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Posted 10/5/2008 10:41 PM (GMT 0)
How many following this forum have stopped Hormone Therapy and remained in remission?

The criteria I am looking for is stage 3 or 4 that started any of the LHRH agonists, either adjuvantly or salvage, for a period of 1 year or more and stopped it but were able to remain in remission.  I don't recall meeting too many here over the last almost couple years.  I am scheduled for my last injection in January and will complete a two period on it over the summer.  I am thinking about a couple things.  One, I haven't seen this question asked.  It seems that there are very few signatures that have, though I just found a couple.   And two, for how long were you able to remain in remission? 

I look forward to your posts. smurf

Tony

Posted 10/5/2008 11:16 PM (GMT 0)
Tony I to will be watching this post as it will effect me greatly. I have had two different doctors at two different hospitals tell me to stay on it for three years so I still have 18 months to go. What have you read about the prognosis of metastatic stage 4?

peace to you
Dale
Posted 10/6/2008 12:21 AM (GMT 0)

Dale,
I have found several who, once acheiving an undetectable PSA have held up great for years.  You may know one at TNPCIL ~ Ralph Valle.  Ithing he was detected in 1993.  So was Michael Milken, and he is still around to do great thing in prostate cancer research funding and philanthropy.  Both of these guys are all over the internet, advocating PCa...

Ralph's Page

Michael's Page

Tony

 

Posted 10/6/2008 10:49 AM (GMT 0)
Hi Tony,

It's been a while since I've posted on this Forum but I am very interested in seeing responses to your question. As you know I am just about 4 months behind you in treatment and will take my last Lupron injection this coming April. I was just talking with my wife yesterday about the consequences of what is going to happen after the last shot.....By the way I am doing fine, still receiving undetectable psa's at each Dr. visit....next one coming up this Thursday....Now my big concern is Insurance.. my plan is taking on a new company the first of the year and my Urology doc is no longer in the plan....could still use him but mucho more moneys involved. Been praying about it, so all should work out in the end.

As always, good luck to you and all the best.

JWB...
Posted 10/6/2008 10:58 AM (GMT 0)
jwb187, most plans offer continuation of coverage with old doctors not approved on new plans if you are in the middle of a treatment plan. You might want to check on this.
Posted 10/6/2008 12:55 PM (GMT 0)
  US TOO Wichita Chapter has alot of info. on ADT therapy on their site www.ustoowichita.org.  Go to the Observation link on the left side.  There are very good articles on this subject written by Charles Maak.

Posted 10/6/2008 4:30 PM (GMT 0)
Jerry,
That's a great link. I know Chuck through the forums, and he does write well about this stuff. My curiosity is extended to this membership, and I will do the same at other sites. I am very aware of other writings as well on the subject, but I just don't see a lot of guys who are doing well, talking about it online. Maybe we will soon.

Thanks for your note.

Tony
Posted 10/8/2008 3:41 AM (GMT 0)
Well, I didn't expect a rush of posts here, but a couple experienced posts I was hopeful for. I am going to take this post and advertise it around. I will post those results here. I know of a few sites Where there are some guys that might be able to shed some light on this.

I would say though that I am not discouraged. Much has been made about IHT, or intermittant hormone therapy, but I think a key word here is intermittent. Which does not suggest start then at some point stop and not resume, but rather periods of HT on then off then back on, etc.

So I am bumping this in hopes for first hand experience responses.

Tony
Posted 10/9/2008 12:54 AM (GMT 0)
I to have been watching this post and hoping some people would share their experiences. OVer the last weeks I have felt the worst I have since all this started. My fatigue level is terrible and my mental acuity is gone. I do remain hopeful that we can find new and better ways to combat advanced PC, but I suppose for now all we have is ADT.
Tony thanks for all your research and hopefully I will get to share with you personally soon.

peace and love
Dale
Posted 10/9/2008 1:13 AM (GMT 0)
Hey Dale,

Fatigue and fuzzy headedness aren't fun but neither is anything else in this fight. Chemo does that to me too for about 10 days after infusion. Remember that the enemy is much worse off than we are and we are winding up to deliver the knockout punch. Hang in buddy. FIGHT!!!

Jim
Posted 10/9/2008 2:41 AM (GMT 0)
Tony - did you try: http://www.yananow.net/
You can find men who had used ADT but have stopped or are using in intermittently.
Posted 10/9/2008 4:04 AM (GMT 0)
David,
I have been a member at Yana for over a year and I am in contact with a few of those guys. Most either have just stopped HT or have stopped and had relapses. There are but less than a handful that have had long term success without relapse. Guy's like those named above are doing well, though are not in total remission. Some are in their 15th year. Encouraging, but I am just 46 and my goal is 86, and it would really be optimum to be retired out on the golf course with wonderful friends like you!

Tony
Posted 10/9/2008 1:22 PM (GMT 0)
Tony,
Your original question was: The criteria I am looking for is stage 3 or 4 that started any of the LHRH agonists, either adjuvantly or salvage, for a period of 1 year or more and stopped it but were able to remain in remission.

I would imagine you are going to have a hard time finding many men that meet this criteria, particularly stage 4 men, simply due to nature of and aggressiveness of the disease in stage 4.
Posted 10/9/2008 3:02 PM (GMT 0)

Tony and All---

Great question.  My results are not very long term, but here they are:  I had 2 three month Zoladex shots in conjunction with RT --- my first shot was December of '06.  I've had clean PSA's ever since.   Because it took another 6 months for my testosterone to click back on, I guess I've had one year of clean PSAs since treatment stopped.

Of course, was this the result of the radiation getting the residual disease, or did the HT play a role?  My oncologist has cited several patients with lasting responses to HT --- he has one patient going on 7 years since coming off of HT with clean PSAs.....

Posted 10/9/2008 3:26 PM (GMT 0)
David,
I know for the stage 4 guys it is very rare. More common for the stage 3 guys who chose adjuvant HT to hold a long remission period. I was 3B and was able to achieve an undetectable PSA from surgery. But they suspected that I still had residual disease after the pathology showed "grossly abnormal" results, so we added RT and HT adjuvantly in hopes to hold that remission for many years if not permanantly.

I remain hopeful that my "proactive" approach will chart new ground...Why not?

Sigh,

Tony
Posted 10/9/2008 4:32 PM (GMT 0)
sterd,
Thank you for the reply. That is exactly what I am looking for. Since IHT is being touted, where are the successes? Keep going buddy... I look forward to seeing you in remission at year 7...with me doing the same...

Tony
Posted 10/18/2008 4:59 PM (GMT 0)

I mentioned that I posted this elsewhere.  The link below has some excellent replies I would like to share.

TC's post at the New Prostate Cancer InfoLink

turn

Posted 10/29/2008 6:01 AM (GMT 0)
Bump with good posts at TNPCIL...
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