Firmagon (Degarelix) substitute for Lupron
Comments
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capsaicinbobmack said:Firmagon
6 year survivor, radical prostatectomy,40 psa at time of surgery. 8-10 Gleason
Eligard after 2 years or so, Firmagon about 8 months ago. Tougher side affect with Firmagon. 2nd injection was 60 days after first because the doctor was out of town. Thank God because 60 days was soon enough. 30 days would have been overkill. PSA starting to creep up to 1.2 from .8 after Firmagon. Getting my weight under control from the Firmagon. Gained about 12 pounds to 167, which is higher than I have ever been. I am, on .5 mg daily of Avodart as an experiment. My hair stopped falling out, vitamin C helps that as well.
73 years old, inpretty good condition. Still feel great, but am neglectig my exercise.
Cancer in the spine seems to have subsided with the last scan.
I take a lot of herbal stuff as welland eat healthy. I use about one tube of capsaicin cream (0.1%) every 2 or three weeks. I read that it can kill PC cells. The Avodart dropped my DHT from a high of 1500 to a low of 29, T is still over 700. Starting on modified citrus pectin.
Does anyone know anything about noscapine ?
Where do you apply the capcaicin?0 -
THANKSGIVINGwayne2 said:THANKSGIVING
We're in Texas visiting a son and his wife for Thanksgiving. I had my last firmagon shot on Friday, Nov. 12th...............went fishing that afternoon and active in the boat ; lots of pain at the injection site that night and for several days after. I still have a hard knot at the site........about the size of a half dollar. This new for me. I read that the injection forms a nodule and then emits over a 28 day period..........anyone else have this happen ?
However............I still am blessed and have much to be thankful for.I pray for blessings for all this holiday.
wayne2
I take 200mg Ibuprofen before the shot and then 2-4 times a day for a week or two to take care of the injection pain. That makes the pain very tolerable. The knot from my 11/2 shot (left of belly button) is still there but almost gone. The next shot (number 9 since May) will be 12/2. The doctor will switch to the right of the belly button so there should be no problem. Alternating sides every month is the only way to go.0 -
NoscapineVascodaGama said:Another site about NOSCAPINE
Hi Glen, There is another site more descritive about this cough syrup. Many pitfalls were verified, so it should be taken seriously.
Have a look at;
http://www.psa-rising.com/mednews/tx/62-off-label/61-cough-medicine-noscapine-prostate-cancer-study
Regards
VGama
VGama,
Thanks for sharing that information. This looked very promising to stop the growth of lymph node involvement. I'll ask my Oncologist about Noscapine.
Best regards,
Glen0 -
Thanksgivingwayne2 said:THANKSGIVING
We're in Texas visiting a son and his wife for Thanksgiving. I had my last firmagon shot on Friday, Nov. 12th...............went fishing that afternoon and active in the boat ; lots of pain at the injection site that night and for several days after. I still have a hard knot at the site........about the size of a half dollar. This new for me. I read that the injection forms a nodule and then emits over a 28 day period..........anyone else have this happen ?
However............I still am blessed and have much to be thankful for.I pray for blessings for all this holiday.
wayne2
Happy belated Thanksgiving Wayne,
Sorry to hear you finally joined the club of "hard knots" amongst us "Firmagoners." Take two Darvocets...nope, can't take them anymore they were pulled from the shelves recently.
I took Darvocet and a steroid anti-inflammatory medication before and after which really helped with my injection pain.
My last PSA was only 0.7 up from 0.69 a couple of months earlier so I was thankful and was blessed too. I even saved a ton of money getting my PSA test from a walk in place called Any Lab Test Now. Only $39. with my ten dollar coupon I found in a local health magazine. I use to pay upwards of $80 with insurance read by the same company. That makes no sense does it? Haven't received my free Firmagon yet due to a mix-up between my Oncologists wholesaler and who Ferring uses to distribute Firmagon but I'm still hopeful.
By the way, my daughters boyfriend caught a goliath grouper they think weighed 300 lbs. 12 miles offshore at a reef. Had to release it of course.
Happy Fishing!0 -
ThanksgivingKatman said:THANKSGIVING
I take 200mg Ibuprofen before the shot and then 2-4 times a day for a week or two to take care of the injection pain. That makes the pain very tolerable. The knot from my 11/2 shot (left of belly button) is still there but almost gone. The next shot (number 9 since May) will be 12/2. The doctor will switch to the right of the belly button so there should be no problem. Alternating sides every month is the only way to go.
Katman,
Great advise...hopefully Wayne2 will see your post. He finally experienced the "hard knot sitiation" injection site pain. I always switch from side to side too but I think the raised itchy patch occurs when the drug is injected at a certain angle into firm tissue. Having a little fat probably helps deflect the medication :-)0 -
ThanksgivingMedcomglen said:Thanksgiving
Katman,
Great advise...hopefully Wayne2 will see your post. He finally experienced the "hard knot sitiation" injection site pain. I always switch from side to side too but I think the raised itchy patch occurs when the drug is injected at a certain angle into firm tissue. Having a little fat probably helps deflect the medication :-)
My urologist just switched me from Degarelix to Eligard. The nice thing about Eligard is that it lasts for 4 months and there was no injection site discomfort or hard knot. I got the impression that the length of the needle was only about 1/2 as long as the one for Degarelix but I could be wrong about that. Also the general tired feeling that I had for 3-5 days after Degarelix is gone. The doc said we can always switch back to Degarelix if there is any problem with Eligard. I guess the acid test for Eligard for me is if the PSA is still 0.0 which is where it is now after 7 months of Degarelix.0 -
Good news!!jogger said:capsaicin
Where do you apply the capcaicin?
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. Wardy0 -
Good newswardyboy 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
Wardyboy,
Congratulations on your lower PSA. Great news. Surely it goes to the zeros you say.0 -
PSA scorewardyboy 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
I guess I'm about as pleased as you are with your .10 as I am with my 1, having started from 800 twelve shots ago.0 -
New clinical studyretired1 said:Fimagon & Casodex
Hi Frank
I cannot give an answer you requested but your post is of great interest to me because you have previously been on Casodex and Lupron which is the present treatment I am on. Yesterday my PSA is down to 6.5 ( my history is posted way up the line here somewhere) and testosterone level is 4. I take the Lupron every 28 days and one casodex every day so I wonder why your doctor switched you to Fimagon???????
Perhaps it takes a few injections of Fimagon to start working for you( when I restarted Lupron my psa also went up for a couple of month before starting to reduce) so hang in there and please continue to post your results for us. many thanks
Bob
Hi Guys,
It's heartening to me to see so many of you are still getting help from Firmagon in holding your PSA down. My doctor tells me that some men get effective results from hormone treatment for many years.
Firmagon simply didn't work for me. My PSA went racing up to 47. I'm getting treatment in Alaska and surprising as it may seem, we have clinical studies going on here that are unavailable in many states. There's a drug called ipilimumab developed by a subsidiary of Bristol Myers. It's been used with some success in treating melanoma and also in prostate cancer patients. It hasn't proven to be a silver bullet cure yet but does extend life Up until now, it was only given double blind to patients who had already undergone chemo. I was accepted into a phase III study for those who have not yet gotten chemo but were no longer responding to hormone therapy. The program calls for 4 infusions 3 weeks apart. After the first one I felt no side effects so couldn't have any clue if I was getting the real thing. 2 out of 3 get the real thing and the 3rd one a placebo. After infusion 2 I broke out with a rash which is one of the symptoms. That was encouraging. After infusion 3 I developed the runs and have been fighting that for almost a month. During the time, I've lost about 18 lbs and I'm just a small man. The way the drug is supposed to work is it bolsters the bodies own immune system enabling our own body to attack cancer cells. I get a bone scan and ct scan today and see the results Thursday. It's slow acting so may not see any results yet but I'll let you know. My PSA is now 194 but the clinical nurse said to not be alarmed. They don't pay much attention to PSA at this early stage.
Frank0 -
clinical studyjogger said:PSA score
I guess I'm about as pleased as you are with your .10 as I am with my 1, having started from 800 twelve shots ago.
Hi Guys,
I'm heartened to hear so many of you guys are responding well to firmagon. My doctor tells me that some men remain receptive to hormone treatment for years.
Firmagon simply hasn't worked for me. My PSA shot up to 47 so I just went back on Lupron. A new clinical study became available for me here in Alaska called ipilimumab. It is a drug developed by Bristol Myers and the way it works is the drug bolsters the bodies own immune system allowing our own body to attack cancer cells. It's been used with some success with melanoma and I think it may be close to FDA approval for that cancer. It's also had success in extending life for prostate cancer patients. So far, it's been available in studies for men who have received chemo and are not responding. I'm in a phase III study for men who haven't yet had chemo. Presumably a group who still have a lot of body strength. I was very excited to get in. It's a double blind study with 2 of 3 getting the real thing and the 3rd a placebo. I didn't have any reaction after infusion #1. Infusion #2 left me with a rash which is one of the side effects. Infustion #3 on November 5th really socked me. I've been battling lose bowels for about a month now. Lost 16 lbs and I'm a small man. Anyway, I'm sure I'm getting the real thing.
I'm getting a bone and CT scan today and will see the results on Thursday. In the mean time my PSA has risen to 194. The clinical nurse said it's not abnormal for that to happen being this is a slow acting drug. Eventually, the PSA should drop. I'll keep you guys posted on what develops.
Frank0 -
HARD KNOTSMedcomglen said:Thanksgiving
Happy belated Thanksgiving Wayne,
Sorry to hear you finally joined the club of "hard knots" amongst us "Firmagoners." Take two Darvocets...nope, can't take them anymore they were pulled from the shelves recently.
I took Darvocet and a steroid anti-inflammatory medication before and after which really helped with my injection pain.
My last PSA was only 0.7 up from 0.69 a couple of months earlier so I was thankful and was blessed too. I even saved a ton of money getting my PSA test from a walk in place called Any Lab Test Now. Only $39. with my ten dollar coupon I found in a local health magazine. I use to pay upwards of $80 with insurance read by the same company. That makes no sense does it? Haven't received my free Firmagon yet due to a mix-up between my Oncologists wholesaler and who Ferring uses to distribute Firmagon but I'm still hopeful.
By the way, my daughters boyfriend caught a goliath grouper they think weighed 300 lbs. 12 miles offshore at a reef. Had to release it of course.
Happy Fishing!
Thanks, Glen for your note.......always gives me an uplift. Thanks to you too, Katman. I get another "HARD KNOT" tomorrow and still have part of the last knot. I'll try taking some tylenol beforehand........and then cool it rather than getting too active around the knot.The nurse does rotate around the front of my belly...........four different positions in kind of a square pattern.Tomorrow is my ninth shot.Glen, your psa "rise" to 0.7 from 0.69 might be insignificant...........margin of error ?
A 300 lb grouper ??? WOW.........Did it have to be released or just too bug to handle ? I hope your free Firmagon arrives for you soon.
WARDYBOY..............Congrats on your low psa !!!
blessing wishes to all.............wayne0 -
FrankAKFrank said:clinical study
Hi Guys,
I'm heartened to hear so many of you guys are responding well to firmagon. My doctor tells me that some men remain receptive to hormone treatment for years.
Firmagon simply hasn't worked for me. My PSA shot up to 47 so I just went back on Lupron. A new clinical study became available for me here in Alaska called ipilimumab. It is a drug developed by Bristol Myers and the way it works is the drug bolsters the bodies own immune system allowing our own body to attack cancer cells. It's been used with some success with melanoma and I think it may be close to FDA approval for that cancer. It's also had success in extending life for prostate cancer patients. So far, it's been available in studies for men who have received chemo and are not responding. I'm in a phase III study for men who haven't yet had chemo. Presumably a group who still have a lot of body strength. I was very excited to get in. It's a double blind study with 2 of 3 getting the real thing and the 3rd a placebo. I didn't have any reaction after infusion #1. Infusion #2 left me with a rash which is one of the side effects. Infustion #3 on November 5th really socked me. I've been battling lose bowels for about a month now. Lost 16 lbs and I'm a small man. Anyway, I'm sure I'm getting the real thing.
I'm getting a bone and CT scan today and will see the results on Thursday. In the mean time my PSA has risen to 194. The clinical nurse said it's not abnormal for that to happen being this is a slow acting drug. Eventually, the PSA should drop. I'll keep you guys posted on what develops.
Frank
I realy hope that this adventure of yours is beneficial to you not just to the ones reading your post.
The rise in PSA does not sound good. Are they giving you some assurances on the control of the cancer?
Wishing you the best
VGama0 -
ipiliumamabVascodaGama said:Frank
I realy hope that this adventure of yours is beneficial to you not just to the ones reading your post.
The rise in PSA does not sound good. Are they giving you some assurances on the control of the cancer?
Wishing you the best
VGama
I have no assurances. It's a study program and results of programs such as this only become public after months or years or study. Being I'm obviously getting the real thing, I can be a source of update to all you guys as to whether Ipilimumab works and be able to track the progress. I'm just so very thankful to be in the program. For this phase III study, 600 men are recruited worldwide, 150 from the United States. Only about 22 states have clinics participating in the study. For that reason, I'm willing to fly back and forth from our winter home in the Phoenix area to Alaska for lab work and infusions. Never had so much attention in my life.
Will keep everyone posted as this program progresses.
Frank0 -
FrankAKFrank said:ipiliumamab
I have no assurances. It's a study program and results of programs such as this only become public after months or years or study. Being I'm obviously getting the real thing, I can be a source of update to all you guys as to whether Ipilimumab works and be able to track the progress. I'm just so very thankful to be in the program. For this phase III study, 600 men are recruited worldwide, 150 from the United States. Only about 22 states have clinics participating in the study. For that reason, I'm willing to fly back and forth from our winter home in the Phoenix area to Alaska for lab work and infusions. Never had so much attention in my life.
Will keep everyone posted as this program progresses.
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 pjd0 -
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.0 -
Hi RadHope, A chance for remissionRADIATION 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.
Hi RadHope
Sorry to know you got PCa. I hope you learn in living with it and that this forum becomes of some help to you..
For all I read in guys with your diagnosis of Gs 9 and PSA 55, surgery or radiation are only recommended if the cancer is considered localized. This can be assumed from the data retrieved at biopsy (not mentioned here), which surely are the bases taken by the doctor who recommended those treatments. You can take that as a good chance for a remission, even with a high Gleason and PSA.
It is also practice to use hormonal drugs (Firmagon) to minimize the size of the prostate (with the tumour) before treatment so that it will be easier to cut it off or it will weaken the cancer cells for a better result from RT.
All treatment causes side effects which you should be familiar with. I would recommend you to read some sites in the net by googling “side effects from prostate cancer treatments”.
I wish all goes OK in your journey.
VGama0 -
THANK YOU VGamaVascodaGama said:Hi RadHope, A chance for remission
Hi RadHope
Sorry to know you got PCa. I hope you learn in living with it and that this forum becomes of some help to you..
For all I read in guys with your diagnosis of Gs 9 and PSA 55, surgery or radiation are only recommended if the cancer is considered localized. This can be assumed from the data retrieved at biopsy (not mentioned here), which surely are the bases taken by the doctor who recommended those treatments. You can take that as a good chance for a remission, even with a high Gleason and PSA.
It is also practice to use hormonal drugs (Firmagon) to minimize the size of the prostate (with the tumour) before treatment so that it will be easier to cut it off or it will weaken the cancer cells for a better result from RT.
All treatment causes side effects which you should be familiar with. I would recommend you to read some sites in the net by googling “side effects from prostate cancer treatments”.
I wish all goes OK in your journey.
VGama
THANK YOU SO MUCH for the encouraging feeedback, I truly appreciate it. I'm devasted with the findings & reading everything I can to understand the paths I must travel. Your memo was very helpful in understanding what Firmagon is attempting to do. I'm somewhat afraid to have the three gold seeds permanently implanted in my prostrate but understand this will help direct the radiation beam. I'm just starting this journey & wish you the best for yours. Firmagon already dropped my PSA to 17 & the urologist said the next shot will take it to zero. I will then start the radiation treatments a week later which hopefully will result in remission & or cure. Again THANK YOU for the response ---I wish the best for everyone.0 -
Gold SeedsRADIATION HOPEFUL said:THANK YOU VGama
THANK YOU SO MUCH for the encouraging feeedback, I truly appreciate it. I'm devasted with the findings & reading everything I can to understand the paths I must travel. Your memo was very helpful in understanding what Firmagon is attempting to do. I'm somewhat afraid to have the three gold seeds permanently implanted in my prostrate but understand this will help direct the radiation beam. I'm just starting this journey & wish you the best for yours. Firmagon already dropped my PSA to 17 & the urologist said the next shot will take it to zero. I will then start the radiation treatments a week later which hopefully will result in remission & or cure. Again THANK YOU for the response ---I wish the best for everyone.
Radiation Hopeful,
I had four gold seeds (fiducials) implanted in conjunction with my radiaiton treatment. I must say that it was pretty much a non-event and much less onerous than the biopsy.
There are two methods to implant fiducials. The first is transrectally and the second is via the perineum. My transrectal biopsy was very unpleasant so I chose the second method for fiducial placement with a local anesthetic. No lingering pain and much less chance of infection or other complication.
You have more than your share to worry about as you go forward but fiducials shouldn't be one of them. They will provide your radiological team with real time feedback on the movement of your prostate while you undergo your treatments so that the radiation can be accurately delivered and minimize potential damage to surrounding tissue and organs.
Best of luck in your journey.0 -
GOLD SEEDSKongo said:Gold Seeds
Radiation Hopeful,
I had four gold seeds (fiducials) implanted in conjunction with my radiaiton treatment. I must say that it was pretty much a non-event and much less onerous than the biopsy.
There are two methods to implant fiducials. The first is transrectally and the second is via the perineum. My transrectal biopsy was very unpleasant so I chose the second method for fiducial placement with a local anesthetic. No lingering pain and much less chance of infection or other complication.
You have more than your share to worry about as you go forward but fiducials shouldn't be one of them. They will provide your radiological team with real time feedback on the movement of your prostate while you undergo your treatments so that the radiation can be accurately delivered and minimize potential damage to surrounding tissue and organs.
Best of luck in your journey.
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?0
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