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Posted 5/6/2010 12:37 AM (GMT 0)
Hi guys. Saw my uro yesterday. Got the old finger in the poop shoot. Yee haw.lol He said he felt a nodule still that hasnt gone away yet. My psa is rising and I have been off lupron since november. He said he is comfortable with my psa going to 10 before doing anything new. sound off boys and girls. FEEDBACK PLEASE. Todd
Posted 5/6/2010 1:00 AM (GMT 0)
todd, why wait till you get to 10? don't understand that. is that because your remedies at this point are limited?
Posted 5/6/2010 1:20 PM (GMT 0)
Todd, can't advise you --- just not knowledgeable. But, did want to let you know I was in your corner and cheering you on!

Sheldon AKA Sleepless
Posted 5/6/2010 1:39 PM (GMT 0)
Todd, as Sheldon says, I can't advise you, but know that with your numbers and history you are a daily walking miracle. Wishing you continued miracle status tongue
Posted 5/6/2010 4:02 PM (GMT 0)
I can advise you. Enjoy life whenever you can. We only get one and returns are not accepted.

That is all smilewinkgrin

Posted 5/6/2010 6:21 PM (GMT 0)
Well I feel like a miracle most of the time. Sometimes I feel like SH!%!!!!! lol. It is strange being stage 4 and doing watchful waiting. Doc says that the break from the hormones may prolong the time it takes to become resistant. It also helps my bones and muscles build and my arteries to unclog from the cholesteral that builds when you are on hormones. How do you make a hormone. Give it prostate cancer. dumb joke. Furthermore I dont really qualify for any other treatment until I go resistant so it is what it is. As long as the lung mets dont grow much the hope is that after a year lupron will make it go away again. If not then we wait and see. He doesnt want me on D.E.S. cuz of the risk of blood clots and stroke. oh well Life is sweet so be sure to brush and floss.
Posted 5/6/2010 7:23 PM (GMT 0)

living1963 said...
Hi guys. Saw my uro yesterday. Got the old finger in the poop shoot. Yee haw.lol He said he felt a nodule still that hasnt gone away yet. My psa is rising and I have been off lupron since november. He said he is comfortable with my psa going to 10 before doing anything new. sound off boys and girls. FEEDBACK PLEASE. Todd

Hi Todd,

I don't have direct personal experience with HT, but I have an acquaintance on "triple blockade" (Lupron, Casodex and Finasteride) and have learned a little about it.

He has gone through several intermittent cycles, and his doctor also allows his PSA to rise to around 10 before restarting the Lupron and Casodex (he continues with daily finasteride while on "vacation" from the heavy drugs)...similar to your doctor.

best wishes...

Post Edited (Casey59) : 5/6/2010 2:40:42 PM (GMT-6)

Posted 5/6/2010 7:39 PM (GMT 0)
Todd,
Can't say if 10 is a lot or a little. I can say you are still my hero: "How do you make a hormone..."
Keep your spirits, if not your equipment, up!
Jeff
Posted 5/6/2010 8:38 PM (GMT 0)
Funny jeff. Very funny
Posted 5/6/2010 8:40 PM (GMT 0)
Todd, have you read Dr Charles "Snuffy" Myers' book "Beating Prostate Cancer: Hormonal Therapy & Diet."  I must confess that I have not (as I said previously, I have no direct personal experience with HT), but my understanding is that for those on HT it is the very best available published information, and stands next to Dr Patrick Walsh's "Primer on Prostate Cancer - The Empowered Patient's Guide" as the most important books for PC patients. 

Posted 5/6/2010 9:09 PM (GMT 0)
Todd,
I have a tip for you that should work well with anybody. Since you are a high risk patient I will speak in the high risk sense. Setting a cutoff point is not a bad plan. But planning now what you would do when that point is reached is the part of active surveillance that you can be proactive about. Your docs are saying that when you reach a PSA of 10 that you will do what? Go back on HT, ADT3? What about alternative approaches like Chemo, estrogens, clinical trial, Provenge? Since your experience with ADT is the devil you know, what about the devil you may have to meet.

A look into where I am at: With my good reports recently, I have not hung up planning what to do should my cancer come back. I would like a sensible method to avoid androgen replacement. Provenge does appear to be something that I would like to do before chemo and DES. The problem with it is that getting insurance to cover it will be a challenge. Can I save 93k and get there. Judging by my recent appetite for ATV's and traveling maybe not so much. I certainly am not in a hurry to get back on ADT, but my insurance will cover it and chemo or DES. The concern I have with DES is high blood pressure meds and such. With my BP history there is potential that a regimen of DES could place my mortality risks higher than the cancer itself (remembering that I am high risk). Right now I don't have to make any decisions, but I am going to keep looking at it...

Always your friend...

Tony
Posted 5/6/2010 11:57 PM (GMT 0)
Tony, there are many options yes this is true. I do not know what my next step will be. I do not have 93k myself nor will I ever have barring winning the lottery which I do not play. I am not too thrilled with chemo, hormones or des. Given the choices mentioned above I am considering pain management. I am slowly drifting into depression and a feeling of despair. I dont know why as I am doing so much better than any doctor dreamed possible. I am slowly tiring of being poked prodded dr. visits scans blood tests and speculation. I am leaning heavily towards empowerment of self. I may choose to end my fight if it comes to that. My decision will come as things prgress. Todd
Posted 5/7/2010 12:45 AM (GMT 0)
Todd,

I certainly hope you get your third or fourth wind and resume the challenge. Few other men have challenged cancer the way you have with such spectacular reults. You are a winner !

Whether you wait until 10 or 50, your history would never suggest following the pain management route at this point.

I can't tell you what an inspiration you are to me and hundreds of other guys. I have concluded that God just isn't finished wth you yet.

Keep up the good fight, and enjoy your vacations from HT.
Posted 5/7/2010 12:59 AM (GMT 0)
Todd,
As I was saying on chat yesterday Dr "Snuffy Myers" is a strong advocate of intermittent therapy, a course of action that your doc seems to be following. His thinking also is that continuous use of ADT promotes the development of hormone resistance disease. It seems their preferred course of action is to knock it down each time it gets up. Given that Myers himself has serious disease and is a research prostate oncologist I would value his opinions and recommended actions. He is also a very strong advocate of diet playing a part in control of the disease.
Take care,
Bill
Posted 5/7/2010 4:15 AM (GMT 0)
I will read the book billymac. I would really like to come up with some alternatives. Thanks
Posted 5/7/2010 5:49 PM (GMT 0)
Hey goodlife,
How are you doing. You are right and I am a whiner. I gust get tired now and then and feel sorry for myself. I just dont want to have cancer anymore. It sucks so bad. I love my life and I will fight to the very last breath. Pain management will be my option of last resort but I sure look forward to the medical marijuana. Todd
Posted 5/7/2010 6:18 PM (GMT 0)
Hi Todd,
Your pep talk is queued up. I know you as a friend and I'll always be there to help. My motto here at HW is "Stay Positive". I can't stress enough how much I believe in the power of positive thinking.

Some of the next steps might actually be far more tolerable than that run on ADT. There is plenty of reasons to be motivated to look into them. One of my favorite pictures in all of Facebook, is you with your grand daughter.

And it's important to note that I noticed several different feelings while my hormone balances changed. What I felt one day, changed quite a bit as time moved on. For example, with my T levels getting closer to normal, I am completely intolerant of HGTV and shoe sales. And I just bought a new ATV and I still haven't read or asked any directions. :-)

Hang in there Todd! Love you my friend and keep the faith!

Tony
Posted 5/8/2010 4:10 PM (GMT 0)
Hi Todd,

No advice from me either-my husband hasn't even started treatment yet-but just wanted to say
"What's wrong with whining once in a while!" If it gets the negative feelings out, it's worthwhile. As Goodlife said, you're an inspiration to a lot of us . Well, maybe a little advice-do check out what Dr. Snuffy Myers says about diet.

Renee
Posted 5/8/2010 4:21 PM (GMT 0)
Todd,
I'd be honored to share a glass or two of "wine" with you any day! NY State Finger Lakes region, of course.
Jeff
Posted 5/8/2010 4:42 PM (GMT 0)
OK....my two cents....Dr. Stephen Strum is in your backyard. He is one of the best in the world for treating patients with Advanced PC. Call and get an appt. I believe they only accept a small patient load, but I have a feeling you could talk your way in :) He is in Ashland, OR. Get an appt and make sure to catch a play when you are down there :) PS Mrs. Strum was scheduling when I called. Just an FYI :)
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