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Twenty-one months: From surgery to failure of SRT

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Posted 3/28/2011 12:01 AM (GMT 0)
David,
I can't disagree with you. Where some people see medical waste, I see 2 years worth of ammo. ;-)

Rest well and enjoy the quiet,
Jeff
Posted 3/28/2011 12:18 AM (GMT 0)

Dear Lord, but I do love the brain damaged ones...Worried Jeff, my husband has a shotgun I have no idea how to use but I know I have the will...

Now to David:  I HATE it that someone who can be so helpful to others can reach such a hopeless land as the one in which you currently abide.  I recognize a rant  when I see it.  It's coming down to "do this, live x-days but lose the QofL I currently have (one of which is still the miraculous "oak" still in your love life), or lose unknown x number of days without using current accepted treatment protocol but live in the body I still occupy comfortably.  The whole idea of that kind of corner you're backed into is horrible to consider.  You're there, we're not, can you get yourself out it and give yourself the length or quality of length the DAVID in you has to give/live?

If it means a lick of difference in your consideration, I hope you feel the hope those of us on this site feel for you.  Fervently wishing you get the clarity of mind, peace of body and spirit you need to make good decisions for that body, mind and spirit.  I respect your decision and hope it is for your best...peace from NEIrish's wife...   

Posted 3/28/2011 12:25 AM (GMT 0)
NEIrish, thank you for a nice post.

Good analogy, feel like I have been painted into a corner, and there's no way out but to get paint on me. Have had enough paint on me to last a lifetime.

Me trying to help others in my simplistic way, has been good therapy for me in itself. It's not like I know all that much, I am just a patient that has been through hell and back so far. So what I understand is the fear, the uncertainty, the pain, etc. that can accompany any cancer event. And this is my 4th major cancer event thus far, so its not like I am on new ground.

While I can be accomadating and gracious to others, and seem to have unlimited patience and empathy to their hurts and woes, I can be ruthless to myself. A "head" doctor told me several years ago when I was battling Major Depression, that I was good to everyone else but myself, and that I put unrealistic expectations on myself, and and inflicted on  myself  cruel and strict rules that I would never do to another. I think she had a point, but that's just me.

I can't always be tough, or always be strong, or always have the right answers. Sometimes, I simply just don't know.

David

Post Edited (Purgatory) : 3/27/2011 9:09:25 PM (GMT-6)

Posted 3/28/2011 1:04 AM (GMT 0)
David, I hear you, I had rrp in Aug 09, SRT April-June 10 and both failed so I guess about 10-11 months for my complete failure.  Started the HT 11/09, actually not bad except libido is zero.  I know I am just buying time but thankful that I am 69 and got this disease at a later age.  I'll keep plugging away with the HT.  I pray to be at peace and not worry, which is hard to do. As you say, it is what it is and if fortunate, the HT will last several years.  Take care and remember what Padre Pio said, "worry is useless."  The Old Sailor

Posted 3/28/2011 2:08 AM (GMT 0)
David, as you know best,there are no easier answers. I want you to know we are all behind you, whatever you may choose. You do provide a lot of encouragement and strenth to the others ( including me for sure). Mentally, I don't think I have the strength to go through what you've endured. But as you've said, you don't know what you can endure until you face the situation. I can't give you advice on what or what not to do, but will tell you I have followed your journey over the past two years. Take care and keep posting.
Posted 3/28/2011 2:48 AM (GMT 0)
Purgatory, I apologize for my responses to this thread! I believe in apologies and forgiveness for real or perceived hurts. A hurt is a hurt is a hurt ! It was an attempt at " tough love" to snap you out of it. It obviously was NOT received well. I wanted to help you, not hurt you. Actually tough old bird as you are, it probably didn't hurt you. You shot back with an excellent return. Actually I like your tag, we all are kinda there aren,t we, with or without PCA. I have had an epiphany , I really can,t express. You have a positive effect here, that you and none of us can fathom, nor is it necessary to. Trust me on this, this post is to you. I could care less what any "group" thinks of me. But I care very much about each individual in this group. Aloha, Logo
Posted 3/28/2011 3:18 AM (GMT 0)
Old Sailor - you have been doing a pretty good fight yourself. And I am a big Padre Pio fan, a remarkable individual.

rob - thanks for the encouragement, no strength in what i have done, just a question of survival mechinism at work i think

logo - i respect and acknowledge any heart felt apology in such matters, and i never, ever hold grudges. i believe in the notion that you need to forgive someone 7 x 70 times if you catch my drift. And honestly, many a good person assumes the Purgatory name has something to do with my PC journey, but it honestly doesnt. Been on the net since 1995 and have used the name Purgatory the bulk of the time. Just a chance thing that the name seems appropriate with my journey.

and i give another tip of how i think, i honestly never care what people think about me or some of my odd ways of looking at things, i would rather shoot blind off the heart, then insincerely off the brain.

i appreciate all the encouragment here. it may seem like i give and give, but trust me, i take and take also more than my fair share at times.

david, less depressed tonight.

had a couple of long, meaningful phone calls from a couple of you guys, you know who you are! appreciate you sharing your time with this left-handed, colour-blind, pain in the A!
Posted 3/28/2011 4:22 AM (GMT 0)
I catch your drift and now am sure that indeed, this will end well in big picture, thanks Logo
Posted 3/28/2011 12:26 PM (GMT 0)
David:

Sorry to hear you're down in the dumps! Like you said... "on paper" everything seems so different. I think that's why PCa is such an emotional rollercoaster. People kept telling my Dad "if you had to get cancer PCa is the one to get its so curable". My response to that is, "yeah whatever".

Hang in there.... keep considering HT. For some people the good things in life don't come easy... you may have to go through more bad side effects to get back to the good years.

We keep telling Dad that if it takes one bad year of treatment to have 20 years of good life left.... just suck up the treatment.... I know... much easier said than done...especially since I'm not enduring the pain you and he are. BUT we all have our battles in life -- and prostate cancer is your battle.... so go out there an win it!!!

Hang in there!!
Posted 3/28/2011 12:58 PM (GMT 0)
Hi Purgatory,I am sorry that I can not give you any advise,but I do feel your pain and can only pray for you,to be strong and please do not lose your faith.God bless you.
Posted 3/28/2011 1:23 PM (GMT 0)
Concerned: thanks and my best to your dad

Goldhorse, there's not a chance of that
Posted 3/28/2011 1:53 PM (GMT 0)
David: I do hope you are considering the option that I sent by email to you.

Just a few words of advice for what it is worth: Someone on another site said something profound. Even within a few months or years of reading, we cannot learn all we need to about prostate cancer and become as knowledgeable as a medical professional who went to school, specialized in urology and prostate cancer and has been practicing medicine for many years.

Right now, your options are limited to what you can read about here, in books you have, research found on the internet in reputable academic sites and what you can decipher for yourself in your own head. While better than what we had available years ago, it is still limited in scope and depth. So it is no wonder that given these limits, you keep coming back frustrated. I would too. You need some new fresh data.

I really think it would be in your best interest medically and mentally to have a good consultation with a research/practicing/urologist in a major center of academic excellence. Find a doctor who lives, breathes and eats this stuff on a daily basis. Someone in tune with all the side issues and pitfalls. A doctor who can easily see where you are coming from and offer a fresh new perspective. A doctor who can finish a sentence for you because he/she knows exactly where you are coming from.

Otherwise, if you are mulling over the same data day after day and expecting to obtain different results, you have reached the classic definition of insanity. (doing the exact same thing over and over again and expecting a new outcome) You need some fresh new input from someone who can look over everything you have with a new perspective.

You know that PCa is a very complex disease and you need an experienced guide to find your way through the maze of dead ends and broken down pathways. As I told you, major academic center offer advice and treatment to so many who have come to them because the doctors they have back home have come to the end of their level of experience and knowledge. Do the same thing for yourself. As wonderful as some of the docs you have already had in the past, I think you are due for a fresh opinion from a doctor who had a team of researchers around them. That is the beauty of big academic hospital settings. For every doctor you see with patients, they have a group of research associates, residents, fellows, students they teach, joint research projects they are involved with, fresh patients they treat that provide them with further experience. We are lucky to have several of them here on the east coast at our disposal.

Keep doing the evaluation of your options. You need some fresh new opinions to help guide you.
Take care. I am keeping you in my thoughts and prayers.
Mike
Posted 3/28/2011 2:18 PM (GMT 0)
Mike:

Beautifully written.

My thoughts exactly (for David and for me if SRT fails since I would be following in the same path).

Mel

Posted 3/28/2011 6:52 PM (GMT 0)
Mike,

Taking the advice in your post and e-mail under advisement. I still don't see where there is anything new out there to consider in my circumstances. Still comes down to not taking HT, taking HT now while the PSA is still lower, or taking HT when the PSA is higher, i.e. 10-15. Our experts can't even agree on that simple point. Sounds like whether you go to a special center like you mention, or to a local facility, the same choice will be in front of a patient at this point. Doing as you suggested, what would they know, that we and they, don't know already?

David
Posted 3/29/2011 2:05 AM (GMT 0)
David:

I think you might be wrong here. There are all kinds of new ideas/studies coming out. I just read today in Urology Today that there appears to be a definitive study indicating that IADT will be the new standard of care (Intermittant ADT). I've also seen talks by Dr. Scholz with intriguing results about introducing chemo earlier on. Not that this is pleasant, but it used to be chemo was relegated to the back burner and was used to perhaps squeeze out a few extra months. But, apparently they are finding better ways (and earlier ways) to use this stuff with better results. I also know he is very much up on the new immunology stuff.

My point is that the top doctors are top doctors for a reason, and it isn't just their self-marketing.

David, some doctors are more knowledgeable than others.

Have you made any progress in seeking out some of these folks.

Imagine if you didn't have health issues leading to travel restrictions and if your insurance was real good anywhere in the USA (good luck with that, right?). Don't you think you would be taking a wider view distance-wise in trying to procure a top doctor to consult with?

Having said all that, you might still be correct regarding your choices, but maybe not.

Let me relay a personal example. I have had a history of intestinal problems. At one point, I was dx. with Crohn's Disease after a colonoscopy. Another one 5 years later also found Crohn's. But my local GI guy -- one of the nicest guys around, like your guy -- dx. me with Crohn's but also felt I should be a lot sicker. Now, I was having a lot of difficulty, but I still wasn't fitting the clinical picture of a Crohn's patient. So, I went to Umich to see a leading expert. He said some recent studies showed that the prep I was using for the colonoscopy (Fleet's Phospho Soda) can cause some temporary inflammation that mimics Crohn's Disease on biopsy. He said I just might be one of those few patients with that problem. He suggested I use a different prep. Since that time, my colonoscopies have been totally clear with no sign of the typical Crohn's inflammation. Do you see my point? Sometimes it just pays to get another opinion...from a top doctor.

Mel

Posted 3/29/2011 2:21 AM (GMT 0)
Mel,

I think you are missing my point. Not counting some theoretical treatment that doesn't quite exist yet, or some clinical means that may or may not be out there, what choice(s) is/are there for someone with a failed surgery and a failed salvage radiation?

I am seeking someone to guide me, i.e. quality medical oncologist with a lot of experience with advancing PC cases. Whether he/she is local, regional, or some where else in the country is not the real issue. I am siding with the advice my doctors have already given me, not to be in a rush to jump on the HT band wagon, that it won't hurt to wait until the PSA is at a much higher rate. I have read both arguments to the ninth degree, and I feel more comfortable with that line of thinking.

Haven't heard anyone dispute the option(s) here and now, at this juncture, you either do HT now, HT later, or HT not at all. Really not much of a choice, because its all the same thing.

Perhaps one day, there will be more choices, a true Step 3 with curative hopes, but that doesnt do me or other men in this boat any good in 2011. What am I missing here?

We already have men here, that had top brand name surgeons and radiation doctors with equal failures, despite going to the best. So I have a hard time finding that a convincing argument.

David in SC
Posted 3/29/2011 2:29 AM (GMT 0)
David, I sent you a private email.
Posted 3/29/2011 2:35 AM (GMT 0)
You may or may not be missing something.

Perhaps there is something that coupled with HT helps minimize side effects. Or maybe it is just getting a doctor aware of all the side effects and with an arsenal of stuff to anticipate and combat/minimize such SE. I don't know.

Seek out a top-notch doctor and find out.

Remember, buddy, I'm following in your footsteps!

I posted this link about a month ago. At least check it out and see what you think about Dr. Scholz. It is very informative. I'll be watching it agaiin if my SRT fails!

http://www.fliqz.com/aspx/permalinkblank.aspx?at=2c863c93-b784-46e0-a84e-ba103163516f&a=d2c74c19-bb74-4cda-93a6-7bbe76656bbb

Mel

 

Posted 3/29/2011 2:38 AM (GMT 0)
Redhawk, thanks, I will look for it.

Mel - another thought. I am not against 2nd or even 3rd opinions about medical matters. But even other opinions can cloud up the water. You go to one doctor, you get a sound opinion, but you want a second opinion, you go to another sound doctor, and get a completely different opinion. Which one do you go with especially if they both come from good doctors with good reputations. Then take it the next step, you go to a third good doctor, and either he/she will agree with one of the first two, or the other possibility, is that you end up with a third and different opinion. Then what do you do, go with 2 out of 3, or the 1st, or the 2nd, or the 3rd. I just don't always find that productive. In some cases, people get other opinions only to find one that agrees with their own original thinking, so that they can justify their decisions.

Mind boggling, isn't it?

David
Posted 3/29/2011 3:05 AM (GMT 0)
David:

I agree, but the alternative is to NOT get a second opinion. That's fine when treating a sinus infection, but not when dealing with PC.

But what you said about getting the second opinion that you wanted really strikes a chord with me. I was SO GLAD when Dr. Hussein (Umich -- top-notch doctor) said to go straight to SRT and did NOT recommend any scans or HT. If she said do HT, then I don't know if I would have listened. (Yeah, so why ask if I'm not going to listen).

Meanwhile, SRT is not going well -- see my update there.

This may come up again if I end up consulting with Dr. Scholz and Dr. Huussein.

Mel 

Posted 3/29/2011 3:55 AM (GMT 0)
I saw your 5th treatment report, very distrubing to me, being what happened to me. Don't let them pull the "you can't be feeling any pain, its not possible" route with you. You know exactly what you are feeling, as I did.
Posted 3/29/2011 6:42 AM (GMT 0)
I will go on the record as saying If I have a recurrence, with my clean pathology, containment wise, it would take a positive dre in the prostate bed , mri, whatever they have out there to confirm a local recurrence, before I went the radiation route. This is not the case with David and compiler i.e. pos margin, epe. Having said that, I might not even do it with the low success rate of SRT generally. specially with a very hard gleason 7
. It would take a lot for a rad oncologist to convince me, but, he/she could. With my present knowledge base I would definitely be very slow to go to HT, until A high psa >10, no reason for that #, just an example. It would not be in the 5 or 6 range and some experts have even indicated, walsh, scardino possibly til symptoms. I fully expect not to be faced with this problem, because I am trying very hard to use that unused portion of the brain the scientists have been telling us we have ,since I was a boy. you member that 80% or some such #. And if I may say without causing a ruckus, my faith. I do agree for the 2nd opinion with the big boys for David though. Heck we tell newbies, to take the slides to the big boys, Don't see the difference. David has a lot of faith in his medical team, and that ,quite frankly has power, that might trump our opinions, He accepts his responsibility for outcome
Good Luck to you both.
Posted 3/29/2011 6:46 AM (GMT 0)
P.S. this shadow of a plan, has a lot to do with me pushing 68 however, even if very fit. I say the fit part not as a braggadocio, but be cause it is relative.
Posted 3/29/2011 6:50 AM (GMT 0)
Sorry one more thing. Davids argument about the triad of choices is quite convincing. Take the best of the best, he picks 1, second best picks 2......
Posted 3/29/2011 12:36 PM (GMT 0)
Good morning, David - and I hope it is a better morning.  I am so sad to hear this latest news.  No, you don't want my sympathy, but it is an emotion I just feel.

I like some of por's ideas, but when in a deep depression it is difficult to see beyond your current suffering.  I don't know anything about HT; however I hope you get your wish to find someone to guide you, i.e. quality medical oncologist with a lot of experience with advancing PC cases.

Have you tried  infrared light treatment, especially in these colder, darker days?  I don't think anyone can truly understand deep depression unless they have experienced it them selves.  There is a need to find joy in your life to lift the dark clouds.  I would like to believe that day WILL come for you!

I know of at least 4 cases where Social Security was denied.  How strange that in each case, after 5 appeals the disabilitypayment request was granted.  All back money payments followed.  They want people to quit applying and to just give up.  It is good that you have found a lawyer!

I wish you the best as you contemplate your next step.  Please, please don't shut your wife out of some of your thoughts.

Hugs,

Aimzee

I found this statement to the point,  "Good luck, David, and rant/whine/scream here on HW as much as you want. You have been wonderfully supportive to others, but we all need support."

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