Firmagon (Degarelix) substitute for Lupron

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Comments

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    THANKS FOR THE POST
    VGama

    Thanks once again for the info, I questioned the change of one drug (Firmagon) to the other (ELigard) & was told the Firmgon is only used to suppress the PSA while the Eligard will stop total testesterone production.
    I also try to stay active & got scared of what I read about the Eligard. Very happy to hear you are taking the drug without serious side affects.
    Since I start the radiation next week I really didn't want to change hormone drugs. Can you tell me what dose you are taking --the 1, 3-4, or 6 month injections?
    I believe you get the PSA flare based on the amount of the drug you receive. The one month injections have a low dosage while the multiple months are high thus placing a strain on your entire system. But again why change if one is working & lowering the PSA along with shrinking the prostrate---this is what bothers me. Another concern is I'm just a little guy weighing in at 120lbs. (lost 20 lbs. since November)& would have a much more severe reaction than say a 200lb. man. I'm also taking heart medication for irregular heart beat & fear taking chances. I have very few side affects using Firmagon (don't know what the PSA reading is from the second shot)& have a request in for the doctor to contact me regarding the change. I believe I mentioned earlier I had Lyme disease a few months ago (JULY2010)& still have residul side affects such as nerve damage to the fingers. I'm afraid taking the Eligard could result in even further nerve damage since this is one of the side affects---not so with Firmagon.Thanks again for the post----prayers & good wishes to all having this terrible disease.
    Rad Hopeful

    RadHope, Discuss your concerns with your doctor
    If you are satisfied with the firmagon (good results on weakening the cancer and non aparent side effects) then you do not need to change to Eligard. Discuss your concerns with your doctor, including your past nerves history, etc., and ask to stay on Firmagon. He will understand it or explain you a good reason for the change.

    The site above on Eligard explains the difference between the various dosages. I am taking the 45mg (6-month shot).
    Relax do not be anxious.

    I hope all goes ok to you.
    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...............Looks like you're holding your four months after your last injection!!..............Keep the faith and keep on praying. I took my Bass photo off my profile. I think it was overwhelming somethng. I'll get a better one up soon. I'm blessed with another psa of 0.10 taken yesterday. I see my urologist tomorrow for a checkup. I've been getting the firmagon shots since last April. At my age, every good month is a HAPPY TIME. Too cold to fish right now. I try to help at church, socialize with other guys, and do some oil painting and do stuff with my wife. Tried fishing a week ago and got blown off the lake. Hope you're able to get another Firmagon shot soon.

    blessings.....................wayne
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    wayne2 said:

    LATEST PSA RESULTS
    Hi Glen...............Looks like you're holding your four months after your last injection!!..............Keep the faith and keep on praying. I took my Bass photo off my profile. I think it was overwhelming somethng. I'll get a better one up soon. I'm blessed with another psa of 0.10 taken yesterday. I see my urologist tomorrow for a checkup. I've been getting the firmagon shots since last April. At my age, every good month is a HAPPY TIME. Too cold to fish right now. I try to help at church, socialize with other guys, and do some oil painting and do stuff with my wife. Tried fishing a week ago and got blown off the lake. Hope you're able to get another Firmagon shot soon.

    blessings.....................wayne

    PSA Results
    Extraordinary. I like to read reports on low PSAs. And you guys are constant winners.
    I wish you continuous low results.
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    PSA Results
    Extraordinary. I like to read reports on low PSAs. And you guys are constant winners.
    I wish you continuous low results.

    Postings
    VGama or anyone else with this disease.

    Thanks for the posts --past & present.
    I read many posts on the discussion board & noticed the majority of men afflictted with PC chose surgery & many although not all still having very low PSA scores indicating remission or cure.
    To your knowledge did you ever read or hear about anyone taking hormone therapy plus radiation treatments----- having similar outcomes & or a possible total remission?
    I know a lot depends on the cancer stage--is there a realistic hope of cure? A neighbor of mine (a nurse) was emphatic that there is NO cure.
    Again I pray for all having this disease.
    "Thanks to all that respond"

    Looking forward to a response
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Postings
    VGama or anyone else with this disease.

    Thanks for the posts --past & present.
    I read many posts on the discussion board & noticed the majority of men afflictted with PC chose surgery & many although not all still having very low PSA scores indicating remission or cure.
    To your knowledge did you ever read or hear about anyone taking hormone therapy plus radiation treatments----- having similar outcomes & or a possible total remission?
    I know a lot depends on the cancer stage--is there a realistic hope of cure? A neighbor of mine (a nurse) was emphatic that there is NO cure.
    Again I pray for all having this disease.
    "Thanks to all that respond"

    Looking forward to a response

    RadHope, Just keep positive about the treatment
    Hi RadHope
    There are many cases of patients treated with hormone therapy plus radiation, as your case. Surely many did well and many did not do very well, just like many guys that choose other type of therapies. Once hormone therapy is over and you can check your real (not influenced) PSA, then you will know about the full success of the treatment.
    There is one site (You Are Not Alone =YANO) where you can see patients with the same status as yours, and where you can read about their stories and outcome. You can even choose patients by their Gleason score + PSA + Age, etc. Just navigate within this site and you will find about guys who had the same status as yours;
    http://www.yananow.org/Chart-Gleason.htm

    Your neighbor nurse is not being realistic because she does not know. Just keep positive about the treatment and if the results are not as you most wanted, remember that nothing is lost. You just have to handle things as they come along.

    Tomorrow it is your “T” day. Good luck.
    I will think of you.
    VGama
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    RadHope, Just keep positive about the treatment
    Hi RadHope
    There are many cases of patients treated with hormone therapy plus radiation, as your case. Surely many did well and many did not do very well, just like many guys that choose other type of therapies. Once hormone therapy is over and you can check your real (not influenced) PSA, then you will know about the full success of the treatment.
    There is one site (You Are Not Alone =YANO) where you can see patients with the same status as yours, and where you can read about their stories and outcome. You can even choose patients by their Gleason score + PSA + Age, etc. Just navigate within this site and you will find about guys who had the same status as yours;
    http://www.yananow.org/Chart-Gleason.htm

    Your neighbor nurse is not being realistic because she does not know. Just keep positive about the treatment and if the results are not as you most wanted, remember that nothing is lost. You just have to handle things as they come along.

    Tomorrow it is your “T” day. Good luck.
    I will think of you.
    VGama

    Positive Thinking
    Thank you for the post. I truly appreciate the reply.
    Tomorrow at 8 A.M. I must be at the hospital to start my journey now that the 3 gold seeds are in place.
    I guess there are failure & success stories with any of the possible treatments.
    I will definitely check out the site you noted. I will also keep posting to let all know first hand the radiation outcome.
    Thanks again for the thoughts , I enjoy reading from this site---Good Wishes & prayers to all.

    Rad Hopeful
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    Positive Thinking
    Thank you for the post. I truly appreciate the reply.
    Tomorrow at 8 A.M. I must be at the hospital to start my journey now that the 3 gold seeds are in place.
    I guess there are failure & success stories with any of the possible treatments.
    I will definitely check out the site you noted. I will also keep posting to let all know first hand the radiation outcome.
    Thanks again for the thoughts , I enjoy reading from this site---Good Wishes & prayers to all.

    Rad Hopeful

    Treatment
    Hello All

    I had my simulation run in the hospital for radiation treatment. A cast was made using a thin plastic sheet -it is warm & moist fits-- the contour of your upper body from the waist up to your chest. Once hardened it is removed & retains your shape for use throughout treatment, Also had three tattoos (very small) permanently placed on the area to be targeted. THis was all done while lying on a table at a cat scan machine. Pictures/X-rays were taken to work up a plan of attack on the prostrate etc.
    I questioned the success rate of this radiation & was told there are numerous success stories. I'm now scheduled to go back next Thursday & have a simulation run then a full schedule of radiation days will be given. A diet guideline was also given. The hospital Cancer Center is warm & the nurses all very compassionate understanding your dilema.
    I'm sharing the experience with those contemplating the radiation approach.

    Wishing all success in whatever your approach in fighting this disease.
    Rad Hopeful
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Treatment
    Hello All

    I had my simulation run in the hospital for radiation treatment. A cast was made using a thin plastic sheet -it is warm & moist fits-- the contour of your upper body from the waist up to your chest. Once hardened it is removed & retains your shape for use throughout treatment, Also had three tattoos (very small) permanently placed on the area to be targeted. THis was all done while lying on a table at a cat scan machine. Pictures/X-rays were taken to work up a plan of attack on the prostrate etc.
    I questioned the success rate of this radiation & was told there are numerous success stories. I'm now scheduled to go back next Thursday & have a simulation run then a full schedule of radiation days will be given. A diet guideline was also given. The hospital Cancer Center is warm & the nurses all very compassionate understanding your dilema.
    I'm sharing the experience with those contemplating the radiation approach.

    Wishing all success in whatever your approach in fighting this disease.
    Rad Hopeful

    Thanks for the details
    RadHope,
    Thanks for the details. Many here are following your report and surely will take the benefit of the knowledge you are transmitting.
    Could you please give details on the diet guidelines you were told to follow.
    I wish you a continuous success.
    VGama
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    Thanks for the details
    RadHope,
    Thanks for the details. Many here are following your report and surely will take the benefit of the knowledge you are transmitting.
    Could you please give details on the diet guidelines you were told to follow.
    I wish you a continuous success.
    VGama

    Diet Suggestions Etc.
    Hello VGama & all

    I was given several books with pages of info of what to take IF you encounter any of the side affects Too long to post here , But I also have a paper giving general guidelines of a diet while undergoing radiation therapy to the pelvis & or rectum(prostrate,bladder,colon & rectum.) On this paper it states under diet> DO NOT take a laxative, Drink plenty of fluids--8 to 10 (8 oz.) glasses of fluids per day--avoiding citrus juices & caffeine, plus You will be placed on a low residue,low fiber diet to follow while undergoing radiation. The book gives lists of foods & liquids if you have diarrhea, foods rich in calories /protein,foods easy on the stomach--The book is titled National Cancer Institute-Radiation Therapy & You.
    I hope this helps in some respect. I was told to drink a full 16oz. of water at least 1/2 hour prior to the rad. treatments so the bladder can be moved if necessary---they want me to be the in the same condition when lying on the table. All this helps in guiding the beam when they start & minimize affecting the other organs. I have some reading to do but shared what I know so far. I wore jenes to the hospital but they had me change into a gown & gave a sheet to wrap around myself since the gowns are open in the rear-only undress from the waist down. I was allowed to keep my sneakers on which they strapped in place with velcro while lying on the table-- and my hands were held across the chest. Two nurses made slight position adjustments. The entire process din't take more than 45 min. at most then I was told I could leave & return next Thursday as I indicated earlier for a simulation run.
    Rad Hopeful
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Diet Suggestions Etc.
    Hello VGama & all

    I was given several books with pages of info of what to take IF you encounter any of the side affects Too long to post here , But I also have a paper giving general guidelines of a diet while undergoing radiation therapy to the pelvis & or rectum(prostrate,bladder,colon & rectum.) On this paper it states under diet> DO NOT take a laxative, Drink plenty of fluids--8 to 10 (8 oz.) glasses of fluids per day--avoiding citrus juices & caffeine, plus You will be placed on a low residue,low fiber diet to follow while undergoing radiation. The book gives lists of foods & liquids if you have diarrhea, foods rich in calories /protein,foods easy on the stomach--The book is titled National Cancer Institute-Radiation Therapy & You.
    I hope this helps in some respect. I was told to drink a full 16oz. of water at least 1/2 hour prior to the rad. treatments so the bladder can be moved if necessary---they want me to be the in the same condition when lying on the table. All this helps in guiding the beam when they start & minimize affecting the other organs. I have some reading to do but shared what I know so far. I wore jenes to the hospital but they had me change into a gown & gave a sheet to wrap around myself since the gowns are open in the rear-only undress from the waist down. I was allowed to keep my sneakers on which they strapped in place with velcro while lying on the table-- and my hands were held across the chest. Two nurses made slight position adjustments. The entire process din't take more than 45 min. at most then I was told I could leave & return next Thursday as I indicated earlier for a simulation run.
    Rad Hopeful

    Diet suggestions
    RadHope
    I appreciate your posting. You are a source of inspiration for many following your steps.
    I wish that your two months of therapy are uneventful marked by success.
    Vgama
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    Diet suggestions
    RadHope
    I appreciate your posting. You are a source of inspiration for many following your steps.
    I wish that your two months of therapy are uneventful marked by success.
    Vgama

    Radiation Treatment Decision
    Hello VGama

    I will gladly post the journey I'm venturing into & hope it helps others in making their decisions whatever they may be. Treatment decisions are based on individual circumstances--I can only realay what I'm encountering as I move forward.
    The mold of my body had my name written on it & will act like a jig making sure your in the same spot for all treatments. The 3 gold seeds inserted in the prostrate & tiny tattoos are other guides to assure the radiation beam will concentrate on the prostrate & not hit any other organs. I wrote a E-mail off another site to a man that went through the same treatment & he is doing well with a constant PSA check -both he & his urologist are pleased with for over a year now which is encouraging. He kept on working & maintained his stamina although got a little fatigue towards the end. All side affects went away after treatments stopped & he is doing well. I love to hear success stories & wish, hope & pray the best for ALL traveling this journey.

    Rad Hopeful
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    Radiation Treatment Decision
    Hello VGama

    I will gladly post the journey I'm venturing into & hope it helps others in making their decisions whatever they may be. Treatment decisions are based on individual circumstances--I can only realay what I'm encountering as I move forward.
    The mold of my body had my name written on it & will act like a jig making sure your in the same spot for all treatments. The 3 gold seeds inserted in the prostrate & tiny tattoos are other guides to assure the radiation beam will concentrate on the prostrate & not hit any other organs. I wrote a E-mail off another site to a man that went through the same treatment & he is doing well with a constant PSA check -both he & his urologist are pleased with for over a year now which is encouraging. He kept on working & maintained his stamina although got a little fatigue towards the end. All side affects went away after treatments stopped & he is doing well. I love to hear success stories & wish, hope & pray the best for ALL traveling this journey.

    Rad Hopeful

    PSA test results
    Hello VGam, Kongo & all

    Latest info

    Just got my PSA results from seond shot of Firmagon> 4.18

    First shot took PSA from 55 to 17 Now 17 down to 4.18 ---My hope is that the radiation treatments take it to ZERO. The latest number will be the baseline used in radiation treatment
    Prayers & blessings to all

    RadHopeful
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    PSA test results
    Hello VGam, Kongo & all

    Latest info

    Just got my PSA results from seond shot of Firmagon> 4.18

    First shot took PSA from 55 to 17 Now 17 down to 4.18 ---My hope is that the radiation treatments take it to ZERO. The latest number will be the baseline used in radiation treatment
    Prayers & blessings to all

    RadHopeful

    Excellent news
    Excellent news. All is going into your favour.
    I hope you keep giving us those fantastic reports.
    Wishing you the best
    VGama
  • Royalbert
    Royalbert Member Posts: 5

    Good to read your Good News!
    That's wonderful you responded that fast. You may want to see if you can have a ProstaScint scan too with your other scans. Read my first blogs and you'll see why. In the meantime congrats to your Son, I just finished some great venison from North FLorida. Did you ever make it down to Sanibel? Wishing you and yours a Happy Holiday Season.
    Glen

    I thought Firmagon was the magic bullet
    After 3 months on Firmagon my PSA has gone from 16 to 68. My bone scan is showing my pelvis cancerous so will be seeing the specialist on 24th Jan to see what's next.
    The service here in France is impressive. Got my disastrous blood test results last monday, already seen the Consultant,had a bone scan and starting treatment next week.
    I'm just a bit disappointed in Firmagon although I read somewhere it can get worse before it gets better.
    We'll see.
  • califvader
    califvader Member Posts: 108

    Firmagon PSA results
    Great news! My PSA results came back today...0.8 down from 4.7 one month earlier with initial dose of 240 mg of Firmagon. Received the first follow up Firmagon injection of 80 mg. yesterday but I am planning intermittent therapy for the future if PSA remains low. I experienced injection site pain, redness and swelling but overall side effects are still better when compared to my past experience with Lupron.

    Lupron
    what were your experiences with lupron?
  • califvader
    califvader Member Posts: 108
    questions.
    i am close to making a decision on my treatment. i am wondering why you started out on lupron and then decided to change to firmagon. also, what are the differences in side effects you experienced on both. which one do you feel your body handled better? i had a radical in 2003 and my psa has risen over the last 7 years.
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    questions.
    i am close to making a decision on my treatment. i am wondering why you started out on lupron and then decided to change to firmagon. also, what are the differences in side effects you experienced on both. which one do you feel your body handled better? i had a radical in 2003 and my psa has risen over the last 7 years.

    Hormone Drug
    Hello caligvader

    Don't know who you are directing the question to?
    I'm going for radiation treatments starting tomorrow & so far the Firmagon(Degarlix) is working for me, My original PSA was 55 & after two shots it's now at 4.1. I get my third shot today before starting radiation tomorrow.
    My original urologist wanted to start on Lupron which causes a flare in the PSA readings, the Firmagon doesn't do that. My second urologist is more up to date & knew about the difference. The only side affect that bothers me is an occassional hot flash. I assume we all may react differently thus I'm giving you some insight as to my personal experience only. I suggest you read the first & second pages where several members convey their personal experiences ---this may give you a better understanding of the drug side affects.

    Rad Hopeful
  • califvader
    califvader Member Posts: 108

    questions.
    i am close to making a decision on my treatment. i am wondering why you started out on lupron and then decided to change to firmagon. also, what are the differences in side effects you experienced on both. which one do you feel your body handled better? i had a radical in 2003 and my psa has risen over the last 7 years.

    my question is directed to
    my question is directed to medcomglen.
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    Excellent news
    Excellent news. All is going into your favour.
    I hope you keep giving us those fantastic reports.
    Wishing you the best
    VGama

    Another report
    Hello VGama,Kongo & All

    This evening I had my third shot of Firmagon --the first two lowered my PSA over 92% from 55 to 4.1 as I noted earlier. Well I also had a cystoscopy done to check out the Bladder. I'm happy to report NO ISSUES with the Bladder --No Cancer. Makes me feel better knowing all is clear in that organ. Tomorrow is Radiation day --will keep posting progress of this journey providing I'm not boring or offending anyone. One more item--I questioned the size of the prostrate & was told it shrank from 30 to 17 grams. Another good sign, the radiation should shrink it even smaller according to the urologist.

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

    my question is directed to
    my question is directed to medcomglen.

    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