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Posted 4/12/2012 2:41 AM (GMT 0)
Thanks, Mag. I am never feeling hopeless, but take more of a realist's approach to this and the other obstacales I have faced in my life. I also don't expect some magic fairy to come along and make everything right. One really never knows the ending for sure, in advance, until the end comes. Who knows what might happen between now and then. I just don't fret and worry about things, serves no useful purpose. Death rides a dark horse, and has all of our names, we simply don't know the how, when, and where part in advance, and perhaps its good that we don't. All of us has an expiration date, lol. So why worry? Thanks for being there for me, as always.

david
Posted 4/12/2012 2:45 AM (GMT 0)
David,
I've followed your journey from the first day that I joined HW. You provided me with a lot of help and support. I feel hopeless in trying to return the favor. Your rapid PSA rise and all the pain you are dealing with is more than many of us can deal with. All I can offer is a prayer. I hope that the chemo and or HT will give you some relief. Best wishes.
Posted 4/12/2012 3:36 AM (GMT 0)
Sheldon:

I was Monday morning quarterbacking a year ago. This is more like Thursday evening quarterbacking.

David -- it is the opposite of easy to comment on someone else's treatment. This board is for support, I know. But just going along and saying yes your doctor is wonderful and compassionate and looks at the whole person and doesn't treat a number yada yada yada is fine and supportive. Many on this BB have done that. But I open my eyes and THE EMPEROR HAS NO CLOTHES. I am not going to be complicit in this and just support what you do when it seems to defy reason.

Your use of the term "AS" makes no sense with your stats.

There are plenty of controversies in PC, such as which tx to employ and when to employ said tx., but this isn't one of them.

Sorry, David, suffering from this expanding horrible pain that you finally acknowledge may well be more than radiation damage pain does not sound like a good QOL. But if HT or chemo does retard the PC and hence help with the pain, then it makes sense to go that route. That would improve QOL.

Yeah, we are all going to go sometimes. Some of us might have PC that will defy all tx. and just continue without any diminution. I fear that might be my plight and it might be yours. But you seem to assume that is the case with you. The reality is that 90% of those who get on HT have some success with it for awhile. At our stage, it is a delay game.

Frankly, I don't understand your doctors doing nothing (that is what they have been doing).

Sorry if you resent this. Perhaps I am overstepping my bounds by talking this bluntly. Or maybe not. You see a top-notch caring, compassionate doctor. I see something that strays so far from the standard of care... well...let me stop at this point.

We have been around this block before.

You and the rest of my HW brothers have been wonderfully supportive so I hope this won't engender any hard feelings. Feel free to ignore my comments but understand that it is written out of a deep concern for you.

Mel

 

Posted 4/12/2012 3:37 AM (GMT 0)
Ed, your continued friendship and support is all I can ask of you, and you have been a consistent friend at that. Well appreciated by me. Thank you.

As far as the pain goes, I am thankful that we live in a time and age, where proper pain management exists, and through the miracle of the right combination of pain meds, that those in chronic pain can live a better life.

David
Posted 4/12/2012 3:56 AM (GMT 0)
David,

I am so sorry that you didn't get better news. I can't imagine what you must be feeling. Many here think you should follow a different course of treatment, but they aren't you. Only you can make your decisions.

While I would seek opinions from other doctors, you seem to be at peace with your decisions and we here should, and do, support your choices. I hope you continue to find peace and relief from your pain.
Posted 4/12/2012 4:08 AM (GMT 0)
Hi again David, just a thought on QOL, a friend of mine has bowel and liver cancer, he was dx 18 months ago, in that time, because of the chemo, he has had to almost give up everything, the chemo makes him sick and fatigued, he loved playing in our bowling team,riding his Harley, camping in his RV, but has had to give all that up, his QOL is zero, and unfortunatley the end result is going to be the same, so he has spent all that time in a sick state, and not hardly able to do anything.

Makes me wonder whether it's all worth it, sometimes.

Mal.
Posted 4/12/2012 4:19 AM (GMT 0)
David,

So sorry to hear that. You have been a true trooper for a long time.

JT

Posted 4/12/2012 4:19 AM (GMT 0)
frack, thanks for the support and care

mel, you never know when to back off with me, you are one step away from being the first person i have blocked on hw, i really don't believe in censorship. some of your last remarks borderline as being overly opinionated, and very insulting. you might as well come out and say i am stupid for following the course that i feel is right for me. for a guy that is only seeing part of the picture, you make lots of false assumptions about the standard and level of care i am and have been receiving. my doctor would quickly shoot down many of your assumptions in a heartbeat, but we both know in the real world that is never going to happen. i don't judge other people's choices here, go and check my posts - its not my place or desire to do so, i offer true support to my brothers here, whether i agree or disagre. it's a dangerous path when you start judging my (or anyone else's) doctors and the level of care they are getting. Are you qualified in some special way to do so? I think not. the more i think about your last post above, the angrier it makes me. if you are sincere in wanting to offer support, then think about deleting that last one.  it's not very convincing to me, for someone to tell me that they care, support, etc from one side of their mouth, then turn around and shoot darts at me with the other side. that doesn't compute well with me.  i didn't start this thread to ask advice, i simply updated my numbers and my situation.  if you ask for help or advice, and then don't like the answers, that is entirely a different situation, this isn't the case in my latest thread.  i go to doctor's for medical advices, not to on-line support group like HW.

mal, i agree with your last post completely. i think you truly understand the real point. i see too many desperate to live long at all costs, no matter what. a good life is not just about longetivity, its about quality and dignity, and satisfaction.

david

Post Edited (Purgatory) : 4/11/2012 10:25:08 PM (GMT-6)

Posted 4/12/2012 4:30 AM (GMT 0)
thanks, johnt, not really complaining, but you would think in a twisted PC journey like mine, at least at some point, I would cop a break. it's been a roller coaster of mostly only bad news. if this is meant to be a test of my endurance, patience, and strength, then i am still winning, because i am still here, and still kicking.

we so badly need a test/scan/whatever, to determine upon diagnosis, an exact strand of PC. then treatment (or non treatments) could be tailored at the individual level. it seems in reality, that most of us have to make treatment choices based at best, on somewhat educated guesses. and i hate to use the word luck, but in a manner of speaking, just plain old fashioned luck does play into our choices. there has to be a better way, one day. may not help our generation of PC guys, but perhaps one day, better tools will be there.

david
Posted 4/12/2012 4:31 AM (GMT 0)
David,
I am so sorry about the PSA numbers. Here you had just come back from a great vacation and anniversary and you were so content and happy only to have this thrown at you. It is my greatest fear to is to have my PSA launch into the stratosphere and find out that surgery and Provenge failed. Keep channeling the good thoughts, you have so many of us on this forum cheering for you and appreciate the great example of courage and compassion that you are to all of us.

I will hope like you, that you don't have mets, and will be including you in my prayers over the weekend.

This is a truly hideous disease that has no mercy. Thank you for sharing your troubling news with us. We are here to support you and lift up you spirits so please give us the chance to return the favor for your 15 trillion comments that you so unselfishly posted.

Keep all the positive thoughts and chase away the fear so you can focus on the beauty of life.

Good Luck my friend.
Posted 4/12/2012 4:39 AM (GMT 0)
devasted,

thanks for such a well thought out post to this thread. you are right, for many, PC shows no mercy, what a sick joke when the uninformed tell us that we are "lucky" for having PC, you know, the slow, easy cancer. we know they say that in ignorance.

still not expecting to find mets, but getting the mri's to be on the safe side. i am well in range now to have them, but on an encouraging note, my oncologist said he has seen guys with post treatment failures like mine, with PSA's above 100 without any evidence of mets, so that is still possible for me.

thanks again

david
Posted 4/12/2012 4:47 AM (GMT 0)

David – so sorry to hear of this latest turn of events.  Know that all of us at HW are cheering for you and praying for you.  I am amazed at your incredible resiliency – your ability to accept the cards you are dealt and continue to fight.  As you recently posted to another member, “don’t give up hope”.

 

Best -- Jon

Posted 4/12/2012 5:42 AM (GMT 0)
David,
I am sorry to learn of your accelerating PSA. Just seems like it never ends for you. I feel so helpless to aid you in this journey. You have been and continue to be blessed-you are articulate, respected, a polished professional who has developed friendships around the world here at HW. What I can do is specifically pray that your mind stays keenly focused on the fight that you and your doctor are engaged in. As you already know, the enemy is strong but he can be defeated. Hope is always present and alive.
Blessings
Posted 4/12/2012 7:14 AM (GMT 0)
Purgatory,

Firstly and most importantly, from the bottom of my heart, you are in my thoughts and I wish you the best possible outcome.

Secondly, take it as you will and with as much gentleness possible on my part - at this point I think you need a second/third opinion. This exercise
may turn out to be academic, but you owe it to yourself to seek the most information possible. I am nowhere as experienced as you in these matters, but the only thing I have learned so far with PCa is to seek all opinions possible.

-Winter
Posted 4/12/2012 9:59 AM (GMT 0)
Sorry about the numbers David. This PCa game is so much about the numbers. I developed widespread mets with a PSA under 5. The numbers won that hand but I stayed in the game. We think that we know our enemy by the numbers that it expresses and we hope that we are not being scammed. I understand the frustration and the fear that you must be experiencing now. Make certain that your doctor's game plan makes sense to you. If it does, take whatever leap of faith is necessary and run with that plan. You're a courageous, disciplined and educated patient. You're not going to become one of the numbers. You're going to survive this. As always, we are on your side.

Jim
Posted 4/12/2012 10:56 AM (GMT 0)
David, so sorry to hear that your post-SRT PSA is advancing so rapidly. Your "smell the roses" approach (my term, not yours; hopefully you don't disagree with that characterization using a common phrase) works for you, and that's what's most important. I believe that one of your approaches to enjoy life has been sailing...mine too. I might have mentioned that I bought a new daysailor at the Chicago Sailboat Show this winter, and will take delivery in a few weeks. Almost as important, I found a taker for my old sail boat--so this year I experienced both of the favorite days of a boat owner, the day he bought and the day he sold! Hope to hear of you getting out on the water as the weather turns to spring/summer!!

Lots of speculative talk about the "PC Standard of Care." I've posted the link before, and will provide it again here for those interested; the document can be found here:
http://www.nccn.org/professionals/physician_gls/pdf/prostate.pdf




edit: NCCN link requires sign up; it's free

Post Edited (Casey59) : 4/12/2012 5:15:15 AM (GMT-6)

Posted 4/12/2012 11:23 AM (GMT 0)
David,

I am so sorry for your doubling times. Although I cannot understand why your doctor has recommended what he has, I am assuming this is because of factors that we here in healing well do not know.

I hope that whether you decide to continue on with AS or chemo that it works and that the doctor finds and treats the cause of your pain.

Regards,
An
Posted 4/12/2012 12:06 PM (GMT 0)
David, I just had to respond when I read your post (yes, I do lurk here and read many posts). To put it simply, I am shocked by your recent PSA results. Like others, I am greatly concerned for you but am happy to read that you continue to have such a wonderful attitude.

I do hope that these tests will provide some answers and help you and your doctor move forward in this battle. As always, you continue in our thoughts and prayers.

John sends his regards.
Posted 4/12/2012 12:24 PM (GMT 0)
David: so sorry to hear your news. hope your next tests give youall insight as to where to attack next...keep fighting the good fight !
bob
Posted 4/12/2012 12:34 PM (GMT 0)

Purgatory said...
.

we so badly need a test/scan/whatever, to determine upon diagnosis, an exact strand of PC. then treatment (or non treatments) could be tailored at the individual level. it seems in reality, that most of us have to make treatment choices based at best, on somewhat educated guesses. and i hate to use the word luck, but in a manner of speaking, just plain old fashioned luck does play into our choices. there has to be a better way, one day. may not help our generation of PC guys, but perhaps one day, better tools will be there.

david

David, dr bonkhoff in Germany does exactly that. http://www.prostapath.org/us/us-main.html
The tools exist, they might not be important for the vast majority of pc cases but may be important in unusual pc like yours. Even better than this, the strain of the pc helps you and your doctor work out what medication fits best.

I know this has been brought up previously and your concerns were around why this test was not available in the US. I think given what's happened recently maybe this is worth a shot? Dr Bonkhoff is a world expert in prostate pathology and getting his opinion on your pathology would certainly not be "out there"

Regards,
An

NB: see particularly his section on prognostic and predictive markers, the document there describes targeting prostate cancer at the molecular level by choosing the right treatment option based on the markers.

Post Edited (An38) : 4/12/2012 6:46:14 AM (GMT-6)

Posted 4/12/2012 12:54 PM (GMT 0)
David

So sorry to hear your news.

I really don't know what to say mate, except to let you know that we're all pulling for you. You are an inspiration to us all.

My very best wishes to you David in your continuing fight against this disease.
Posted 4/12/2012 1:18 PM (GMT 0)
jon, i can assure you that i practice what i preach, i have no intention of giving up hope, i am living my life, my way, and will continue to do so, as long as i am able to, that's just me.

octocor - thanks, appreciate your words, i value my mind and the power of the mind, more than any other aspect.

winter, thank you as well. i will seek whatever other opinions as needed, when i feel its the right time

jim - hard to explain, i feel no fear - just not my nature, i adapt quickly to whatever reality i am facing, and adjust my feelings and emotions to suit the situation at hand.

casey, sailing is one of the love's of my life, been doing that since i was about 14 or 15, i made my first boat out of a rusted john boat, with home made mast and rigging, and sheets, well made out of bed sheets, so its in my blood. my current boat, Octavia, is like a mistress to me. i enjoy sailing with others on board, but my best times our when its just the boat and i, gives me complete peace of mind, so i can relate

an, thanks as always. yep, there are lots of other factors in play here, some, not easy to articulate without starting world war III, and others, unfortunately, are private matters. i still have complete faith in my oncologist, as he only sees people with advanced prostate cancer and advanced breast cancer. he's well informed, well read, and keeps up on all the latest developments and clinicals. from day one of my journey, i knew this would be a difficult battle to win, almost 4 years later, i am still here annoying people, lol

sephie, hugsssss, ltns. so happy to see you pop up. thank you, and john, and tell him for me, its never too late to become a red sox fan, as the sox nation says, alway believe.

bob, thanks guy

an (2nd response) - i will mention that name to my dr, though i couldn't imagine him not knowing about him

thank you, ozbob, appreciate that, its one for all, and all for one around here, i am just another mate in this big old pot

david
Posted 4/12/2012 1:45 PM (GMT 0)
David

You have to decide what is best for you. In whatever you decide, that will be the best thing for you.

Our prayers and good thoughts go out to you.

Bud and Mrs. Bud
Posted 4/12/2012 1:58 PM (GMT 0)
David, shock and surprise are the first words that come to mind when I read your report.

I can not add much more to what has already been said, but that I continue to send blessings your way for resolution and peace.

Hang in there brother,

Sonny
Posted 4/12/2012 2:12 PM (GMT 0)
Hi David,

Like everyone else, I was shocked to read about your rapid psa movement.  I would never think to question whatever you decide to do treatment wise; just wanted you to know that I'm thinking about you and am sending positive thoughts your way.  I've followed your trials for two years on this site ( I think you were the first person to respond to my first post) and have been amazed at how you've been here for so many people when you were going though some awful times.  Hopefully, you know we'll be here for you.  Take care, friend.

Kind regards,

Renee

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