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Short Story of Lloyd Ney~Pca~journey shows lessons and hope from the past

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Posted 1/25/2009 12:40 PM (GMT 0)
Lloyd Ney was dx- around late 70's early 80's when PCa was more of an unknown jungle. He was diagnosed with a serious level of PCa, no where near indolent versions. Back then he chose to start with radiation which was EBRT and was probably the box version and no where as good of radiations as exists today. Well he had complications from the radiations now to deal with and rising psa levels not real long afterwards. Actually looking grim.

He was looking for answers and possible drug therapies to atleast control his PCa, some docs were giving him 'months' to live. He found out that in Canada you could get bi-calutimide (or Nilandron) same idea as branded casodex, but it was not available yet in USA. He went and got it under a doctors care, that doctor was Dr. Fred Lee (also a pioneer in cryo method). I don't know if L. Ney took the hi-dose casodex or its equal, some patients do double or triple (50-100-150 mg). Well Loydd N. did so well on this after 6-7 yrs. almost looked cured, finally PCa returned and eventually took his life. How long did Lyodd Ney live with PCa since Dx?  Remember the times and treatments and knowledge levels of way back.  He lived 17 yrs after diagnosis. He died some years back now, so I don't have the exact dates (could research it). His step son is Rick Profitt whom is a mentor at Paactusa.org and they have a member board of some of the well know PCa doctors including surgeons, onco-docs, radiation-docs....they have a Newsletter available that is considered more cutting edge as to information, I have been getting it for 6 yrs. or so. There group Paact is intended for patients with advanced levels of PCa, the ones whom need hope the most you might say.

Were the docs wrong about how long Lyodd Ney might live????? I think Lyodd was one of the ultimate warriors on PCa...he was not going to be denied what ever it took. His getting the equal of casodex into the USA was part of the legal things that he made happen with others whom joined him to put pressure on the legislature or whatever...anyway they helped get it approved is what I remember hearing about. Pioneer with a purpose and destiny that helped pave the road we are traveling upon....kudos to Loydd Ney and all warriors in this battle.

I thought some others might find this inspiring and interesting history of PCa. Knowing the past helps you understand PCa and how it got to be where it is now.

Posted 1/25/2009 1:49 PM (GMT 0)
One thought I keep having with a lot of your posts, is that there are many people that don't have the time, money, or resouces to have multiple opinions, the ability to fly all over the country, or use exoctic drugs from outside regular sources, etc. There are plenty with no insurane, bad insuance, multi layer health problems that complicate PCa treatments.

I think what you do, and the cases you find are great and most times mind boggling, but I guess being a person that has spent his entire livelihood immersed in numbers, percentages, and stats, seems like the examples are such obscure exception to the rules.
Posted 1/25/2009 2:37 PM (GMT 0)
Dave right on brother I know you are a battler and informed PCa person, so you and many others whom have taken more time to look at 'everything' get a heads up on PCa, know your enemy when going into battle, our enemy is not fair, not in uniform, non-selective, hides and lurks, and no Geneva convention. It is like the ultimate battle for survival and we are civilians, maybe we don't have the right arsenal, maybe we are out gunned and maybe we can prevail inspite of those odds...people have shown great courage and ways to win even if they loose....survival time.....forget the prognosticators whom say you got months to live...come back in couple years and slap there face and tell them to smell the coffee. There are plenty of example of these PCa fighters and other diseases and cancers. So for those without much money find your methodologies, there still are choices and protocols. Some are inexpensive, but the main stream Insitutions and docs cannot make money on those and brush them aside, but in other countries they become more main stream and people are living longer and doing better than we might think.

Z-Bob (we can learn something about PCa from any patient, doc, publication, etc....look at everything is not going to hurt you)


. It is not as simple to deal with all levels of patients disease levels, as simply: go get surgery or go get radiation (period), you could and/or if you can afford it too. Lots of other things out there.
Posted 1/25/2009 3:10 PM (GMT 0)
I am still agreeing with your strategy, I read every word of all your posts, I study any links. No such thing as too much knowledge. I am somewhat OCD when it comes to imput. You make people here, self included, think about options and treatments most would never have heard about. The pragmatic side of me, again because my world is numbers and their relationships, looks at the "bottom line", that is what I am trained to do, to input, to anylzye, to cateroize, to report. What ever the bottom line says, dont shoot the messenger.

I dont think with my personal stats and living where I am living, and with the limited resources I had to deal with, my treatment choice would have changed, but I wished I knew 1/2 as much then as I do now.
Posted 1/25/2009 3:12 PM (GMT 0)
I agree I do not have the money nor the desire to create an elabarote battle plan. I faced the enemy, stared it down, stood tall. In the end I found what I felt at the time to be the best course of treatment. I chose the radiation, Lupron, and with the doctors advice added Casodex, Avoadart, and a good vitamin regimen to help build the immune system. Is my approach right? It is to me. I did not want the emotional wounds that go with PCa. So I work fulltime, I swim, I run, I bike, I teach the word of God, I formed three ministries. I learned how to live and found the blessings in this that I would not have otherwise found.
I do thank you Bob for your research, your knowledge is incredible. I remember when you first started posting, I felt as though you had a ax to grind. Now I know you truly do love us and want to help and for that I am appreciative. We all choose to go to war differently. For me there is no loss in my future regardless what the future holds.
This probably made no sense. I just enjoy writing and expressing emotions.

peace and love
dale
Posted 1/25/2009 3:46 PM (GMT 0)
i agree with you dale, and i thought the same thing about bob, but now i just feel the passion of the fight, and no foul there. its not all sugar and spice out here, thats for sure. most men, dale, just like you did, and me, and thousands of others, research, know their resources and abilties, make their choice, and then live with it. its how most things are decided anyway.
Posted 1/25/2009 6:08 PM (GMT 0)
Dale I am with you and walk with you side by side (all roads in fighting PCa can lead to Rome-cure or long term survival), I won't go spiritual herein I don't wish to alienate or cause a stir, myself I see mans works and they aren't all peaches and cream. Our fellow brothern herein whom went through surgery last year at age 75-now and dealing with total incontinence, etc.(saw his post) Not to offend you my friend in PCa, you could have done drug therapy protocols and done well, just like Lyodd Ney and tons of other with PCa, I hope your doc explained it all to you.....I doubt he did, this should not happen. Majority of men with PCa at that age should not even go down that road or if they do be completely informed of possible choices. Now you have to deal with what lays before you and those variables, parameters etc. You can still do well or beat PCa perhaps and that is all good, I question the treatment and choices given to you and were you informed off many possible choices, scenarios and side effects??????????????
I definitively wish you well in what ever courses of action are taken, you deserve total fairness and healing.

Many ways to fight the dragon, there are some I don't know about even, and I've been looking.

David I am sure you can make me look dumb on surgery issues, I know some but missed alot on it too and I know it. It is obvious that no protocol fits all patients in tailored fashion, although we could all try them on. The experts disagree and fight about how to assess, diagnose and treatments on patients,.....and they supposedly know it all.....so how much do they know??? If so that leaves us with you can either get envolved and be part of a possible solution by advocacy, empowerment, maybe being a genea pig (I will consider it and looks like I have already done some towards that end) or other various methods of envovlement or go with the flow and hope it all goes well...which can work well for some people. Probably just being herein is a way we are fighting to be a solution, as our discussions, outcomes, shared experiences does benefit the newbie and the experienced, newbies whom just landed in the jungle called PCa and they are unarmed, you need a map or native like Friday (we can be Friday). We don't have to tell them what to do and probably should not...we can tell them all the options, side effects, choices, problems, costs, variables, how to spot huge bias and agenda etc.  That could be priceless...I was looking for it when I started.

Dx-2002  total urinary blockage(emergency room), ADT3-combo drugs prior(5-6 months) to radiations-unique Neutron/Photon protocol, ADT3 cont'd, 2yrs., quit (ADT3 showed minute signs of failure 8 rises but only in the .5.-.7.-.8 ranges), hated ADT3 side effect too, DES 1-mg taken for 1.5 yrs. with excellent results, lowered psa level almost immediately, immediately stopped Luprons side effects(still in me), stabilized psa level around .4-.5 range for about 2 yrs., went off it to see what happens...took 2 yrs. for psa to move, recently got to 1.4 range, restarted DES in Nov. 2008 dropped to .46 within 1 month, will cont. and monitor psa, will consider other concepts to fight if and when I see fit, I do have a good Onco-doc whom went to school with Dr.Labrie another pioneer in PCa therapies, you would be amazed at his frankness on PCa!!!

 

Z-Bob

Posted 1/25/2009 8:05 PM (GMT 0)
z-Bob,
There's no part of me that thinks you are dumb about anything. I was actually complimenting you above, it may have come out butt backwards and for that I am sorry. I am very left-handed and always think and talk in reverse order it seems, lol. I only meant, when I first saw your original posts here, I too, like Dale, thought that you were coming across angry or hostile for reasons that I, myself didnt understand. I told you, I read everything you write, and I check out your leads and links, for my own learning process, and to be able to help others in the future.

This is my 4th time with cancer since 2000, I am not an expert, my only motivation is to survive as long as I can humanly do, to be with my wife and family.

The longer I read your stuff, what I meant above, was that I feel your passion in your words, the fight in those words, that is not a bad thing. In my eyes, I like passion. I don't care what anyone believes, as long as they really believe in it, and are passionate about it. So even awkwardly said, it was meant to be a compliment.

I agree, there is no one correct way or protocal for dealing with PC. As I often say here, too many variable, too many options, too many life choices and personal choices.

Right or wrong, I was convinced that in my case, with my stats, and my Psa velocity, that surgery first followed by the possibility of radiation as an ace in my pocket (not an option I hever hope to use) was best for me. That's all I mean. And for me, I hope, hope completely, that I picked correctly, because there is no reversing my choice. Its over with.

Even in the cot, in the pre-op, minutes before going into surgery, I discussed with my wife, that I might like to abort the operation and re-group. It was my decision, but I closed my eyes and re-thought the facts at hand and the logic, and what I had learned, and decided it didnt make sense to abort and continue to watch my psa skyrocket and lose the change of containment, which my post pathology seems to indicate.

I don't have a problem with you, no one should be afraid of reading anything, whether they agree or not.
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