I'm new here but I feel for you all here so much to consider on ADT for 1 month. I guess these posts have helped me as I have almost finished 1 month on Bicalutamide. Today or tomorrow I will have the first injection of Zoladex. (don't like all this stuff going into my body and aim to get off it ASAP). Not one for the medicine or medication trap. I am doing as much as I can to reduce my very high PSA myself. My PSA on a random blod test was 2200 rechecked at 2000 then after the antibiotics (due to the biopsy G 4+4) the PSA was >1000. I have a bone scan scheduled for the 6th May.
BYW no side effects from anything so far! They say that will change?
This is what I a doing as well as medicine.
As we age our body loses the ability to hydrate so we are not able to hydrate as easily as we did, (I drink water and lots of it) water with more hydrogen ions and a pH of 9.5. one glass first thing in the morning @ 11.5pH, yes highly alkaline to neutralize or reduce the body acid. This water enters directly into the bloodstream so hydrates the body quickly, (athletes use it to hydrate whilst in competitive competition).
I ride a bike every day and have started on an upper body exercise lifting my own body weight only. I live in NZ and the exercise equipment is free to use in the parks.
I am reading about +ve and -ve ions and body balance, this and the water remove what the disease craves. So, in theory, it should kill/halt/reduce the "C".
Hey, I'm just learning so this is only giving you something I am looking into. It's natural makes a lot of sense and give me a focus with an endpoint.
On another point, I keep hearing stay or be positive. Does anyone know what that actually means? I already had a Positive Mental Attitude. Just wondering what other people do to maintain that?
From 100's of posts I have read medicine keeps you miserably alive and no end to it. This is my first post so take it easy on me :))
Al
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Treatments tear us down and might give us more years to live ...it’s all a crap shot . Bet on life ,do what you feel is best . All I know is that once APC starts chomping on you ,you then will do anything to survive if you have a good reason to live . If a guy was already depressed or suicidal before aBad pc dx he might not make it .Sav3 yourself ..
Thanks... cannot say it's a train I chose but I am looking to get off. I know one way or another I will get off. I wish to get off and on another train.
I will clarify I wanna get off the 'C' train Platform C. This Healthunlockedtrain is a good one I believe. I want to get on the free train platform 'N'
The train chose to hit us . Once we’re on , we’re going to the end of the line . Good song by the travelling willburies ..If we thought ourself invincible before APC , you’ll now see how fragile and precious life is , not to waste in anger or fear .. live , ,laugh cry . Us humans can help each other alone the way .. Peace brother . I’m glad you found HU . For me I chose to “ get on “ the train instead of letting it run me right over . I had to do treatments , or I would have bit the dust long ago . I do all of the holistic stuff too . Wish I could jump in that water behind you in the pic.
LuLu Hi again... That water behind me is a fishing bay on the north side of Malaaqua Island right next to the (now gone, thanks to Yolanda) Bantigie Cove Resort. I got married on the beach there a decade and a half ago :)) Love the water with all the starfish... You would love the water, anyone would just like Hawaii.
My thoughts are to take the medicine and beat it too. As I have no side effects thus far from Bicalutamide, they say the Zoladex will bring em???
I am just concerned about the internal irreversible dam, but I don't know? On a steep learning curve here.
Bantigie Resort ? Progress right? I’ve been going to fitness in Hawaii for 30 yrs . Not the same anymore . Too many tourist constantly . Follow drs advice . Live well and stay active friend ....🌵😎
Thanks, you can beatPC! Hey, I'm 72 this year can I get another 15 yrs, please...?
You are already better off than most here or anywhere by being able to live in NZ. Beautiful.
Because I waited to long and they drove my psa below .5 I could not have a pet scan to find it all. You will be getting a mri soon. Why not a pet scan? The best type to start with. Have all the info.
:))) You make me smile. I can feel the caring in your sharing ;). I am here and I have a lot more than most to live for. I am guessing Lulu is your wife... Nice!
I think that you have not been afraid to live life to its fullest ...thus you can handle whatever comes . Can’t tell another man what to do.. I want you to be around 20 more years of enjoying what you enjoy . I don’t envy you in starting out . So much weirdo psychology rapped up with living with APC on our back . I hope that you contain it ,don’t let bowl you over .. The fact is some guys would rather die than give up their ego .. You have reasons . No excuse to avoid treatments ...you owe it to those reasons and yourself . I think Auckland is the furthest airport from LA our west cost ...doesn’t matter wear we come from this is chemistry gone bad that we need to upright . However you do that is your choice . 100 yrs ago,a guy just plopped over in the field . No adt , fn radiation , no chemo . Mod med gives us hope for a few more years with help from above , we can’t waste it , or give up . Hang Loose Bra🤙🏼
So it's a few more years... ?? Not a few more months then... No, your right I've never been afraid to live... There is so much to do so many people we can all help. I'm not afraid to die yet But sure as hell I will give myself every effort to live for....
I worked for Exxon in El Sagundo for a short while over from the Bahamas
El Segundo Blvd is a Main Street in LA . You are a great addition to our rat pack . I’m pulling for you to beat this shit. Pc is a dirty dog . You can deal with it . Cheers Alan
Drugs stop or slow progression. Pet scans tell the story. After you know go to the best cancer center there is there and discuss treatments. There are guys here that know more options than you will get from the drs. Contained or not contained is the first question.
It will tell you if it has spread to your bones. The pet scan tells them more. At least an mri. Push it. Bone scan are the cheapest so insurance companies like it. You need a large cancer center now. Lots of guys here from Australia so good places all around you and probably in NZ. Hard to tell for sure here in Kansas. Love to get over there someday.
No the bone scan will not tell you about containment. That’s what they did for me. Scheduled surgery then a few days before the surgery decided to do the mri. Oops tumor out of the prostate inoperable. Pet scan or mri only way to know where it is. Bone scan is fine but don’t stop there.
3 bone mets ,2 lymph nodes and still had Prostatectomy. Best for me and no more pain. Stage 4 metastic and still pulled prostate. All positive margins and all neuro and veinous bundles out of prostate area G 9/10. No target for radiation, just big spider web throughout ab. area and around rectom . Chemo, ADT, Xtandi and PSA at 0.122 and holding.
I might wish I had it removed next year if i have a reoccurrence. No chance for radiation again. Told me I’d end up with a colostomy and at the time I thought radiation had a chance to get it. That was my choice. Guess we will see.
Once I got to 65 I was refused private insurance. So with the NHS Health Board, can't see where I can choose what I get?
This answer was really helpful :))
Alan
AON I have worked and lived all over the world (some 13 countries) I was told if I had a chance I should see NZ, this is my second time to live here. Yes come here for sure before you take the long vacation :))
Welcome! With such a high PSA, your scans might come back showing some metastatic spread of your disease. If it's confirmed, you will need to get it treated.
If you have not seen it yet, the Prostate Cancer Foundation NZ has a good website. You might find great benefits in a local face-to-face Prostate Cancer Support Group.
(A really high PSA is not always the end of the world. I had a PSA of 5,006 and a bone scan that lighted up like a Christmas Tree at a painful original diagnosis. That was 5 1/2 years ago. The treatments can work. The first year or two can bring a lot of emotional turmoil, though. That part is completely normal, too. Lots of experience here.)
You mentioned drinking water that's on the alkaline side of the PH range in hopes of affecting internal body chemistry & cancer cells or even killing or controlling your cancer entirely. This sound like the decades-old notion of "cancer loves acid".
I don't particularly go for it, myself.
In a nutshell, the blood carries carbon dioxide to the lungs, where it is exhaled. As carbon dioxide accumulates in the blood, the pH of the blood decreases (acidity increases). ... By adjusting the speed and depth of breathing, the brain and lungs keep the blood pH tightly regulated minute by minute. (It is why people who are anxious and over-breathing may pass out, and can begin to recover by breathing into a paper bag for a short while.) Similarly, the kidneys buffer acid/base levels in the body using other, somewhat slower chemical mechanisms, involving bicarbonate, and also sodium, potassium, phosphates, or ammonia. You breathe it out or you pee it out. The cancer still does its thing. (And, yes, inside a tumor things might get acidic if the rapidly growing cells are out-growing their blood supply, but that's a different issue from whole body PH regulation.)
Anyway, .... that's kind of the way I see it.
There are similar lines of thinking about the supposed PH values of Foods, ... all of which first go into one's stomach and get a bath in digestive stomach acid composed of hydrochloric acid, some salts, and natural buffering agents.
Most initial advanced prostate cancer treatments involve getting Testosterone levels down to therapeutic levels. Follow-on treatments or combinations of treatments go on from there.
I TRULY appreciate your desire to avoid ADT and wrestle daily with my own uncertainties about even starting it...... I have to admit that were I showing the kinds of PSA values you are I'd be leaning more toward doing it than I am in my current situation...( PSA 5.9 with slow doubling time).... There is no way I can say that your plans for how to stay ADT free are without merit... only that I would be more cautious than you are suggesting with the methods you have chosen..... let the upcoming scans be more of a guide.. If it turns out that you have distant metastases there appears to be a fair amount of evidence ( if the folks on this forum are any proof) that ADT can be life prolonging...... Still.... we don't really know the outcomes of those treated with ADT who are not on this forum ( who are, obviously, survivors) and how many of them survived for how long with or without ADT. I wish we knew more about TRUE survival times with and without ADT but most folks are more inclined to treat rather than take the chance on free progression..... Perhaps there are studies out there that have kept consistent track of those who have elected not to treat a recurrence ( though in your case I,m not clear that you in recurrence??....did I misread??)
By all means... if you are treating for the first time... get back to us regarding initial treatment choices.... there is a LOT of cumulative experience in this group to guide you.....
I am on the ADT and Rolodex... Oop's Zoladex. I want the best of both worlds to continue in this one, just like most would. I guess I feel super strong and positive. I'm rarely sick and have never been ill. I used to take simvastatin for cholesterol and aspirin for blood. Took me a few years to get off them. But been off for a few years now. I have my nature quiet time and exercise daily. I do my affirmations so self-talk is really positive.
I am guessing there are no collective statistics on no ADT, only one ADT usage.
Greetings alan and george... "This is my first post so take it easy on me :))" Okay I'll go easy on the both of you. So you both are under the down under... Beautiful country... You definitely will make it to 87 unless you waterboard yourself to death. I once drank that much water and had an uncontrollable urge to suck a fish. You will get used to all the meds that you'll be taken, it comes with the territory. If you decide to do something about your prostate, then post here for some ideas and from our past experiences. It's great that you've always have a great attitude just keep having one. Some of us get depressed about our Pca but I fight it with humor.
So this guy rode his bike into a tree the other day racing around his garden. Thankfully he was able to continue, his bark was worse than his bike.
Poor bike, more importantly, poor tree. it's funny how funny things are not funny but stupid things are. good point about the waterboarding. I have had an amazing life. My wife is beautiful and half my age... we have a 23-year-old daughter.
"But right now I have so many things to do I will never die"
Thanks so much "I feel better already" Depression is not an option :))
Oh thanks, John you have just given me a tag line "I won't die tomorrow"
“On another point, I keep hearing stay or be positive. Does anyone know what that actually means? I already had a Positive Mental Attitude. Just wondering what other people do to maintain that?”
I printed a sign that I put up at my desk. It reads: “Stay Positive!”
I hate to change the subject from the cancer we all love to talk about but I want to come to NZ soon. I want to stay for the length of the winter here which is 3 to 4 months. What part of the country should I look at. Still have to afford my Zytiga.
The whole country is good to look at. The North Island is warmer more often. I lived in New Plymouth a town of the normal route you can climb Mt Taranaki into the crater and stay in a free hut. Nicer warmer beaches in the North as is the capital City. Lots of hot springs all over the country, nice to relax meditate. Many people, like lots, travel via motorhome taking your accommodation with you.
I no longer have the larger accommodating home in the north island I live in the South Island. Christchurch. very English type of city. Although the cathedral is wrecked.
Hey gotta go ride my bike do my exercises tell you more later.
I was free of side effects for the first month, but then I got the Lupron 4 month shot.....Don't do that: debilitating side effects for me.....I have heard, read, that 1 month shots are much better at maintaining a consistent dose.
It is very common practice for many men to get Lupron Depot 3 months when they have advanced metastatic prostate cancer with relative stability. It sometimes hits a "sweet spot" between the time-release of different sized microspheres that are in the mixture to spread the dosage out over the interval, and the logistical convenience of monitoring status while on treatments, making/keeping appointments, and doing other things in one's life besides going to the doctor's office for an injection every month. I've been on Lupron Depot 3 mo. injections for about 5 1/2 years. I have known some men who do not do well with Lupron of any formulation. Some of them switched to Zoladex, administered as a small subcutaneous pellet implant beneath the skin of the abdomen, instead. Always tell your Doctor what's going on and how you are feeling.
thank you, I learn a lot from others. I just have a hard time understanding how anyone can get along with Lupron after my own terrible experience. I appreciate your feedback.
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Alan
ADT for almost 2 years
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opinion on timing of ADT vacation 
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