Leery of Lupron - Please Help!

2

Comments

  • 2ndBase
    2ndBase Member Posts: 220

    Lupron use
    Hi. My husband is going to be 72 in a few weeks. He was diagnosed with prostate cancer in June 2008. His PSA pre-biposy was 42. A week after, it was 68. Another week later it was 92. He started Lupron and Casodex. After 3 weeks, his psa was 8. He continued the Lupron and Casodex for 10 months with the psa bottoming at .04. Then he took a seven month "rest". His psa went back to 4.96 and he decided to go back on hormone therapy. His oncologist elected NOT to continue Casodex after the first month of this go round. He has had three injections (three months) of treatment so far. His second psa was 2.92. It may or may not go lower. I'm telling you all of this to let you know that he is doing well with the Lupron treatment. Sure, he experiences some hot flashes, some weight redistribution, loss of body hair, brittle nails, thinning skin. He tires somewhat more easily than before the cancer diagnosis. I am certain that it is his understanding of the possibilities of mood swings and irritability that keep these things from happening. He WANTS to be patient and not get angry.....so he thinks before he speaks. (most of the time)
    In short, Lupron is, in my opinion, a viable alternative to doing nothing and suffering the consequences. Radiation has been suggested to my husband, but he has declined so far. I sincerely hope that this eases your mind a bit and helps to calm your qualms. Prostate cancer is not an easy thing to live with, but the good news is, you CAN LIVE with it and have a reasonably happy life. Not a perfect life, but a good life.

    Lupron
    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.
  • Trew
    Trew Member Posts: 932 Member
    2ndBase said:

    Lupron
    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.

    2nd Base, you're on!
    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.
  • erisian
    erisian Member Posts: 107
    Trew said:

    2nd Base, you're on!
    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.

    Study Reults
    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.
  • Trew
    Trew Member Posts: 932 Member
    erisian said:

    Study Reults
    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
    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.
  • sidneytrent
    sidneytrent Member Posts: 5
    2ndBase said:

    Lupron
    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 very happy that your
    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.
  • 2ndBase
    2ndBase Member Posts: 220
    Trew said:

    2nd Base, you're on!
    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.

    Survival Rates
    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.
  • Trew
    Trew Member Posts: 932 Member

    I am very happy that your
    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.

    Snowflakes!
    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.
  • erisian
    erisian Member Posts: 107
    Trew said:

    Snowflakes!
    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.

    Different as snowflakes
    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.
  • Trew
    Trew Member Posts: 932 Member
    erisian said:

    Different as snowflakes
    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!!
    More complications!!

    Humbug!!
  • Medcomglen
    Medcomglen Member Posts: 95
    Have you discussed intermittent therapy?
    Condensed July '07 PSA 14, Gleason 7 3+4 Prostascint scan showed lymphnode involvement and mesentaric artery involvement. Heard the two years get your life in order. Recently I've been below .1 PSA since August '09 after a 2-1/2 year intermittent Hormonal program with Lupron and recently Firmagon (drarelix) injections. My point is I had somewhat of a positive quality of life experience witout all the Lupron side effects. I also believe Firmagon helped in this arena as well for me since injections started March '09. Yesterday my Oncologist said to see him in two months for a psa test since it looks as though i'm now in remission. Of course my testosterone is only 67 but at least the man moobs went down a little and no more hot flases.

    Wishing you good Health
    Glen
  • sidneytrent
    sidneytrent Member Posts: 5
    Trew said:

    Snowflakes!
    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.

    Trew, have you asked your
    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!
  • Trew
    Trew Member Posts: 932 Member
    Crash and Burn
    What a day! I got up this morning and my emotions were bottomed out. I began the day sort of weepy, cried a little. Regained control, my wife got home from her swim class and I lost it again. So I went out walking in the snow/forest for three hours. Cried twice along the way. Regained control. Got back to the house about 10: 30 and ran to the grocery store for a few items, cried on the way there. Got home and cried again. I took a whole Xanax and I began to settle down. I went to a meeting from 12:30- 2: 30, came home, had a nice mid day meal and then fell asleep for 4 hours. Must hve been the Xanax.

    All this I blame on the eligrad. First day I have had like this. I have spotty ups and down, but this was an outright crash and burn type of day.

    Anyone else every had a day like this or am I just losing it? I feel very much under control right now and I am trying to understand this whole day.

    My, I do hate eligard!
  • erisian
    erisian Member Posts: 107
    Trew said:

    Crash and Burn
    What a day! I got up this morning and my emotions were bottomed out. I began the day sort of weepy, cried a little. Regained control, my wife got home from her swim class and I lost it again. So I went out walking in the snow/forest for three hours. Cried twice along the way. Regained control. Got back to the house about 10: 30 and ran to the grocery store for a few items, cried on the way there. Got home and cried again. I took a whole Xanax and I began to settle down. I went to a meeting from 12:30- 2: 30, came home, had a nice mid day meal and then fell asleep for 4 hours. Must hve been the Xanax.

    All this I blame on the eligrad. First day I have had like this. I have spotty ups and down, but this was an outright crash and burn type of day.

    Anyone else every had a day like this or am I just losing it? I feel very much under control right now and I am trying to understand this whole day.

    My, I do hate eligard!

    Nobody told me there'd be days like these...
    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."
  • Trew
    Trew Member Posts: 932 Member
    erisian said:

    Nobody told me there'd be days like these...
    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."

    Days like this
    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!
  • macguy
    macguy Member Posts: 18
    6.89 to.07 one 3 month shot of Lupron
    My first 3 month shot (Nov. 25) dropped my psa with minor pain at the shot site. Hot flashes and some night sweats were a bother but livable. My second shot was March 5 (a four month shot). The same tech was off on her aim this time because that night and the next couple of days it felt like I was hit with a baseball bat. Hopefully the prostate is shrinking to a manageable size.
  • erisian
    erisian Member Posts: 107
    macguy said:

    6.89 to.07 one 3 month shot of Lupron
    My first 3 month shot (Nov. 25) dropped my psa with minor pain at the shot site. Hot flashes and some night sweats were a bother but livable. My second shot was March 5 (a four month shot). The same tech was off on her aim this time because that night and the next couple of days it felt like I was hit with a baseball bat. Hopefully the prostate is shrinking to a manageable size.

    Injection site pain
    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.
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    erisian said:

    Injection site pain
    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.

    Old Post from Old Boys. Are you there?
    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.
  • califvader
    califvader Member Posts: 108
    leary as well
    i too was leary of lupron. i have researched it until i'm blue in the face. i have listened to stories from other p/c patients. some do well, some don't. here's the bottom line mitch. everyone is different. you really don't know how you are going to do until you have to try it. i haven't had an injection yet but it looks like a real possibility in the near future. we are similar in that i am in good health, retired, finanically secure, good wife, etc. my thinking has changed in that if the times comes in will take the injection and just deal with it. good or bad.
  • ob66
    ob66 Member Posts: 227 Member

    leary as well
    i too was leary of lupron. i have researched it until i'm blue in the face. i have listened to stories from other p/c patients. some do well, some don't. here's the bottom line mitch. everyone is different. you really don't know how you are going to do until you have to try it. i haven't had an injection yet but it looks like a real possibility in the near future. we are similar in that i am in good health, retired, finanically secure, good wife, etc. my thinking has changed in that if the times comes in will take the injection and just deal with it. good or bad.

    Leary II
    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.
  • getreal1
    getreal1 Member Posts: 1
    jojo72455 said:

    Lupron side effects
    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.

    Lupron side effects

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