Hormone Therapy with ELIGARD

RADIATION HOPEFUL
RADIATION HOPEFUL Member Posts: 218
edited March 2014 in Prostate Cancer #1
ANYONE

HAS anyone had experience taking ELIGARD.
I'm currently taking Firmagon with no serious side affects but the urologist wants to change to Eligard to stop total production of Testesterone. According to a blog I read on this site, this is chemical castration which may result in permanent loss of testesterone production. I only had two shots of Firmagon & didn't get the PSA results of the second shot yet. The first shot lowered the PSA over 70%.
I'm also starting radiation treatments & know I will encounter side affects from that thus I don't need something that may cause even more severe side affects.

"Any advice is appreciated"

I'm scared of what I read about the side affects.
«1

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Hi RadHope,
    I have answer to

    Hi RadHope,
    I have answer to your last post about Eligard in another thread.
    Here is a site explaining in detail the aspects of hormonal therapy. Look for ;
    What is flare? And
    The concept of neoadjuvant hormone blockade (your case)
    http://www.prostate-cancer.org/education/andeprv/hormone.html#pg9

    Take care,
    VGama
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    Hi RadHope,
    I have answer to

    Hi RadHope,
    I have answer to your last post about Eligard in another thread.
    Here is a site explaining in detail the aspects of hormonal therapy. Look for ;
    What is flare? And
    The concept of neoadjuvant hormone blockade (your case)
    http://www.prostate-cancer.org/education/andeprv/hormone.html#pg9

    Take care,
    VGama

    Eligard vs. Firmagon
    Just received a call from urologist---he has no problem keeping me on Firmagon through my radiation treatments. I'm grateful to hear that & he claims there is no issue with flare up using Eligard since I started with Firmagon But bottom line is he will keep me on Firmagon & will change whenever I wish.

    Thanks VGama for your posts --appreciate your replies.

    Rad Hopeful
  • Trew
    Trew Member Posts: 931 Member

    Eligard vs. Firmagon
    Just received a call from urologist---he has no problem keeping me on Firmagon through my radiation treatments. I'm grateful to hear that & he claims there is no issue with flare up using Eligard since I started with Firmagon But bottom line is he will keep me on Firmagon & will change whenever I wish.

    Thanks VGama for your posts --appreciate your replies.

    Rad Hopeful

    Eligard
    I was on eligard for one year- I ws suppose to be on it for 2 yrs- I was getting the 6-month shot. After one yr i changed doctors and quit the Eligard. I had every sympton listed for all dosages. And my testicles are now like little sponges and about 1/3 their former size. Eligard is tuff stuff.

    Great to hear you don't have to go on it just yet.
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Trew said:

    Eligard
    I was on eligard for one year- I ws suppose to be on it for 2 yrs- I was getting the 6-month shot. After one yr i changed doctors and quit the Eligard. I had every sympton listed for all dosages. And my testicles are now like little sponges and about 1/3 their former size. Eligard is tuff stuff.

    Great to hear you don't have to go on it just yet.

    RadHope
    I'm glad to know that you stay on Firmagon. This is a relief from your concerns now that you will embark on RT. Be confident and soon all will be part of the past.
    Please keep us informed of your progress.
    VGama
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member

    RadHope
    I'm glad to know that you stay on Firmagon. This is a relief from your concerns now that you will embark on RT. Be confident and soon all will be part of the past.
    Please keep us informed of your progress.
    VGama

    Trew; Could you please share some information
    Hi Trew
    I got my first Eligard 6M shot last November. So far I have no apparent side effects from the drug, except of fatigue and alterations in mood, I think from the low testosterone in my body. This is a new experience to me and I believe that I may get some sort of side effects in the future.
    Could you please share some information on your experiences with Eligard?
    Did you take it together with an antiandrogen in your hormonal protocol?
    What is your new drug? How about any side effect from it?
    Have you taken a PSA and Testosterone test?

    Thanks in advance.
    VGama
  • FreddyJoe
    FreddyJoe Member Posts: 45

    Trew; Could you please share some information
    Hi Trew
    I got my first Eligard 6M shot last November. So far I have no apparent side effects from the drug, except of fatigue and alterations in mood, I think from the low testosterone in my body. This is a new experience to me and I believe that I may get some sort of side effects in the future.
    Could you please share some information on your experiences with Eligard?
    Did you take it together with an antiandrogen in your hormonal protocol?
    What is your new drug? How about any side effect from it?
    Have you taken a PSA and Testosterone test?

    Thanks in advance.
    VGama

    Eligard
    I have been on Eligard for over a year and am due back in next month for my final, I hope, 6 month shot of the stuff. I was on a different one in the beginning and had hot flashes. I do not have the hot flashes with this, but the fatigue and other side effects are not good. It is keeping my PSA at about zero, it was up to 20 before the radiation. The thing that bothers me the most is the doctors did not really explain this to me. I had the radiation and started the hormone therapy in another state and have seen a bunch of doctors. At first I thought the fatigue was just because of my age, now I know different.
  • Trew
    Trew Member Posts: 931 Member

    Trew; Could you please share some information
    Hi Trew
    I got my first Eligard 6M shot last November. So far I have no apparent side effects from the drug, except of fatigue and alterations in mood, I think from the low testosterone in my body. This is a new experience to me and I believe that I may get some sort of side effects in the future.
    Could you please share some information on your experiences with Eligard?
    Did you take it together with an antiandrogen in your hormonal protocol?
    What is your new drug? How about any side effect from it?
    Have you taken a PSA and Testosterone test?

    Thanks in advance.
    VGama

    I would suggest you do an
    I would suggest you do an internet search on Eligard side effects and see the list. some of the side effects vary from length/dose of the med- but i found them to be consistant all the way through the dosages. My testicles have definitely shrunk and gotten softer, some breast tissue has developed, the mood swings were terrible, and I confess to being overcome with some pretty dark thoughts while on the stuff. There were times I would be completely overcome with a sense of sadness and just start crying. the mood swings have greatly improved since I quit the Eligard but it took a good 9 months to get out from under that stuff. The last 6-month shot period ended in April 10 and it wasn't until the middleof Nov I really started to feel better and its bee about a month since my last hot flashes.

    Eligard is powerful stuff. I did not appreciate the way the shot was given to me and the doctor's office I was at then gets an "F" in patient care on that issue. Considering the seriousness of the shot and its side effects ny doctor'soffice that doens't take few minutes and go over those side effects should be sued for malpractice. I say that because the mood swings can be so severe, at least for me, I can see how one could become suicidial on the stuff. A patient should be warned about the mood swings at least.
  • dgnort
    dgnort Member Posts: 1
    Eligard
    My husband, Steve, was on Eligard from the day he received his PCa dx in MAY 2007 and LATER taken off after about 18 months. He experiences ED while on the Eligard but we were able to use a VED for sex. The thing was that he had no libido during that time. He experienced hot flashes and other hormone type symptoms. He started External Beam Radiation about 6 weeks after his dx. When he received his dx his gleason was 8 and all 15 sections of the prostate that were biopsied were positive. His case was taken before a group of urologists and oncologists to determine the best treatment. He had trouble urinating after starting the radiation but they put in a catheter and after two weeks that was removed and he could urinate with no problems. Those 18 months that he was on the Eligard were very difficult for both of us.

    He will be 59 in March and in May it will 4 years since his dx. He has no side effects from the Eligard. His libido returned slowly after stopping the Eligard in Dec 09 and with the help of a Bonro VED as needed has regained a great sex life. I hope this encourages you because the treatment worked well and he health today. He has his PSa checked every three months and sees his urologist at Cancer Treatment Centers of America every 6 months. All in all we are very thankful that he is alive and doing so well. I thank God every day.
    Feel free to contact me.
    Diane N.
    Wife of PCa survivor
  • mrspjd
    mrspjd Member Posts: 694 Member
    dgnort said:

    Eligard
    My husband, Steve, was on Eligard from the day he received his PCa dx in MAY 2007 and LATER taken off after about 18 months. He experiences ED while on the Eligard but we were able to use a VED for sex. The thing was that he had no libido during that time. He experienced hot flashes and other hormone type symptoms. He started External Beam Radiation about 6 weeks after his dx. When he received his dx his gleason was 8 and all 15 sections of the prostate that were biopsied were positive. His case was taken before a group of urologists and oncologists to determine the best treatment. He had trouble urinating after starting the radiation but they put in a catheter and after two weeks that was removed and he could urinate with no problems. Those 18 months that he was on the Eligard were very difficult for both of us.

    He will be 59 in March and in May it will 4 years since his dx. He has no side effects from the Eligard. His libido returned slowly after stopping the Eligard in Dec 09 and with the help of a Bonro VED as needed has regained a great sex life. I hope this encourages you because the treatment worked well and he health today. He has his PSa checked every three months and sees his urologist at Cancer Treatment Centers of America every 6 months. All in all we are very thankful that he is alive and doing so well. I thank God every day.
    Feel free to contact me.
    Diane N.
    Wife of PCa survivor

    dgnort
    Diane,
    From one PCa wife to another, welcome to the PCa discussion forum. Glad your husband is doing well, and thank you for taking the time to share his experience of successful treatment with radiation and ADT, aka, hormones or LHRH type drugs, such as Eligard, Lupron, etc. My husband, PJD, was dx Feb 2010 & had 9 of 12 cores positive, many at 100% involved, G3+4=7, locally advanced, non-met T3 PCa. He chose a similar, but slightly different, tx plan of RT (HDR-B & IMRT) combined with ADT3, using Lupron, Casodex and Avodart. He is almost at one year on the drugs (well tolerated) and is considering going off the LHRH drug (or taking a hormone “vacation”) at this time, as his PSA, T, & DHT numbers have begun to stabilize at very good & acceptable low levels!!

    Wondering if you might comment on how you & your docs arrived at the 18 month time frame to go off the drug(s) and what, if any, add’l factors (if other than the side effects indicated in your post) you considered in making that decision at 18 mos, as opposed to one year or two years, etc? Also, has he previously used, or does he currently use either Proscar (Finisteride) or Avodart?

    Thanks again and appreciate any feedback. Wishing you both continued success.

    mrs pjd (Also see myself as the wife of a PCa survivor.)
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    dgnort said:

    Eligard
    My husband, Steve, was on Eligard from the day he received his PCa dx in MAY 2007 and LATER taken off after about 18 months. He experiences ED while on the Eligard but we were able to use a VED for sex. The thing was that he had no libido during that time. He experienced hot flashes and other hormone type symptoms. He started External Beam Radiation about 6 weeks after his dx. When he received his dx his gleason was 8 and all 15 sections of the prostate that were biopsied were positive. His case was taken before a group of urologists and oncologists to determine the best treatment. He had trouble urinating after starting the radiation but they put in a catheter and after two weeks that was removed and he could urinate with no problems. Those 18 months that he was on the Eligard were very difficult for both of us.

    He will be 59 in March and in May it will 4 years since his dx. He has no side effects from the Eligard. His libido returned slowly after stopping the Eligard in Dec 09 and with the help of a Bonro VED as needed has regained a great sex life. I hope this encourages you because the treatment worked well and he health today. He has his PSa checked every three months and sees his urologist at Cancer Treatment Centers of America every 6 months. All in all we are very thankful that he is alive and doing so well. I thank God every day.
    Feel free to contact me.
    Diane N.
    Wife of PCa survivor

    Insights on Eligard
    Thanks Freddy, Trew and Diane for your insights on Eligard. I am glad to know that you are all well after such hideous experiences under that hormonal treatment. I am appalled that your doctors did not inform you of consequences and did not help with medication prescriptions. I wish you continuous success.
    This cancer affects the whole family, and I applause our wives for their dedication in our care.

    I just started ADT (Eligard 6M) and am hopeful that it works positively on an intermittent modality I intent to follow for ten years.
    Though I think that most symptoms we can expect are due to the low testosterone in our body, I would change from Eligard to another LHRH agonist if I saw it difficult for me to sustain any side effect, particularly blurred vision and headache (pituitary apo-plexy symptoms), significant changes in my vital signs like; temperature, heart rate, blood pressure or respiratory rate (heart attack symptoms) and testicular atrophy (Trew’s nasty experience).
    The most noticeable side effect I have experienced so far was fatigue in the initial three weeks (now gone) with the anti-agonist Cyproterone. I could not enjoy my daily long walks and resolve my fitness program. Mood swings came over Christmas and it mixed with the sentimental festivities (now gone too). I had one mild hot flash when sleeping.

    A worrisome with Eligard is its half-life, which as Diane indicates, seems to be closer to 10 months. Lupron (LHRH agonist) has a half-life sorter of 5 months which maybe more appropriate for an intermittent approach therapy.
    My doctor discussed with me details of the hormonal therapy long before I started it and that information helps me to be positive on the matter. I believe that fitness is also important to absorb most of the symptoms similar to menopause. Some symptoms can be countered with separate medication and we can prevent side effects from happening (such as bone loss) with the proper “tools”.

    I wish some guys feed in more information on the use of Eligard.
    Thanks in advance.
    VGama
  • FreddyJoe
    FreddyJoe Member Posts: 45
    Trew said:

    I would suggest you do an
    I would suggest you do an internet search on Eligard side effects and see the list. some of the side effects vary from length/dose of the med- but i found them to be consistant all the way through the dosages. My testicles have definitely shrunk and gotten softer, some breast tissue has developed, the mood swings were terrible, and I confess to being overcome with some pretty dark thoughts while on the stuff. There were times I would be completely overcome with a sense of sadness and just start crying. the mood swings have greatly improved since I quit the Eligard but it took a good 9 months to get out from under that stuff. The last 6-month shot period ended in April 10 and it wasn't until the middleof Nov I really started to feel better and its bee about a month since my last hot flashes.

    Eligard is powerful stuff. I did not appreciate the way the shot was given to me and the doctor's office I was at then gets an "F" in patient care on that issue. Considering the seriousness of the shot and its side effects ny doctor'soffice that doens't take few minutes and go over those side effects should be sued for malpractice. I say that because the mood swings can be so severe, at least for me, I can see how one could become suicidial on the stuff. A patient should be warned about the mood swings at least.

    Eligard
    I will have to second the motion that anyone should do a search on the side effects. The Eligard site and a couple of other reilable ones list a bunch of them. I also give the medical prosession an F for telling me about the side effects. I am also a bit angry at the entire bunch of them. I was told very little and really given no options, and at the time I just wanted to get rid of the cancer so I never questioned them. Had I known what I do now when I started treatment, I am not sure what I would have done.
  • Trew
    Trew Member Posts: 931 Member
    FreddyJoe said:

    Eligard
    I will have to second the motion that anyone should do a search on the side effects. The Eligard site and a couple of other reilable ones list a bunch of them. I also give the medical prosession an F for telling me about the side effects. I am also a bit angry at the entire bunch of them. I was told very little and really given no options, and at the time I just wanted to get rid of the cancer so I never questioned them. Had I known what I do now when I started treatment, I am not sure what I would have done.

    Exactly how I now think. IF
    Exactly how I now think. IF I had tht moment to do over I would have liked to explore the option until there was an actual increase in PSA first. I am not sure if I will ever recover from the the eligard. the little spot in the brain where the control switch is that triggers the release of testostrone has been turned off and my new uro says there is a high possibilty that may never be turned on again.

    so why do I still have to shave? Inquiring minds what to know!! I ______, and _____ , and I still have to shave- now where I ask you is the justice in that?
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Trew said:

    Exactly how I now think. IF
    Exactly how I now think. IF I had tht moment to do over I would have liked to explore the option until there was an actual increase in PSA first. I am not sure if I will ever recover from the the eligard. the little spot in the brain where the control switch is that triggers the release of testostrone has been turned off and my new uro says there is a high possibilty that may never be turned on again.

    so why do I still have to shave? Inquiring minds what to know!! I ______, and _____ , and I still have to shave- now where I ask you is the justice in that?

    TREW, You may be experiencing Hypogonadism
    Hi Trew,
    I am sorry to hear about your low esteem. I am socked to know that your urologist told you that you may not recover. In my opinion you should consult a specialized Endocrinologist. They are the right doctors to treat your symptoms.
    I read reports from guys having similar experiences and they say that they took medicines like Testim and Androgel to increase the testosterone in their bodies with positive results in just few weeks. They comment that they had their energy back and started dropping weight and gaining some muscle. They say that the medication improved their brain function and mental acuity, and that they returned to normal daily life.

    You may be experiencing Hypogonadism (testosterone deficiency) which may be a result from the influence of Eligard at the hypothalamus and pituitary gland, inhibiting hormone secretion and testosterone production at the testicles. Check your lipids and measure testosterone levels and if properly diagnosed (when serum testosterone is low and luteinizing hormone is high), you can start Testosterone Replacement therapy. Discuss with your doctor to decide which medication to use, an intramuscular injection, a patch or gel placed on the skin, etc.
    Do not give up. Visit an Endocrinologist the soonest and discuss about Hypogonadism.

    Take care.
    VGama
  • Trew
    Trew Member Posts: 931 Member

    TREW, You may be experiencing Hypogonadism
    Hi Trew,
    I am sorry to hear about your low esteem. I am socked to know that your urologist told you that you may not recover. In my opinion you should consult a specialized Endocrinologist. They are the right doctors to treat your symptoms.
    I read reports from guys having similar experiences and they say that they took medicines like Testim and Androgel to increase the testosterone in their bodies with positive results in just few weeks. They comment that they had their energy back and started dropping weight and gaining some muscle. They say that the medication improved their brain function and mental acuity, and that they returned to normal daily life.

    You may be experiencing Hypogonadism (testosterone deficiency) which may be a result from the influence of Eligard at the hypothalamus and pituitary gland, inhibiting hormone secretion and testosterone production at the testicles. Check your lipids and measure testosterone levels and if properly diagnosed (when serum testosterone is low and luteinizing hormone is high), you can start Testosterone Replacement therapy. Discuss with your doctor to decide which medication to use, an intramuscular injection, a patch or gel placed on the skin, etc.
    Do not give up. Visit an Endocrinologist the soonest and discuss about Hypogonadism.

    Take care.
    VGama

    Good idea- thanks for the
    Good idea- thanks for the suggestion.
  • FreddyJoe
    FreddyJoe Member Posts: 45

    TREW, You may be experiencing Hypogonadism
    Hi Trew,
    I am sorry to hear about your low esteem. I am socked to know that your urologist told you that you may not recover. In my opinion you should consult a specialized Endocrinologist. They are the right doctors to treat your symptoms.
    I read reports from guys having similar experiences and they say that they took medicines like Testim and Androgel to increase the testosterone in their bodies with positive results in just few weeks. They comment that they had their energy back and started dropping weight and gaining some muscle. They say that the medication improved their brain function and mental acuity, and that they returned to normal daily life.

    You may be experiencing Hypogonadism (testosterone deficiency) which may be a result from the influence of Eligard at the hypothalamus and pituitary gland, inhibiting hormone secretion and testosterone production at the testicles. Check your lipids and measure testosterone levels and if properly diagnosed (when serum testosterone is low and luteinizing hormone is high), you can start Testosterone Replacement therapy. Discuss with your doctor to decide which medication to use, an intramuscular injection, a patch or gel placed on the skin, etc.
    Do not give up. Visit an Endocrinologist the soonest and discuss about Hypogonadism.

    Take care.
    VGama

    Hypogonadism
    The Hypogonadisim idea is a good one, I will look into that.

    In my experience the side effects that some of us have take time to develop. The first few months of my treatment I did not seem to notice them, they built up over time with continued use of the drugs. I had the injections for a while before the radiation. During the radiation I just left work a little early and got the treatment, and at the time it was no big deal. Now about 1 1/2 year later they have built up. I was working on my feet all day and had little or none of the problems at first. The fatigue and other issues were not there in the beginning. Now I wake up in the morning with what I call a tooth ache in my testicles, or what is left of them. I have little energy. I was walking up and down a couple flights of stairs several times a day and was fine, now a few steps tire me out. I would like to make it a requirement for any Doctor that injects this stuff to have to undergo a couple of years of it before he is allowed to do so.
  • Brian R.
    Brian R. Member Posts: 8
    Eligard
    Hi, I am 71 now, and was diagnosed with prostate cancer in September 2010 with a PSA of 13. My biopsies gleason score were 3+3 = 6, all the rest were 3+4 = 7, except one whic was 4+3 = 7, which was the one they urologist was most concerned about. Who sent me to a Proffesor Shakespeare at Coffs Harbour oncology. He did a DRE and said quite a few bumps and lumps + my prostate was very enlarged. Sent me for CT and MRI scans to make sure the cancer had not got into the bones, which it hadn't and looked as though I had advanced but localised prostate cancer. He then put me on eligard 2.5, which is a 3 monthly injection, and then end of the first 3 months they inserted (the same way as they took the biopsies) 3 gold markers into the prostate (which by then had shrunk) so i could have IMRT (Intensity Modulated Radiation Therapy) and a month later January 2011 I started 45 radiation sessions of 1.8 gray, all up given 81 gray. My main problem during that time was urinating, especialy at night after going to bed, would take up to 10 minutes and lots irritation and of walking around up right to get some form of dribble to weak stream going, 3 to 4 times a night. They tried a few drugs and patches to ease that, but I got no easing of the problem until they put me on FLOMAXTRA which I still take.
    It is now 29 April 2012, and I have been on eligard 2.5 every 3 months since the first one September 2010 and as far as I can work out have 3 or 4 more injections to go, I believe I have to be on them for 2 years from the finish of my radiation treatment 31 March 2011.
    My PSA dropped to 2.5 after first 3 months of eligard, and down to <0.02 June 2011 3 months after finishing ratiation treatment, and since then it has been < 0.01 since then and testosterone is < 0.05 both as low as they can go.
    Side effects from the eligard:-
    1. Some weight gain, mainly breasts, stomach, pubic area and top of legs. It ranges between 3 to 4 kilo, though I think the eligard plays around with fluid levels.
    2. Plenty of hot flushes (but I do not worry about them)
    3. Still finding it hard to urinate at night, have to walk around a bit to get muscles to relax, day time I am ok.
    4. I am still running 3 times a week, though it takes a bit of perserverance as no testosterone (male can do hormone)
    Other than those 4 side effects I am lucky as I seem to be going well.
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Brian R. said:

    Eligard
    Hi, I am 71 now, and was diagnosed with prostate cancer in September 2010 with a PSA of 13. My biopsies gleason score were 3+3 = 6, all the rest were 3+4 = 7, except one whic was 4+3 = 7, which was the one they urologist was most concerned about. Who sent me to a Proffesor Shakespeare at Coffs Harbour oncology. He did a DRE and said quite a few bumps and lumps + my prostate was very enlarged. Sent me for CT and MRI scans to make sure the cancer had not got into the bones, which it hadn't and looked as though I had advanced but localised prostate cancer. He then put me on eligard 2.5, which is a 3 monthly injection, and then end of the first 3 months they inserted (the same way as they took the biopsies) 3 gold markers into the prostate (which by then had shrunk) so i could have IMRT (Intensity Modulated Radiation Therapy) and a month later January 2011 I started 45 radiation sessions of 1.8 gray, all up given 81 gray. My main problem during that time was urinating, especialy at night after going to bed, would take up to 10 minutes and lots irritation and of walking around up right to get some form of dribble to weak stream going, 3 to 4 times a night. They tried a few drugs and patches to ease that, but I got no easing of the problem until they put me on FLOMAXTRA which I still take.
    It is now 29 April 2012, and I have been on eligard 2.5 every 3 months since the first one September 2010 and as far as I can work out have 3 or 4 more injections to go, I believe I have to be on them for 2 years from the finish of my radiation treatment 31 March 2011.
    My PSA dropped to 2.5 after first 3 months of eligard, and down to <0.02 June 2011 3 months after finishing ratiation treatment, and since then it has been < 0.01 since then and testosterone is < 0.05 both as low as they can go.
    Side effects from the eligard:-
    1. Some weight gain, mainly breasts, stomach, pubic area and top of legs. It ranges between 3 to 4 kilo, though I think the eligard plays around with fluid levels.
    2. Plenty of hot flushes (but I do not worry about them)
    3. Still finding it hard to urinate at night, have to walk around a bit to get muscles to relax, day time I am ok.
    4. I am still running 3 times a week, though it takes a bit of perserverance as no testosterone (male can do hormone)
    Other than those 4 side effects I am lucky as I seem to be going well.</p>

    Brian; Congratulations on the Zeros
    Brian

    Thanks for sharing your story.
    The treatment seems to be correct and I hope that the PSA stays in the Zeros forever.
    I do not think that HT is causing the problem you describe in urinating. HT traditionally causes frequency at night but not impediment. I would attribute that symptom to radiation side effects which you can verify with a cystoscopy for checking the interior lining of the bladder and the urethra.

    Another test I would recommend you is a bone densitometry to check for osteoporosis. HT causes bone loss and you may need to start taking a bisphosphonate.
    Lipids also should be checked because of the long period on castrate levels. Heart health and diabetes is a risk when on continuous HT for long periods of time.

    Wishing you continuous eventless treatment.

    Welcome to the board.
    VGama
  • Brian R.
    Brian R. Member Posts: 8
    Eligard
    Thank you VGama for your comments, I realize that the radiation does effect the bladder etc. making it hard to urinate, but one of the side effects listed in the paperwork that comes with the injection is "Tell your doctor if you are having difficulty in passing urine", so I think there may be an element of that in the night time problem, as I have very little trouble during the day. I usually only have to get up once a night (but I have trouble urinating and can only get a stream going by walking around the house for 5 or 6 minutes), odd times I have to get up twice, and some times I go nearly all night. One thing that happened recently was that two nights before my last injection was due I urinated OK at night, but they have been a coincidence.
    One thing the doctor told me is it will take muscle off if you are not careful, as normally you only need an activity level of 10% or 15% to maintain your muscle mass, but when on eligard you need a 35% to 40% activity level to maintain your muscle mass, that is why I stay as active as possible for a 71 years young pensioner, which is why I keep up my jogging 3 times a week, and if I cannot jog due to weather or some thing, I jump on the exercise bike and do 20 to 30 minutes on the next to highest level, plus surf on a boogie board when conditions are right. As I do all this activity I think my bones must still be reasonable ok.
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Brian R. said:

    Eligard
    Thank you VGama for your comments, I realize that the radiation does effect the bladder etc. making it hard to urinate, but one of the side effects listed in the paperwork that comes with the injection is "Tell your doctor if you are having difficulty in passing urine", so I think there may be an element of that in the night time problem, as I have very little trouble during the day. I usually only have to get up once a night (but I have trouble urinating and can only get a stream going by walking around the house for 5 or 6 minutes), odd times I have to get up twice, and some times I go nearly all night. One thing that happened recently was that two nights before my last injection was due I urinated OK at night, but they have been a coincidence.
    One thing the doctor told me is it will take muscle off if you are not careful, as normally you only need an activity level of 10% or 15% to maintain your muscle mass, but when on eligard you need a 35% to 40% activity level to maintain your muscle mass, that is why I stay as active as possible for a 71 years young pensioner, which is why I keep up my jogging 3 times a week, and if I cannot jog due to weather or some thing, I jump on the exercise bike and do 20 to 30 minutes on the next to highest level, plus surf on a boogie board when conditions are right. As I do all this activity I think my bones must still be reasonable ok.

    "Care Program" when on HT
    Brian

    We always learn something in this forum by exchanging opinions. Thanks for sharing yours.

    I am on Eligard (3 times 6-month shots) and I have experienced numerous side effects but mild. Passing urine at night (2 or 3 times) has been common and so it is fatigue.
    I have never taken medicines to counter the side effects. Fitness has helped me and I try to be active as much as I can. I do walk about 8 Km daily (sometimes on beach sand) and play golf on week-ends. Other daily physical routines are gardening and small home repairs as they come. This has countered muscle mass loss to a certain extent. My balls have shrunken and libido diminished.
    I am careful and vigilant about any other effect from the treatment. Younger than you at 62 and retired and have planned a kind of Care Program with several tests, which I recommend you to consider for you. Annually I get the lipids including PAP, checked and do a bone densitometry scan and cardiac tests (ECG and echocardiogram). I got osteopenia at -1.4, so that I am taking on-off periods of Alendronic acid bisphosphonate. I also take a daily aspirin and the 3-monthly PSA & Testosterone.
    Every two years I am taking a MRI and Bone scintigraphy scan (since diagnosis in 2000).

    HT started (after RP + RT failure) with a PSA-1.0 (Nov 2011) and now it is at remission levels of 0.02 (T=,0.1 ng/ml). I just started a vacation Off-Drug Eligard which will last until the PSA gets higher at the 2.5 ng/ml mark. This is the protocol decided by my doctor in my case. If the vacation cycle period is short then I will start the On-drugs cycle with daily Cyproterone and 6-month Eligard shot (ADT2).
    I hope that MDV3100 becomes cheap enough at the time so that I may exchange it with the Cyproterone. The Portuguese national social health program does not subsidize 100% of novel expensive drugs.

    Regards.
    VGama
  • Brian R.
    Brian R. Member Posts: 8

    "Care Program" when on HT
    Brian

    We always learn something in this forum by exchanging opinions. Thanks for sharing yours.

    I am on Eligard (3 times 6-month shots) and I have experienced numerous side effects but mild. Passing urine at night (2 or 3 times) has been common and so it is fatigue.
    I have never taken medicines to counter the side effects. Fitness has helped me and I try to be active as much as I can. I do walk about 8 Km daily (sometimes on beach sand) and play golf on week-ends. Other daily physical routines are gardening and small home repairs as they come. This has countered muscle mass loss to a certain extent. My balls have shrunken and libido diminished.
    I am careful and vigilant about any other effect from the treatment. Younger than you at 62 and retired and have planned a kind of Care Program with several tests, which I recommend you to consider for you. Annually I get the lipids including PAP, checked and do a bone densitometry scan and cardiac tests (ECG and echocardiogram). I got osteopenia at -1.4, so that I am taking on-off periods of Alendronic acid bisphosphonate. I also take a daily aspirin and the 3-monthly PSA & Testosterone.
    Every two years I am taking a MRI and Bone scintigraphy scan (since diagnosis in 2000).

    HT started (after RP + RT failure) with a PSA-1.0 (Nov 2011) and now it is at remission levels of 0.02 (T=,0.1 ng/ml). I just started a vacation Off-Drug Eligard which will last until the PSA gets higher at the 2.5 ng/ml mark. This is the protocol decided by my doctor in my case. If the vacation cycle period is short then I will start the On-drugs cycle with daily Cyproterone and 6-month Eligard shot (ADT2).
    I hope that MDV3100 becomes cheap enough at the time so that I may exchange it with the Cyproterone. The Portuguese national social health program does not subsidize 100% of novel expensive drugs.

    Regards.
    VGama

    Bone density loss on Eligard
    Vasco
    A little bit of information on helping to prevent bone density loss when on HT treatment, and why the running I do seems to help me more than walking.
    There has just been a science show on the TV here in Australia, and if your internet speed is at least 512 go to the following web site and follow my instructions.
    www.abc.net.au/news
    Run the cursor over the TV button at top of screen and select iview.
    The iview program will quickly down load and display a number of programs that you can watch, look for "catalyst" series 13 episode 11,you may have to search around a bit, as the screen changes from day to day,but the program is usually available for a week or two.

    From the program it seems that impact exercises are best for keeping your bone density.

    Regards
    Brian