Firmagon (Degarelix) substitute for Lupron

1910111214

Comments

  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    RadHope; Your decreased PSA is part of your success
    RadHope
    I am very glad to read your improving news. Your decreased PSA is already part of your success. Please continue posting, you are not offending anyone. Could you inform us how you are accessing the RT clinic? Is it close to your place or have you temporarily moved to stay closer?
    I wish you the best on your “T” day. Do not forget of drinking enough water one hour in advance.
    VGama

    PSA decrease
    Again Thanks for the reply

    Although I tried to go to Fox Chase in Philadelphia & couldn't because it's out of my Insurance network, I feel content with going to a local hospital --aprox. 40 min. drive one way.
    I have a H2o bottle I will fill with water & drink 1 hour prior to having the rad treatment.
    We had another snow storm yesterday & last evening,I'm going to plow some snow before I have to leave for the hospital.
    I'm pleased with the high percentage drop (over 92%)with only two shots. Anxious to see what the third shot is going to do. With the combination of Hormone drug & radiation it should lower it much more. I'll keep you posted regarding results as I move forward.I'm also VERY HAPPY with the bladder showing clean although I didn't care for the cystoscope.


    Cordially

    Rad Hopeful
  • AKFrank
    AKFrank Member Posts: 9
    wardyboy said:

    I seem to be responding well
    I seem to be responding well to the degerelix/casodex combo.I pray that it goes from .10 to zero.Im doing as much as possible with diet/supplements and now that my stent is out,exercise.I stay very busy around my property but i am not working(Fireman). My doctors dont think that I will be running into burning buildings with 100lbs of equipment on my back anymore. I miss it terribly! I truely love being a fireman. Im pretty sure that all the crap that I was exposed to at ground zero on 9/11 has something to do with my aggressive/extensive cancer.Sorry for getting off topic(damm hormones).Glen I did get down to Sanibel back in October.Weather and water and fishing was great.Just what the doctor ordered!!!.........I wish you all a joyous and healthier Holiday. I know what you guys want for Christmas and pray it comes true!!! Wardy

    ipiliumamab
    As was suggested to me, I started a new discussion board under ipilumamab. If anyone is interested in how it's working out for me, visit that site.
    Frank
  • AKFrank
    AKFrank Member Posts: 9
    wardyboy said:

    I seem to be responding well
    I seem to be responding well to the degerelix/casodex combo.I pray that it goes from .10 to zero.Im doing as much as possible with diet/supplements and now that my stent is out,exercise.I stay very busy around my property but i am not working(Fireman). My doctors dont think that I will be running into burning buildings with 100lbs of equipment on my back anymore. I miss it terribly! I truely love being a fireman. Im pretty sure that all the crap that I was exposed to at ground zero on 9/11 has something to do with my aggressive/extensive cancer.Sorry for getting off topic(damm hormones).Glen I did get down to Sanibel back in October.Weather and water and fishing was great.Just what the doctor ordered!!!.........I wish you all a joyous and healthier Holiday. I know what you guys want for Christmas and pray it comes true!!! Wardy

    ipiliumamab
    As was suggested to me, I started a new discussion board under ipilumamab. If anyone is interested in how it's working out for me, visit that site.
    Frank
  • mrspjd
    mrspjd Member Posts: 694 Member
    AKFrank said:

    ipiliumamab
    As was suggested to me, I started a new discussion board under ipilumamab. If anyone is interested in how it's working out for me, visit that site.
    Frank

    Hi again, Frank
    Hi Frank,
    This Firmagon thread is getting a bit unwieldy and it’s difficult to find some new posts. I’ve been trying to locate the recent post you referred to today with the latest update on your experience in the “Ipiliumamab” or is it “Ipilimumab” clinical trial, however I’m unable to find it. I had previously suggested you start a new thread about your experience with the Ipilimumab trial, but perhaps you might have misunderstood or be unfamiliar with the “how to’s” of this CSN forum (something we all have been through at one time or another).

    A “new thread” refers to starting a new discussion topic on the PCa discussion board. Since you are no longer using Firmagon and instead in a Ipilimumab trial, that would seem to make sense so that others interested could more easily find the info you would share about that clinical trial experience. In order to create or start a new discussion subject/topic, go to the main PCa discussion page http://csn.cancer.org/forum/126 and click on the heading “Post new discussion topic” located on the top left just above the list of all the PCa discussion topics. You might want to call your discussion topic something like “Ipilimumab clinical trial.” Perhaps under that new “thread” or “discussion” that you create, you might include a PCa history & summary of your txs, including info about the study you are currently enrolled in. Hope that helps. I look forward to reading your updates.

    Wishing you all the best.
  • Kongo
    Kongo Member Posts: 1,166 Member

    PSA decrease
    Again Thanks for the reply

    Although I tried to go to Fox Chase in Philadelphia & couldn't because it's out of my Insurance network, I feel content with going to a local hospital --aprox. 40 min. drive one way.
    I have a H2o bottle I will fill with water & drink 1 hour prior to having the rad treatment.
    We had another snow storm yesterday & last evening,I'm going to plow some snow before I have to leave for the hospital.
    I'm pleased with the high percentage drop (over 92%)with only two shots. Anxious to see what the third shot is going to do. With the combination of Hormone drug & radiation it should lower it much more. I'll keep you posted regarding results as I move forward.I'm also VERY HAPPY with the bladder showing clean although I didn't care for the cystoscope.


    Cordially

    Rad Hopeful

    Good News
    Hopeful, I am glad to hear all the positive news and hope your progress continues to go smoothly. It is interesting to read the history of your posts here to see the impact on your state of mind and confidence as you have asked great questions, sought out answers, educated yourself, and moved on to the next steps. Soon enough you will have all this in the rear view mirror. I hope you continue to post after your treatments because I think you will be a great source of knowledge and inspiration for those coming along a similar path.

    Best to you.

    K

    P.s. Maybe you would consider starting a new thread...the enormity of this one is becoming increasingly difficult to follow.
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218
    Kongo said:

    Good News
    Hopeful, I am glad to hear all the positive news and hope your progress continues to go smoothly. It is interesting to read the history of your posts here to see the impact on your state of mind and confidence as you have asked great questions, sought out answers, educated yourself, and moved on to the next steps. Soon enough you will have all this in the rear view mirror. I hope you continue to post after your treatments because I think you will be a great source of knowledge and inspiration for those coming along a similar path.

    Best to you.

    K

    P.s. Maybe you would consider starting a new thread...the enormity of this one is becoming increasingly difficult to follow.

    Radiation Treatments
    Thank You Kongo for the post.
    I must leave in a few minutes for my treatment (morning schedule)it's a 40 min. drive.
    Regarding starting a new thread --do you mean posting on the discussion board instead of here on the post?
    I will keep all informed of my progress providing there is interest.
    Blessings to all having to follow this journey & make personsl treatment decisions.

    Radiation Hopeful
  • Kongo
    Kongo Member Posts: 1,166 Member

    Radiation Treatments
    Thank You Kongo for the post.
    I must leave in a few minutes for my treatment (morning schedule)it's a 40 min. drive.
    Regarding starting a new thread --do you mean posting on the discussion board instead of here on the post?
    I will keep all informed of my progress providing there is interest.
    Blessings to all having to follow this journey & make personsl treatment decisions.

    Radiation Hopeful

    New thread
    I think you should start a new topic thread from the main PCa board. Best to you in your treatments.

    K
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218
    Kongo said:

    Good News
    Hopeful, I am glad to hear all the positive news and hope your progress continues to go smoothly. It is interesting to read the history of your posts here to see the impact on your state of mind and confidence as you have asked great questions, sought out answers, educated yourself, and moved on to the next steps. Soon enough you will have all this in the rear view mirror. I hope you continue to post after your treatments because I think you will be a great source of knowledge and inspiration for those coming along a similar path.

    Best to you.

    K

    P.s. Maybe you would consider starting a new thread...the enormity of this one is becoming increasingly difficult to follow.

    Radiation With HORMONE THERAPY -FIRMAGON
    Hello KONGO ,VGama & All interested in this venture

    I took your advice & posted my update on the discussion board with the same title as the subject noted, I also included my home E-Mail address in case you wanted to correspond & ask questions I didn't address.
    Bless everyone having to follow this journey to rid ourselves of this monster.

    Rad Hopeful
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Radiation With HORMONE THERAPY -FIRMAGON
    Hello KONGO ,VGama & All interested in this venture

    I took your advice & posted my update on the discussion board with the same title as the subject noted, I also included my home E-Mail address in case you wanted to correspond & ask questions I didn't address.
    Bless everyone having to follow this journey to rid ourselves of this monster.

    Rad Hopeful

    Wardy; Do not be scared of threatening opinions
    Wardy,

    I do not know your history with the cancer, but you should not be scared about your oncologist comment. Prostate cancer is not a direct “kill” of a moment. Event in advanced cases were patients do not respond anymore to drugs, the time to death is measured in decades and the majority die with the cancer not of the cancer.
    You say that your hormonal treatment is “working like a charm” and so it will for many years. The only difference is that RT is done aiming at cure whether HT is done to keep the “bad-guy at bay”.

    There is no dough that you should came up with a decision on what you want to do and on what you trust, and then pass those wishes to your care givers. They will understand and return you their advice (not threaten opinions).
    If you decide to go on with HT, there are many examples of fellows who have chosen HT as prime treatment and that have done well over ten years and more. If you want to give it a try on “cure”, radiation therapy has more chances of success if done before metastasis occur.

    Our comrades in this forum will give you advice on your case but you should post a chronology of your case. Here is a site of one fellow that have been on IADT3 for the last eleven years. He moved into HT just by chance when waiting for RT treatment (similar to your case). Have a look at it;
    http://www.healthboards.com/boards/showthread.php?t=723434
    http://www.healthboards.com/boards/showthread.php?t=767909
    http://www.healthboards.com/boards/showthread.php?t=827823


    I wish you successful conclusions.
    VGama.
  • wayne2
    wayne2 Member Posts: 31

    Latest PSA results
    January 10, 2011; 1.3
    November 16, 2010; 0.7

    Last Firmagon injection,80mg: September 2010

    Latest PSA results
    Hi Glen........I'm always encouraged by your reports !!!!:-)) I'm 77 years old and feel I still have much to do in life . FAmily, church, fishing, and wife of 36 years. My last psa check in Jan 2011 is still showing a 0.10 reading. I am so grateful for my treatment ........ a real blessing . I had 43 IMRT treatments in 2006. My psa went down to 0.60 and then started climbing back up....so my Oncologist started me on the firmagon in April of last year. If my psa is low one more time then I'll get it check every six months.In the meantime I stay busy outside of my head if you know what I mean.

    best wishes.........

    wayne
  • wayne2
    wayne2 Member Posts: 31

    Latest PSA results
    January 10, 2011; 1.3
    November 16, 2010; 0.7

    Last Firmagon injection,80mg: September 2010

    MORE BLESSINGS
    Hi Glen :Another psa check last month..........still at 0.1. Another injection today..............more pain, but that's ok........It's a blessing. We've had ice and snow so I got out my oil paints again......painting a picture of our home.Fishing soon tho:-))

    How you doin , Glen ?? I couldn't find your Feb 01,2011 post?? I hope all is well................you have that beautiful daughter to stick around for............

    wayne
  • jogger
    jogger Member Posts: 47

    Wardy; Do not be scared of threatening opinions
    Wardy,

    I do not know your history with the cancer, but you should not be scared about your oncologist comment. Prostate cancer is not a direct “kill” of a moment. Event in advanced cases were patients do not respond anymore to drugs, the time to death is measured in decades and the majority die with the cancer not of the cancer.
    You say that your hormonal treatment is “working like a charm” and so it will for many years. The only difference is that RT is done aiming at cure whether HT is done to keep the “bad-guy at bay”.

    There is no dough that you should came up with a decision on what you want to do and on what you trust, and then pass those wishes to your care givers. They will understand and return you their advice (not threaten opinions).
    If you decide to go on with HT, there are many examples of fellows who have chosen HT as prime treatment and that have done well over ten years and more. If you want to give it a try on “cure”, radiation therapy has more chances of success if done before metastasis occur.

    Our comrades in this forum will give you advice on your case but you should post a chronology of your case. Here is a site of one fellow that have been on IADT3 for the last eleven years. He moved into HT just by chance when waiting for RT treatment (similar to your case). Have a look at it;
    http://www.healthboards.com/boards/showthread.php?t=723434
    http://www.healthboards.com/boards/showthread.php?t=767909
    http://www.healthboards.com/boards/showthread.php?t=827823


    I wish you successful conclusions.
    VGama.

    vastly improved PSA
    After a dozen shots my PSA has gone from 800 to 0.6. I used to get a flu-like reaction to my shots, but no longer. Still pain at the injection site for 2-3 days. One problem is an expanding waistline and a contracting penis. I exercise religiously an hour a day, but because of a bad back I have to do modified exercises and hardly break a sweat so that I can't bring my weight down. My jogging days are over. Still getting up 2-3 times a night. I leak just a couple of drops of urine during the day, just enough to have to change my undies every day. I wonder if that's 'normal' for age 79. I keep forgetting to mention it to the doctor. Doctor is not ready to give me intermittent shots. I think it's a pocketbook matter with him. Incidentally, I'm a survivor of testicular cancer. I had one testicle removed, followed by chemo and radiation. To treat the prostate cancer I've only used the Degarelix.
  • Katman
    Katman Member Posts: 6
    jogger said:

    vastly improved PSA
    After a dozen shots my PSA has gone from 800 to 0.6. I used to get a flu-like reaction to my shots, but no longer. Still pain at the injection site for 2-3 days. One problem is an expanding waistline and a contracting penis. I exercise religiously an hour a day, but because of a bad back I have to do modified exercises and hardly break a sweat so that I can't bring my weight down. My jogging days are over. Still getting up 2-3 times a night. I leak just a couple of drops of urine during the day, just enough to have to change my undies every day. I wonder if that's 'normal' for age 79. I keep forgetting to mention it to the doctor. Doctor is not ready to give me intermittent shots. I think it's a pocketbook matter with him. Incidentally, I'm a survivor of testicular cancer. I had one testicle removed, followed by chemo and radiation. To treat the prostate cancer I've only used the Degarelix.

    Switched from Degarelix to Lupron
    After seed implants in 2006 at age 76, PSA went from 9.5 to 0.0. PSA started to increase after about 6 months and rose to 9.0 in May 2010. Started Degarelix in May and PSA went down to 0.0 in December 2010. Switched to Lupron at that time and first PSA test of Mar 25 was still 0.0. Hopefully, continued use of Lupron will keep PSA at 0.
  • brasildoug
    brasildoug Member Posts: 2
    Katman said:

    Switched from Degarelix to Lupron
    After seed implants in 2006 at age 76, PSA went from 9.5 to 0.0. PSA started to increase after about 6 months and rose to 9.0 in May 2010. Started Degarelix in May and PSA went down to 0.0 in December 2010. Switched to Lupron at that time and first PSA test of Mar 25 was still 0.0. Hopefully, continued use of Lupron will keep PSA at 0.

    Lupron Vs Degarelix
    I am a 71 year old quite active (do and hope to continue to do triathlons) whose RP in December 2008 wasn't successful in getting all my cancer. My PSA rose fairly slowly. Late January this year a bone scan disclosed 3 lesions and a ProstaScint in February disclosed a suspect lymph node. My PSA has recently spiked going from 6.4 January to 8.1 in early March. I have decided to proceed with HT and after reading about Degarelix's no T flare and quick PSA suppression asked my doctor for this hormone versus Lupron. Would like feedback on whether or not I may have been hasty in my decision.

    Thanks.
  • Katman
    Katman Member Posts: 6

    Lupron Vs Degarelix
    I am a 71 year old quite active (do and hope to continue to do triathlons) whose RP in December 2008 wasn't successful in getting all my cancer. My PSA rose fairly slowly. Late January this year a bone scan disclosed 3 lesions and a ProstaScint in February disclosed a suspect lymph node. My PSA has recently spiked going from 6.4 January to 8.1 in early March. I have decided to proceed with HT and after reading about Degarelix's no T flare and quick PSA suppression asked my doctor for this hormone versus Lupron. Would like feedback on whether or not I may have been hasty in my decision.

    Thanks.

    Lupron Vs Degarelix
    brasildoug,

    My doctor started me on monthly Degarelix first in order to get the PSA down to 0 ASAP. He told me in the beginning of my treatment that once the PSA went to 0, I could get off Degarelix and wait until the PSA started up again. At that time, Degarelix would be re-started again. Instead of re-starting Degarelix, the alternative would be to go on 4 month Lupron. I am now on 4 month Lupron and quite happy that the PSA continues at 0. However, I believe that starting with Degarelix first and then switching to Lupron was the prudent thing to do, in my case. YMMV
  • Medcomglen
    Medcomglen Member Posts: 95
    wayne2 said:

    MORE BLESSINGS
    Hi Glen :Another psa check last month..........still at 0.1. Another injection today..............more pain, but that's ok........It's a blessing. We've had ice and snow so I got out my oil paints again......painting a picture of our home.Fishing soon tho:-))

    How you doin , Glen ?? I couldn't find your Feb 01,2011 post?? I hope all is well................you have that beautiful daughter to stick around for............

    wayne

    PSA Rising
    Hi Wayne,

    I'm sorry I haven't been able to reply sooner. Having problems accessing this board due to very slow loading times. I wonder if it's just my connection or if others are having problems too.

    Good to hear you are doing well and yes we have been blessed with great supporters in our lives. Speaking of which...rescued a female Yellow Lab pup a couple of months ago from the shelter that has become my best friend and motivation for early morning walks and getting to the Dog Beach. I even lost ten pounds since I got the pup.

    Had my PSA test results Friday and my PSA jumped to 3.5 from 1.3 in three months so I guess it's time for another shot of Firmagon. My last Firmagon injection was back in September 2010. I've been pretty active though...my Daughter and I joined an Archery Club recently and been fishing from a Kayak so been getting upper body exercise and eating well too. Hopefully my next Firmagon injection won't set me back too much. In the meantime best wishes to you and yours.
    Glen
  • wayne2
    wayne2 Member Posts: 31

    PSA Rising
    Hi Wayne,

    I'm sorry I haven't been able to reply sooner. Having problems accessing this board due to very slow loading times. I wonder if it's just my connection or if others are having problems too.

    Good to hear you are doing well and yes we have been blessed with great supporters in our lives. Speaking of which...rescued a female Yellow Lab pup a couple of months ago from the shelter that has become my best friend and motivation for early morning walks and getting to the Dog Beach. I even lost ten pounds since I got the pup.

    Had my PSA test results Friday and my PSA jumped to 3.5 from 1.3 in three months so I guess it's time for another shot of Firmagon. My last Firmagon injection was back in September 2010. I've been pretty active though...my Daughter and I joined an Archery Club recently and been fishing from a Kayak so been getting upper body exercise and eating well too. Hopefully my next Firmagon injection won't set me back too much. In the meantime best wishes to you and yours.
    Glen

    PSA RISING....FOR GLEN
    HI GLEN...........NOW I'M THE ONE WHO'S LATE :-))We went to Phoenix,az to visit family this month.

    I really like your puppy story;what a great piece of therepy !!!...and now archery too !!My son in Austin has a good friend who has written some books about making bows.....the "robinhood" type. So our son made one. Sounds like you're having some more good times with your daughter :-)).........family times are blessings to me !!I like your puppy story......sounds like it's great therepy :-))......and now you're fishing from a kayak.....whew !! good for you !! I've been fishing some and having fun catching a variety of bass.

    Our trip to the Phoenix area was a real blessing.............visited with son, five grandkids, and five great-grandkids......whew !; made for great naps:-))...and another son with one stepdaughter.
    feels good to be home;psa hangin' in at 0.1 ........blessings still..........wayne
  • wayne2
    wayne2 Member Posts: 31

    PSA Rising
    Hi Wayne,

    I'm sorry I haven't been able to reply sooner. Having problems accessing this board due to very slow loading times. I wonder if it's just my connection or if others are having problems too.

    Good to hear you are doing well and yes we have been blessed with great supporters in our lives. Speaking of which...rescued a female Yellow Lab pup a couple of months ago from the shelter that has become my best friend and motivation for early morning walks and getting to the Dog Beach. I even lost ten pounds since I got the pup.

    Had my PSA test results Friday and my PSA jumped to 3.5 from 1.3 in three months so I guess it's time for another shot of Firmagon. My last Firmagon injection was back in September 2010. I've been pretty active though...my Daughter and I joined an Archery Club recently and been fishing from a Kayak so been getting upper body exercise and eating well too. Hopefully my next Firmagon injection won't set me back too much. In the meantime best wishes to you and yours.
    Glen

    PSA RISING
    ALSO............I hope your latest shot gets you back on track; You might be plowing new ground for many of us with your off-on-again shots.

    peace..........wayne
  • wayne2
    wayne2 Member Posts: 31

    PSA Rising
    Hi Wayne,

    I'm sorry I haven't been able to reply sooner. Having problems accessing this board due to very slow loading times. I wonder if it's just my connection or if others are having problems too.

    Good to hear you are doing well and yes we have been blessed with great supporters in our lives. Speaking of which...rescued a female Yellow Lab pup a couple of months ago from the shelter that has become my best friend and motivation for early morning walks and getting to the Dog Beach. I even lost ten pounds since I got the pup.

    Had my PSA test results Friday and my PSA jumped to 3.5 from 1.3 in three months so I guess it's time for another shot of Firmagon. My last Firmagon injection was back in September 2010. I've been pretty active though...my Daughter and I joined an Archery Club recently and been fishing from a Kayak so been getting upper body exercise and eating well too. Hopefully my next Firmagon injection won't set me back too much. In the meantime best wishes to you and yours.
    Glen

    PSA RISING
    ALSO............I hope your latest shot gets you back on track; You might be plowing new ground for many of us with your off-on-again shots.

    peace..........wayne
  • wayne2
    wayne2 Member Posts: 31

    PSA Rising
    Hi Wayne,

    I'm sorry I haven't been able to reply sooner. Having problems accessing this board due to very slow loading times. I wonder if it's just my connection or if others are having problems too.

    Good to hear you are doing well and yes we have been blessed with great supporters in our lives. Speaking of which...rescued a female Yellow Lab pup a couple of months ago from the shelter that has become my best friend and motivation for early morning walks and getting to the Dog Beach. I even lost ten pounds since I got the pup.

    Had my PSA test results Friday and my PSA jumped to 3.5 from 1.3 in three months so I guess it's time for another shot of Firmagon. My last Firmagon injection was back in September 2010. I've been pretty active though...my Daughter and I joined an Archery Club recently and been fishing from a Kayak so been getting upper body exercise and eating well too. Hopefully my next Firmagon injection won't set me back too much. In the meantime best wishes to you and yours.
    Glen

    PSA RISING
    ALSO............I hope your latest shot gets you back on track; You might be plowing new ground for many of us with your off-on-again shots.

    peace..........wayne