Stopping Hormone Therapy

[JohnThomas]

Hello..
I am new to this site altho I have been following post's for awhile. Very good info here!
My question is what happens, what can be the consequences of stopping Casodex/Finisteride..(50mg/5mg)..after 3 months with a test yesterday showing PSA down from 1.9 to now a 0.5.
This is the first of any therapy I have had since radical prostatectomy in Dec of 2004. Lab report gave us a T3@NOMO Stage 3 w/Gleason 4 + 3 = 7. Small focus grade 5 at that time.....
I went 3 years w/o PSA detectable.
As I read I find one goes into "refractory" after just so much ADT. SO, why push it? I understand intermittant therapy and asked for it as my Urologist agreed to it also. He also recommended 9 months of it which would be another 6 months of this stuff! UGH! Would'nt holding off ADT to a preset PSA low count..say less than 1.0 be a good way to extend the therapy? As it is the Casodex/Finasteride daily dose has put me into a general fatique which is hard for me to be at all active and I'd like to stop it for awhile. Any info on this would help me a lot. I WILL discuss this with my Doc also..
Thanks!

[George A. Brown]

Hi John,
Most of the literature states that three years is the most optimal length of time for Hormone Therapy. I am 76 and have been on ADT3 (Degeralix, Casodex, Avodart) for 13 months and had some pretty difficult side effects. I was taken off because of some cardio-vascular problems which HT agravates quite a bit. HT is difficult to take and it causes side effects as does any treatment for PCa. Some docs really take a hard look at QOL issues in their parients and others, well, they don't seem to care. Other docs advocate for Intermittent HP, but he literature points to 3 years as best. George

[Steve J]

That "small focus of Grade 5" PCa is a red flag for aggressive disease.

There really is no hard and fast rule for the useful life of ADT, pretty much like just about every other facet of PCa. I recommend continuing until it is no longer effective, whenever that might be.

One follows the ADT course with frequent PSA tests; in my case, FWIW, I selected a 28-day test cycle.

Because ADT (at least the LHRH agonists such as Trelstar, Zoladex, and Lupron in its various guises), is intended to suppress production of testoserone (T), the relevant androgen, it is IMO prudent to keep an eye on serum T. According to Strum and other such experts, the target T is =/< 20 ng/dL.

Please note that the PSA is likely not to decline unless made to do so by, frex, ADT.

I recommend looking up Casodex and finasteride (Proscar) on the comprehensive med site www.rxlist.com There is a wealth of helpful information on rxlist, including SEs.

Lastly, there is no good reason at all for a patient to experience unbearable SEs of ADT. What he needs is a knowledgeable and caring medic. And/or self-education. Two excellent essays on Androgen Deprivation Syndrome and how to address the symptoms are available here:

http://www.prostate-cancer.org/education/andind/Guess_TestosteroneS...
or
http://tinyurl.com/2ymb8f

http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html
or
http://tinyurl.com/g6fzp

Regards,

Steve J

[E. Michael D. ("Mike") Scott]

Dear John:

I think you need to be very careful about stopping hormone therapy too early. Steve is correct when he says that the "small focus of grade 5" disease is a real potential problem. The normal period of time before one comes off hormone therapy in an intermittent hormone therapy protocol is 8-9 months AND you also want to hormones to drive your PSA level down to an undetectable level (<0.1 ng/ml) if at all possible.

Take Steve's advice and have a look at what can be done to ameliorate the side effects you are feeling. Make a real effort to exercise. It WILL help.In addition, it takes the body a little while to adapt to hormone therapy. It may get a little easier adfter a month or so more.

[George A. Brown]

It never gets easier. You get tougher and develop a "to hell with the hormones, I have to live my life", and continue. Sometimes you can't. It's no walk in the park but maybe you will be taking walks in the future because of the Hormone Therapy. Hope so. Just do it. Says me who just wimped out.!

[JohnThomas]

George..Yer a funny guy..the tattoo pic kinda lifts me up here in Northern Michigan.
I find myself so tired.... I have never experienced this type of fatigue even after a hard day at pouring concrete. (I was a custom home builder for 27 years)..so it knocks me back a bit. I am reconsidering cos all you guys advice here.. But not looking forward to the next 6 months!
Cheers

[George A. Brown]

John,
Thanks for the reply. When I received my first 4 month Lupron shot in May 08 I was not even told what it was. The doc said it will eat up the cancer cells. I asked are there any side effects. He said some hot flashes for 4 months. One week later I could not get out of bed. My wife thought I was faking and went on a 2 week vacation with friends to cabo with no food in the house. I have great difficulty remembering the following 2 months. Called the doc and he said I don't handle the side effects. You have to contact your PCP who never treated a Lupron adict. Ended up in the hospital in June 08, unable to care for myself. Chills, not flashes, shakes, dry heaves, out of control diabeties, heart rythum problems, cognitive loss, memory, sense of direction, no hair on body, AAA battery size dick, no balls, swelling breasts, other than that I felt fine. One close sucide almost attempt, zero QOL and major depression. Calledl my friends to say goodby. Us Too had one of their members call me from CA - probably saved my life. Thanks R.D. Got a second opinion and began an intensive exercise program, 33 EBRT and 13 months of ADT3 and am alive, I think, today. The best thing that helped me was this web site and all the great people here and the Us Too support group and a great medical institution the Univ of CO Hosp. But what really helped was an intensive exercise program. It will really help with the fatigue. You would not think such would be the case, BUT IT WORKS. I am glad the tattoo pic works for you also. No body hardly ever knew I had one. This was my first outting. Now get some blood test because all men with PCa usually have anemia and osteopennia. So get checked before working out. The next ting keep telling us how you are doing. Give me your tele. number and I will call once a week to cheer you on. Email is [e-mail] . John, we are all in this together, brothers and sisters in arms, holding each other up. Lean on us, and when you get strong again, let others lean on you. Go to www.pccac.wordpress,com and sign the pledge and join up. Gather us around you. Your Friend George ( the one with the funny tattoo) OK? Respond TKS

[JohnThomas]

Don't mean to get personal..please forgive..but..you still married????
Now get some blood test....
I had blood test this Tuesday. Lipids OK. PSA down to 0.5 from 1.9 in February.
intensive exercise program...
I will check into this as I had been thinking abt it anyway. My garden and shop is abt all I can do due to fatigue tho. I know a Phys Ed trainer.
Thanks for the boost George. Now I go look into your wordpress site. I think it needs a period in there instead of a coma????
Cheers

[JohnThomas]

By the way...How'd you know I was a Sailor????

[George A. Brown]

Sniff......Sniff.... You smell like a sailor!!!!

[Bradley Stanton]

John,
I have been on intermittent hormone therapy since 1998. My usual on cycle has been 9 months. I stay on the off cycle until my PSA nears 5.0. It has only been in the last year that signs of "hormone refactory" are present.
I did not choose to take casodex as part of the regimen. It has been offered over the years but I only wanted to deal with one set of side effects & so have declined. It is important to remember that each patient is different and that the statistics about how long hormone treatment will last is nothing more than statistics. For some the time will be short and for others, like me it will be long.
My original Gleason was a 7 (4+3) and there was evidence that the cancer had left the prostate. Not a good diagnosis, but I hit the 12 year mark this May!!! I had radiation as surgery was not recommended. My cancer showed that the radiation didn't do the job within months of completing it.
I facilitate a Man to Man Prostate cancer support group and have done so for 11 years. If I can be of any help let me know.
Brad

[JohnThomas]

Brad..Thanks for the input.
I agreed to the Casodex regimen with Finasteride..which I understand, one needs a blocking androgen when taking an anti androgen such as Casodex. Urologist and Oncologist both knew I was still active and working and so I expect they chose this path as the least interruption to my life/work.
I hope I don't sound like a whiner here, don't want that....just looking for other guys to bounce off of with similar experiences. I do feel a bit better now that you guys have sent me info, and of coarse, reading between the lines gives me more in depth understanding of this PC and where I may go with it.
I just finished hoeing three veggie gardens..started early cos of the heat..and feel sweaty but good...Thanks to you guys!
Cheers

[Bradley Stanton]

John,
As a bit of an update - I decided to quit having the lupron shots in late January. My reasoning was - I thought my body needed a rest and I was soooo tired of the side effects from the lupron that I felt I would have a better quality of life just letting the cancer do its thing. Remember I'm 78! Just had my latest check up at the end of May and expected my PSA to double, as that was the previous pattern. Wonder of wonders the PSA stayed the same. It is either a fluke or the beginning of a miracle. Will know more when I have my next check up in September.