Cancer Survivors Network

Those web sites I look at did not mention some quality-of-life issues, which are of course of great importance.
Your situation is very different from mine (I have had robotic prostate removal surgery, but unfortunately it had spread--so, hormone treatment is my follow-up treatment).
One have to realize that Lupron (and Trelstar which I got) is in effect chemical castration (although reversible) --so, if you have a good sexual life right now, it will likely stop, which will perhaps bring depression, etc., Weight gain, flabby breast, etc. may follow also. In my case, by choosing surgery, I have already made the decision to suffer some of these conditions already.
Good Luck

If you do not have a female partner then the side effects you mentioned are enough. If you do have a partner, remember that the other serious side effect is loss of libido. The urologists and oncologists act as though this does not matter, but they are wrong. I am the wife of a chemically castrated male and my life has become pretty miserable. I take antidepressants now to get through the days. I am committed to getting him to the end of this miserable disease but it is not an easy task.

GOD BLESS YOU! and I Pray for his recovery and your ability to mend yourself!

Randy in Indy

Jojo, thanks for posting. what I call "the shot" is just outright terrible. Plus the mood swings, plus....

My dear wife is so encouraging, but I know she misses me as much as I miss her. I am not on Lupron, I"m on Eligard, but I can not imagine anyting being worse than eligard. I feel like I am knocked down every day and then kicked for awhile.

At the Doc's office it is a look of "What is the matter with you? Other men get these shots, too." I think I cry some every day now.

Nasty nasty shot.

You are a good wife.

I like your attitude of putting your wife's concerns first. She is very blessed to have you. My husband had Lupron injections for 28 months. His last one was January 2009 and he is still having hot flashes. His doc says he doesn't know how long they will last. His last PSA was 0.1 so the shots are still working, thank God. But he is going crazy with the hot flashes and still no sex drive. I'm just thankful he's still here with me. Have you or anyone else out there heard of anything that will ease the suffering of these hot flashes? Someone told me to get him some wild yam cream and try that and see if it helps.Any help or advice would be greatly appreciated.

Thanks so much for everyone's comments.

As pointed out, the PCa balancing act must consider your spouse first, then quality of life versus expected longevity given any treatment modality a distant second.

I cancelled my scheduled appointment for the first Lupron shot (this Wednesday) and substituted it for a further consult with my Oncologist. What I'm in the process of discovering is all doctors have their own "boiler plate" treatment approach and seem to resent questions concerning any deviation. Example: when I inquired about Firmagon as a possible substitute for Lupon my question received a non-verbal brush-off.

I'm well aware that my treatment options are limited but am determined to make the best decision for BOTH of us even if this requires further study while the clock continues to tick.

Mitch

I ran into a few of brush off stories when I was at Loma Linda U for treatment. A guy from AZ found out about proton therapy 2 or 3 days before his scheduled surgery. He scheduled an appointment with the doc and asked him about proton therapy. this guy's time was fortunate, just before Xmas, and LLU had an opening and his stats would fit in well with proton therapy. Well, the guy from AZ told his doc he was thinking about trying proton and the doc shut him off, said if you go for proton DON'T come back here. Some much for compasionate care. The guy said, "well thank-you doc!!" and got up and left his office and went straight out to LLU for the proton.

On the hormone shot question. i am on eligard. has the same symptoms you discribe for lupron. Reading your inquiry I think I will just continue the side effects from the eligard and stay with my program for another year. Shot #3 is due in April, then #4 in October and some in the year or so that follows the effects of the eligard will wear off and I'll see how the surgery, radiation and homrone do.

PC into the bone is a scary thing. I am sorry you don't have any easy choices, but remember, you have a dangerous condition. Fight it!!

I get eligard injected into my stomach fat. Burns for about 10 minutes and then its ok. Sounds a lot better the butt shot.

I just want to wish you the very best outcome. I have been struggling with the quesiton of whether to stay on th eligard or get off. I think you have pretty much convinced me with your post to stay the course. I wish there were better options, but I guess that is life. Take what you are dealt and make the best of it, like a man.

I do cry once in awhile over all this.

Virgil, I think you are the first man I have heard of who has had bone invasion reversed and lived. How come I have not heard of this happening before? thank-you for your story.

Connie, I would like a few more details about your dad. What was his PCa like? His gleason? Did he have positive margins? What other treatment did he have and what was his age? You many have said all this somewhere up above, but eligard (and probably lupron, too) also messes with your memory.

I would like to think what I am going through on eligard (like lupron) is actually doing me some good. But this is an honest statement: I hate "the shot!" I was told the shot only works so long, then it will just stop being effective. So I am hoping surgery and radiation have done their work well and "the shot" will give my body a chance to recover and build up some natural defenses. And then the shot will be done, and I find out how everything holds. Talk about excitment!!

Lupron and other such hormonal treatments are a viable alternative to doing nothing, however there is absolutely no evidence that using these increases the life span by any significant measure. If you do not care about your quality of life then take all the shots and deal with the side-effects, if you want a better quality of life do not take the shots. I choose the latter and can say with complete certainty that I made the right choice for me.

I am taking your challenge and starting to search for info on survivial rates for those getting hormone therapy- like me. I absolutely hate the stuff and if I can find a good reason to quit, I'm quitting!

Here is one article:

http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Brief_Hormone_Therapy_Boosts_Prostate_Cancer_Survival.asp

I discussed this topic with my oncologist at Loma Linda. All he would say is that a 2 year treatment plan seems to have benefit over 1 yr. My next 6-month shot is scheduled for April 22.

The article cited above also says:

"Because the study only looked at men with cancer that didn’t extend outside of the prostate, its results can't be extrapolated to other types of patients."

Be careful about interpreting the importance of study results to your own case. I'm metastatic HRPC, so this study does not apply to me, for example.

Yes, I read that, too. I do so very much want to quit eligard- but I am also a little afraid to quit.

I am having a lot of cramping the last few weeks from the radiation. You see, I really would like a nice clear concise report that would just let me get out of this whole......

Oh well. Stuck.

I spent plenty of time before starting treatment, after being told I had a 50% chance to survive two years and a 2% chance to make it ten years, trying to find proof that hormone therapy actually extends one's life. All studies showed either no increase of time or at most a few months. I also looked at the side effects and so should everyone else. I was told I had to have one shot to shrink the tumor or else the radiation would be less effective, so I did that one and had a successful 40 rad treatments which totally killed all the cancer in the prostate. The cancer that had spread is what has my psa over 100 again, but it is only a number, and plenty of men have psa readings in the 1000's and keep on living. My treatment is work a part time job I like, work in the garden, and play golf whenever possible and allow no stress to come into my life. I truely believe that if I had been on a steady diet of Lupron that my quality of life would be much worse, because right now it couldn't be much better.

I am very happy that your decision to not take the hormonal treatments is the right one for you. My husband feels much better even with the Lupron side effects than he did before. Every body is different....cancer is not the same from person to person. I sincerely hope that you remain in a state of good humor and that your quality of life remains as you wish.

Yes we are all different. I don't like the idea of 2 more 6-month shots, but I am going to take them.

And yes, we are all different, all dealing with the same cancer that is probably different in each of us. sort of. maybe. Do I have any idea what I am talking about? LOL!

My, I do hate those shots.

My oncologist said that no two cancers are the same, because each cancer is made from each victim's own unique genetic material. That's also one reason that it is so hard to cure.

More complications!!

Humbug!!

Trew, have you asked your oncologist about monthly injections? That is what my husband does. I don't know, but I think it is a lower dose than the injections you get less frequently. Wonder if that would ease some of the side effects? I have no idea, just a question.
My hubby hates the shots too. Heck, I hate them too!

Yes, I've had days like that. It isn't just you.
I got on an antidepressant a while back. It helped for a while, but then last fall I had a bad spell. Of course, that had something to do with suffering from crippling bone pain. They upped the dosage, and it went back to working again. If you aren't taking an antidepressant regularly, I would suggest that you might want to ask your doctor about it. And if you are, I would still suggest that you might want to ask your doctor about it, because it sounds like it's not working.

You don't need to put up with it. It's treatable.
Like one ER doc said to me; "You don't get extra points for suffering."

Erisian, I really appreciated your reply- thank you very much.

One thing about antidepressants is they also have side effects and I have about all the side effects I can handle right now.

Sex is gone.
Continency is gone but gradually returning again since rad.
Energy is gone.
And I fight to keep my weight in check. If I were to put on pounds right now, I do not think I could handle it emotionally. I am trying to hang on to something that gives me a little self respect.

The last two days have been ok. I have increased my exercise and I will go on.

Extra points or not.

I still hate eligard!

Speaking from my 2 1/2 years of experience...
The key to a relatively painless Lupron shot is keeping the target muscle completely relaxed during the injection. I've had 2 or 3 shots that really lamed me up for 3 or 4 days, before I found out about relaxing.

Yes we are old survivors from a cancer that keeps being young.
This thread is one year old but the story repeats many times over the past decade.
The impressive on treatments to “kill” the bandit is that they are not successful in killing the cancer but have most success in severing our status. Just as Virgil33 above comments in his 23 years story “Hormone blockade is MUCH less morbid”.
Lesser "morbid" than HT, only “doing nothing” as 2nd Base.
Eligard has been friendly to me since our “marriage” on this first 6-month shot. I hope for a “divorce” in one year and then marry again for 18 months.

Just over one year ago today, I was put on lupron. If you look back on this thread and others that predated April 2010, I read everything I could. For, I was getting lupron on April 12, 2010 and then climbing on an airplane two days later. These threads, earnest as they were, scared the living daylights out of me. Should I cancel my 3 week cruise, etc.????

Well in my case, nothing happened. Well, I have to admit to a little injection site pain for two to three days. That was it. Period. Yeh, I was probably lucky, but it can be that way. So now it is one year later, and I get lupron every 4 months. Just had an injection yesterday morning, played golf immediately after (lousy score blamed on lupron) and then came home and sat on a heating pad at my computer for an hour or so. Little discomfort last night. Nothing today. It can be OK.

Oh yes, I failed to mention the hot flashes. They are a part of your life. I visit my feminine side about 7-10 times a day/night. My expenditure to have a 0.01 PSA for over a year.
But I look at hot flashes as my down payment on what I call my "Lupron Vacation"---meaning no worry about PSA for two years. When you have a post of 8.0 Gleason, you do what you need to do to avoid recurrence. Ain't so bad. Hope this helps.