Advanced Prostate Cancer
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Still ticking after stopping treatment

It has been five days since I stopped all treatment. The results have been nothing short of amazing. I have my old energy back, went for a walk today for the first time in many months. Worked around the house and my head feels like it used to...bright. This is so nice after months of fatigue, low energy and zero interest in the things I used to be interested in. So far so good. I am not claiming this will be how it is from now on but I wanted a break from treatment and I got it. It should go without saying that I am not recommending any of this for anyone. This is only one man's report.

As we all know here, each of us is different, someone may stop treatment and they could die in weeks/months, maybe me but so far I'm glad I gave this a chance.

Today I read an article in The Week which deals with progress in finding a male contraceptive. The drug dimethandrolone undecanoate (a mouthful, why can't they name new drugs names we can remember like Happy Farm or Warm Snuggles 10mg) is to reduce testosterone levels. The highest dose, 400mg had the most dramatic reductions in their T level. To quote: "While the men who took the drug gained a few pounds and their levels of HDL, or "good" cholesterol fell, none of them (83 men between 18 and 50 years old) experienced mood swings, organ damage, or any other serious side effects"

And here is the sentence that stood out for me: "Their hormone levels also recovered within days of stopping medication"

It seems my testosterone is increasing which ordinarily would put me in dangerous territory but so far so good. Stay tuned......

Wayne

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Hey Wayne,

Sounds good so far. Hoping it stays good for you. I think ITCandy replied to your other post...suggesting alternative therapies. Have you considered or tried any alternatives ? Keep fighting the good fight.

Take Care,

Monty

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No Monte, I have not tried any alternatives. It seems this would be defeating my decision to just stop everything. All of this might change and I may be asking you for alternatives but so far so good. Thanks.

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Even taking something as simple as Modified Citrus Pectin could delay metastaces. Worth it IMO.

Best.

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Wayne,

I suggest that you search for postings by Patrick O'Shea with titles that begin "Foods/Supplements-Vitamins". I don't think Patrick has found any magic bullets, but he's done some very diligent research and has some recommendations for over the counter dietary ideas that might give you some help.

Best of luck.

Alan

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Wayne, of course it is absolutely your own choice what you do or don't do on this path. I wish you good luck with whatever you do!

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Wayne I know exactly where your coming from. I'm on Xtandi and some days I feel really unable to function with a foggy brain. As an experiment I stopped the tablets for a few days and felt completely different with lots more energy.

Good luck with the new path you have chosen.

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Hi, Crab

Good move.

Not just a foggy brain but also apparently

" seizure or quickly worsening symptoms such as headache, decreased alertness, confusion, reduced eyesight, blurred vision or other visual problems"

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We all know where he’s coming from.

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Thanks LC. I'm looking at a new theory which is that no one with PC wants to die and anything that gives them hope is latched on to. Obviously this is no surprise however it looks like we chase every new med that comes along that might offer some hope and we keep upping the game until we run out of alternatives. This makes a kind of sense since most of us want to live as long as possible but at what cost? We all have to make that decision in the privacy of our own mediations or talks with our loved ones. Just the contemplation of our death can reveal a lot. Maybe we are just blindly following the lead of the drug companies (I have nothing against them). Perhaps some day we'll hear that all of the modalities of PC were wrong and if we just left things alone (I know, it takes courage) we might be better off but then of course we may be worse off and there is probably no retreat. Looking PC straight in the eye may reveal that PC is looking for a way out.

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Hi Wayne of course we wish you all the luck in the world with your choice but the "C" word is a clever opponent. I would seek out alternative treatments before nothing. I'm on Zytiga,Eligard,Xgeva,and Predison and so far only side effects are not flashes and occasionally dizzy if I take the meds too soon. You didn't mention what treatments you were on before you stopped. Anyway good luck in your Qwest we are all brothers in arms.

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I’m on the same meds. Only problem so far is lack of energy. I’ve been on these meds since September 2017. I had my prostate removed in 2008 but there was more cancer in the tissues than in the prostate. Gleason score 8.

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Congrats Wayne. Ditto for me. I'm 6 years out from 2012 diagnosis at age 56 (Gleason 4+5, T4-N0-M0 but no mets). After three courses of ADT, hyperthermia and high dose Vit C + artemisinin, and now 2.5 years out from IMRT, I still take modified citrus pectin, 81mg aspirin, and other supplements shown to promote apoptosis and prevent metastasis. Since stopping Firmagon (Sep 2016) my PSA has gone from 0.050 to 0.210. My MedOnc is concerned about the rise, but I told him my QofL is more important (at age 61) so 'let's just keep an eye out for any sign of mets'. He's willing to respect my wishes.

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That's some weird male contraceptive drug you described. Knocks your T down so you lose all interest and ability to have sex? I checked the calendar, it isn't April 1st.

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WayneA , you’re on a roll .. Enjoy life to the fullest.. Hope it just gets better and better for you... SOUNDS LIKE YOU ARE HAPPY, God Bless!

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Thanks, please keep up the reports. It’s helpful to know what one might expect and to how long.

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Wayne, what medication(s) did you stop? Please keep posting how you are doing. One always wonders if the treatment is worse than the disease. Trusting one's intuition about one's own situation is important.

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I left a comment on this today but you must not have seen it. I stopped Lupron shots & Casodex (generic).

The meds are to suppress testosterone as you know however the way I see it in order to suppress one must repress, in other words the treatment is to suppress/repress testosterone and that indicates to me that the meds are a sort of weight, a "load" on the psyche leading to all of the symptoms the drugs display. I feel as if a weight has been lifted but for how long I don't know but I'm sort of frolicking at the moment. :)

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I got it. Good for you!! My husband has metastatic PC and is just starting Provenge. He is on Lupron and Xtandi, and his motivation is lower and his brain is somewhat foggy, plus he sleeps 10 hours a night. His choice. I, myself, went through a serious neck cancer, had 3 surgeries, radiation and chemo. If I had kept taking the chemo one particular oncologist wanted me to, I am sure I would have been dead a year ago. I refused further chemo. The surgery was the necessary part. It takes a lot of guts to advocate and make your own choices. I personally would rather live a good life for a shorter time than a life of poor quality for a debatable longer time. The body has a lot of healing wisdom and properties. Look at trees with burls, woodpecker holes, and other damage that keep living on. Pura vida!

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Excellent post, sosilly6. Lots of wisdom there, anything but sosilly :-)

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Ha. "Sosilly" came to me after I had 3 other usernames denied by this site. That's what I think about usernames and passwords. Got to have a sense of humor above all. Your "whatsinaname is a good one!

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I know you're not going to believe this... but I stopped all my meds for two days and I had a dream that my j-o-h-n became a j-o-h-n-s-o-n again... and when I woke up my pajama string was sticking straight up in the air....darn it....

Good Luck and Good Health.

j-o-h-n Wednesday 04/11/2018 8:22 PM EDT

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Hi guys. I'm new to this site and not sure how this works. But I feel like I can maybe add a little as my dr is one of the few oncologists in the world That only does prostate cancer. That's all he does. Dr Mark Scholzin California. Anyway I'm On lupron & Zytega for bone met which when used together has proven more affective than either med alone. My dr told me that the key to getting thru the hormone treatment (and zero testosterone) is weight training. So I've done it religiously 3 days a week about an hour each time. Really really pushing myself . I even hired a trainer (tho you can easily do it on your own) and took off my shirt and said to him "make sure I don't look worse in a year". He said "if you look like that in a year I'll close the gym." Lol. Anyway I feel great. I've lost weight and I actually have muscles. I even have a decent sex life (albeit aided by Viagra). My PSA is down from 9 to .05. Just saying maybe weight training might help you get thru these Meds.

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So Viagra works with ED and zero libido? Maybe you haven't been on ADT for very long? It seems to get worse the longer you've been completely stripped of testosterone. Must try.

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It typically takes months to recover your T after ADT treatments. So I'm not sure that stopping Lupron and Casodex 5 days ago would really have much of an effect yet. But sometimes wishing makes it so. Our mental attitude has a big effect on how we feel so if you think stopping treatment is going to help you, it probably is. For now. But your title is interesting, "still ticking after stopping treatment?" how quickly do you think you'd progress after 1 week?

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I don't know. I'm at one week now. Stay tuned....... :)

Wakyne

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Superb reply, cfrees1. Rational and objective. Thanks.

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I totally understand why you chose to take a break. I watched my husband slowly go into what I call a vegetative state. Noticed a "recovery" to his old self after a forced break from the medication - only because of a snafu causing a delay to receiving Zytia rx.

Will be praying for you. Take care.

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My father stopped treatment over a month ago and has a good quality of life now. He also has his appetite back and doesn't stop eating.

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