Welcome new member Mark0 - G9 Stage 4

@PSA3DOT7 - Darned straight!

We're in to camping so at the onslot of this we replaced our aging/leaking model with a new top-of-the-line one and have plans to use it monthly for as long as we can. (so far 6 for 6mo's camping)

I've added some B-Complex along with B-12 supplements. While I questioned their usefulness at first they seem to have helped with restoring some energy. In the last week I've not felt nearly completely useless after work like I did before.

Come Friday we'll be joined by some very old friends for another trip of camping, picture taking and awesome eats.

Steelguy/Ray:

On the one hand this is nothing new that I have not well researched myself or my Dr's have not told me before. There are actually others here (as well as on other forums) that have similar cases and are doing well on the exact same treatment that I'm currently getting.

On the other hand being able to fly around the country and enlist relatives to apply experimental treatments must be a wonderful thing for YOU however be it a side effect of the ADT+ that I'm on or the fact that I simply don't have the same abilities (can't even think of flying) or resources I'm leaning towards finding attitudes+comments such as yours as mildly offensive.

I've read about a DR in Florida who has a fairly high CURE rate, he'll hit you with implants, EBRT AND Chemo - all at once. However besides having the ability to pay for his treatment you have to have the ability to put your life on "hold" for some extended period of time while you temporary move/live close to his treatment center. Then of course is the 'disclaimer' where nothing is a 'given' and those of us that fall into the 1-2% may also fall outside of his fairly high cure rate.

As far as 'exercise' goes, I count being able to get in/out of bed and being able to navigate the large expansive complex at work without stopping to catch my breath or grabbing something nearby to steady myself (to often) as 'exercise'. If I load myself up with energy drinks/coffee/B-12 I may find a few hours to do something other then heading straight for bed for a nap when I get home. The DR could, can and has prescribed anything he wants as far as 'exercise' goes, however its up to me and my energy level to be able to follow through with any of it.

Last but not least "bones". We've discussed that some medication for that may or very likely might be in my future. However there are a number of factors to consider. First being that 'significant' bone loss coming into play >5yrs of ADT and we're hoping for a +3yr run of ADT (it may be much less than that) and while I'm only shortly past my 2nd injection, there's plenty of time to decide to add a MED to counteract any long term bone loss if I get to be on anything resembling 'long term'.

I've recently known 3 other people with PCA.

"D" - got diagnosed about this time last year with PSA +1200. He has mets all over his body. His "G" score is very low, +low number of positive cores. He was 62 when diagnosed so retired then switched to SSI-DI and is being taken care of by Medicare. (only) He's getting ADT and Chemo treatments. His DR's expect to keep him alive a very long time.

"B" - got diagnosed a few months before I did. He was 76 at the time. Low "G" and similarly low stage, he's now fully recovered from RRP. He waved the follow up ADT.

"C" - was +80yrs when diagnosed. As I recall a very similar case to mine. High "G" score, PSA and sample %. He had no children or family. When his PCA evolved to HRPC ~3yrs later he signed up for pulling the plug. He's no longer with us.

While we may be of similar age it appears that we are at different stages of life and have different expectations. No male in my family has ever seen the other side of 70yrs so when I see 5-10yr possible outcomes I'm not shocked or dismayed in the least. I've only hastened my enjoyment of life schedule and will cross whatever bridge presented to me as it comes. (granted I do research and play ahead any of the possible outcomes and think out my possible reaction to them)

All we have is today. Enjoy it while it lasts.

Cheers,
Mark0.

Mark0 said...
Steelguy/Ray:

On the one hand this is nothing new that I have not well researched myself or my Dr's have not told me before. There are actually others here (as well as on other forums) that have similar cases and are doing well on the exact same treatment that I'm currently getting.

On the other hand being able to fly around the country and enlist relatives to apply experimental treatments must be a wonderful thing for YOU however be it a side effect of the ADT+ that I'm on or the fact that I simply don't have the same abilities (can't even think of flying) or resources I'm leaning towards finding attitudes+comments such as yours as mildly offensive.
.....

Mark,
PeterD has already said something like he would be careful not to offer you any more advice since he had offended you so badly while trying to be helpful. Which presumably is why anyone would come to a site like this, to get the thoughts of other folks with the same disease. Now you are offended by Steelguy's attempt to give you his thoughts. Maybe it is the treatment you are on, the shock of coming down with this disease as so many here have gone through, or maybe you are just easily offended?

It goes without saying that we will not all be in identical circumstances re: the details of our disease or our ability to get help. still, especially if I come here and post, it seems logical that I would want the groups thoughts, the thoughts of other guys who are having distress from being diagnosed and treated for PC. And if so, I don't see any reason to be offended if someone goes to the trouble to give me their thoughts about what I should do if possible, even if I reject their advice for my individual circumstances.

Of course, you will probably find my post offensive. But there it is.

Bill

Wow, this thread took an unexpectedly ugly turn....

Sorry to see that happen. Fortunately it's pretty rare.

Sorry I don't mean to offend anyone - I suppose people expect different things from a website.

What can I say - I'm on ADT+ and have some mood swings. I'm also of the belief that there's a BIG difference between support that is asked for, support that is offered and "support" that is pushed on someone who was nether looking or wanting the obvious agenda that was being "offered".

What I'd expect is to ask questions, offer stories of what I've been through and exchange ideas with others going through similar situations.

What I don't expect is to "walk in the door" and have people telling me what I NEED or HAVE to do.

I'm sure everyone is trying their best, having PCA is not a walk in the park.

Most of you know each other from years of hanging out in this forum. As a new comer you all are just "random internet typist #1" and "Random internet typist #2". I have no history with you people. I've read many of the stories and posts and my heart goes out to everyone suffering from PCA.

Again, maybe its the ADT+ treatment, maybe I've never liked pushy people offering things I don't need or telling me I should get things I can't possibly have. Or maybe I NEED to rethink my participation in this forum.

Lifes to short.
I'm out of here.
Best of luck to all of you.

Forgive me MrModerator but I was not looking or asking for any doctor advice or suggestions.

Forgive me for being off topic, but why post anything if not looking for advice or suggestions, what's your Raison d'être

An38 said...
Mark,

It must be the ADT. It is the most generous explanation.

You come to a support forum and try to cherry pick the kind of support you want. If you don't like some people's advice then you are free to ignore it. It might be useful to other people who are in your position in the future.

Just because the thread started with your post does not mean you own the post. You do not get to be rude to the people who out of their kindness choose to help you.

I am sorry that you have PCa, I wish you the best.

An

Right, I thought it might be the treatment and/or the shock/emotional devastation of the disease, si I don't want to be too harsh in my response. Still, when Mark says:
" I'm also of the belief that there's a BIG difference between support that is asked for, support that is offered and "support" that is pushed on someone who was nether looking or wanting the obvious agenda that was being "offered".

What I'd expect is to ask questions, offer stories of what I've been through and exchange ideas with others going through similar situations.

What I don't expect is to "walk in the door" and have people telling me what I NEED or HAVE to do.",

I'm not at all sure how any forum is going to be able to meet his requirements. I don't know how we are supposed to be able to know exactly what kind of response meets his precise requirements to avoid offense. Plus I did not see a single response requiring him to do anything, as that would be an impossibility. Because how can we tell Mark the he HAS to do anything, how are we going to enforce that requirement from us? Obviously any such worded post is just that persons strong opinion and suggestion because they want the best for Mark, and that is what is best in their opinion. I do not know how one takes offense from such? And what exactly are the rules that must be tiptoed around to avoid an offense? In the end, why would anyone even try?

No matter, looks like Mark is gone. I hope the absolute best for him, and that he finds some helpful advice at a forum which he finds free of so many offensive folks like you guys. wink, wink.

Guys,

There are lots of reasons why guys come to this forum. One of them is simply to vent. While there are rules about decorum here there is no rule about grouchiness. If there were most of us would be gone pretty quickly.

Mark is welcome to participate here if he wishes. Somehow he and we got off on the wrong foot. Perhaps that can yet be mended.