claims FAR less toxic SEs, and my local med onc uses that approach with patients unwilling to accept another 75 mg dose. That may contribute (along with other standard drugs) Leibowitz's claim that their FDA- and Medicare-approved protocol strengthens our immune systems rather than suppressing them like the strict SOC protocols do.
• in reply toherb1
I fully understand your valid message, and am trying to dig some facts and trends from the research. So far it's leaving me with a two-page challenge to my oncologists to change my mind, led off by "I'm spring-loaded towards refusing chemotherapy, early OR late." I'm hoping, but with my eyes wide open and my BS filter on high alert, that they can change my mind.
Some of the research applies to chemo across the board, some specifically to PC pts. But the purpose of any ordinary chemotherapy is to poison virtually every cell in our body and hope the healthy cells survive at a higher rate than the malignant ones (they killed a lot of patients during chemo's early days). Apparently a LOT of vital brain cells do not survive, and imaging specialists have even identified those cells and explained how their destruction impairs specific facets of our cognitive function. IOW, they've learned a lot about the whether, the why, the how, the when, and the how long, leaving many of us in certain subsets of the "PC ward" with just one overriding question: "Why bother, if it adds nothing but misery to our lives and is not curative?"
herb1• in reply to
I agree. But what if you are the one at the extreme edge of the statistics?
• in reply toherb1
What if I'm at the other extreme?
That's why I bet on medians. Heck, even the medians say chemo is a losing gamble, in that it is statistically expected to add only miserable existence to the lives of PC patients. For example, I have zero regrets about rejecting my trusted long-time foremost oncologist's insistence to undergo SRT. Even before we proved it would produce absolutely nothing but bad SEs IN MY CASE, its expected (i.e., median) outcome was a) .08 odds of benefit and b) virtually 1.0 odds of bad SEs IN MY CASE. As an engineer who helped put man on the moon, I don't know any other way to make such important decisions. I'll play the long odds on trying a new restaurant, but not on passing on a blind curve in heavy truck traffic.
BigRich• in reply to
" Nope; not while whac-a-mole still offered a good chance of setting my PSA back by years without SEs." Is whac-a-mole a form of radiation or surgery or what drugs? Did you decide on chemo? I have a vested interest, for I am going to need to make some decisions soon regarding treatment.
Rich
• in reply toBigRich
Remember the action game "Whac-A-Mole", in which little moles popped at random up from holes in a board, and your objective was to pop them on the head with a mallet? In this case the moles are metastatic tumors showing up on special scans, and the objective is to spot and eradicate them one by one, or maybe up to 2 or 3, with pinpoint/focal radiation, surgery, or laser ablation. This may reset one's tumor burden and PSA to comfortable levels for years so they get to die of something else first with no side effects. Too many "moles", however, and it's time for systemic therapy such as chemo.
I went to Los Angeles/Leibowitz determined to reject chemotherapy because of its 0.8 to > 0.9 likelihood of permanently devastating chemobrain, according to scores of peer-reviewed studies with MD Anderson's vaunted neurological oncology clinic leading the way. When I have more time, I will post a summary of that Leibowitz trip. IMO, every man with PC owes it to himself to at least study Leibowitz's Compassionate Oncology website (it will take days) before choosing even his initial treatment, let alone subsequent treatments. Bottom line, after a nine-hour one-on-one consult with The Man ending after 3:00 AM, I accepted chemotherapy ... HIS chemotherapy. I've talked for hours with many of his patients who were given a year to live by leading national cancer research centers, followed Leibowitz's 3-Pronged Protocol (Google it), and are still playing soccer, playing and teaching tennis, teaching aerobics classes, traveling the world for fun and academically, and more ... 15-19 years later.
I've been on ADT now (Firmagon, not that old Lupron stuff) for 6 weeks and on chemo for 10 days and have observed and/or measured (in the gym) almost zero impact despite about a 99% drop in my T and PSA. The only exception is some throat mucositis I barely notice.
BigRich• in reply to
It has been 7 months, what did you decide to do? What where the results and side effects of treatments.
Your post was like reading a novel. I want to read the next chapter.
A fan,
Rich
Herb
You are right, he starts sooner with shorter dt. I have two newly discovered mets that he hopes to have treated with SBRT but no ADT at this time. He knows I want to put off ADT as long as possible but I really do not know how much my wishes influence his decisions. Probably not much.
I looked at the cited abstract. Here are two interesting things about it.
First, it appears to be a retrospective rather than a randomized clinical trial. If I'm reading the abstract correctly, they're comparing men who started ADT within 3 months after PSA failure vs. men who started more than 2 years after PSA failure. They do say of the late group: "... or when they presented with metastasis, symptoms or a short PSA doubling time." We'd have to read the full article carefully to figure out who went in which group and whether one group had more serious indications of cancer than the other. It seems possible that the study results are due to differences between the groups before ADT started since it wouldn't be surprising if men with less aggressive cancer deferred ADT longer than men with more aggressive cancer. If so, then the fact that overall survival in the two groups was similar is a win for the early ADT group, not an indication that early ADT makes little difference.
Secondly, I notice (assuming I understand all this - a big assumption) that the "all cause mortality" hazard ration ("HR") of 1.06 indicates that early ADT only conferred a 6% increase in lifespan. However I also see later on that the "prostate-cancer specific mortality HR was 1.48", which means that patients who ultimately died of prostate cancer lived 48% longer on early ADT as compared to the late ADT. What happened? Did early ADT kill a bunch of patients? What did they die of? Or am I misunderstanding the HR results? Incidentally, the 95% confidence intervals ("CI") on the mortality studies are pretty large, indicating that the statistics could be off more than one would like due to insufficient sample size, i.e., perhaps not a whole lot of men died during the study.
Fifteen years ago the consensus seemed to be that early ADT conferred no benefit. Then a lot of researchers were saying, No, if you get early ADT you'll live longer and citing studies to support that. Now we've got a study that supports the early approach.
It's all confusing to me. Conceivably, this study is exactly right. Conceivably it's right but comes to the wrong conclusion - i.e., a patient should get early ADT to hold off cancer death but take good care of his heart and other organs that might kill him if he's not careful. And conceivably the study is just wrong because the two groups were different for reasons other than ADT timing, or the number of deaths was too low give us an accurate answer.
This is just the kind of stuff to drive people crazy when they're trying to figure out what to do.
Alan
The men who got the big survival time improvements had the worst cases going in: visceral (mostly lung and liver) mets and/or bone mets. Those of us "unfortunate" enough to have lesser metastases received the lower benefits. I will be reading and re-reading those studies intensely over the next few weeks for decision fodder.
There is another factor to chemo....I have read hundreds of case histories. In the short run chemo lowers PSA and makes most guys feel a lot better. But, chemo selects for the most aggressive PCa cells by killing off maybe 90% of the cancer but not the 10%. Over time these aggressive cells establish tumors and the PCa comes back with a vengeance and is almost always fatal because no treatment works against it.
• in reply togusgold
Anyone who feels better on chemo must have had some extreme symptoms before. For them, though, there's nothing wrong with feeling better.
Wow. This turned into an incredible thread. I am reading it for the third time. So much information. So much to think about. This is probably one of the best threads I've read on HealthUnlocked. I feel its_basaak's anguish so strongly. I feel the desire to help just as strong. That's what this site is about. For what it's worth and I beg forgiveness from any I offend, but a lot of prayers are being said right now for IB. And thank you for not leaving, I can guarantee you men are reading and re-reading this as I post.
Many will benefit from your actions I think. Many may find answers to questions on these subjects that help them make a decision.
BDriggers.
There are a couple of guys I would like to see post, knowing the level of research and just plain old butt kicking intelligence.
Maybe they will step in. Add that to the reply's already posted and this thread becomes ( I can't think of a word here, but you get the point)
My only add to this conversation is this. I read a post that suggested that debilitating fatigue is guaranteed with ADT. That's simply not true in my experience. I was put on ADT immediately after I healed from surgery and have been on for a bit over a year. I have not had any issues with fatigue. I think this thread does do a good job of exposing the fact that every cancer is unique to that person and what SEs are acceptable is as well. I often read of men complaining that they might lose erections. Hell, I only wish that was the only issue I was facing. My PSA rose this last test from 0.5 to 0.1 so I'm facing the fact that I might be a cRPCA victim after only a year. I was hoping for 3 years on Lupron before facing that.
There are many ways of administering chemotherapy. ADT is no bowl of plumbs either and can be administered many ways. Long term use of ADT, they believe , may cause dementia. So I think the greater damage is in doing nothing and letting the cancer grow unchecked.
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