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Cancer: Prostate Message Board


Cancer: Prostate Board Index


[COLOR="DarkGreen"]Hi Lklklo,

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

[QUOTE=Lklklo;4668268]...
I too do not quite understanding why the drug switch except that he said zoladex is a more recent drug. [/QUOTE]

[COLOR="darkgreen"]I have been on intermittent triple blocade but with Lupron instead of Zoladex. I've always heard they were equally effective, but in the US my impression is that Zoladex is now less expensive. You could ask the doctor why he switched. It might have been simply a supply matter.[/COLOR]

[QUOTE]He hopes to see further drop and depending on the next reading he may put me on monohormone therapy. He is pretty pleased with the results too.[/QUOTE]

[COLOR="darkgreen"]Yes, that's a wonderful plunge downward in PSA! :D However, the experts in hormonal therapy that I've been following for 11 years would not want to do switch to monotherapy! :( Instead, they would be very serious about wanting to get that PSA at least to <0.05 using an ultrasensitive PSA test, ideally one sensitive to <0.01. They would use not only an LHRH-agonist drug (Lupron, Zoladex, other choices) but also bicalutamide (Casodex) plus a 5-alpha reductase inhibitor, finasteride or Avodart. They would use all three now and not wait. If that PSA stopped falling short of the goal, they would probably add other therapy, such as Leukine.

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

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

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

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

[QUOTE]Judging from the little i ve read, am concerned about the refractory issue looming ahead[/QUOTE]

[COLOR="darkgreen"]That is a real issue, happening to almost all of us in time. However, under triple blockade, it seems to be much delayed for many, even for some of us with quite advanced cases. Many of us do fine for around 10 to 11 years, with some of us cruising for many years beyond that point. Meanwhile, treatments keep improving, and more options open up. :cool:

Good luck and please keep asking questions.

Take care,

Jim :wave:[/COLOR]
[COLOR="DarkGreen"]Hi Lklklo,

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

[QUOTE=Lklklo;4670001]Jim

Thanks for weighing in on our discussion.[/QUOTE]

[COLOR="darkgreen"]You're welcome. We are here to help and learn from each other.[/COLOR]

[QUOTE]I have read your case and am comforted by your amazing fight against this silent killer. One moment I thought I was in the pink of health (no pain, no discernable symptoms) the next I was staring down the abyss of despair and hopelessness.[/QUOTE]

[COLOR="darkgreen"]I too thought I was in great health. However, I was way overdue for a physical exam at age 56 back in 1999, and I had never had a PSA. I was training for racewalking, trying to bring my time for a mile down from around 10 minutes 15 seconds to the 9 minutes 30 seconds I had achieved in earlier years. That's really fast for my age. Despite regular training, I was not succeeding. Also, one time after hydrating with several glasses of water before the racewalk workout, I experienced a terrific urgency when I arrived at the track and experienced great relief that the portable toilet was not locked. These circumstances persuaded me to get that physical, and I insisted on a PSA. However, like you, I was expecting a clean bill of health. I was shocked at my high PSA, 113.6 (as was the embarrassed doctor). I then commenced the early part of the journey that you are now embarked on.[/COLOR]

[QUOTE]Both you and Baptista are doing a great job providing useful info to the newbies who in most cases like me are still recovering from the devastating reality. We need to hear from the guys " on the return journey". Keep the information flowing![/QUOTE]

[COLOR="darkgreen"]I hope you will someday soon be in the same place and will be able to help others. It meant a lot to me when I heard a fellow survivor with a challenging case ask questions and make comments at one of the first education and support group meetings I attended. The speaker was a medical oncologist who treated some prostate cancer patients, but it was clear that the survivor knew much more about some of the advances in treatment than the speaker. I'm trying to pay-it-forward for the great benefits I've experienced from fellow survivors and dedicated physicians.[/COLOR]

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

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

[COLOR="darkgreen"]The cancer cells do not seem to become less aggressive (lower Gleason), but, in addition to the process Baptista mentioned, they can occasionally become more aggressive (higher Gleason) due to mutations. That's one of the reasons a lot of us believe that antioxidants in diet and supplements are important; antioxidants appear to give some protection against additional mutations.

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

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

[COLOR="darkgreen"]Here are some key points to bear in mind about prognoses for such patients, or any prostate cancer patients. Baptista makes a critical point that prognosis is based on research, and research, by its nature, has to be based on past events. With progress in prostate cancer advancing so rapidly, you and all of us need to be skeptical about predictions.

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

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

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

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

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

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

[COLOR="darkgreen"]I'm building on Baptista's helpful comment. I believe that the leading experts he mentioned would want to see an excellent response to triple hormonal blockade before letting you go intermittent. I think Dr. Tucker, also an expert, would also want that. Specifically, if you could get your PSA down to <0.05 on triple blockade, or, even better, <0.01, I believe they would feel that intermittent blockade would work for you. Such success, probably backed with imagery showing the metestatic points had shrunk or disappeared, would make it unlikely that the cancer would spread substantially while taking a vacation from the heavy duty drugs. If you could not get that low, they would want to move on to some other approaches, such as possibly second line hormonal blockade, the drug Leukine, possibly Provenge, possibly chemo, or other options. [/COLOR]

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

Thanks again and keep up the good work!

Lklklo[/QUOTE]

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

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

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

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

Take care,

Jim :wave:[/COLOR]





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