Medical Forum / Diseases and Disorders / Prostate Cancer / January 2004
Hormone Therapy - How Long?
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Maurice - 08 Jan 2004 15:09 GMT Diagnosed 1/03 Gleason Grade 7, PSA=13 Started Hormone therapy 02/03 Lupron/Cascodex Radiation Therapy (39) 04/03 PSA 06/03 = .01 PSA 12/03 = -.008 My Dr. suggests hormone therapy forever. Worst side effects are hot flashes and gas.
How long is enough? My next Dr. visit is 02/04 so need to choose.
olfart - 08 Jan 2004 15:42 GMT > Diagnosed 1/03 Gleason Grade 7, PSA=13 > Started Hormone therapy 02/03 Lupron/Cascodex [quoted text clipped - 5 lines] > > How long is enough? My next Dr. visit is 02/04 so need to choose. I'm not sure the Doctors have enough confidence that treatments such as Hormone Therapy really do that much good long term. In my case I got my first shot of Lupron on 12/17/03 (good for 4 months). I will begin Radiation Therapy for 5 weeks in March 2004. I also started taking Flutamide a week before the first Lupron shot and will take that for 30 days. When I asked how long I would continue this the Urologist first said "probably for the rest of your life". When I asked the reasons for this he hesitated a minute and then said "well at least for a few years". When I asked for more details he said "well probably for a year". This Dr has a good reputation and has been in the practice for over 15yrs. I am also seeing an Oncologist and a Radiation Oncologist and will ask them both about the length of hormone therapy when I see them again in March. They are not affiliated with the Urologist. He is the one who did the biopsy and initial diagnosis and since he is closer to where I live I let him do the Hormone Therapy. I'm 68 and the diagnosis was Psa=4.8, T1, Gleason 4+4=8 with cancer cells in 1 or 8 biopsy specimens. It's been about 3 weeks since the first Lupron. Have had no problems with flashes, gas, etc. Just very low energy and headaches. Maybe the other side side effects will come later. Sorry I don't have a specific answer for you. Good Luck
olfart - 08 Jan 2004 15:49 GMT > > Diagnosed 1/03 Gleason Grade 7, PSA=13 > > Started Hormone therapy 02/03 Lupron/Cascodex [quoted text clipped - 25 lines] > effects will come later. > Sorry I don't have a specific answer for you. Good Luck ...in 1 of 8 specimens...
Leonard Evens - 08 Jan 2004 20:50 GMT >>Diagnosed 1/03 Gleason Grade 7, PSA=13 >>Started Hormone therapy 02/03 Lupron/Cascodex [quoted text clipped - 25 lines] > effects will come later. > Sorry I don't have a specific answer for you. Good Luck Your Gleason score of 8 was probably the reason why your doctor suggested the drugs might have to be continued indefinitely. But you should ask him and the other doctors just how they will decide if it is necessary for you to continue indefinitely. I would guess that one method would be to take you off the drugs and see what happens to your PSA. I can't imagine another method, but there may be one.
Maurice's Gleason is only 7. It might make a difference whether it was 7=3+4 or 7=4+3, with the latter being more like an 8. Also, he didn't give the stage. And of course both of you had initial PSAs greater than 10. On the other hand, I've known other men who have had Gleason 7=3+4 cancers treated by radiation who are not on long term hormone suppressing drugs.
Alan Meyer - 08 Jan 2004 22:28 GMT > > Diagnosed 1/03 Gleason Grade 7, PSA=13 > > Started Hormone therapy 02/03 Lupron/Cascodex [quoted text clipped - 25 lines] > effects will come later. > Sorry I don't have a specific answer for you. Good Luck I have also seen some varying views on this. Publications citing clinical trial data are ambiguous. Some indicate benefit from long term treatment, some don't.
There are negative side effects of long term treatment. The most serious one I'm aware of is osteoporosis.
Another concern is that, if the treatment is extended beyond some limited period of time the ability of the body to produce testosterone may be permanently impaired.
Still another is that long term hormone suppression is just not adequately studied or understood. A mechanism as complex as the human body can undergo all sorts of unrecognized effects when something as fundamental and powerful as hormone balance is disturbed.
I have seen the figure of one year bandied about as a cutoff point for these concerns. People treated for less than one year with hormone suppression are not likely to suffer long term effects. After one year the long term effects become an increasing possibility. But of course mileage varies with each individual. Some may be at risk when treated for less than a year and some may endure many years without damage.
Intuitively, intermittent therapy makes the most sense to me. Take the hormones before radiation to shrink the prostate and (hopefully) increase the effectiveness of the radiation (there is debate about that). _Maybe_, continue the hormones for a short period after radiation on the theory that radiation does not do all its work against the tumor cells during the period of radiation itself - maybe. Then stop.
After radiation, the PSA will go down, maybe up, maybe down again and, if the radiation was successful, settle at a low value (but probably not undetectable as with successful surgery). If, instead of settling at a low value, the PSA starts climbing and continues to climb, resume hormone treatment to get the PSA down again.
Hopefully, the PSA will never start climbing and you'll never need hormone therapy again. Only if that fails, then resume hormone therapy. If the radiation killed all the cancer, it seems crazy to me to continue taking hormones. You'd be treating a problem that isn't there.
However even after PSA failure, I'd personally be inclined to get the PSA down with Lupron and then stop the Lupron until it starts to rise again. From what I've read, doing that does not lead to earlier death than continuous treatment - though there is argument as to whether it leads to later death. The intermittent approach apparently will prevent the negative long term side effects.
It is rare, but not unknown, for a person not to need repeated doses of Lupron. There have been cases reported of PSA brought down with Lupron, the Lupron stopped, and the PSA never rising again.
According to Dr. Strum's book, the better a person's reaction to HT (i.e., the more it brings down his PSA), the longer he can go between doses. He says he's seen people who get HT after PSA failure and then go four years before they need the next dose - after which they can go more years.
A urologist's opinion on all this is certainly more educated than mine, but I wonder if some of the uros that advocate HT forever are doing it without adequate knowledge. Maybe some of them imagine that they're being conservative - not realizing that it's not conservative to administer powerful drugs to treat a problem that may or may not be there.
Alan
Leonard Evens - 08 Jan 2004 20:42 GMT > Diagnosed 1/03 Gleason Grade 7, PSA=13 How old are you?
Which stage? It should start with a T.
> Started Hormone therapy 02/03 Lupron/Cascodex > Radiation Therapy (39) 04/03 > PSA 06/03 = .01 > PSA 12/03 = -.008 > My Dr. suggests hormone therapy forever. Worst side effects are hot flashes > and gas. Would loss of sex drive be a problem for you?
> How long is enough? My next Dr. visit is 02/04 so need to choose. Hormone suppressant therapy is often used temporarily in combination with radiation to make the cancer cells more susceptible to damage by radiation.
Hormone suppressant therapy will usually bring the PSA down pretty quickly, but it will go back up if you stop taking the drugs. Following radiation, in absence of the use of such drugs, the PSA should come down to some lowest level, but not nearly to zero, and then if all is well stay there except for some minor variation. If the PSA starts up again, that is an indication that the cancer has spread beyond the area of the prostate and the radiation treatment did not cure it. At some point after than, hormone suppressing drugs might be prescribed in order to control the metastasized cancer.
If your doctor wants to continue the drugs indefinitely, he presumably has a reason. You should ask him what it is. There is some recent evidence that such drugs applied early and continue may have a beneficial effect, but on the other hand if the cancer has indeed been cured, you don't need to suffer the side effects of the drug. I believe there are still some considerable differences of opinion among prostate cancer specialists about when and under what circumstances hormone suppressing drugs are appropriate. But a lot depends on the individual circumstances of the patient.
Good luck.
Steve Kramer - 08 Jan 2004 20:51 GMT Well, as we know, the biggest problem with HT (at least once you've decided that life is more important than sex) is that after so many years (different in each) you go refractive. Of course, if you go 8 years (which I think is more or less the average for going refractive) you'd be 77 years old. You'd probably still have a few good years after that. So, let's put you at 80 when you start having serious PCa problems.
Intermittent HT might extend that some. Then again, it might not. The theory is that it should, but I don't think there has been any studies that has proven that it does.
And, there is always the possibility that you are cured. The original HT was to make the cancer small. Zapping it might have killed it all. There is no indication otherwise in your case.
I think I would consider going another year, then going off and seeing what happens. Then make a decision as to whether you want to go back on the rest of your life.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
> Diagnosed 1/03 Gleason Grade 7, PSA=13 > Started Hormone therapy 02/03 Lupron/Cascodex [quoted text clipped - 5 lines] > > How long is enough? My next Dr. visit is 02/04 so need to choose. olfart - 08 Jan 2004 21:21 GMT > Well, as we know, the biggest problem with HT (at least once you've decided > that life is more important than sex) is that after so many years (different [quoted text clipped - 14 lines] > happens. Then make a decision as to whether you want to go back on the rest > of your life. Sounds like good advise Steve. No sense in getiing too far ahead of yourself. Have to take this thing is steps. Treatment options will change (hopefully improve) with time anyway (we hope)
Jamie - 10 Jan 2004 11:27 GMT Steve
I've just seen an Urologist in Harley St and a medical Oncologist at the Middlesex in London and both say that the average time to hormone escape( refraction) is between 18 and 24 months. I've been on Casodex for a year now and my PSA has started going up from 0.3 to 5.2. I'm now on Zoladex. My fingers are crossed.
I see lots of posts here from people who are in the early stages of PC but very few from those who are in the later stages. It would be interesting to hear from these experienced people.
Jamie
PSA 6.2 1/00 PSA 8.7 11/01 Gleeson 4+3 Casodex + Zoladex 1/02 Radiotherapy 6/02 PSA 9.1 9/02 PSA 24.0 1/03 Casodex 1/03 PSA 3/02 0.3 PSA 5.2 12/03 Started Zoladex
> Well, as we know, the biggest problem with HT (at least once you've decided > that life is more important than sex) is that after so many years (different > in each) you go refractive. Of course, if you go 8 years (which I think is > more or less the average for going refractive) you'd be 77 years old. You'd > probably still have a few good years after that. So, let's put you at 80 > when you start having serious PCa problems. Snip
Steve Kramer - 10 Jan 2004 11:44 GMT Ouch! Well, that's not good news. I was counting on at least 5 years. At my age, I never expected that refraction would take the average time.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
> Steve > [quoted text clipped - 32 lines] > > > Snip Steve Kramer - 10 Jan 2004 11:49 GMT BTW, I was wondering, why wasn't your PCa treated in 2000? Anything over 4.0 was an alarm then.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
> Steve > [quoted text clipped - 32 lines] > > > Snip Jamie - 10 Jan 2004 17:26 GMT Steve they did a biopsy and found nothing. If I had known then as much as I know now about PC I would have gone for a second opinion. Instead I just had 6 monthly PSA checks which showed the PSA remaining around six. They assumed it was BHP as I had a largish prostate.
Jamie
> BTW, I was wondering, why wasn't your PCa treated in 2000? Anything over > 4.0 was an alarm then. Steve Kramer - 11 Jan 2004 21:10 GMT Ah, that makes sense. I saw you had one from January of one year and from November of the next year and thought, "what a shitty doctor." Although, assuming they treated you for BHP, staying "around six" is probably difficult to decide another course of action.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
> Steve > they did a biopsy and found nothing. [quoted text clipped - 6 lines] > > BTW, I was wondering, why wasn't your PCa treated in 2000? Anything over > > 4.0 was an alarm then. Danny McCarty - 09 Jan 2004 17:45 GMT Not enough information. free PSA, Gleason? The very low PSA is probably due to the lupron. Don't expect to stop that...
firechief - 15 Jan 2004 07:31 GMT > Worst side effects are hot flashes and gas. Your doctor is not telling you the whole story.
How about ankylosing spondylitis and breathing problems?
olfart - 15 Jan 2004 14:35 GMT > > Worst side effects are hot flashes and gas. > > Your doctor is not telling you the whole story. > > How about ankylosing spondylitis and breathing problems? Here's a list of side effects I found on the Net. http://www.hypertext.org/ENGLISH/HB.html#sfx I started Flutamide and Lupron a month ago and so far have only experienced headaches, some joint aches, some drowsiness and insomnia. It's quite a long list and should vary depending on the individual, but at least I know what I might expect as time goes on. Hope this helps.
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