Life after Eligard etc.

FreddyJoe
FreddyJoe Member Posts: 45
edited March 14 in Prostate Cancer #1
I had my supposedly last injection of Eligard a few months ago. My question is how long does it take to get this stuff out of the body and return to normal, or has it damaged the testicles beyond hope and the ED is permanent? Drugs like Viagra are expensive and not covered by most insurance. I guess they figure sex is not a necessity, but a lot of men and women find it desirable.
I think the drug reps may be blowing a little smoke up the Dr's. to get them to write script on the expensive drugs. A good example, I was recently given Lipitor and left the Dr's office with a leaflet and $4 card. The problem is people on social security and medicare do not qualify. The office knows all the info on your insurance and retirement or employment, but I wonder if the Dr pays much attention.

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    The normal level of testosterone gradually improves
    Freddy

    Hormonal side effects by norm end once the testosterone levels in the body return to normal (above 350). Testis, however, will require some sort of rehabilitation with hand massages.
    Libido returns but you may need help from Dr.Viagra.
    At the end of the shots’ effectiveness, our brain starts to produce LHRH communicating with the “factory” to produce testosterone. The normal level gradually improves but it usually takes 2 to 6 months before patients “feel well”.
    You should also consider the side effects from the RT treatment which may have influenced ED due to damage to the blood vessels.

    Wishing you full recovery and many lovely nights.

    VGama
  • FreddyJoe
    FreddyJoe Member Posts: 45

    The normal level of testosterone gradually improves
    Freddy

    Hormonal side effects by norm end once the testosterone levels in the body return to normal (above 350). Testis, however, will require some sort of rehabilitation with hand massages.
    Libido returns but you may need help from Dr.Viagra.
    At the end of the shots’ effectiveness, our brain starts to produce LHRH communicating with the “factory” to produce testosterone. The normal level gradually improves but it usually takes 2 to 6 months before patients “feel well”.
    You should also consider the side effects from the RT treatment which may have influenced ED due to damage to the blood vessels.

    Wishing you full recovery and many lovely nights.

    VGama

    Life after Eligard
    Thanks, that sounds promising, will wait and see how it turns out.
  • Trew
    Trew Member Posts: 931 Member
    Ode to Eligard-
    I was suppose to be on eligard for two years, but after one year I changed doctors and quite the eligard. My expereince was such that it took a good year to get over the many side effects of Eligard. I stopped in April of '10 and I think I am just getting back to some kind of emotional normalacy.

    I hope I never have to face a rising PSA again but if i do I am not sure I would consent to going back on eligard. If I knew then at the time of the first shot what I know now I would pass on the eligard and risk the consequences. It's not fair having to make such decissions when you are told you will, or die. Two years out and looking back- I pass on the eligard.

    History:
    PSA under ten.
    Gleason 5+4=9
    De Vinci surgery in March 09
    Positive margins- bladder neck invasion
    Cancer stage: IV
    Radiation: Nov, 09- Jan, 10.
    Eligard for 1 year- then quit
    Continuing problem with incontinence.
    I am still standing. PTL! (but i do leak)
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Trew said:

    Ode to Eligard-
    I was suppose to be on eligard for two years, but after one year I changed doctors and quite the eligard. My expereince was such that it took a good year to get over the many side effects of Eligard. I stopped in April of '10 and I think I am just getting back to some kind of emotional normalacy.

    I hope I never have to face a rising PSA again but if i do I am not sure I would consent to going back on eligard. If I knew then at the time of the first shot what I know now I would pass on the eligard and risk the consequences. It's not fair having to make such decissions when you are told you will, or die. Two years out and looking back- I pass on the eligard.

    History:
    PSA under ten.
    Gleason 5+4=9
    De Vinci surgery in March 09
    Positive margins- bladder neck invasion
    Cancer stage: IV
    Radiation: Nov, 09- Jan, 10.
    Eligard for 1 year- then quit
    Continuing problem with incontinence.
    I am still standing. PTL! (but i do leak)

    Foods to improved libido and testosterone
    Trew

    I am glad to read about your return to normalcy with regards to the HT side effects. I recall other posts of yours where you have reported nasty side effects.
    Many of us are dependent on reports like yours from guys who have been “on the other side”, and you always describe things very fairly. Surely you will be standing for many, many years to come.

    I am a patient of this synthetic hormone leuprolide acetate (Eligard, Lupron, Viadur, etc) too, now at the end of my six-month shot, and I would say that it has been friendly to me. The noticed side effects I have experienced were all related to the low testosterone in my body. They were many but quite acceptable. I experienced in 2/3 occasions hot-flashes that lasted 3 minutes; 4/5 periods of mood-swings each for about 2 days; one period of 3 days with oedema (swelling legs); 3/4 periods of sleepiness nights waking up at 2pm; and, easily getting tiered after physical exercising for the whole period of the shot (this is annoying). I have two other side effects which I relate to previous treatments, with 2 awaking times per night for peeing; and the ED that never returned to a “full-power performance”.

    These symptoms have been acceptable to me probably because of my life style, diet and age. I am retired (61) with no daily office disciplines; I walk energetically everyday 7 km with my dog, do gardening, paint, play Japanese chess (mind-exercise) and “T-off” on weekends.
    The place I live is helpful for its sunshine (over 300 days /year) and the local diet incorporates mainly fresh fish, vegetables and fruits.
    I have noticed that recently I am eating frequently a variety of local produces in fairly high quantities (in comparison with previous times) which have been linked in studies to improved Testosterone Levels.
    The Algarve region in Portugal is the land of figs, almonds, pinenuts, avocados, asparagus and oysters, and I love all of them.
    I wonder if this diet is behind my acceptance of the side effects. In this site they relate those foods to improved libido and testosterone;
    http://www.libido-increasing-food.com/

    I expect to handle this Eligard affair for ten years on an intermittent modality, and hope that those effects are gone the earliest after the end of shot’s effectiveness.

    Regards
    VGama
  • Trew
    Trew Member Posts: 931 Member

    Foods to improved libido and testosterone
    Trew

    I am glad to read about your return to normalcy with regards to the HT side effects. I recall other posts of yours where you have reported nasty side effects.
    Many of us are dependent on reports like yours from guys who have been “on the other side”, and you always describe things very fairly. Surely you will be standing for many, many years to come.

    I am a patient of this synthetic hormone leuprolide acetate (Eligard, Lupron, Viadur, etc) too, now at the end of my six-month shot, and I would say that it has been friendly to me. The noticed side effects I have experienced were all related to the low testosterone in my body. They were many but quite acceptable. I experienced in 2/3 occasions hot-flashes that lasted 3 minutes; 4/5 periods of mood-swings each for about 2 days; one period of 3 days with oedema (swelling legs); 3/4 periods of sleepiness nights waking up at 2pm; and, easily getting tiered after physical exercising for the whole period of the shot (this is annoying). I have two other side effects which I relate to previous treatments, with 2 awaking times per night for peeing; and the ED that never returned to a “full-power performance”.

    These symptoms have been acceptable to me probably because of my life style, diet and age. I am retired (61) with no daily office disciplines; I walk energetically everyday 7 km with my dog, do gardening, paint, play Japanese chess (mind-exercise) and “T-off” on weekends.
    The place I live is helpful for its sunshine (over 300 days /year) and the local diet incorporates mainly fresh fish, vegetables and fruits.
    I have noticed that recently I am eating frequently a variety of local produces in fairly high quantities (in comparison with previous times) which have been linked in studies to improved Testosterone Levels.
    The Algarve region in Portugal is the land of figs, almonds, pinenuts, avocados, asparagus and oysters, and I love all of them.
    I wonder if this diet is behind my acceptance of the side effects. In this site they relate those foods to improved libido and testosterone;
    http://www.libido-increasing-food.com/

    I expect to handle this Eligard affair for ten years on an intermittent modality, and hope that those effects are gone the earliest after the end of shot’s effectiveness.

    Regards
    VGama

    Within the 1st month i was having hot flashes that would produce visible sweat on my face and body at least once an hour. that continued almost the entire year I was on eligard. You response above just shows how different we are and how one male may have an entirely different reaction to HT than another.

    My testes shrink to less than half their orginial size, too. But I am very sensitve to most drugs. One vicodin will put me out for hours. after they inject the relaxing stuff in the IV in pre-op room, I am usually gone until I wake up in post op.

    I also walk 3- 4 miles pretty regularly and I am very careful with my diet.

    I noticed the diffences in the side effects from radiaiton, too, during treatment. Some of us were very similar, but others had much milder side effects, others more severe. You just step off into the dark and how you get into the light as quickly as possible.
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Trew said:

    Within the 1st month i was having hot flashes that would produce visible sweat on my face and body at least once an hour. that continued almost the entire year I was on eligard. You response above just shows how different we are and how one male may have an entirely different reaction to HT than another.

    My testes shrink to less than half their orginial size, too. But I am very sensitve to most drugs. One vicodin will put me out for hours. after they inject the relaxing stuff in the IV in pre-op room, I am usually gone until I wake up in post op.

    I also walk 3- 4 miles pretty regularly and I am very careful with my diet.

    I noticed the diffences in the side effects from radiaiton, too, during treatment. Some of us were very similar, but others had much milder side effects, others more severe. You just step off into the dark and how you get into the light as quickly as possible.

    We may be similar but not equal
    Trew

    You are right; we may be similar but not equal. Any one reading our posts should take that into account. No case is comparable. I wish that on my second shot I continue symptomless.
    I think that I have been fortunate since the start of my journey eleven years ago, when I read about cases of guys reporting their nasty events.
    Isn’t that ironic that prostate cancer and its treatment can be a killer for some and a chronic affair for others? Is that fair?

    I am hopeful for the day we see that “silver bullet” so that this kind of forum vanishes.

    The best to you.
    VG
  • Trew
    Trew Member Posts: 931 Member

    We may be similar but not equal
    Trew

    You are right; we may be similar but not equal. Any one reading our posts should take that into account. No case is comparable. I wish that on my second shot I continue symptomless.
    I think that I have been fortunate since the start of my journey eleven years ago, when I read about cases of guys reporting their nasty events.
    Isn’t that ironic that prostate cancer and its treatment can be a killer for some and a chronic affair for others? Is that fair?

    I am hopeful for the day we see that “silver bullet” so that this kind of forum vanishes.

    The best to you.
    VG

    Fair?
    I have watched the many varitions PC has taken. How is it some are dry amost from the time the cath is pulled and some of us leak for ever? some can have errections again and others end up experimenting with drugs, pumps and implants?

    And some recover and go on as if nothing ever? happened to them and some are swept away in death? Lots of variations, for sure. One certainly doesn't come here looking for equality. But maybe you can connect with someone with a variation similar to your own.

    Vascoda, I am hoping for that same silver bullet. I certainly hope my sons NEVER go through what I have been through.
  • FreddyJoe
    FreddyJoe Member Posts: 45
    Trew said:

    Fair?
    I have watched the many varitions PC has taken. How is it some are dry amost from the time the cath is pulled and some of us leak for ever? some can have errections again and others end up experimenting with drugs, pumps and implants?

    And some recover and go on as if nothing ever? happened to them and some are swept away in death? Lots of variations, for sure. One certainly doesn't come here looking for equality. But maybe you can connect with someone with a variation similar to your own.

    Vascoda, I am hoping for that same silver bullet. I certainly hope my sons NEVER go through what I have been through.

    Nothing about it is Fair
    There does seem to be a genetic link in families to Prostate cancer. My mothers sister had 4 boys, all 4 had PC, and I do not know of a link but all 4 were also diabetic. I would advise any one with a family member that had it to be checked often.
  • nwgeoff
    nwgeoff Member Posts: 7
    edited December 2017 #10

    Foods to improved libido and testosterone
    Trew

    I am glad to read about your return to normalcy with regards to the HT side effects. I recall other posts of yours where you have reported nasty side effects.
    Many of us are dependent on reports like yours from guys who have been “on the other side”, and you always describe things very fairly. Surely you will be standing for many, many years to come.

    I am a patient of this synthetic hormone leuprolide acetate (Eligard, Lupron, Viadur, etc) too, now at the end of my six-month shot, and I would say that it has been friendly to me. The noticed side effects I have experienced were all related to the low testosterone in my body. They were many but quite acceptable. I experienced in 2/3 occasions hot-flashes that lasted 3 minutes; 4/5 periods of mood-swings each for about 2 days; one period of 3 days with oedema (swelling legs); 3/4 periods of sleepiness nights waking up at 2pm; and, easily getting tiered after physical exercising for the whole period of the shot (this is annoying). I have two other side effects which I relate to previous treatments, with 2 awaking times per night for peeing; and the ED that never returned to a “full-power performance”.

    These symptoms have been acceptable to me probably because of my life style, diet and age. I am retired (61) with no daily office disciplines; I walk energetically everyday 7 km with my dog, do gardening, paint, play Japanese chess (mind-exercise) and “T-off” on weekends.
    The place I live is helpful for its sunshine (over 300 days /year) and the local diet incorporates mainly fresh fish, vegetables and fruits.
    I have noticed that recently I am eating frequently a variety of local produces in fairly high quantities (in comparison with previous times) which have been linked in studies to improved Testosterone Levels.
    The Algarve region in Portugal is the land of figs, almonds, pinenuts, avocados, asparagus and oysters, and I love all of them.
    I wonder if this diet is behind my acceptance of the side effects. In this site they relate those foods to improved libido and testosterone;
    http://www.libido-increasing-food.com/

    I expect to handle this Eligard affair for ten years on an intermittent modality, and hope that those effects are gone the earliest after the end of shot’s effectiveness.

    Regards
    VGama

    good advice

    I was diagnosed in 2011 (gleason 8  blah, blah).  I remember you providing good advice way back then.  I haven't visited this site very often since then.  But I have had a relapse and had cryotherapy.  Waitng to see if it was beneficial.  But the real reason I am replying is to thank you for all the support and advice you have provided over the years.  Good to see you are still around and helping others

  • seattle_bill
    seattle_bill Member Posts: 2 Member
    edited August 2021 #11
    Still Castrate

    mid 70s. diagnosis in Oct 2019.  Gleason 5+4.  Not metastasized.  Began Eligard 3 month dosage for 6 injections.  Had 35 radiation treatments in February and March of 2020.

    Last injection in February of 2021.  (six months ago).  Yesterday, my blood test showed PSA of 0.02 (as it has been.)  So, that's good news as to cancer itself.  Testosterone is 12, still castrate level.  I have a video visit with my oncologist  in a few weeks and we'll discuss

    The really unpleasant side effects that we all know have great reduced.  I thought perhaps that the testosterone would have started to rise.  Reading this site gives me the feeling that it may take quite a bit longer or perhaps not at all.  I am in otherwise excellent shape for my age, walking about five miles a day.  So, I may have to adjust to the facts.  I don't care much for the lingering side effects.  But, I guess it could be way worse.  I'm sure we've all seen the very sad souls in the cancer section of the clinic.

     

     

  • sahallock47
    sahallock47 Member Posts: 1
    Trew said:

    Ode to Eligard-
    I was suppose to be on eligard for two years, but after one year I changed doctors and quite the eligard. My expereince was such that it took a good year to get over the many side effects of Eligard. I stopped in April of '10 and I think I am just getting back to some kind of emotional normalacy.

    I hope I never have to face a rising PSA again but if i do I am not sure I would consent to going back on eligard. If I knew then at the time of the first shot what I know now I would pass on the eligard and risk the consequences. It's not fair having to make such decissions when you are told you will, or die. Two years out and looking back- I pass on the eligard.

    History:
    PSA under ten.
    Gleason 5+4=9
    De Vinci surgery in March 09
    Positive margins- bladder neck invasion
    Cancer stage: IV
    Radiation: Nov, 09- Jan, 10.
    Eligard for 1 year- then quit
    Continuing problem with incontinence.
    I am still standing. PTL! (but i do leak)

    I'm new to the forum so here's my history. I was diagnosed with pc in 9/2015 at age 68,  Gleason 8-9. Had RProstatectomy but PSA was O.2  doubled to 0.4 after 107 days. Had external radiation (40 treatments) finishing in 8/2016 to no avail. PSA reached 2 on 3/2017 and started ADT, 2 3 month shots of Lupron then 2 3 month shots of Eligard. Last shot was 1/2018. PSA was 0 and Testosterone was <10 (Started at 700) . 2 years later, testosterone was  only 80 and PSA was ND during this time. Due to extreme side effects of low T (daily multiple hot flashes, loss of bone density, anemia, mood swings, loss of muscle mass) HRT was attempted, but could never get total T less than 200, even with minimal Testosterone injections (0.1 cc/week). PSA climbed back to 0.4 after a year, so stopped HRT and Testosterone fell back to 80 with PSA at 0.2 and still falling. I feel tired all the time, I'm anemic, and lots of hot flashes. Just can't seem to find a comfort zone, but it's 6 years after diagnosis and I'm still alive. Once I started HRT I was able to achieve erections with injections (I didn't need any help in 2015) and orgasm. After stopping HRT I can still get erections with injections but no orgasms. I'd pretty much say that the cancer and the subsequent treatments have changed my life forever, substantially reduced the quality of life but I'm grateful I'm still here. I get another read on my testosterone and PSA levels this month.

  • Josephg
    Josephg Member Posts: 317 Member

    I'm new to the forum so here's my history. I was diagnosed with pc in 9/2015 at age 68,  Gleason 8-9. Had RProstatectomy but PSA was O.2  doubled to 0.4 after 107 days. Had external radiation (40 treatments) finishing in 8/2016 to no avail. PSA reached 2 on 3/2017 and started ADT, 2 3 month shots of Lupron then 2 3 month shots of Eligard. Last shot was 1/2018. PSA was 0 and Testosterone was <10 (Started at 700) . 2 years later, testosterone was  only 80 and PSA was ND during this time. Due to extreme side effects of low T (daily multiple hot flashes, loss of bone density, anemia, mood swings, loss of muscle mass) HRT was attempted, but could never get total T less than 200, even with minimal Testosterone injections (0.1 cc/week). PSA climbed back to 0.4 after a year, so stopped HRT and Testosterone fell back to 80 with PSA at 0.2 and still falling. I feel tired all the time, I'm anemic, and lots of hot flashes. Just can't seem to find a comfort zone, but it's 6 years after diagnosis and I'm still alive. Once I started HRT I was able to achieve erections with injections (I didn't need any help in 2015) and orgasm. After stopping HRT I can still get erections with injections but no orgasms. I'd pretty much say that the cancer and the subsequent treatments have changed my life forever, substantially reduced the quality of life but I'm grateful I'm still here. I get another read on my testosterone and PSA levels this month.

    Welcome

    Welcome to the group that nobody wants to join.  I recommend that you open a new discussion thread on this Forum with your initial history and comments as you stated above, and then we all can subsequently see and discuss your future updates in your own personal thread.

    I wish you the best of outcomes on your prostaste cancer (PCa) journey.

  • Josephg
    Josephg Member Posts: 317 Member
    edited September 2021 #14

    Still Castrate

    mid 70s. diagnosis in Oct 2019.  Gleason 5+4.  Not metastasized.  Began Eligard 3 month dosage for 6 injections.  Had 35 radiation treatments in February and March of 2020.

    Last injection in February of 2021.  (six months ago).  Yesterday, my blood test showed PSA of 0.02 (as it has been.)  So, that's good news as to cancer itself.  Testosterone is 12, still castrate level.  I have a video visit with my oncologist  in a few weeks and we'll discuss

    The really unpleasant side effects that we all know have great reduced.  I thought perhaps that the testosterone would have started to rise.  Reading this site gives me the feeling that it may take quite a bit longer or perhaps not at all.  I am in otherwise excellent shape for my age, walking about five miles a day.  So, I may have to adjust to the facts.  I don't care much for the lingering side effects.  But, I guess it could be way worse.  I'm sure we've all seen the very sad souls in the cancer section of the clinic.

     

     

    Well Said

    Yes, when I visit my cancer institute for my periodic visits with my Oncologist and to receive my Lupron injections, I also see the many cancer patients with different and much more advanced cases than mine.  It is at those times that I recognize that I am truly fortunate at this time to be fully ambulatory, fully self-sufficient, and not in any constant pain.

    Everything is relative.

  • Georges Calvez
    Georges Calvez Member Posts: 545 Member
    edited September 2021 #15
    Eighteen months

    Hi there,

    According to my reckoning you did eighteen months with your last injection being six months ago.
    The last injection would last a minimum of three months plus a bit of hang over.
    I would say that you have a better than evens chance of recovering some testosterone, however you should bear in mind that your age is against you.
    I think a more reasonable time period to expect some testosterone to appear would be nine to twelve months after your last injection.
    This would allow three months for the dose period of the Eligard to decline followed by a grace period of three months plus six months for your hypothalamic–pituitary–gonadal axis to kick back into life.

    Best wishes,

    Georges

  • seattle_bill
    seattle_bill Member Posts: 2 Member

    Thanks for encouragement. My latest numbers last month showed PSA still < 0.02 and finally testosterone has jumped from 12 to 168. My oncologist will check again in August but said that he thinks I might break 300 yet. OK, radiation proctitis has set in after 2 years, but it is fairly mild. I don't fall asleep at 4:30 in the afternoon. So, I am fairly happy considering. I still would generally advise others to consider the impact of Eligard Shots 5 and 6 were pretty tough.


    It is one thing I've learned in the past five years. Physicians tell you how good the expected results of procedures are, but don't give a realistic view of side effects.

    Bill