Lupron Injections

ob66
ob66 Member Posts: 227 Member
edited March 2014 in Prostate Cancer #1
Have been on Casodex for a week. Next week I will be having a Lupron injection (my first), prior to going to Europe for three weeks. I have heard that the side effects are not to be taken lightly---brutal it sounds like (hot flashes, irritability, sleeplessness). Can anyone who has done so enlighten me on this? Thank you.
«134

Comments

  • 2ndBase
    2ndBase Member Posts: 220
    Lupron
    I took a lupron shot to shrink my prostate before radiation. The cancer had already spread. If I had it to do over I would have not taken the shot as I still refuse to take more. I'm doing fine and though my psa is over 100 and I was given two years to live at age 52 in 2004, I am glad I no longer even consider such a treatment. Do what you want and deal with it as you must. Lupron is certainly not a cure and does nothing to improve your lifespan. I know.
  • ld34
    ld34 Member Posts: 24
    2ndBase said:

    Lupron
    I took a lupron shot to shrink my prostate before radiation. The cancer had already spread. If I had it to do over I would have not taken the shot as I still refuse to take more. I'm doing fine and though my psa is over 100 and I was given two years to live at age 52 in 2004, I am glad I no longer even consider such a treatment. Do what you want and deal with it as you must. Lupron is certainly not a cure and does nothing to improve your lifespan. I know.

    lupron
    I read your comments every time you post...I am doing every thing I can to put off casodex and lupron as long as I can ..I think your points may be right on... but, as they say, we shall see...Thanks for your comments
  • Mitch128
    Mitch128 Member Posts: 20
    Lupron Injections
    LUPRON scares the hell out of me. From this forum and others, some possible side effects are: Fatigue, flu-like symptoms, altered lipid levels, hot flashes, numbness in extremities, mood swings, joint pain, bone loss, anxiety, blurry vision, memory loss, increased risk of cardiovascular disease, decrease in hemoglobin, male breast enlargement, elevated blood pressure, and weight gain/weight re-distribution, loss of body hair, brittle nails and thinning skin.

    This stuff is POISON - make any chemical castration (that's just what it is) decision carefully.
  • Trew
    Trew Member Posts: 931 Member
    Mitch128 said:

    Lupron Injections
    LUPRON scares the hell out of me. From this forum and others, some possible side effects are: Fatigue, flu-like symptoms, altered lipid levels, hot flashes, numbness in extremities, mood swings, joint pain, bone loss, anxiety, blurry vision, memory loss, increased risk of cardiovascular disease, decrease in hemoglobin, male breast enlargement, elevated blood pressure, and weight gain/weight re-distribution, loss of body hair, brittle nails and thinning skin.

    This stuff is POISON - make any chemical castration (that's just what it is) decision carefully.

    Almost the Same Thing: Eligard!!
    Ob, I am on Eligard that sounds like "On-your-gard!!! (Only different, of course, but it means the same thing!)

    Mitch, I have all those symptoms you list above, maybe a few more on Eligard but its the same basic stuff as Lupron.

    I have discussed quitting the shot with my wife a number of times, and with a few friends, and the oncologist at Loma Linda where I got proton and radiation treatments. The doctor told me I am the patitent and I don't have to take anything I'm not comfortable with or don't want- its my call as a patient. What would he recommend? I wanted to know. He favored the two year treatment plan I am on because it has a statisical advantage over less or no hormone treatment he told me. He was a very sharp doctor.

    From a nursing textbook I learned that the hormone treatment, by stopping testostrone, actually interrupts cancer cell development, when the hormone drug is working as it should. Combined with radiation, hormone treatment might be the deciding factor to turn the growth of cancer cells in your favor.

    And 2nd Base, Personally, if I had a PSA of 100 or higher, I would be scared to death every day. Something is going on with a PSA that high and oncology docs see this stuff and they push what they see as giving their patients an edge over cancer.

    In Feb- just back from LLU and treatment I watched a man die of prostate cancer. It is a nasty ending. I have hated every moment on my hormone shot- almost decided in fovor of quiting after 1 year, but then decided to trust the judgment of some good medical people and fight this thing. OK, I am depressed and moody and all those other things- but there is still life and hopefully I will grow past those symptoms after the second year of shots is completed.

    Mitch, Poison? Sure- it comes concocked up from some chemo lab- gives you a suggestion of the seriousness of what you are dealing with. There is a time when the stuff works, and then there is a time when it won't work. You want to do everything you can to avoid that second time. Again, as I have said before, PC is a nasty end to life if it goes that far.
  • erisian
    erisian Member Posts: 107
    Trew said:

    Almost the Same Thing: Eligard!!
    Ob, I am on Eligard that sounds like "On-your-gard!!! (Only different, of course, but it means the same thing!)

    Mitch, I have all those symptoms you list above, maybe a few more on Eligard but its the same basic stuff as Lupron.

    I have discussed quitting the shot with my wife a number of times, and with a few friends, and the oncologist at Loma Linda where I got proton and radiation treatments. The doctor told me I am the patitent and I don't have to take anything I'm not comfortable with or don't want- its my call as a patient. What would he recommend? I wanted to know. He favored the two year treatment plan I am on because it has a statisical advantage over less or no hormone treatment he told me. He was a very sharp doctor.

    From a nursing textbook I learned that the hormone treatment, by stopping testostrone, actually interrupts cancer cell development, when the hormone drug is working as it should. Combined with radiation, hormone treatment might be the deciding factor to turn the growth of cancer cells in your favor.

    And 2nd Base, Personally, if I had a PSA of 100 or higher, I would be scared to death every day. Something is going on with a PSA that high and oncology docs see this stuff and they push what they see as giving their patients an edge over cancer.

    In Feb- just back from LLU and treatment I watched a man die of prostate cancer. It is a nasty ending. I have hated every moment on my hormone shot- almost decided in fovor of quiting after 1 year, but then decided to trust the judgment of some good medical people and fight this thing. OK, I am depressed and moody and all those other things- but there is still life and hopefully I will grow past those symptoms after the second year of shots is completed.

    Mitch, Poison? Sure- it comes concocked up from some chemo lab- gives you a suggestion of the seriousness of what you are dealing with. There is a time when the stuff works, and then there is a time when it won't work. You want to do everything you can to avoid that second time. Again, as I have said before, PC is a nasty end to life if it goes that far.

    Lupron
    Most of the worst "side effects" are the direct effects of a low testosterone level, which is the intended effect of the Lupron, aka "medical castration". Intermittent treatment is being used to reduce side effects. I've been on it continuously since 2007. I don't like the side effects, but my oncologist wants me to stay on it for what seems to me to be a good reason, so I stay on it.
  • Kongo
    Kongo Member Posts: 1,166 Member
    erisian said:

    Lupron
    Most of the worst "side effects" are the direct effects of a low testosterone level, which is the intended effect of the Lupron, aka "medical castration". Intermittent treatment is being used to reduce side effects. I've been on it continuously since 2007. I don't like the side effects, but my oncologist wants me to stay on it for what seems to me to be a good reason, so I stay on it.

    Question
    Erisian, since the mean doubling time for cancer cells in 475 days, I am curious as to why your doctor would have you on it for so long? What is the advantage of remaining on hormone blockage past the time when the cancer cells are likely to die and commit "suicide" in the absence of the testosterone limit?
  • gator880
    gator880 Member Posts: 21
    Lupron
    Understand your quandry about hormone shots. My husband had RP, radiation, followed by hormone shots for a year. Changed drs. due to relocation, and hormone shots stopped for 1 yr. During that time, cancer spread to his lungs. (Yes prostate origin)
    The side effects of Lupron, Eligard, and Casodex (which was ineffective) are bears, but lung tumors are growing slowly. If he'd stayed on hormone regimen, would the cancer have metastisized there, and at that time? Cann't know, but we certainly wonder. To us, the side effects are a lesser evil than metastasis. Food for thought...
  • Medcomglen
    Medcomglen Member Posts: 95
    Lupron Injections
    After being on casodex and Lupron for one year I started a different type of Hormone therapy called Firmagon (degarelix)with incredible results and about half of the terrible side effects compared to Lupron. There are some downsides but I'll take an injection of Firmagon any day over Lupron. google Firmagon and do your research before you decide. You can also view my experience on these boards. Search under Firmagon.

    Best wishes,
    Glen
  • nymets1
    nymets1 Member Posts: 26
    Trew said:

    Almost the Same Thing: Eligard!!
    Ob, I am on Eligard that sounds like "On-your-gard!!! (Only different, of course, but it means the same thing!)

    Mitch, I have all those symptoms you list above, maybe a few more on Eligard but its the same basic stuff as Lupron.

    I have discussed quitting the shot with my wife a number of times, and with a few friends, and the oncologist at Loma Linda where I got proton and radiation treatments. The doctor told me I am the patitent and I don't have to take anything I'm not comfortable with or don't want- its my call as a patient. What would he recommend? I wanted to know. He favored the two year treatment plan I am on because it has a statisical advantage over less or no hormone treatment he told me. He was a very sharp doctor.

    From a nursing textbook I learned that the hormone treatment, by stopping testostrone, actually interrupts cancer cell development, when the hormone drug is working as it should. Combined with radiation, hormone treatment might be the deciding factor to turn the growth of cancer cells in your favor.

    And 2nd Base, Personally, if I had a PSA of 100 or higher, I would be scared to death every day. Something is going on with a PSA that high and oncology docs see this stuff and they push what they see as giving their patients an edge over cancer.

    In Feb- just back from LLU and treatment I watched a man die of prostate cancer. It is a nasty ending. I have hated every moment on my hormone shot- almost decided in fovor of quiting after 1 year, but then decided to trust the judgment of some good medical people and fight this thing. OK, I am depressed and moody and all those other things- but there is still life and hopefully I will grow past those symptoms after the second year of shots is completed.

    Mitch, Poison? Sure- it comes concocked up from some chemo lab- gives you a suggestion of the seriousness of what you are dealing with. There is a time when the stuff works, and then there is a time when it won't work. You want to do everything you can to avoid that second time. Again, as I have said before, PC is a nasty end to life if it goes that far.

    Trew,
    2ndBase is excercising

    Trew,

    2ndBase is excercising his right to live a higher quality of life. He had already tried Lupron and decided that the side-effects weren't worth it. The fact that his journey started in 2004 and he is still alive today actually puts some credence in the theory that hormonal ablation does NOT extend life; instead it keeps the hormonal resistant cancer at bay until the hormonal independant cancer grows and takes over; an inevitable event, either way.

    Ok, I do not totally subscribe to that theory. I do think that hormonal ablation does extend life, however, in most cases, not significantly. Most of us, myself included, will do what we can under reasonable circumstances to live even a year longer.

    As to effects----there is growing thought that the old gold standard, estrogen, may actually be BETTER than the newer drugs that depress testosterone production. Estrogen has LESS side effects (fewer hot flashes, no bone loss (actually it strenghtens bone), much less depression, no memory loss). It does impair libido and has a greater propensity for breast enlargement,something that can be alleviated with radiation, prior to starting the treatment).
    Its MAIN adverse impact is cardio-vascular, something that can and has been alleviated with smaller (but still effective) doses, the concurrent dosing of blood thinners and close monitoring. I believe that the interest in bringing back estrogen is gaining and I would expect some trials to begin in the future. BTW: estrogen is a very CHEAP treatment and even if its considered experimenmtal by insurers, most folks can easily pay for it, out of pocket. What has been seen more often than not is that estrogen treatment DOES extend life as long as it doesn't kill you other ways (again, it has been shown to be safe using smaller doses, etc; however it would never be recommended for someone who has heart disease). Most oncologists use estrogen as a second line, after hormonal ablation has failed. However, it may actually be a better choice for first line treatment (after primary treatments have failed).
  • Trew
    Trew Member Posts: 931 Member
    nymets1 said:

    Trew,
    2ndBase is excercising

    Trew,

    2ndBase is excercising his right to live a higher quality of life. He had already tried Lupron and decided that the side-effects weren't worth it. The fact that his journey started in 2004 and he is still alive today actually puts some credence in the theory that hormonal ablation does NOT extend life; instead it keeps the hormonal resistant cancer at bay until the hormonal independant cancer grows and takes over; an inevitable event, either way.

    Ok, I do not totally subscribe to that theory. I do think that hormonal ablation does extend life, however, in most cases, not significantly. Most of us, myself included, will do what we can under reasonable circumstances to live even a year longer.

    As to effects----there is growing thought that the old gold standard, estrogen, may actually be BETTER than the newer drugs that depress testosterone production. Estrogen has LESS side effects (fewer hot flashes, no bone loss (actually it strenghtens bone), much less depression, no memory loss). It does impair libido and has a greater propensity for breast enlargement,something that can be alleviated with radiation, prior to starting the treatment).
    Its MAIN adverse impact is cardio-vascular, something that can and has been alleviated with smaller (but still effective) doses, the concurrent dosing of blood thinners and close monitoring. I believe that the interest in bringing back estrogen is gaining and I would expect some trials to begin in the future. BTW: estrogen is a very CHEAP treatment and even if its considered experimenmtal by insurers, most folks can easily pay for it, out of pocket. What has been seen more often than not is that estrogen treatment DOES extend life as long as it doesn't kill you other ways (again, it has been shown to be safe using smaller doses, etc; however it would never be recommended for someone who has heart disease). Most oncologists use estrogen as a second line, after hormonal ablation has failed. However, it may actually be a better choice for first line treatment (after primary treatments have failed).

    Quality is Good
    I know that. And it's ok with me what 2ndBase does. I understand the quality issues well enough after 1 yr on Eligard. This PC is nasty stuff with hard choices for men. I'm getting a hot flash as I type this.


    As far as first line treatments- isn't that what this post began discussing? for someone new in this PC stuff, I sure don't want him thinking a PSA of 100 is something one can live with. I have a lot of sympathy for 2nd Base and hope he makes it all the way around to home. But his model hardly seems like a model for others to follow- not in the early stages of PC, anyway.

    I just had my first bone density test last week, and after one year on Eligard my bone density is just on the low side of normal. there are issues with hormone therapy.
  • cabiggs
    cabiggs Member Posts: 2
    Trew said:

    Almost the Same Thing: Eligard!!
    Ob, I am on Eligard that sounds like "On-your-gard!!! (Only different, of course, but it means the same thing!)

    Mitch, I have all those symptoms you list above, maybe a few more on Eligard but its the same basic stuff as Lupron.

    I have discussed quitting the shot with my wife a number of times, and with a few friends, and the oncologist at Loma Linda where I got proton and radiation treatments. The doctor told me I am the patitent and I don't have to take anything I'm not comfortable with or don't want- its my call as a patient. What would he recommend? I wanted to know. He favored the two year treatment plan I am on because it has a statisical advantage over less or no hormone treatment he told me. He was a very sharp doctor.

    From a nursing textbook I learned that the hormone treatment, by stopping testostrone, actually interrupts cancer cell development, when the hormone drug is working as it should. Combined with radiation, hormone treatment might be the deciding factor to turn the growth of cancer cells in your favor.

    And 2nd Base, Personally, if I had a PSA of 100 or higher, I would be scared to death every day. Something is going on with a PSA that high and oncology docs see this stuff and they push what they see as giving their patients an edge over cancer.

    In Feb- just back from LLU and treatment I watched a man die of prostate cancer. It is a nasty ending. I have hated every moment on my hormone shot- almost decided in fovor of quiting after 1 year, but then decided to trust the judgment of some good medical people and fight this thing. OK, I am depressed and moody and all those other things- but there is still life and hopefully I will grow past those symptoms after the second year of shots is completed.

    Mitch, Poison? Sure- it comes concocked up from some chemo lab- gives you a suggestion of the seriousness of what you are dealing with. There is a time when the stuff works, and then there is a time when it won't work. You want to do everything you can to avoid that second time. Again, as I have said before, PC is a nasty end to life if it goes that far.

    Firmagon
    I decided to take firmagon over lupron. It is a newer drug that has fewer side effects. However the first shots caused a lot of mussel pain for about 3 days. I am one of those that had a PSA level of 230. I went on a natural protocol developed by Sir Arnold Takemoto, who is a friend of mine. My PSA has dropped down to 22 in one month. Sir Arnold has an incredible track record with stage 4 cancer patients of all kinds. And to my knowledge he has never lost a patient that stayed on his protocols in the last 25 years. He is in Scottsdale Arizona, 480 922-9235. He was Knighted in England for his Cancer work.
  • erisian
    erisian Member Posts: 107
    Kongo said:

    Question
    Erisian, since the mean doubling time for cancer cells in 475 days, I am curious as to why your doctor would have you on it for so long? What is the advantage of remaining on hormone blockage past the time when the cancer cells are likely to die and commit "suicide" in the absence of the testosterone limit?

    Why continue
    I have metastatic HRPC. My oncologist says that even though the HRPC doesn't require testosterone, it still responds to it. So allowing a normal testosterone level to return would be "like pouring gasoline on a fire." With my current PSA over 100, that is not something that I'm interested in testing.

    The point about selective breeding is right on, but that's what ALL the treatments for advanced PCa do. None are 100% effective, so they kill what they can, but the resistant cells survive. Then you try another treatment, and see what that does. Repeat as needed...
  • erisian
    erisian Member Posts: 107
    cabiggs said:

    Firmagon
    I decided to take firmagon over lupron. It is a newer drug that has fewer side effects. However the first shots caused a lot of mussel pain for about 3 days. I am one of those that had a PSA level of 230. I went on a natural protocol developed by Sir Arnold Takemoto, who is a friend of mine. My PSA has dropped down to 22 in one month. Sir Arnold has an incredible track record with stage 4 cancer patients of all kinds. And to my knowledge he has never lost a patient that stayed on his protocols in the last 25 years. He is in Scottsdale Arizona, 480 922-9235. He was Knighted in England for his Cancer work.

    Muscle pain
    You will have MUCH less pain if the muscle that it is injected into is completely relaxed during the injection. I got the 'Lupron Limp' a couple of times before someone clued me in on relaxing, and it has worked every time since then.
  • Trew
    Trew Member Posts: 931 Member
    When Lupron is failing?
    I was wondering if there is any way to tell if the Lupron or Eligard is failing? If the PSA is going up, does that mean your testostrone level is also increasing and does that mean you might have an erection while on The Shot? Just wondering if that can happen. Hope you can understand my question- I did not want to begin a whole new htread on this topic.
  • Trew
    Trew Member Posts: 931 Member
    erisian said:

    Muscle pain
    You will have MUCH less pain if the muscle that it is injected into is completely relaxed during the injection. I got the 'Lupron Limp' a couple of times before someone clued me in on relaxing, and it has worked every time since then.

    Eligard is injected into the
    Eligard is injected into the stomach muscles. Burns like fire. I get my next shot in 3 weeks- I'll try the relaxing technique and see how it goes. One guy told me rubbing some ice on over the skin for a few minutes before the injection also helps ease the burn. I only get my shot every 6 months- 2 down, two to go. I hope.

    "They" can't keep me on this stuff forever. I hope.
  • erisian
    erisian Member Posts: 107
    Trew said:

    When Lupron is failing?
    I was wondering if there is any way to tell if the Lupron or Eligard is failing? If the PSA is going up, does that mean your testostrone level is also increasing and does that mean you might have an erection while on The Shot? Just wondering if that can happen. Hope you can understand my question- I did not want to begin a whole new htread on this topic.

    Failure
    Failure would indeed be an increase in the testosterone level. That would be detected by a blood test for testosterone. It _is_ possible to have an erection while on the shot, or at least something close. Of course, if you believe the data from the Phase 3 trial that got Lupron approved, loss of libido and ED occur in only about 5% of patients. It makes me wonder what else they screwed up.
  • Trew
    Trew Member Posts: 931 Member
    erisian said:

    Failure
    Failure would indeed be an increase in the testosterone level. That would be detected by a blood test for testosterone. It _is_ possible to have an erection while on the shot, or at least something close. Of course, if you believe the data from the Phase 3 trial that got Lupron approved, loss of libido and ED occur in only about 5% of patients. It makes me wonder what else they screwed up.

    Only 5% of Pateints on... !!!
    Wow! what a claim. Only 5% of patients on Lupron have problems with libido!!

    Well, I'll call that my LOL of the day.
  • wayne2
    wayne2 Member Posts: 31

    Lupron Injections
    After being on casodex and Lupron for one year I started a different type of Hormone therapy called Firmagon (degarelix)with incredible results and about half of the terrible side effects compared to Lupron. There are some downsides but I'll take an injection of Firmagon any day over Lupron. google Firmagon and do your research before you decide. You can also view my experience on these boards. Search under Firmagon.

    Best wishes,
    Glen

    FIRMAGON
    Hi Glen.....I enjoy your posts. I started on Firmagon and get my second injection tomorrow. I had external beam radiation in 2006. My psa went from 4.6 down to the 0.5 level for 9 months or so and then started back up and the last reading was 3.8 in April. I have high hopes(and prayers) for success. I like the ecouraging words in your messages....thanks.

    wayne(Les)
  • Dr_Jeff
    Dr_Jeff Member Posts: 10
    Lupron
    Hey ob66
    4 years ago, at age 46, I had PSA of 23 and opted for robotic surgery and radiation followed by 2 years of hormone therapy which consisted of Lupron, Casadex, and Finestride. It was my idea to add the Finestride which my oncologist agreed to. I did have daily hot flashes which improved with the addition of Effexor, an antidepressant given to menopausal women. Yes, there was some minimal muscle pain at the injection site for a couple of days which was no big deal. My libido was killed for those two years, but fortunately my wife preferred having a husband who was alive. I had some minor memory problems and some "mental dulling", but it was nothing that was noticed by others. I took some extra calcium and exercised to combat bone loss. I am happy to say that today my PSA continues to be undetectable. My libido is back and so are erections, even without pills. I would tell anyone to stick it out and endure side effects. Choose life!!
  • ob66
    ob66 Member Posts: 227 Member
    Dr_Jeff said:

    Lupron
    Hey ob66
    4 years ago, at age 46, I had PSA of 23 and opted for robotic surgery and radiation followed by 2 years of hormone therapy which consisted of Lupron, Casadex, and Finestride. It was my idea to add the Finestride which my oncologist agreed to. I did have daily hot flashes which improved with the addition of Effexor, an antidepressant given to menopausal women. Yes, there was some minimal muscle pain at the injection site for a couple of days which was no big deal. My libido was killed for those two years, but fortunately my wife preferred having a husband who was alive. I had some minor memory problems and some "mental dulling", but it was nothing that was noticed by others. I took some extra calcium and exercised to combat bone loss. I am happy to say that today my PSA continues to be undetectable. My libido is back and so are erections, even without pills. I would tell anyone to stick it out and endure side effects. Choose life!!

    Lupron
    Thanks Dr. Jeff.....Had the injection, climbed on a plane for a 3 week vacation and nothing. I mean nothing. Some mild hot flashes a couple of weeks after the injection, but not that often, and not that bad. Have been taking extra calcium as well. All is well in this dept. Now just to get healing complete with the AUS and I will be a happy camper.