Firmagon (Degarelix) substitute for Lupron

Medcomglen

wayne2 said:

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

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

PSA Rising
Hi Wayne,

Good to see you're painting and keeping busy.

I received another 80mg. Firmagon injection this past Monday, May 16th after having an eight month run of "Beating my chest."

My PSA numbers were below 4. up until just recently ...April 1st came in at 3.5 then jumped to 4.9 on May 5th.

The injection site pain wasn't as bad this time around since I laid down on my back relaxing my six packs.LOL I believe someone on these boards suggested the more relaxed you are the less pain you will endure and this seemes to be key for the sub-Q injection. I do have the raised red patch and a little itching but I don't have the "Mack Truck" feeling this time around.

Wishing you and yours good health.

wayne2

Medcomglen said:

PSA Rising
Hi Wayne,

Good to see you're painting and keeping busy.

I received another 80mg. Firmagon injection this past Monday, May 16th after having an eight month run of "Beating my chest."

My PSA numbers were below 4. up until just recently ...April 1st came in at 3.5 then jumped to 4.9 on May 5th.

The injection site pain wasn't as bad this time around since I laid down on my back relaxing my six packs.LOL I believe someone on these boards suggested the more relaxed you are the less pain you will endure and this seemes to be key for the sub-Q injection. I do have the raised red patch and a little itching but I don't have the "Mack Truck" feeling this time around.

Wishing you and yours good health.

psa rising
Hi Glen......Really good to hear from you :-))I had another shot on May 14th..........and that night a reaction: pain,major flushing,slight fever, no appetite......and it seems like I've had this several times over the last year along with the BIIIIGGG raised red patch. It's gone by morning (not the patch)...whew !! MACK TRUCK??
But with my psa holding at 0.1 I'm still counting my blessings. It's been over a year now. I sure hope your on-again off-again method keeps working for you.

We've had much rain this spring.......and the lake (Norfork) has risen some 28 feet above normal pool and is now about 50,000 acres instead of 27,000 acres.........the fish have a lot more water to hide in.

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

wardyboy

wardyboy said:

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

Update after being away for several months
Hi Guys, thought id check in here after being away for several months. I just finished up 9 weeks of radiation and everything went smoothly. Very few sides effects even though they hit my bladder/rectum, prostate and lymph nodes and whole prostate bed! Im continuing my casodex/degerelix combo. My PSA has remained less than .01 which is great!! However my Degerelix shot yesterday knocked the crap out of me today.VERY tired, achey,and running a fever of about 101.3 currently. This hasnt happened before and im slightly concerned.Im waiting for my Drs. to call back. I suspect that the 9 weeks of rad has left me weak and thats why im having this response.Anyone else have a response like this?? My future holds SRT rad to my L4 lumbar and continued hormone therapy. My Oncologist at Sloan wants me on full time HT for the next 3yrs!!! I was very upset to hear this.I was hoping to do 2yrs and then go on intermittant HT so I can get some mojo back. HT is really starting to show its effects after almost one year, going to need a bra soon!!LOL or is that called a Bro or Manzire!!LOL.Still keepin my spirits up although i do have some down days.I was supposed to go striper fishing today if i didnt have this Dam fever and feel like crap.Taking the whole family to Ireland in early July!! Lookin foward to that! Hope all is going well for my brothers here on this forum. Thanks Wardy

brasildoug

Katman said:

Lupron Vs Degarelix
brasildoug,

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

Lupron vs Degarelix
Thanks Katman. I had my first two Degarelix shots yesterday and today. Knock on wood, no significant pain in shot area. Glad (so far) that I choose Degarelix as my PSA climb significantly since Jan - Jan = 6.7, Feb = 7.1 and as of yesterday 13.2. Looking forward to seeing a zero before the decimal point. I'll talk over with my Oncologist about whether or not I should consider switching over to Lupron. D

Update 5/1/11
My first PSA since starting Degarelix came back at 1.3. Very satisfactory result. Had my first maintenance injection, 80 mg. D.

Update 5/27/2011

Must confess I am very satisfied with Firmagon (Degeralix) so far. My PSA has now dropped to 0.5 and my latest injection was totally pain free.
D

tetech

brasildoug said:

Lupron vs Degarelix
Thanks Katman. I had my first two Degarelix shots yesterday and today. Knock on wood, no significant pain in shot area. Glad (so far) that I choose Degarelix as my PSA climb significantly since Jan - Jan = 6.7, Feb = 7.1 and as of yesterday 13.2. Looking forward to seeing a zero before the decimal point. I'll talk over with my Oncologist about whether or not I should consider switching over to Lupron. D

Update 5/1/11
My first PSA since starting Degarelix came back at 1.3. Very satisfactory result. Had my first maintenance injection, 80 mg. D.

Update 5/27/2011

Must confess I am very satisfied with Firmagon (Degeralix) so far. My PSA has now dropped to 0.5 and my latest injection was totally pain free.
D

Good Injection technique cuts pain
David Emerson mentioned the injections should be "at least a 45 degree angle, and must finish the complete injection before removing the needle". I noticed the Mixing instructions on the powdered drug are very detailed, using a larger bore needle for mixing and a smaller one for injection. A video is at http://www.firmagon.us/us/us-hcp3/pcl-contentsh/accessser/0/252/229/administering-firmagon.html it will be available if you answer yes.
It also says patients should not apply pressure to injection sites.

wayne2

Medcomglen said:

PSA Rising
Hi Wayne,

Good to see you're painting and keeping busy.

I received another 80mg. Firmagon injection this past Monday, May 16th after having an eight month run of "Beating my chest."

My PSA numbers were below 4. up until just recently ...April 1st came in at 3.5 then jumped to 4.9 on May 5th.

The injection site pain wasn't as bad this time around since I laid down on my back relaxing my six packs.LOL I believe someone on these boards suggested the more relaxed you are the less pain you will endure and this seemes to be key for the sub-Q injection. I do have the raised red patch and a little itching but I don't have the "Mack Truck" feeling this time around.

Wishing you and yours good health.

contact
Hi Glen...I can't seem to locate your latest post. I'm having trouble seeing all the latest posts. I hope all is well with you .I'm still at 0.1 psa; another check next month.

Lots of good fishin' now.....I'll write more later.

best wishes and blessings..........Wayne

Determined Laura

tetech said:

Good Injection technique cuts pain
David Emerson mentioned the injections should be "at least a 45 degree angle, and must finish the complete injection before removing the needle". I noticed the Mixing instructions on the powdered drug are very detailed, using a larger bore needle for mixing and a smaller one for injection. A video is at http://www.firmagon.us/us/us-hcp3/pcl-contentsh/accessser/0/252/229/administering-firmagon.html it will be available if you answer yes.
It also says patients should not apply pressure to injection sites.

Firmagon for Granulosa Cell Ovarian Cancer
Hi guys.
I've read this thread and wanted to add my rather unique perspective. I have had granulosa cell ovarian cancer since 2001. Currently fighting my 3rd recurrence. GCT is only 5% of ovarian cancers so there's little research & most of our treatments are "why not" versions of prostate, breast, ovarian or other hormonally-related cancers. I have a brilliant medical advisor who has kept his wife GCT disease free for 7 years using Lupron. He's not an MD or PhD, but is a relentless researcher who never stops until he has answers & puts the puzzle pieces together.

I used Lupron for several months, but had FSH flare after the first shot. FSH is part of the pituatary-hormonal response that causes GCT to rise in normal premenopausal women - and unfortunately does the same thing to rogue GCT cells in post-menopausal & even post-hysterectomy GCT patients. My advisor strongly suggested I try Firmagon because there doesn't seem to be the FSH/LH flare that can happen w/ Lupron causing an increase in granulosa cell tumor activity.

So, I had first Firmagon shot Wed-hurst like hell & is red, sore & some hard areas. However, it's manageable. Agreed Advil helps. Also, icing & hyrdocortisone 1$ or Chilled aloe gel. After 2 insurance doctor reviews, Anthem Blue Cross has denied Firmagon as not clinically proven for me. You guys don't know how lucky you are, even with a nasty cancer. You have so many treatment options; I have almost none. With luck, my FSH will drop from 15 to single digits, then lower. I'll somehow pay for the Firmagon, but will also ask Ferring about their compassionate drug program. Could be a whole new revenue source for them.

It's tough having an orphan cancer that virtually no one's researching. My advisor is absolutley a godsend and may be starting an medical advocacy program. We're all waiting to see if I get the amazing FSH drop that is the equivalent of your PSA drops.

I also love cars & empathize with all of you. I agree, attitude makes a huge difference and no one is going to stop me from being there for my children & husband.

RADIATION HOPEFUL

Kongo said:

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

Best to you.

K

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

Radiation Tretment with Hormone Therapy-Firmagon
Hello Kongo VGama & all wishing to follow my journey

I took the advice of Kongo & posted a site on the Discussion Board with the same title as the subject above. Hope this give some guidance to those interested in my personal treatment decision. Bless everyone involved with this terrible monster.

Cordially
Rad Hopeful

wayne2

Medcomglen said:

PSA Rising
Hi Wayne,

Good to see you're painting and keeping busy.

I received another 80mg. Firmagon injection this past Monday, May 16th after having an eight month run of "Beating my chest."

My PSA numbers were below 4. up until just recently ...April 1st came in at 3.5 then jumped to 4.9 on May 5th.

The injection site pain wasn't as bad this time around since I laid down on my back relaxing my six packs.LOL I believe someone on these boards suggested the more relaxed you are the less pain you will endure and this seemes to be key for the sub-Q injection. I do have the raised red patch and a little itching but I don't have the "Mack Truck" feeling this time around.

Wishing you and yours good health.

CHANGE IN TREATMENT
HI GLEN.....I HOPE YOU CAN GET THIS. MY PSA HAS BEEN ZERO FOR OVER A YEAR NOW. MY UROLOGIST SUGGESTED LAST WEEK TO SWITCH TO INTERMITTENT HORMONE THEREPY.......STILL WITH FIRMAGON. I GOT A SHOT LAST WEEK BUT NO MORE NOW UNTIL I HAVE A PSA CHECK IN OCTOBER............HOORAY !! I'M ENCOURAGED BY YOUR RESULTS DOING A SIMILAR APPROACH.THE GOAL FOR ME IS TO PROLONG THE BENEFITS OF THE HORMONE BEYOND THE PREDICTED TWO TO THREE YEARS.

HOPE YOU ARE WELL AND BLESSED WITH FUN TIMES WITH YOUR DAUGHTER AND THE PUPPY:-))

MY email address is :lesnorman@suddenlink.net

Feel free to drop me a line any time.

wayne

MidwestDad

Determined Laura said:

Firmagon for Granulosa Cell Ovarian Cancer
Hi guys.
I've read this thread and wanted to add my rather unique perspective. I have had granulosa cell ovarian cancer since 2001. Currently fighting my 3rd recurrence. GCT is only 5% of ovarian cancers so there's little research & most of our treatments are "why not" versions of prostate, breast, ovarian or other hormonally-related cancers. I have a brilliant medical advisor who has kept his wife GCT disease free for 7 years using Lupron. He's not an MD or PhD, but is a relentless researcher who never stops until he has answers & puts the puzzle pieces together.

I used Lupron for several months, but had FSH flare after the first shot. FSH is part of the pituatary-hormonal response that causes GCT to rise in normal premenopausal women - and unfortunately does the same thing to rogue GCT cells in post-menopausal & even post-hysterectomy GCT patients. My advisor strongly suggested I try Firmagon because there doesn't seem to be the FSH/LH flare that can happen w/ Lupron causing an increase in granulosa cell tumor activity.

So, I had first Firmagon shot Wed-hurst like hell & is red, sore & some hard areas. However, it's manageable. Agreed Advil helps. Also, icing & hyrdocortisone 1$ or Chilled aloe gel. After 2 insurance doctor reviews, Anthem Blue Cross has denied Firmagon as not clinically proven for me. You guys don't know how lucky you are, even with a nasty cancer. You have so many treatment options; I have almost none. With luck, my FSH will drop from 15 to single digits, then lower. I'll somehow pay for the Firmagon, but will also ask Ferring about their compassionate drug program. Could be a whole new revenue source for them.

It's tough having an orphan cancer that virtually no one's researching. My advisor is absolutley a godsend and may be starting an medical advocacy program. We're all waiting to see if I get the amazing FSH drop that is the equivalent of your PSA drops.

I also love cars & empathize with all of you. I agree, attitude makes a huge difference and no one is going to stop me from being there for my children & husband.

Firmagon in arm instead of stomache?
Been following this post since diagnosis and your attitude and advice have been very encouraging and helpful, despite my not posting yet.

Stats: Age 55; diagnosed January 2011; PCa metasteses to bones; Gleason 8, PSA 29. On monthly Firmagon, PSA dropped steadily to 7 but has now risen to 10.27 and 10.49 past 2 months. Very depressing and discouraging.

Doc has not "pronounced me" Hormone resistant. He mentioned other choices (Casodex, etc.) but will see based on PSA next month. Has anyone had experience with PSA rising and then going back down, or does it sound like I will need a new therapy?

Read about your "Mac truck" pain. I had terrible pain each month which did not lesson with later shots, as others have experienced. One month, nurse offered shot in arm or buttocks instead of stomache and I opted for upper arm. Much, much better. My wife (she is more conservative and not a risk-taker, rule-scoffer like me) was so worried. She called Ferring (manufacturer) and they only recommend shots in stomache because it's the only place tested. Doc said it's the same. Was anyone here offered/tried Firmagon shot anywhere besides stomache? Wife is upset with me, but I am out fewer days with less pain this way.

Thanks for your friendship! Wishing you all a speedy recovery and long life!

jogger

MidwestDad said:

Firmagon in arm instead of stomache?
Been following this post since diagnosis and your attitude and advice have been very encouraging and helpful, despite my not posting yet.

Stats: Age 55; diagnosed January 2011; PCa metasteses to bones; Gleason 8, PSA 29. On monthly Firmagon, PSA dropped steadily to 7 but has now risen to 10.27 and 10.49 past 2 months. Very depressing and discouraging.

Doc has not "pronounced me" Hormone resistant. He mentioned other choices (Casodex, etc.) but will see based on PSA next month. Has anyone had experience with PSA rising and then going back down, or does it sound like I will need a new therapy?

Read about your "Mac truck" pain. I had terrible pain each month which did not lesson with later shots, as others have experienced. One month, nurse offered shot in arm or buttocks instead of stomache and I opted for upper arm. Much, much better. My wife (she is more conservative and not a risk-taker, rule-scoffer like me) was so worried. She called Ferring (manufacturer) and they only recommend shots in stomache because it's the only place tested. Doc said it's the same. Was anyone here offered/tried Firmagon shot anywhere besides stomache? Wife is upset with me, but I am out fewer days with less pain this way.

Thanks for your friendship! Wishing you all a speedy recovery and long life!

I have just completed 16 months of injections which have brought my PSA down from 800 to .5. My doctor has given me a short vacation of two months from the shots, but he has warned that if I go back on the Degarelix, rather than, say, Lupron, I will need to get the two shots as when I started.
Has anyone had the same experience?

Hawk_Shadow

Intermittent therapy

Hello,

I have been taking Firmagon injections since July 2012.

My PSA has dropped from 330 to 4.9.

At what point can I take a break from this drug?

Will sexual desire and function return?

I beleive my testicles have shrunk. Will this reverse?

I haven't asked my Urologist these questions yet.

He had suggested doing one years worth of treatement then visit the idea of a vacation from the drug.

 

My wife is 25 years younger than I and I want my sexuality back.

 

Dave

dw055

Hawk_Shadow said:

Intermittent therapy

Hello,

I have been taking Firmagon injections since July 2012.

My PSA has dropped from 330 to 4.9.

At what point can I take a break from this drug?

Will sexual desire and function return?

I beleive my testicles have shrunk. Will this reverse?

I haven't asked my Urologist these questions yet.

He had suggested doing one years worth of treatement then visit the idea of a vacation from the drug.

 

My wife is 25 years younger than I and I want my sexuality back.

 

Dave

Also on Firmagon

I started posting status after stopping firmagon, at this csn topic: http://csn.cancer.org/node/255429.  I was only on it for 3 months during radiation.

Samsungtech1

dw055 said:

Also on Firmagon

I started posting status after stopping firmagon, at this csn topic: http://csn.cancer.org/node/255429.  I was only on it for 3 months during radiation.

Trleatment

I started getting Deglasix? And casodex in March of 2012.  My last PSA was 0.000.  I have metastic prostate cancer, and hate these shots.  They take me about 14 days to get over.  Pain is bad.  It is keeping me alive so that

 Is a trade off for me.  I think we all hope this will work, for as long as possible, but we know it will not last.  Eventually it will become ineffective towards this.  Hopefully Onc.  Will have another drug for me. Not sure about others, but this really hur St me.  It lasts about 14 dayS.  It gives me freedom to live and travel and helps me enjoy life.  Traveling is good.  Unfortunately am having issues in other areas, but this drug seems to work.

I give it two thumbs up!!!

mike

 

 

 

GeorgeG

Found this older post so

Found this older post so though I would double post in hopes of attracting some perspectives from some with experience that may still be monitoring this thread. Thanks.

PSA 22, RP in October 2016, Gleason 7 (4+3), negative margins, seminal vesicle involvement, negative lymph nodes, PSA did not become undetectable (lowest was 0.3) and then started rising rapidly, doubling every 2 months. Bone scan and pelvic CT scan negative after rising PSA. Decided on salvage radiation therapy along with hormone therapy for 6 months with 2 months of radiation in the middle. Opted for Firmagon to start with my first double shot almost a month ago. Second shot due next week.

I have the option to stick with Firmagon or switch to Lupron for the remaining 5 months of HT. Had new PSA/testosterone blood tests this week and obviously the results might steer the decision. So far on Firmagon:

Injection site pain (manageable)

Hit by a Mack Truck the day after a shot (rough day but then its over) 

Weight gain/excercise intolerance (working on it)

Sweating (manageable)

Fatigue (manageable)

Loss of libido (kind of a riddle because you also don't care as much. :-))

Dizziness (manageable)

Insomnia - Whoa, this is the hardest part. The insomnia started at week three. I have a hard time going to sleep (almost always up until 3AM) and then wake up suddenly 2 - 6 times a night and into the morning. This may also explain the fatigue and getting winded during excercise. Here are my questions:

1) For you other Firmagonians out there, if you had insomnia did it get better or worse in the later months?

2) For those of you that have been on both Firmagon and Lupron (or one of the other agonists), which had the side effects that were easier to tolerate?

 

Thanks,

 

George

MCD54

Medcomglen said:

degarelix/Firmagon injection pain
Hey Carl,

Thanks for your update and I'm sorry you had to go through all that. I seriously think Ferring should emphasize the potential injection site pain scenario more then they do to Medical Professionals but with that said...clinical studies showed only 2% experienced any severe pain apparently. We both fall within that group for sure. I wonder how many others out there have experienced this severe injection site pain?

After I received a press release on Firmagon back in March where I use to work I phoned several major Cancer Centers and not one had even heard of this drug so we should consider ourselves true pioneers.

I look forward to your PSA results if you care to share. I'm getting tested next week so look for my new PSA result post.

Till then, wishing you good health and keep the faith.

Glen

Firmagon initial dosis

Hi Glen,

I hope you´re well and still looking into this forum.

As I have seen you have a lot experience with Firmagon I just wondered if you could please help me with the following:

My husband has an aggressive prostate cancer with metastasis in bone region (L2). Gleason>7  T3, N1 M1 PSA 36.

His docter wants to start hormone therapy immediately tomorrow, but because he has heart problems (arythmias and myocardiopathy, takes sotalol) and is quite weak he thinks it is better to start with 120mg initially of firmagon, not the double dosage of 2 x120mg. My husband usually takes very small dosages of his meds because he reacts immediately to any drug, but I´m not sure if it´s going to work if he has just half the recommended amount? The docters where I live in canary Islands have no experience with this drug hence my concern and worry.

Please could you let me know as soon as possible, I really appreciate your time.

Thank you

Max Former Hodgkins Stage 3

MCD54 said:

Firmagon initial dosis

Hi Glen,

I hope you´re well and still looking into this forum.

As I have seen you have a lot experience with Firmagon I just wondered if you could please help me with the following:

My husband has an aggressive prostate cancer with metastasis in bone region (L2). Gleason>7  T3, N1 M1 PSA 36.

His docter wants to start hormone therapy immediately tomorrow, but because he has heart problems (arythmias and myocardiopathy, takes sotalol) and is quite weak he thinks it is better to start with 120mg initially of firmagon, not the double dosage of 2 x120mg. My husband usually takes very small dosages of his meds because he reacts immediately to any drug, but I´m not sure if it´s going to work if he has just half the recommended amount? The docters where I live in canary Islands have no experience with this drug hence my concern and worry.

Please could you let me know as soon as possible, I really appreciate your time.

Thank you

Thread

MCD54,

Glen was last at this site in 2012.  (You can determine that by clicking on anyone's name.)

The information on this thread is (mostly) extremely outdated now, many years later.

I recommend you start a new "thread" (line of discussion).   Just click "New Topic" at the top and go from there.   Good luck.

max