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Firmagon (Degarelix) substitute for Lupron

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

After discovering this new gonadotropin drug I discussed taking this with my Oncologist and we decided to inject this in a week or two since my PSA doubled from 2.8 to 4.7 this past month.
If you have any experience with Firmagon from Ferring Pharma I would love to hear back on side effects etc. I'm a 58 yr. old two year survivor, 14.7 PSA, Gleason 7 with prominent metastactic disease.
Thanks in advance...

AKFrank
Posts: 9
Joined: Aug 2010

This is my first posting on this board although I've been reading it for the past few months.
I was diagnosed with prostate cancer May of 2007. I chose cryosurgery to deal with the problem. Recovery from the procedure was slow and uncomfortable lasting about 9 weeks before they could remove the pubic cathetor. In hindsight, I wish I had chosen radical surgery.
My PSA was undetectable for about 6 months but then began to rise. My urologist started me on Lupron every 4 months. This worked quite well bringing my PSA down to 0.2 after 5 months. We tried staying off Lupron for 6 months with the thought that perhaps intermittent treatment would prolong the effectiveness. In May 2008, my PSA had risen again to 3.1 so we started it back up again. Once again the PSA went down but this time only to about 0.7. A bone scan was done and showed spots on a couple ribs and also the pubic bone. The doctor started me on Casadex along with continued Lupron injections. By May of 2010 my PSA was up to 5.1 so I was given my first two injections of Firmagon. He continued a one a day Casadex. My next Firmagon was exactly 5 weeks later because of travel scheduling and my PSA had risen to 12.9!!. I was really disappointed because I'd been reading the experience of the men on this board having such great success with Firmagon. Thinking perhaps a mistake had been made, I went to another lab and had a PSA done which was only 3 days later and the reading was 7.2. A drop from 12.9 to 7.2 in three days had me hopeful it was working this time. During those 3 days I had quit taking Casodex as per my doctors instructions. He later changed his mind and put me back on Casodex when his lab results came back showing my testosterone level at 34. I had blood drawn a couple days ago (3 1/2 weeks from the previous one) and my PSA was 12.6 almost unchanged from the last one at his lab. I get my next Firmagon this Friday which will be exactly 4 weeks from the previous one.
I hope this background data isn't too confusing. The question in my mind and am wanting input on from this board is this. Is it possible that Casodex fights the effectiveness of Firmagon? Have any of you had a discussion with your doctor on this subject? I appreciate and look forward to any input.
Frank

retired1
Posts: 11
Joined: Oct 2009

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

Noniu
Posts: 45
Joined: Apr 2010

My father is taken Casodex 2 times per day on a even day and 3 times per day on an odd day and has the Vantas implant for almost 3 years. His PSA was estable for a short period of time. The last PSA level as of last week is 222.2. Now the Oncologist is changing from Casodex to Nizoral 2 tablets twice a day and an steroid twice a day. The Oncologist is trying other medications until insurance agreeds to cover the cost of Provenge.

My dad has an appointment with his Urologist next week and will ask if it's better to try Lupron or Firmagon instead of Vantas. Vantas is convinient and has reduces my father's testetorone to 0, but the PSA continues risen.

AKFrank
Posts: 9
Joined: Aug 2010

Hello Noniu,

I asked my doctor about Vantas and he wasn't very enthusiastic. I got the impression that his clinic hadn't used it much. It's kind of hard to remember everything these doctors say but I think he said that Vantas and Lupron are for lack of a better word of the same family of hormone treatment. Firmagon apparently is different. All things being equal and having had both, I would prefer Lupron being it can be given in a stronger dosage to last 4 months. In your father's case, perhaps Firmagon would be a better choice being his PSA has gone up to 222 on Vantas. It's something to ask his doctor about.

In regard to Provenge, I am not very hopeful that medicare will approve it any time soon. That's just my opinion but at $93,000 for the treatment and only extending life by 4 months, it's understandable. Of course, the study group whose life was only extended on average 4 months were patients who had become resistant to hormone therapy and had already received chemo. In other words, they were pretty far gone. It begs the question, what results would be obtained with earlier stage prostate cancer patients.

Please keep us informed of what the doc recomends and what the results are.

Regards,
Frank

AKFrank
Posts: 9
Joined: Aug 2010

Hello Bob,

Thanks for your response to my post. To answer your question, my doctor started me on Firmagon because my body seemed to be developing an immunity to Lupron. After having worked quite well for the past two years, my PSA had risen from 0.2 to 5.2. Seeing my PSA at 12+ after two treatments, I have to wonder if it is any better for me than Lupron. Your experience of an increase in PSA the first few injections after having been off for a while and then to see it start to go down again gives me encouragement that perhaps Firmagon can work the same way.

I had my third treatment of Firmagon day before yesterday. The soreness in my stomach is a little less than last time and I'm hopeful the reaction each injection will be less. If it works, who cares about the discomfort. I kind of like living.

Looking at your previous posts, I see you had your seed implants in 1998. That's a remarkable amount of time and it looks like the hormone therapy is working well for you. I hope for your continued success.

Yes, I'll post my progress in regard to PSA reduction and whatever else I can share as they develop.

AKFrank
Posts: 9
Joined: Aug 2010

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.
Frank

LeesburgBob
Posts: 2
Joined: Sep 2010

Hi Glen

I have an appointment with my urologist this Thursday. I fill you in on my exerience as soon as I can. Hope all is well with you.

Bob

wardyboy
Posts: 13
Joined: Sep 2010

Hi guys,
Im new to this forum and was diagnosed with PC in mid august. Im a 48 yr old fireman have a wife and three beautiful kids. I originally went to see a urologist for typical BPH type problems (frequent urination and clear discolored ejaculate.I just new deep down that something was wrong.Well,digital exam and PSA (8.4) revealed problems.Had a Biopsey done (ouch)and got the news mid august. 11 of my 12 biopseys tested positive for adenocarcinoma.Gleason score of 10(5+5).My world was rocked.Had lots of tests done in the last month bone scans ct scans MRI with probe,MRI of spine ultrasounds blood tests etc etc.They found stage 4 cancer with a prostate cancer lesion on my bladder and a suspitious lesion on my L4 lumbar that has yet to be confirmed.My urologist immediately put me on HT with degerelix.No major problems yet except for in the bedroom.I now enjoy sensitive chic movies,chocolates,shopping with my wife and just need to be held!!!LOL!!trying to stay positive and have great family and friends who are there for me no matter what.Reading your experiences on this forum is giving me hope for my treatment in managing this crap.I got my foot in the door at Sloan Kimmel center for prostate cancer in NYC.Dr.David Solit (Oncologist/researcher)is going to be asked a lot of questions this monday when I see him.I will keep you guys posted,thanks Wardy

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Kongo
Posts: 1167
Joined: Mar 2010

WOW, Wardy, what a way to get your life rocked. And how many times can you watch "Pretty Woman" or "The Devil Wears Prada" anyway??? Seriously, you seem to have a wonderful attitude for facing this situation and it looks like you've heading someplace where there are a lot of experts to help you. Please keep us posted on your progress.

wardyboy
Posts: 13
Joined: Sep 2010

Heard some good news and bad news at my meeting with my oncologist.The good news PSA went from 8.6 before treatment to 1.13 on 9/15 to .77 as of today(only 28 days of hormone therapy).My testoterone levels are 13 and dropping.The BAD news is that My MRIs showed Extremely advanced PC with new findings on the rectum wall/and lymph nodes.Previous exams showed PC involvement on the bladder and on L4 lumbar.My Oncologist wants to put me on Casodex along with my degerelix but my liver enzymes are elevated and wants to get those numbers down first. He thinks that my PC is causing high enzyme levels.No more red wine with dinner for now dammit. I guess pomegranite juice instead of Merlot!LOL.My Oncologist said some things that really scared me and a few things that give me hope but overall im feeling pretty scared and down,but this pity party wont last long!! I am going to kick the **** out of this cancer and piss on it!!!I am young strong and will be extemely aggressive in my treatment.Diet,exercise, continued hormone therapy, positive attitude,and radiation on the horizon. Oh and dont forget hunting and fishing with my kids and friends!!Thats good therapy too!!! stay well Wardy

wardyboy
Posts: 13
Joined: Sep 2010

I recieved my 2nd shot of Degerelix on Monday. No major discomfort,but have been feeling pretty down the last couple of days.Im wondering if it has to do with the fresh dose or if its just me.Some more results came in from mondays blood test.My testosterone went from 13 up to 17 in 2 weeks time. Is that a significant change?? Im not up om my testosterone info? Thanks Wardy

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

Wardyboy,

After reading your initial post your positive attitude not only uplifted me but probably all the guys on this blog. Personally I was down in the dumps after receiving two Firmagon injections recently after my PSA jumped in two months from 2.7 to 5.9 but your enthusiasm has helped me to stop feeling sorry for my self if you can relate. Sucks when you cry after watching a Lexus commercial.

I think you're probably feeling the normal side effects of chemical castration. HORMONES Just wait till the moobs start growing LOL. Well at least we still have our humor.

You're a breath of fresh air and I look forward to your positive outlook and progress.

I'm not a Doctor but your slight rise in Testosterone isn't signicant. Mine was 68 while maintaining a 1- PSA score for several months.

Good Health<
G

wardyboy
Posts: 13
Joined: Sep 2010

I have to keep positive to fight the good fight. I have a monster of PC to battle.When my Oncologist(who deals only with PC at Sloan),told me that im in the top 1% of most advanced PC that hes dealt with, I cried and im still reeling from it.I have only been dealing with this for 6 weeks and have been through a lot!!!My family,friends and brother Firefighters have rallied around me.The guys in the Firehouse are working my tours for as long as I need !Several of them have called me to let me know that they too are battling PC.My employee assistance counselor for my department has just been diagnosed with PC and wants to partner up with me to share info, support etc .How about that I might be counseling my counsler!!!LOL.I think that my next step is to talk a few oncologists.I dont feel "good" with my current guy. I just feel like another patient.Hes mainly a researcher for Sloan and only sees patients 1 day a week.When I asked about diet and supplements and what "I" can do to make my body as "unfriendly" to this cancer as possible,he didnt offer much.I am going to start researching this next and any recommendations that you guys can give would be appreciated. Thanks Wardy P.S. Nice tractor Glen ! My 56 yr old Farmall tractor is like an old friend,but I drool looking at the new ones!I might be down in your area soon. Going to sneak down to Sanibel Island with my wife for a long weekend for our anniversary.Cant wait to fish and swim in that warm gulf water!! Good therapy for sure!!!

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

Hey Wardyboy,

If it's any consolation my Oncologist said I had two years to live probably and to get my personal affairs in order. That was three and a half years ago. I asked him on the two year anniversary about his prediction and he told me I'm still regulated by hormonal therapy and every patient is a snowflake. Throw the stats out the window and just believe in yourself and that you can control this beast. Sounds like you have a great support team behind you and some on these boards too. I too asked about diet and was told it was too late to change now. My ex-wife has worked in Oncology as an RN for 25 years and always said the ones that make it changed their lifestyle with no stress and a healthy diet. Funny you mentioned Sanibel. Had my Honeymoon at South Seas Plantation. Let me know your plans and maybe we could meet at the Bubble Room for a healthy lunch :-)

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wayne2
Posts: 31
Joined: Apr 2010

Hi Glen.....I've missed you. Your blogs really give me a good uplift. I've read wardyboy's input and really feel for him......As for me, I'm growing boobs too.........I get my eighth shot of FIRMAGON in about ten days along with a psa check. I also get these mind attacks once in a while...........WHEW !!.....NOT FUN STUFF.......but all in all I keep counting blessings and try to give back some of what I've been given............Fishing is still great, but the catchin' is lacking right now, but time on the water with friends is precious.

Wardyboy..........hang in there. I've read some info on the Mayo Clinic website about hormone treatments that is really positive. And we'll all keep praying. Thanks for sharing at the gut level......and

.....PEACE TO YOU ALL..........wayne2

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

Hi Wayne,

Thank you for your kind words to me and to Wardyboy. Hopefully Firmagon will keep Wardyboy's PSA in check... I've been on a roller coaster of emotions, aches, muscle pains and such after my back to back Firmagon injections in August and September but I'm doing better every day. At least my PSA dropped down to castrate levels. I don't know how you manage with continuous month to month injections. I did notice after my second injection that I experienced the same terrible exhaustion as I had before while taking Lupron so it may not be the difference in drugs but severe hormonal changes. Yes, the Moobs started growing again. My daughter said she'd loan me one of her bras but she's much bigger then I am thank the Lord. I was getting to look like my old self prior to the first injection but I'll accept the trade off. PSA will be checked again Thursday so I'll decide to have one last injection before my Cobra insurance runs out. After that I don't know what I'm going to do to pay for future injections since out of pocket is around $2,000. Hope for the best and keep on fishing :-)

sig2007
Posts: 1
Joined: Oct 2010

Hi all,
New to this site. Does anyone know if firmagon can be used after having a radical prostatectomy and radiation, and if yes, what their experience was? My PSA is getting higher and in the last 2 weeks has gone from 3.8 to 4.73...starting to go fast! Thanks

wayne2's picture
wayne2
Posts: 31
Joined: Apr 2010

Sure enjoyed your last note..........as usual. Yep, I think I'm up to a 36D............and get the "sleepys" a lot around noonish............good solid naps :-)).......but, staying active helps with my mental salvation .....reduces the number of brain farts experienced.
I get my seventh month injection of the Firmagon tomorrow. Had my psa checked this week...........still at 0.10......same as July.......so far so good..........hope I can stay awake long enough to finish this note........it's going on 9 pm :-).....this is all better than the alternative..............your two year "notice" to an actual 3-1/2 years SO FAR IS GREAT NEWS !!.......and you're still going STRONG !!

Comment re your $ concern: I've heard of some drug companies helping with the costs of some higher cost drugs. Firmagon is made by Ferring Pharmaceutical (looked it up)......maybe it's worth a shot contacting them..........or the urologist doing it or health center or ??

I'll get back to you after my visit to the urologist tomorrow........and fishing is still great, but the catching is tuff right now, but beautiful out on the water :-))

Royalbert
Posts: 5
Joined: Sep 2010

Here in France I have just had my double whammy 240ml shot. Its all free on the health system but on the box it says it would cost 400 euros if I were outside the system. This will be followed by a single shot every month until my next blood test in 5 months time.
My PSA had got to 17 but the urologist said that was nothing to worry about as long as Firmagon brings it down again which he is convinced it will.
I have been on various tablets since 2005 and Firmagon is currently being lauded as the latest wonder drug, so lets hope so.

After the injection I had 3 days of discomfort and went up 3 belt notches but very quickly everything came back to normal.

PA_grandma
Posts: 48
Joined: Oct 2010

October 20, 2010 - 7:01am
Firmagon pain
This is my first post as caregiver to my husband, John.
Didn't plan on participating until final test results of lymph node biopsy... but in reading about Firmagon, I couldn't wait.

Some information
79 years old
Gleason score (4+5) 9
Stage 3 or 4 depending on lymph results
Bone scan, no involvement

My question is...I've been reading about pain after injections of Firmagon, which he had late yesterday afternoon. At the moment, he's still asleep, but if he's in pain may I give him one of my pills 'Hydrocodone' (which I got after my dental implant.. but didn't need)

He's supposed to avoid blood thinners because of his pending biopsy... and don't know if this would fall in that category. Hope someone can respond before he wakes...
Thanks,
Joyce

p.s. posted incorrectly, it's somewhere in with March 25th messages, so I copied and pasted again... just a newbie

p.p.s. just read up about the drug... tell your doctor...prostatic hypertrophy, urethral stricture etc. This pill is not for him, plus he just got up NO PAIN,
Thanks anyway.

Royalbert
Posts: 5
Joined: Sep 2010

After my jabs it was not exactly pain but a kind of painful discomfort with bending and twisting especially on the belt line which lasted almost three days then....all gone.

I would not have thought traditional pain killers would have been much use anyway as the pain was not muscular but it seems he did not need them anyway.

Good luck with everything

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

Hi Royalalbert,

My Oncologist prescribed POPOXYPHEN-apap (DARVOCET) which I took before and after my Firmagon injections. This did seem to lesson the stomach pain along with PREDNISOLONE which reduced swelling when compared to my previous injections. Again, my injection site pain was still present but my waist didn't swell as had before.

The PSA was checked last week with wonderful news of 06.91. drawn on October 18th. I plan on having another injection when my PSA rises again over 4.-5. I may have to start learning French so I can afford future Firmagon injections. Mmmm Blackmarket Firmagon? Just joking.

Wishing you the best,
Glen

Royalbert
Posts: 5
Joined: Sep 2010

Hi Glen
Funny you should mention Black Market Firmagon.
When I got my first shots the prescription was for 2 injections. The Pharmacist who had not heard of Firmagon gave me 2 boxes. When I opened them, each box had 2 shots in them. As I wouldn't have used the 2nd box I took it back a month later. He hadn't realised or even missed the 2nd box.

Had my second shot now with no after effects except belt-line discomfort and slight swelling.
Because its all free in France I am disappointed it only costs 170 euros per shot. I feel that if it were more expensive it would work better and that I am getting something out of the system!

Mind you, if I had to pay I would be sticking with Casodex, Pomegranate juice and prayer.

The american postings seem to have much more info about their disease than I ever get. My Oncologist is French and although I can't understand half what he says all I ever get is a PSA result and a gallic shrug. No Gleason scale,no testosterone scores,just PSA.

Perhaps he works on the notion The less they know,the less they worry.

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

Thank you for the laughs. Possibly French Doctors keep information to a minimum since it's socialized medicine and would be too costly for further explanation. Just a guess:-)I just posted this under a new discussion...Great news from Ferring...

"I contacted the Ferring Pharmaceutical Company that manufactures Firmagon(degarelix) last month regarding if they had a compassionate drug program. My Cobra Insurance was ending 10/31/10 and affording Firmagon as an out of pocket expense would be a severe financial burden. I was informed Ferring did not have a compassionate drug program for Firmagon in place but they would check on my situation and let me know.

To my surprise I received a phone call from a Ferring representative today asking for my Oncologists address so they could mail 3-4 injections for free for my future injections.

I would like to publicly convey a sincere thank you to all of the Ferring Pharmaceutical company employees that contributed to this compassionate decision.

Sincerely,
Glen M."

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

Thank you for the laughs regararding French Doctors. Possibly French Doctors keep patient information to a minimum since it's socialized medicine and would be too costly for detailed medical explanations. Just a guess:-) I just posted this under a new discussion...Great news for me from from Ferring...

"I contacted the Ferring Pharmaceutical Company that manufactures Firmagon(degarelix) last month regarding if they had a compassionate drug program. My Cobra Insurance was ending 10/31/10 and affording Firmagon as an out of pocket expense would be a severe financial burden. I was informed Ferring did not have a compassionate drug program for Firmagon in place but they would check on my situation and let me know.

To my surprise I received a phone call from a Ferring representative today asking for my Oncologists address so they could mail 3-4 injections for free for my future injections.

I would like to publicly convey a sincere thank you to all of the Ferring Pharmaceutical company employees that contributed to this compassionate decision.

Sincerely,
Glen M."

wayne2's picture
wayne2
Posts: 31
Joined: Apr 2010

WHEW...............psa is still 0.1...............But the last two injections have been VERY PAINFUL.Had another one today; taking tylenol...................but still better than the alternative.

I'm happy for you, Glen regarding the company send someeds your way.............HOORAY AND CELEBRATIONS. !!

Any ideas re pain? I'm gonna go lay down and read...........BUT !!!I DID FISH FOR TWO HOURS AFTER MY INJECTION TODAY..........GOT TWO NICE BASS........PUT 'EM BACK.....................Then the pain hit me...................but I am blessed!!

good wishes and prayers to all..................Les N.

bobmack
Posts: 1
Joined: Oct 2010

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 ?

blm50
Posts: 1
Joined: May 2009

In 2004 my husband had a radical prostatectomy. Still, his PSA never went to 0.0 and after four years of very, very slow increases he then had 42 radiation treatments. The radiation treatments also did not bring his PSA to 0.0. Finally, in June he stared on Firmagon and his August PSA was 0.1. HOORRAAYY! He's sheduled for a PSA again this month and I hope it will either be the same or finally 0.0. He is having soreness at the injection site after each injection. His hot flashes and mine coincide which is quite amusing to some people. He is 70, is on medication for high blood pressure and his heart, works out three times a week at the local gym and all in all is in realtively good health. We eat a little stangely because I have Graves Disease and Celiac Disease which cause us to eat more fruits and vegetables, gluten free everything (he still eats cookies and other goodies at times, and we seem to feel better.

retired1
Posts: 11
Joined: Oct 2009

It is my understanding that they cannot measure down to 0.0 if he is at 0.1 we all would take that in a minute.

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

Hi bobmack,

Good to hear you are a six year survivor and still going strong. I can relate about the back to back injections of hormone therapy and Firmagon. Had two injections back in August and September and I was really hit with exhaustion and weight gain. 5'-4" 165 lbs. Use to be 150 lbs. By the way, I noticed there is a Newsletter for noscapine. Are you a subscriber? If not here's the link to copy and paste or click on it. Sounds interesting since it use to be a cough syrup.

http://pcref.org/mailing/?p=subscribe&id=1

Here's a recent study too:
http://www.upi.com/Science_News/2010/03/23/Noscapine-use-for-prostate-cancer-studied/UPI-40241269377522/

Good luck with your next Firmagon injection. If it's in your spine you probably should remain on a monthly schedule and hopefully the "Doctor will see you now" :-) What other herbal supplements are you taking for your Prostate?

Best of health in the meantime.

wayne2's picture
wayne2
Posts: 31
Joined: Apr 2010

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

Katman
Posts: 6
Joined: Jun 2010

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.

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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 :-)

Katman
Posts: 6
Joined: Jun 2010

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.

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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!

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wayne2
Posts: 31
Joined: Apr 2010

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.............wayne

VascodaGama's picture
VascodaGama
Posts: 1590
Joined: Nov 2010

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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,
Glen

jogger
Posts: 47
Joined: Nov 2009

Where do you apply the capcaicin?

wardyboy
Posts: 13
Joined: Sep 2010

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

VascodaGama's picture
VascodaGama
Posts: 1590
Joined: Nov 2010

Wardyboy,
Congratulations on your lower PSA. Great news. Surely it goes to the zeros you say.

jogger
Posts: 47
Joined: Nov 2009

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.

AKFrank
Posts: 9
Joined: Aug 2010

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

VascodaGama's picture
VascodaGama
Posts: 1590
Joined: Nov 2010

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

AKFrank
Posts: 9
Joined: Aug 2010

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

mrspjd
Posts: 693
Joined: Apr 2010

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

AKFrank
Posts: 9
Joined: Aug 2010

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

wardyboy
Posts: 13
Joined: Sep 2010

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

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