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Posted 10/19/2006 4:09 AM (GMT 0)
Dear John, *jeb187chs and loved ones….

This stone is a slippery rascal and we know you feel all the hands here on the forum helping to hold you up.

“ALL OF OUR PRAYERS are so deeply rooted to you and if strength in numbers has any say in the matter… you will stand on your own soon. Of course our arms will always be there ~ since we are on this journey with you!!

I will say ~ that your body needs all the positive flow it can get! Prayer, Love, and Day-to-Day Living… will get you through. One-day-at-a-time… And we are here to provide what ever it takes to help you and your family….

Your journey has more stepping-stones in your path… and you’ll just have to take it slow and easy. Take the 3-6 months to get yourself in the best mental & physical shape you can be in. This is a fight and by golly…. You’re up to it!!! With the love and support you’ve mentioned… it’s a fight that will go the distance with you being the winner.

Don’t let “negative” emotions tear down all the positives that you know are there. Your age and the fact that you do have options are “positives”….. So stay strong mentally this will be the biggest battle…. So punch away my friend.

Thank you so much for continuing to share your journey with us. It continues to remind me each day that we have never been promised tomorrow ~ so live each day to the fullest.

Hugs comin’ at you and your loved ones. We invite your wife to join us at any time.... sharing feelings really help and we are here for her ...any time she needs us!

In Friendship, Lee & Buddy
Posted 10/19/2006 12:28 PM (GMT 0)
John and family,

as Bluebird said, there is strength in numbers and we are all praying for you. I can't begin to imagine how we would deal with this, but it sounds like you will be fine once you get over the initial shock. Just like we all did when we first heard the word "cancer." there are a lot of treatments out there and I believe you will be fine for many more years. hey, halloween, schmalloween, who cares about that day?? here's wishing you all the best....kat
Posted 10/20/2006 1:49 AM (GMT 0)
M Kat, Bluebird and all,

It means a lot that you are all out there and have such caring comments. We will be here and posting all we know and commenting anytime we can share something of importance concerning our journey because maybe it will benefit someone else. I believe this group is the "best" resource a PC "victim" could ever have. We appreciate you all and look forward to a long and successful "fight"..... I have never been one to give up easily.

My sincerest regards,

John
Posted 10/20/2006 4:27 AM (GMT 0)
John,

Keep up the positive thinking that will help you thru the next few months more than anything else...that and getting your body back into shape.

We're all here thinking and praying for you and your family!!

Posted 10/22/2006 3:01 AM (GMT 0)
Bluebird and all,

Got my results from post-op PSA number three 0.22 again.... so .37 .22 and .22. My PSA may have hit bottom...... hope not but it's looking that way. Have appt. in a little over a week with radiation doctor so I guess it's off to step two. My PC doctor had written on results keep appt. with radiation dr. so I guess that's his plan. He's one of the best I so I will do just that.

Keeping up on supps. and pomegranite juice..... may not do any good but can't do any harm. Need to build up a strong defensive immune system.

Thanks again for all your positive support and comments, sorry to be a complainer when things don't go perfectly. I am so glad though to hear how fantastic most people's experiences are. Proof positive that PC can be licked, my PC had just too big a head start. I am telling everyone I know and talk to "get your exams and get PSA tests" and don't let your GP or family doctor ignore issues or take a wait and watch or let's try antibiotics for a time or two, mine tried it three times. Wish now I had gone to urologist 3-4 months earlier, it might not have made a difference but who knows.

Thanks again......

John
Posted 10/22/2006 12:49 PM (GMT 0)
John,

you are not being a complainer, just stating the facts of life, which right now suck. but I think everything will work out just fine for you - you have a great attitude, a great doctor, people supporting you and praying for you, and your other medical tests are clear. your recovery journey is just taking a little longer than others. it's OK to share your feelings about all of this, so vent all you want.

kat
Posted 10/22/2006 5:50 PM (GMT 0)
John, Count me in on the prayer. I know you have many friends and family that are also praying and will continue to pray for you. When I was diagnosed various scriptures ran through my mind, verses for solace, comfort and consolation. One that comes to mind is Rom 8:28 and I have found it nigh impossible to believe it on my own strength mad   There is one verse that always works Psalms 56: 3-4a. In any version of scripture you read this verse does not begin with "if" we are afraid, God knew we would be afraid. Keep us up to date as to what is going on with you. My prayers for you and your family will not stop.

Posted 11/1/2006 12:43 AM (GMT 0)
Bluebird, Kat, Wickett and all,

Well we went to the radiation doctor and to be blunt I am confused and even more troubled. He reviewed all the facts and one of the first things he said was.... "and we did surgery why?" I told him it was what Dr. A, my "expert" I was referred to suggested. I ask if he was suggesting I should have began with another path and he said.... "well hindsight is 20-20." He then proceeded to explain that radiation at this point would only be a 50-50 proposition. He suggested I think about a "clinical research" study concerning the use of hormones and chemo. Random sample blind study where 1/2 get hormone and chemo and 1/2 get straight hormone therapy. The study would still allow radiation but it all would be staged per the study. Radiation can't start he said anyhow until at least three months post-surgery.

He went on to say that my .22 PSA and not zeroing out and coming back up is a negative. Means that cancer cells are still in place and may or may not be still in the prostate bed area. He added my cancer is an aggressive type.

We are making an appointment with the oncologist doing the study but I don't know what to do...... If I need hormone and chemo therapies how can I be sure I get both, I don't want to be a guinea pig and not get what I need to lick this. I want to be "cured" not tested and someone to say down the road "boy you should have somethoing else or additional".


I am loking for answers, has anyone else faced this and found solice in their decision? Does the study sound like a good idea..... should I get yet another opinion..... should I just wait and do nothing until the PSA reaches a higher level again..... or ........ ???????? Any ideas Swim?????

Confused and troubled,
John

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Posted 11/1/2006 1:41 AM (GMT 0)
John,

I truly feel your desparation. You are on the right track. You must fight the beast to win and choosing the right weapon is the key. I do not have any personal experience to offer to you but I would recommend that you go to www.yananow.net and click on the Mentor Experiences. I know I have read several of these under the radiation/chemo/hormone sections that sound similar to your situation. The mentor's email addresses are included so if you find one that you would like to contact you can email him. You will find several stories there where men have successfully fought the PCa for 10 years.

You are in my prayers.

Tamu
Posted 11/1/2006 1:08 PM (GMT 0)
John - darn all of this! I can't speak from experience so keep searching the web until you find people who have been through the same thing like Tamu is suggesting. I would get a second opinion and not wait for another PSA increase. my prayers continue for you.....kat
Posted 11/1/2006 1:17 PM (GMT 0)
John! Get yourself to another onco right away! We went to one of the best in the great state of Texas and walked away with the feeling we'd been to a used car salesman. He spent two hours telling us why surgery should never be considered under any circumstances. That he was there to pick up where all the surgeons messed up. That sugery meant death, blood loss - didn't even mention daVinci or laparoscopic. When we asked about that, he blew it off and mumbled something like he had heard it was done on some heart patients in Dallas somewhere. Wel....

What you got was a hard sell and a guilt trip. You have absolutely taken all the right steps. Had you gone for radiation first, you "might" not have known your PSA results for months - it takes that long for the radiation effects to settle down. Then, further treatment might have been delayed even more.

Can you tell I'm angry with your doc? Sorry to rant. We're getting to leave for a "maybe" final appointment in Austin with our daVinci doc. Will be back tomorrow afternoon and will check in ASAP. Hang in there and know you're doing the right thing.
Posted 11/2/2006 3:14 AM (GMT 0)
Dear John & Loved Ones,   Your decision to have surgery was the right decision!!!……   There should never be any doubt in your mind…..   Now……….. Take a deep breath ….. And know that you will find the right doctor to help you move forward.   This was a very slippery stone and we need to get you on the next stone just ahead…..   One giant leap forward…………. Okay…. Now we are on a new more stable stone.     Before I move forward in my thoughts……………………………. We need to place this “so called professional” on that slippery stone and let him have a good dunking…..   Maybe we can add GreenAcres car salesman too!!…. Okay… now I’ve got the anger out of my system I can continue.     Your decision should never come into question John …never…………………..   I’m reading in my Dr. Walsh’s Guide to Surviving Prostate Cancer to get a feel for this area of treatment.   I know I’m not going to be able to give you any viable input but I want to know what you are facing more my own knowledge so I can at least know what some of the stepping-stones are ahead.   I know there’s been advancements since this book was written but I’ve learned so much and it took the fear ~ away… for us.   **Excerpt from book…   One of the major advantages of radical Prostatectomy is that it gives the patient some early, definitive answers.   In contrast, when men undergo radiation therapy, there is no pathologic specimen to evaluate…     So ~ would they have known the cells escaped to the seminal vesicles?   bladder neck??   lymph nodes………………the answer is NO…. they would not!!!!     I think you know in your heart the decision to have surgery “is and was” the right choice for you!   Especially being 55 and otherwise healthy.     John ~ Have you talked to your urologist???   Did he refer you to this doctor????   I’d be interested in knowing what his reaction is to your treatment by this “…”   if he did.   Keep the appointment with the oncologist…… Knowledge is POWER!!!! And the more information you have you can then make the next step in your recovery.     SWIM……. Where are you!!!!!!!!!!!   We need you !!! J   She’s probably on one of those weird shifts… but she’ll check in soon…..     I’m re-reading over several of your postings….. and I see so many positives that will help you stay focused.    And I’m going to re-visit some of your findings………………….   Excerpt from John’s previous postings…………………………. Even though there was cancer cell penetration of the prostate and seminal vessicles, my lymph nodes and all my secondary tests, the bone scan, chest x-ray, cat scan and pet scans all came back clear .   I feel better just knowing the cancerous prostate, seminal vessicles, and bladder neck are gone now.   (right decision to have surgery my friend!!!) In St. Louis they are doing a new Carbon-11 acetate pet scan which is supposed to show soft tissue spread of prostate cancer.... that too came back clear prior to surgery . One lymph node was questionable so it was removed during surgery but pathology came back that it was clear of cancer. Okay…. I know I’m chirping away but my fingers just won’t stop typing….. and mama bluebirds have the right of passage to chirp a little more than others!!!   The first thing that comes to my mind is making contact with John Hopkins or another medical center that deals with this….on a regular basis.   We must remember that others have traveled this path………. And there are answers out there…. We just have to find them.    Having a contact person you could talk to for advice would definitely help mentally and physically.   John ~ you have stones on your path that we have not had to traverse…. But I do want you to know…. That we “your forum family” are right there beside you with hands reaching out to help guide you safely to the shoreline.   No matter have many stones are left in your journey…………….. We walk with you my friend.   Keeping you tucked under our wings ~ to keep you extra close...  In Friendship ~ Lee & Buddy
Posted 11/2/2006 3:15 AM (GMT 0)
John, I hate it that you are suffering all of this misery. Please hang in there and know in your heart that a whole bunch of people wish you well.

Regards,

Bill
Posted 11/2/2006 4:12 AM (GMT 0)
John,   Responding to 10-21 posting that I missed and just saw now… 11-01   11:06 p.m. est      I hope you realize that you are always in our prayers….   I read your posting from yesterday 10-31 and responded after I settled down…. I was so MAD    .   I kept thinking as I typed that it must have been an unexpected appt.    Once I posted it… I logged off… and proceeded to go back to the beginning of the Thread….     My heart sunk when I saw that you posted on 10-21 and I never responded….   I was traveling during that week and the Thread must have gotten by me until you popped it on Tuesday.   Man oh man……… that had to have been a long week….   I’m so glad you posted another update!!   I guess I got my answer about your urologist recommending this person…or was it your GP??..   Hopefully when you feel up to it….. you can let your doctor know the kind of treatment you received.    If it was the urologist that referred you….This person he referred you to is questioning his skill?????   And his area of expertise…. I don’t think this would go over too well.   Okay… now I’m looking at this posting and there are way to many “negatives”…. So let’s dissect them and then throw them away for good. Your spirit is too bright to allow the negatives to shut you down in any way!!!!       Have you seen that commercial where they bring someone in to do a voice over… Let’s re-vamp your negatives to reflect positives and this will help you!!!!   keep the shine! Trust me on this…….. J   You:   May not do any good     Gosh this juice sure is good…. It’s really helping my immune system.   You:   Sorry to be a complainer Thanks for letting me share my feelings with my friends….. J   You:   Wish now I had gone to urologist 3-4 months earlier I’m sure glad I went when I did….. my sec ondary tests, the bone scan, chest x-ray, cat scan and pet scans all came back clear and lymph nodes too!!!   John ~   We have reason to have concerns and be scared and worried…because we’re back to not knowing???   And this is the scary part.   But the negatives will breakdown all the positives you have built up over the past …. So dear friend….. all those bad negatives are being dumped in the garbage as we speak…..   We care and continue to walk beside you.   As Wittler would say…STAY STRONG In Friendship, Lee & Buddy
Posted 11/3/2006 12:43 AM (GMT 0)
Bluebird and all,

I have to start with how much I appreciate your kind words and feelings, makes me cry and I don't cry easily. Ask my wife. hahaha

I have an appointment with the oncologist on the 13th, the time isn't set yet but the nurse assured me it would happen in the morning as soon as the doctor clears some time.

To say I am upset and disgusted with Barnes and the radiation doctor at this point is a sure thing. I have never had a doctor do that where he would second guess a patient and a co-worker. The surgery is done, I can't undo it and I wouldn't even if I could. I am convinced I am better with all of that cancer out of my body.

Now how do I get rid of the few pesky cells left, and how do we find them to kill them. Surely there are ways, and people that know the secret.

My daughter, wife and co-workers have all paid the price since the dr. appt. the other day. They all say I am different....... need to get back in my "happy" contented zone. I was convinced and still am that I was doing great and had a good shot at beating this and now..... well I am not so sure.

If the doctor doesn't calm me down a week from Monday I may be off for Cleveland Clinic or the Mayo..... I know there are answers out there and doctors who care about their patients and not so much criticisizing sp? of their peers.

My 70 yr. old sister called the American Cancer Society of America , she was upset too, and they agreed I did the right thing and the radiation doctor was completely off base. They are sending us some info. for guidance and piece of mind too.

I'll tell you this if I couldn't vent here and to my family I don't know where I'd turn, you are the best. If I find anything out I will let you know. Love, thanks, and prayers to all.

John

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Posted 11/4/2006 11:52 PM (GMT 0)
I have made a decision, I am meeting with the research clinical oncologist next week Monday but I am calling Dr. Andriole that did my surgery and ask him for another recommendation and oncologist at Barnes. Think I just got a bad one or he was having a bad day.

Anyone have any ideas...... or questions I should ask the new radiation oncologist or oncologist.

I really appreciate you all.
John
Posted 11/5/2006 12:43 AM (GMT 0)
Hi John & Loved Ones,      I am so glad we touch you so deeply.!!    I guess you can tell you are extra special to all of us!!   A good cry is healthy so don’t hold back friend.   I continue to feel the emotions of others as I read their postings….. and the day I don’t feel the emotions…. is the day I need to stop visiting our forum.     John… please reach over and give your wife a Hug from us and when she returns the HUG that one’s from us through her to you.   And when you see your daughter ~ here’s a special HUG ~ for her too!!   And when you talk with your 70 yr old sister…. Tell her we’ve sent her HUG through prayer.   This is great news… about your upcoming appointment!!!   Get some answers so you can continue to move forward.   We will keep you extra close in our thoughts and prayers as you prepare for your meeting on Monday….     I keep reading in my Dr. Walsh’s book trying to understand the stones that are in front of you….   With it being 5 years old I’m sure when he titled a section:   New Options on the Horizon….. those options are probably readily available.   And you will find them!!!!!!!   We will be following your journey as you go forward to the next stepping-stone and we will still be right there beside you…. learning with you….   Please do continue to share each step with us!   Okay   Take care dear friend and know we care. In Friendship, Lee & her Buddy
Posted 11/6/2006 11:45 PM (GMT 0)
John,

I've missed your last several posts...I think you're on the right track with a new onco....and I think you (and I) made the best decision we could to operate.

I just had my PSA run today and it was .24 --- so we seem to be in the same boat.   I'm setting up an appointment with a radiation onco over the next few days.   REMEMBER -- we got rid of BILLIONS of cancerous cells in a 3 hour operation.  

Keep me posted - I'd like to compare notes with you.   GOOD LUCK!

Sterd82

Posted 11/7/2006 1:30 AM (GMT 0)
Sterd82,

I am due to have another PSA next week, am hoping for a lower one but since I had two in arow at .22 it seeems unlikely. Yes I will keep you posted and hope you will let me know what your docs say...... with four docs maybe we can hit on a winner. Yes billions out and a few to kill "one cell at a time"..... we can do this we have to have faith and be steadfast in our seeing a cure.


Prayers and "postitive" thoughts,

John
Posted 11/9/2006 2:00 AM (GMT 0)
John,

I have my Rad/onc appointment in three weeks so I'm lining up my ducks.   I'm also looking at proton beam radiation.  Have you (or anybody else) heard much about that for salvage radiation?

There's only a hand full of places that do this... I live in Indiana and they have a facility at IU Med Center.   It's 3 hours away, so an 8 week treatment would mean an extened stay arrangement.

Hope you're hanging in there....

Sterd82

Posted 11/9/2006 6:54 PM (GMT 0)

John and Sterd82

God bless as you approach the next path. You will be in my prayers

Daveed

Posted 11/12/2006 7:22 PM (GMT 0)
John
Their are alot of oncologist at barnes don't settle for one that makes you upset when you see him, WE don't need that in our lives after what we all have been thru. Let me know who you are going to see and i can get all the info on him for you, my wife works at wash U so she can help me. Remember I live close to you and if you need ANYTHING just CALL me !!!! I am here for you. I ended up on a low dose of a antidepresent to help me thru the roller coster effect. It is helping me alot Keep me up todate on how you are doing. I am back to work at the Ambulance. So if you need anything call Medstar Ambulace and they can get a hold of me or just e-mail me .
Rick
Posted 11/13/2006 3:21 AM (GMT 0)
Rick and Sterd82,

Thanks, I have an appointment tomorrow with an oncologist, Dr. Picus. He in charge of the clinical study that has to do with Hormonal therapy with chemo and without chemo, it allows radiation therapy at the same time when warranted. Dr. Michalski was the doctor I had issues with but according to Chris in Dr. Andriole's office he may have beeen having a bad day or actually said something he meant to only think. They (Dr. A and Chris) both think I should give Dr. Michalski another try. I guess we will. I am almost to the point of being over informed I have read and read and to the point now where I am really confused and scared. I guess I always assumed we had caught this in an early stage and it would be curable, now it seems we may be in a "buying" time mode. Advanced and agressive are both term the drs. are using. A cure is still possible but unlikely I guess from what I read.

Sterd82..... my insurance won't pay for any treatments outside the metro area of St. Louis so I guess Proton beam treatments are out of question.

I will keep all informed with any news.... maybe I'll know more in AM.

Thanks for keeping me in your thoughts and prayers,
John
Posted 11/13/2006 2:21 PM (GMT 0)
John, we'll all be eager to hear from the latest consult. We know exactly what you mean about information overload. You research and discuss so much that it does almost become too much. Now is a good time to have the greatest faith in medical technologies and an extreme belief in miracles, too!

Good luck, today.
Posted 11/13/2006 3:14 PM (GMT 0)
Dear John, Mel, & Family,     It is time to just stop and take a deep breath…. And let peace find you!   After your appointment today ~ you’ll have true answers hopefully and will be back on more stable stones…     You may have had another rough day today…. I hope not!   We can only hope that the path smoothes out a little for you so you can see clearly.   If the radiation is the next step… onward you will go to ~ achieve the best further treatment to maintain highest quality of life.     You definitely have a ”little bluebird” sitting on your shoulder!!!   And you can bet anytime any negative thoughts come into your being….. you will feel a little peck on the earlobe…… to let you know we are here with strength for you when the darkness tries to slip in.   So ~ I’m going to fill this little bluebird with extra stuff too!!!   Okay…. Are you ready……Here goes!!!!!! We are sending lots of extra positive thoughts and some of our strength to you right now!!!!!!!   When you feel the next ~ breeze touch your cheek…~   it is us … letting you know we are there!!!   You may have already felt it while you were out today….   I hope so!!   Keeping you “extra” close ~ in our hearts.   In Friendship, Lee & her Buddy   P.S.   John… thank you for the warmth I felt in your words on the thread started by Spinbiscuit….. Lee & Buddy 6 months already?     I hope you had a chance to see my response and know how much it meant to us!   Thank you friend.................    
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