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Advanced Prostate Cancer
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Relatively new here and a lot confused.

I have been on this blog for about a month and have been very active reading just about every post and followed many. It is overwhelming how much experience and knowledge everyone is willing to share. (Please check my profile and initial post for my background, if interested).

The problem for me is there are so many differing opinions and drugs/scan types/protocols mentioned, the confusion just gets greater over a path that makes sense.

I am an analytical person and have made lists and spreadsheets of every option I have read about and tried to relate to their relative success rate. It seems to me that there are two overall issues (probably many more). Does an affected person who is willing to take the straight and narrow palliative approach (ADT plus some chemo or other therapy) with relatively no major side effect stay with it for as long as it lasts OR does one want to battle for as long as he can stand the side effects and costs over and above insurance, perhaps with major effects on quality of life, financial well-being, and family for possibly an extended period of time.

For many of you, that may represent a stupid dilemma but, even with a pc-specialized MO, so much still depends on one's body responses to whatever path is chosen - and there are so many. I could go on with this post, but this is enough to prompt some reply. It appears to me that almost everyone on this blog prefers the latter approach.

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Kooss,

It is difficult to decide what to do, and at times I have been frustrated by the choices. I went back and read your first post. This is purely my opinion (based upon nearly 11 years of dealing with this and supplemented by what I’ve learned here), but if I were you, I would probably stick with the eligard as long as it’s effective before doing anything else. For some men, that can be a long time.

Best to you,

Yost.

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Thanks for your input. My take on the situation was basically the same as your proposal and I am continuing on that path for now. But, my nature (my entire ex-consulting career) is being a problem solver and this whole exercise is certainly a problem needing a solution. Plus two other factors: 1. I am early in the attack (and almost 76!) and I don't want to miss meaningful action windows which may exist while I wait. 2: Contrarily, there are so many new things happening with pc almost weekly that a much more conclusive approach, or even a solution may occur while I wait making the whole idea of aggressive attacks moot, a. avoiding serious bodily harm and much pain; b. saving many family tears, emotions, and unnecessary care-giving hours; and c. preserving many wasted dollars. Interesting, but possible lethal, dilemma!

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Hello Kooss,

I looked at the information about you that you posted 9 days ago and the responses you got then. I think they were all pretty good.

At this point, I think the best thing you, or anyone facing a difficult disease with complicated choices, can do is to find the very best specialist to advise and treat you. I always recommend that people look at the National Cancer Institute list of Designated Cancer Centers. These are hospitals and clinics where advanced research is done, where the doctors are professors and or scientists as well as doctors, and where outcomes tend to be better than at average places. See:

cancer.gov/research/nci-rol...

It seems to me that your cancer is fairly aggressive and that your response to your initial hormone therapy has been good, but not terrific. So, if you are otherwise in good health, able to deal with some treatment side effects, and hope to live for some years yet if you can hold the cancer at bay, then additional therapy is a good idea. Chemotherapy, Zytiga, Xtandi, Lu-177, and possibly others, are all attractive. I agree with others that a highly capable medical oncologist who specializes in prostate cancer (or genito-urinary cancers of which PCa is the most common) and keeps up with the latest research is the best guy or gal to advise you on the best thing to try and when to try it.

Best of luck.

Alan

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Thank you for your insight and rather wise commentary. Maybe you become a consultant!

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Good Wednesday Morning kooss,

I have been in this battle for almost 6 years (please see bio for complete treatment history).

Dr. Charles "Snuffy" Myers was my primary Med Onc until his recent retirement and he believed in treating aggressive cancer aggressively, with multiple drugs/treatments at once. His belief was that you don't have the luxury of time with aggressive cancer and that using multiple drugs geometrically increases the possibility of one of the combo working.

I was blessed with Medicare, a Medicare supplement Plan F, and a Humana drug plan. Total retail drug cost in 2016 was $312,000, for which I paid a $20,000 copay (and I am still here)!

Many roads to take, but once you start, don't look back.

Best wishes. Never Give In.

Mark, Atlanta

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Thanks for your help. Wow, your insurance situation is great. Maybe I should look into Humana, but I am currently on my wife's retirement insurance (Aetna) and I guess I would have to wait to actually be dropped from the Aetna plan to be able to apply to a supplemental plan. I suppose I could just drop the dependent coverage myself, but then I might be screwed if I am not accepted by another plan.

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Never drop any coverage once you have prostate cancer. If you get kicked off your wife's policy, then you have options. I was originally on an AT&T retiree plan until they got rid of all of us. They gave us 1 year to obtain insurance such as Medicare Supplemental plus prescription drug coverage.

Be very careful as you never want to be uncovered!

Mark, Atlanta

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You are right that there are a myriad of different options and the same number of individual experiences and opinions of which is right or wrong. It sounds like I have a similar attitude toward this disease as you, eager to stay on top of every latest development under the fear that I will miss a window of opportunity. But in my two years of this battle I have learned that not every possible solution is appropriate for you. It's important to understand where in the disease progression you currently are, because different treatments are only approved (and paid for by insurance) for particular stages of your disease. For example, I am now castrate resistant, non-metastatic (at least no evidence of mets show up yet). Therefore, Zytiga and Xtandi are "next" treatments but not until the mets show up. So, I can research all I want to understand what might come next, but I am not eligible for most things yet, like Provenge for example. On Valentine's Day, a new treatment for my exact situation was approved by the FDA (apalutamide). So I understand that when the bicalutamide fails, that will be the next treatment. I also read that Xtandi has now been approved for castrate resistant, non metastatic too. So that is an additional option. I guess my point is that you need to understand where you are in the disease progression and then focus your attention on treatments for your current stage and perhaps the next. Best of luck!

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All the comments were good. I won't repeat. However, when you make a decision based on the available evidence, never second guess yourself.

Rich

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The options were straightforward 14 years ago when my surgery failed. There was Lupron (1985) with Casodex (Bicalutamide) (1995), followed by Taxotere (Docetaxel) (2004) when that failed.

Things didn't change for quite a while, but suddenly there was Zytiga (Abiraterone) for mCRPC (2011) & Xtandi (Enzalutamide) for mCRPC (2012) & others.

And now we see trials that play around with combinations & timing, so it must be confusing for someone just getting into this.

One thing hasn't changed for me. I was 56 in 2004, & I didn't like that Lupron (ADT) failed for most men within 18 to 24 months. & that CRPC - induced by ADT - was much harder to manage. Professor Johann de Bono (Royal Marsden) said much the same recently. As wonderful as Zytiga & Xtandi are (compared to the old options), resistance will occur, & resistant cells are even harder to manage.

So my feeling is, since therapies continue to be palliative, that (a) delay may be a good option for some, followed by (b) a combination of drugs that close as many paths of resistance as possible. I do not believe that sequential use of monotherapies make sense for younger men without comorbidities.

-Patrick

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Your last two sentences are particularly germane, and I think I agree. Thanks for your reply.

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I am 63, taking "the straight and narrow palliative approach." I am 18 months in with metastatic disease, orchiectomy 12/16, now enzalutimide. All the treatments do is slow it down, not cure it. I am embracing quality of life over treatment. My Great Aunt Thelma who lived to be 101, when asked how she was living so long, said "Stay away from doctors." So far, so good, but we'll see. Wish me luck.

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"Stay away from doctors." Good ole Aunt Thelma, she was my kind of person.

Well Kooss remember, analysis/paralysis.... Go for the GOLD.....

Welcome to a great site!!!

Good Luck and Good Health.

j-o-h-n Wednesday 02/28/2018 7:00 PM EST

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