Firmagon (Degarelix) substitute for Lupron

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  • AKFrank
    AKFrank Member Posts: 9
    #202
    mrspjd said:

    Frank
    While you're not exactly a newbie with several posts already made, I'd still like to extend a warm welcome. I've actually been following your posts, and agree that you are indeed fortunate to have been accepted into the phase III ipiliumamab study. Thanks for sharing your very important and informative posts about your history and progress. While some of the side effects appear to be unpleasant, you have a good idea that you did not receive the placebo. We all know there are no assurances in clinical trials, but thanks to men like you who participate, there will be hope for others. I might like to offer one suggestion: since you are no longer taking the Firmagon injections, and this thread is mostly about Firmagon, you might consider starting a new thread about ipiliumamab and posting your history/updates there for a wider audience of PCa forum readers who might learn/benefit from your experiences--just a suggestion.

    Hoping that your recent (and future) scans provide good news and that you respond favorably to the drugs. Wishing you well and much success.
    mrs pjd

    ipiliumamab
    Thanks for your suggestion of starting a new thread specific to Ipilumamab. That would be more appropriate. Anyone on this thread interested in following my experience can go to that thread.
    Frank
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #203
    RADIATION HOPEFUL said:

    GOLD SEEDS
    THANK you KONGO

    I read several of your previous posts & wish you the best. I had the rectum biopsy where 12 cores were removed & yes it wasn't pleasant. My urologist is doing the rectum procedure to implant the seeds, I must take medicine prior to, during & after the procedure to prevent infection. Due to the high Gleason score I was told they have to do a wide beam (IMRT/IGRT)type of radiation due to statistics indication microscopic cells could be in the vesicles & or lymph nodes. I was also told Surgery would require radiation if I chose that route. IF the cancer is in the prostrate only (unlikely) it would be a home run. Both the urologist & radiation oncologist strongly recommended the external radiation procedure. Thus I'm going that route & will try to maintain stamina through proper nutrition. Thanks again for the reply, I'm glad I found this site.
    Blessings & prayers to all facing this dilema.
    How are you feeling regarding the radiation approach?

    Radhope, Good luck in sorting out things
    Hi Radhope
    The decision on a new treatment is very challenging. We always have to thing on a long term affair with the culprit, even if we aspire for a quick end. I have been on this bumpy road for ten years and have done the most classical protocols in the best institutions, with the intent of getting rid of the cancer. Nowadays I see it more as a chronic disease which I will continuously have under check. Quality of life has been important to me.
    There is another forum with hot discussions on several treatments seen from newer perspective. You may as well give it a look to get ideas on your choosen treatment.
    http://www.healthboards.com/boards/showthread.php?t=750224
    http://www.healthboards.com/boards/showthread.php?t=755409
    Good luck to you in sorting out things.

    Merry Christmas
    VGama
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218
    #204
    VascodaGama said:

    Radhope, Good luck in sorting out things
    Hi Radhope
    The decision on a new treatment is very challenging. We always have to thing on a long term affair with the culprit, even if we aspire for a quick end. I have been on this bumpy road for ten years and have done the most classical protocols in the best institutions, with the intent of getting rid of the cancer. Nowadays I see it more as a chronic disease which I will continuously have under check. Quality of life has been important to me.
    There is another forum with hot discussions on several treatments seen from newer perspective. You may as well give it a look to get ideas on your choosen treatment.
    http://www.healthboards.com/boards/showthread.php?t=750224
    http://www.healthboards.com/boards/showthread.php?t=755409
    Good luck to you in sorting out things.

    Merry Christmas
    VGama

    THANK YOU
    Hello VGama

    Thank you for the reply--appreciate it

    After looking at the sites you noted, I believe my decision to go with external beam & hormone therapy may be appropriate for my situation. I sure hope I don't encounter any severe side affects.
    THANK YOU & MAY YOU HAVE A WONDERFUL CHRISTMAS.

    Radiation Hopeful
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218
    #205
    Firmagon affects
    Hello Glen

    I had my first stomach (2) shots of Firmagon as I indicated in a earlier thread--second shot in another week (only one shot this time) with NO side affects on the first --other than a little pain in the injection site for a day or two. It hurt when I would bend down etc. but it eventually went away. It lowered my PSA from 55 to 17 thus it works. According to my urologist the scond shot should lower the PSA to zero. Keep in touch & I'll let you know how it goes. I'm having the three gold seeds inserted in the prostrate in a few weeks after the holiday --preparing for external beam radiation.
    Hope this info helps you --my Gleason score was a 9 & Psa was 55 last month in November--2010.

    I love tractors (have a Oliver & a International-old ones that still work)& see you are on one---what is it?

    Rdiation Hopeful
  • Medcomglen
    Medcomglen Member Posts: 95
    #206
    RADIATION HOPEFUL said:

    Firmagon injection
    Hello
    I was recently diagnosed with PC --psa of 55 & a gleason score of 9.
    Two options available >Surgery or radiation & if I chose surgery, radiation would also be needed.

    Bone scan & ct scans show clear--no metasis.
    The first (2 in stomach) firmagon shot was painful for awhile but subsided after a day. I'm scheduled for the next shot in another week. The first shot made the psa go from 55 to 17. According to urologist the next shot should take it to zero.

    Just turned 65 & have a lot of living to do --hope I can make it a reality.
    Bless all involved with this dreaded disease.

    Welcome
    I can relate to your statement since I was diagnosed at age 56. At least yours hasn't spread too far. Glad to see your PSA lowered that fast too. Hopefully you will receive another good report and an early Christmas gift as I have had recently with low low test result numbers from Firmagon. My last shot was in September and I'm still below the one mark. It's a tough decison to have or not to have surgery but I assume you have educated yourself on all the pros and cons. I was informed to have surgery too in the beginning but after calculating my grade, stage and PSA in the Partin Table, surgery wasn't an option for me personally. I also had a ProstaScint scan that showed lymph gland involvement which proved I made the right decision. I feel for you having to go through this during the Holidays but no time is the right time to be faced with this.

    Wishing you the Best and enjoy the Holidays,
    Glen
  • Medcomglen
    Medcomglen Member Posts: 95
    #207
    wardyboy said:

    Good news!!
    I havent been on this board in a bit.Busy with the holidays and Hunting season!My son took his first deer this year and boy was i proud.I have been feeling great,especially since having the stent in my bladder removed.That sucker was causing me grief for over 9 weeks!!Well I have been taking Casodex daily along with my monthly Degerelix injection for about 4 weeks now and just got my latest PSA test results. Im down to .10 !!!!! Hopefully it goes even closer to 0 next month.Were going to get some MRIs done soon to get a look at whats going on and maybe radiation in a couple of months. Wardy

    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 maske it down to Sanibel? Wishing you and yours a Happy Holida Season.
    Glen
  • Medcomglen
    Medcomglen Member Posts: 95
    #208
    wardyboy said:

    Good news!!
    I havent been on this board in a bit.Busy with the holidays and Hunting season!My son took his first deer this year and boy was i proud.I have been feeling great,especially since having the stent in my bladder removed.That sucker was causing me grief for over 9 weeks!!Well I have been taking Casodex daily along with my monthly Degerelix injection for about 4 weeks now and just got my latest PSA test results. Im down to .10 !!!!! Hopefully it goes even closer to 0 next month.Were going to get some MRIs done soon to get a look at whats going on and maybe radiation in a couple of months. Wardy

    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 maske it down to Sanibel? Wishing you and yours a Happy Holiday Season.
    Glen
  • Medcomglen
    Medcomglen Member Posts: 95
    #209
    wardyboy said:

    Good news!!
    I havent been on this board in a bit.Busy with the holidays and Hunting season!My son took his first deer this year and boy was i proud.I have been feeling great,especially since having the stent in my bladder removed.That sucker was causing me grief for over 9 weeks!!Well I have been taking Casodex daily along with my monthly Degerelix injection for about 4 weeks now and just got my latest PSA test results. Im down to .10 !!!!! Hopefully it goes even closer to 0 next month.Were going to get some MRIs done soon to get a look at whats going on and maybe radiation in a couple of months. Wardy

    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
  • Medcomglen
    Medcomglen Member Posts: 95
    #210
    RADIATION HOPEFUL said:

    Firmagon injection
    Hello
    I was recently diagnosed with PC --psa of 55 & a gleason score of 9.
    Two options available >Surgery or radiation & if I chose surgery, radiation would also be needed.

    Bone scan & ct scans show clear--no metasis.
    The first (2 in stomach) firmagon shot was painful for awhile but subsided after a day. I'm scheduled for the next shot in another week. The first shot made the psa go from 55 to 17. According to urologist the next shot should take it to zero.

    Just turned 65 & have a lot of living to do --hope I can make it a reality.
    Bless all involved with this dreaded disease.

    Welcome
    repeat
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #211
    RADIATION HOPEFUL said:

    Firmagon affects
    Hello Glen

    I had my first stomach (2) shots of Firmagon as I indicated in a earlier thread--second shot in another week (only one shot this time) with NO side affects on the first --other than a little pain in the injection site for a day or two. It hurt when I would bend down etc. but it eventually went away. It lowered my PSA from 55 to 17 thus it works. According to my urologist the scond shot should lower the PSA to zero. Keep in touch & I'll let you know how it goes. I'm having the three gold seeds inserted in the prostrate in a few weeks after the holiday --preparing for external beam radiation.
    Hope this info helps you --my Gleason score was a 9 & Psa was 55 last month in November--2010.

    I love tractors (have a Oliver & a International-old ones that still work)& see you are on one---what is it?

    Rdiation Hopeful

    Hi Glen, Nice Christmas Gift
    Hi Glen
    Congratulations on your earlier Christmas Gift at the low level. Hopefully that will repeat in 2011.
    Have a Merry Christmas
    VGama
  • wardyboy
    wardyboy Member Posts: 13
    #212
    Medcomglen said:

    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 maske it down to Sanibel? Wishing you and yours a Happy Holiday Season.
    Glen

    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
  • wayne2
    wayne2 Member Posts: 31
    #213
    Medcomglen said:

    Welcome
    repeat

    BLESSINGS
    Hi All..........GLEN,RADHOPE,VGAMA,KONGO, AND ALL SURVIVORS...........WHAT A BLESSING IT HAS BEEN TO READ ALL THE MESSAGES.........I'M GETTING ANOTHER PSA NEXT MONTH........BEEN AT 0.1 FOR A WHILE NOW...........6 MONTHS. THE NEXT SHOT WILL BE MY TENTH MONTH OF FIRMAGON. tHE WAIT BETWEEN SHOTS THIS TIME WILL BE FIVE WEEKS INSTEAD OF THE USUAL FOUR..........FOR SCHEDULING CONVENIENCE I GUESS. THE KNOT FACTOR WAS BETTER THIS LAST TIME, AND WE'RE HAVING GOOD FRIENDS OVER FOR DINNER TOMORROW............SO BLESSINGS TO ALL AND THANKS FOR BEING THERE.

    MERRY CHRISTMAS...

    WAYNE
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218
    #214
    Medcomglen said:

    Welcome
    I can relate to your statement since I was diagnosed at age 56. At least yours hasn't spread too far. Glad to see your PSA lowered that fast too. Hopefully you will receive another good report and an early Christmas gift as I have had recently with low low test result numbers from Firmagon. My last shot was in September and I'm still below the one mark. It's a tough decison to have or not to have surgery but I assume you have educated yourself on all the pros and cons. I was informed to have surgery too in the beginning but after calculating my grade, stage and PSA in the Partin Table, surgery wasn't an option for me personally. I also had a ProstaScint scan that showed lymph gland involvement which proved I made the right decision. I feel for you having to go through this during the Holidays but no time is the right time to be faced with this.

    Wishing you the Best and enjoy the Holidays,
    Glen

    Second Firmagon Shot
    Hello Glen

    Well --I got my second shot, it hurt a little but now feels "ok"---won't know results of PSA until I get another blood test around mid-January.
    Question> did you take any medication for the bones since the drugs affect the bones by making them thin? The radiation treatments start around week of January 17th.

    Thanks in advance for your reply

    Radiation Hopeful
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218
    #215
    VascodaGama said:

    Hi Glen, Nice Christmas Gift
    Hi Glen
    Congratulations on your earlier Christmas Gift at the low level. Hopefully that will repeat in 2011.
    Have a Merry Christmas
    VGama

    Hello Again
    Hello VGama

    I too am glad to hear Glen had a good report.
    Just had my second shot of Firmagon --don't know results until I get another PSA blood test around end of January 2011. My radiation treatments will start around the week of January 17th 2011 & continue into March or April. I'm watching my diet & taking some vitamines to help the bones since the drugs thin the bones.

    Have a HAPPY HOLIDAY--look forward to future postings

    Radiation Hopeful
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #216
    RADIATION HOPEFUL said:

    Hello Again
    Hello VGama

    I too am glad to hear Glen had a good report.
    Just had my second shot of Firmagon --don't know results until I get another PSA blood test around end of January 2011. My radiation treatments will start around the week of January 17th 2011 & continue into March or April. I'm watching my diet & taking some vitamines to help the bones since the drugs thin the bones.

    Have a HAPPY HOLIDAY--look forward to future postings

    Radiation Hopeful

    Radhope, I suggest you do some Physical Exercises
    Hi Radhope
    It is nice to know that you reached a decision on the type of RT you will undertake in January. I am surprised for the length of the treatment (January to April). Surely you will do well and have peace of mind once all is over.
    Both, RT and low testosterone affect bone mass, however, the tendency for bone loss is higher in guys in continuous ADT (androgen deprivation) for long periods, as a prime treatment.

    You could take now a bone density test to serve you as a base in future decisions. My BDT detected osteopenia in the lumbar and femur neck in a very low percentage. But my doctor recommended me to take a weekly bisphosphonate (70mg) tablet since I started ADT.
    I suggest you to do some physical exercises as its anabolic effect are good in countering the side effects from RT, as well as it helps in avoiding bone loss. You will need to consume foods with plenty of calcium and vitamin D, for bone build up, not only supplements.

    I wish you the best in the treatment. Meanwhile enjoy the New Year.
    VGama
  • mrspjd
    mrspjd Member Posts: 694 Member
    #217
    VascodaGama said:

    Radhope, I suggest you do some Physical Exercises
    Hi Radhope
    It is nice to know that you reached a decision on the type of RT you will undertake in January. I am surprised for the length of the treatment (January to April). Surely you will do well and have peace of mind once all is over.
    Both, RT and low testosterone affect bone mass, however, the tendency for bone loss is higher in guys in continuous ADT (androgen deprivation) for long periods, as a prime treatment.

    You could take now a bone density test to serve you as a base in future decisions. My BDT detected osteopenia in the lumbar and femur neck in a very low percentage. But my doctor recommended me to take a weekly bisphosphonate (70mg) tablet since I started ADT.
    I suggest you to do some physical exercises as its anabolic effect are good in countering the side effects from RT, as well as it helps in avoiding bone loss. You will need to consume foods with plenty of calcium and vitamin D, for bone build up, not only supplements.

    I wish you the best in the treatment. Meanwhile enjoy the New Year.
    VGama

    Vasco
    Am always interested in learning. Your post indicated that RT affects bone mass...so wondering if you might elaborate on how that takes place, separately or isolated from ADT. I'm aware of the effect that ADT has on bone health from lack of testosterone/DHT, but did not know that RT does as well. How does this (bone mass loss) occur from RT for PCa tx? Thanks.
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #218
    mrspjd said:

    Vasco
    Am always interested in learning. Your post indicated that RT affects bone mass...so wondering if you might elaborate on how that takes place, separately or isolated from ADT. I'm aware of the effect that ADT has on bone health from lack of testosterone/DHT, but did not know that RT does as well. How does this (bone mass loss) occur from RT for PCa tx? Thanks.

    Clemson University; "radiation can cause appreciable bone loss"
    reapeted;
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #219
    mrspjd said:

    Vasco
    Am always interested in learning. Your post indicated that RT affects bone mass...so wondering if you might elaborate on how that takes place, separately or isolated from ADT. I'm aware of the effect that ADT has on bone health from lack of testosterone/DHT, but did not know that RT does as well. How does this (bone mass loss) occur from RT for PCa tx? Thanks.

    Clemson University; "radiation can cause appreciable bone loss"
    Hi MRSPJD,
    I have been following with interest some studies done in Japan in regards to the after effects in atomic bomb survivors, particularly in respect to the radiation we patients are continuously exposed when taking so many CT scans, Prostascint scans, etc. I have also participated in a medical conference on the theme “Radiotherapy and its Long-term Effects”. Recently my interest in the matter was triggered with regards to the astronauts loss of bone mass due to exposure to space radiation and the near-zero gravity.
    There exits many data and information on the subject. Just google and follow links, if that is of your interest.

    You can read about the findings by Professor Ted Bateman, PhD, from Clemson University at this site;
    http://www.rense.com/general74/CATTN.HTM
    It says; “…The scientific world has been shaken by a report from Clemson University that a single therapeutic dose of radiation can cause appreciable bone loss.”

    Dr. Bateman comments like this; “… astronauts in space can lose about as much bone in a month as an average senior citizen loses in a year here on Earth. Scientists have long known one cause of bone loss is the near-zero-gravity of space. Using micro-computed tomography in studies on mice, Bateman found that space radiation rapidly attacks bone health.” (http://www.nsbri.org/projects/indivProject.asp?id=412&projID=134)

    In another report they say “According to a recent article in the Journal of the American Medical Association, there is a 60-200% increase in hip fracture rates following radiation treatment for pelvic cancers in women. Breaking a hip often causes a large decline in quality of life and leads to death in approximately 20% of those affected” (http://medicalphysicsweb.org/cws/article/research/31544)

    I wish you find what you looking for. Happy New Year.
    VGama
  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218
    #220
    VascodaGama said:

    Radhope, I suggest you do some Physical Exercises
    Hi Radhope
    It is nice to know that you reached a decision on the type of RT you will undertake in January. I am surprised for the length of the treatment (January to April). Surely you will do well and have peace of mind once all is over.
    Both, RT and low testosterone affect bone mass, however, the tendency for bone loss is higher in guys in continuous ADT (androgen deprivation) for long periods, as a prime treatment.

    You could take now a bone density test to serve you as a base in future decisions. My BDT detected osteopenia in the lumbar and femur neck in a very low percentage. But my doctor recommended me to take a weekly bisphosphonate (70mg) tablet since I started ADT.
    I suggest you to do some physical exercises as its anabolic effect are good in countering the side effects from RT, as well as it helps in avoiding bone loss. You will need to consume foods with plenty of calcium and vitamin D, for bone build up, not only supplements.

    I wish you the best in the treatment. Meanwhile enjoy the New Year.
    VGama

    Exercise
    Once again >Thank YOU for the memo regarding bone loss. I will take supplements & exercise to keep my bones strong during the radiation treatments. My wife is also changing my diet so I eat more healthy foods. I will talk to my family doctor about a bone density test as you mentioned.
    When I say January to April --radiation treatments will be starting the end of January & continue for 9 weeks with weekends off. I hope to have strenghth & stamina when Spring arrives. Once the weather is better I can then take walks etc. During the winter months, I will try & shovel snow plus plow with my garden tractor in an attempt to maintain a exercise routine.
    We have a pellet stove & I fill the bucket daily by emptying 40 pound bags of pellets into a container then filling the bucket from that. Carrying the bucket into the stove area requires the use of muscles.
    My wife found two articles on the web indicating hormone therapy first then radiation were the most current approaches showing promise of a cure from this dreaded disease.

    Thanks again for the sound advice --- I appreciate your feedback

    Radiation Hopeful
  • mrspjd
    mrspjd Member Posts: 694 Member
    #221
    VascodaGama said:

    Clemson University; "radiation can cause appreciable bone loss"
    reapeted;

    the verdict is still out re RT & bone mass loss
    Vasco,
    I've reviewed some of the info links you posted & similar info previous to your postings. In regard to radiation in space, we are exposed to radiation every day right here on earth too. In space, while astronauts are exposed in their protective outerwear "space suits" or inside the craft, their radiation exposure is full body, not specific/localized as is IMRT/IGRT, used most often today for PCa RT tx. As to the matter of pelvic RT exposure, the studies you referenced (and others) were done with women dx with gynecological cancers who also may have been post menopausal and/or had hormone txs, so any pelvic/hip fractures may have resulted from hormone reduction. Also, EBRT (an older form of RT), may have posed more risk for women in those studies. In addition, that exposure was not whole body (as in whole body bone mass loss). It is my belief that any potential bone cell death, possibly occuring as a result of localized PCa RT, has the ability to regenerate, but that is another matter, different from whole body bone mass loss. I would agree that RT, like any PCa tx, has it's share of possible side effect risks, whether immediate or future. However, I do not see the correlation of how external RT in the localized tx of PCa can cause whole body bone mass loss as you initially indicated.
    Best.

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