Firmagon: Would like to know if anyone... - Advanced Prostate...

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Firmagon

billy1950 profile image
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Would like to know if anyone had hormone therapy (firmagon) injected other than in stomach…last time it was uncomfortable…Thanks

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billy1950
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67 Replies
JohnInTheMiddle profile image
JohnInTheMiddle

Hi Billy - here are a few of my notes on Firmagon.

I have been on Firmagon for over 2 years on doublet therapy for metastatic PCa. Doing quite well. Rejected the promoted switch to Lupron/Eligard "for convenience". I get my injections on my "love handles", in other words the fat on the sides between hip and rib cage.

Also as you'll see on my notes, the question of the competency and skill of the nurse is very important. I have been able to arrange to have a nurse come to my home every 28 days and he is very skilled and I don't have problems.

In the following notes you can ignore extraneous topics such as orchiectomy.

FIRMAGON

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billy1950 profile image
billy1950 in reply toJohnInTheMiddle

Hi John,

There are a lot of posts…I’ve read many of them and appreciate the different experiences…I will be mentioning some of this to my doc…Thanks! Billy

GP24 profile image
GP24

It is not injected into the stomach but the belly.

billy1950 profile image
billy1950 in reply toGP24

what’s the difference btw “belly” and “stomach”…🙂

JohnInTheMiddle profile image
JohnInTheMiddle in reply toGP24

You're correct, it's injected in the belly fat - and if the injection is sloppy and the muscle is involved then it can be very painful. It can be injected in the side handle fat too if one has them.

ulfhbg profile image
ulfhbg

Hi !

Firmagon is a subcutaneous injection so you put it as a ’’depot’ under the skin to release it slowly.

Best wishes - Ulf

billy1950 profile image
billy1950 in reply toulfhbg

Thanks, Ulf….

RyderLake2 profile image
RyderLake2

Hello,

I took Degarelix (Firmagon) for a year. Surely this has to be the most unfortunate name for a drug that causes chemical castration that anyone has ever dreamed up . At the Agency that I go to it is affectionately referred to as “Firm Is Gone”! Anyway, to answer your question, I always received my injection in my belly. Never anywhere else.

There is a method of giving Firmagon that reduces the injection site soreness and swelling. It has to do with the angle of the needle. Be sure to have it done by a medical professional who knows what they are doing. I no longer take it because of the frequency of injections (once a month). It was driving my family doctor and me crazy! Back on Zoladex or Goserelin (once every three months).

billy1950 profile image
billy1950 in reply toRyderLake2

Ryder, Thanks for your experience,

Concerned-wife profile image
Concerned-wife in reply toRyderLake2

I recall being totally appalled by the insensitivity of the name when my husband started this journey…I said such to the oncologist, who , although being the nicest person, acknowledged this hadn’t dawned on him.

j-o-h-n profile image
j-o-h-n in reply toConcerned-wife

A rose by any other name would prick as much.

Good Luck, Good Health and Good Humor.

j-o-h-n

Brianne07 profile image
Brianne07

Hi Billy I inject my self and have a medical background.I hate the injection but i do it!! Important to grab plenty of fat tissue once i pierce the skin on a 45 degree angle i draw back on the needle to see if any blood then very very slowly inject when completed i draw the needle out very very slowly. i try to always inject late afternoon after activities or work and make sure i have the following day off as i usually sleep off and on all day. Usually day 3 back to normal.One has to remember it is a foreign body entering the system .Always red and a little sore for a few days.Best wishes Brian

billy1950 profile image
billy1950 in reply toBrianne07

Make a lot of sense…Thanks, Brian!

wilcoxsaw profile image
wilcoxsaw

Terrible injection site reactions, switched to Orgovyx, no pain no 30 day injection visits. Never doing firmagon again.

ulfhbg profile image
ulfhbg in reply towilcoxsaw

Hi !

I did the same because my reactions got worse over time with Firmagon so switched to Orgovyx after 6 months and also it’s easier to have the control myself with pills instead of injections.

But to be clear, Firmagon did it’s job for me and was a good ADT.

Best wishes - Ulf

wilcoxsaw profile image
wilcoxsaw in reply toulfhbg

A rad onc that has treated thousands of patients said he's seen abdominal wall perforations caused by injection site damage over time from firmagon. Drug works, but no better than orgovyx.

ulfhbg profile image
ulfhbg in reply towilcoxsaw

Hi !

No argument from me because I’m also on Orgovyx now and for me it’s much better because now I handle all medications all by myself and for me it’s very practical

Best wishes - Ulf

BigglesOz profile image
BigglesOz

The sheet of bumph that comes in the Firmagon box has enough info to enable you to do it for yourself. As mentioned, angle is critical to avoid hitting the muscle layer. I taught myself simply because it was more convenient and free. You only need to hit the muscle a couple of times and the technique will perfect itself.

London441 profile image
London441

Lupron or Eligard (same drug) are typically every 90 day injections and almost never have the very common site pain and swelling issues that Firmagon does. It certainly was no problem for me.

Their action is identical to Firmagon except they are a different type of drug (LHRH agonist vs antagonist) achieving the same goal of testosterone suppression.

There is a lot of prattle about LHRH antagonists (such as Firmagon) being safer for the heart than LHRH agonists (like Lupron) but the claims are dubious and there are much more important and effective heart protective considerations anyway, particularly exercise, caloric restriction ,and the use of statins if required.

Of course, Orgovyx is best of all if you can get it, since it is taken orally and is a LHRH antagonist to boot- if that’s what you prefer. It also leaves the body much faster than injectables upon cessation, which is quite valuable should you ever stop for any reason.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toLondon441

Okay on one hand you dismiss comparisons between ADT GnRH agonists versus antagonists, but then on the other hand you don't mention the significant risk with Orgovyx (Relugolix) pills of testosterone flare because of how fast the med is metabolized. You can't miss a day and even your daily pill timing is very important.

London441 profile image
London441 in reply toJohnInTheMiddle

No sir you are correct, missing days of this drug is absolutely no good. I know some men have doubts about their ability to take it consistently, but imo if its importance is well understood there shouldn’t be a problem. If it is then by all means the oral route isn’t a good option.

billy1950 profile image
billy1950

Thanks to all,

I tried Orgovyx which caused some heart pain…i would prefer a pill over an injection. I had firmagon over a year ago and may have to go back on it…I appreciate your responses…

rick8637 profile image
rick8637 in reply tobilly1950

My experience goes like this. I recieved a double shot of firmagon as a start delivered in the belly. It burned like crazy , made a lump and pain lasted 2 weeks. I was angry at this brutality and searched out Orgovix pills. Yes , painless , no hospital visits and worked pretty good for 2 yrs BUT , it never really got down T down below 20. At my last visit , T elevated to 30 so MO decided to jump ship and go to a 3 month eligard which is administered similar to firmagon. I was reluctant but following Drs orders I took the shot. By golly it only burned for a couple minutes , very little pain and totally gone in24 hrs. I hand it to the nurse that had the skill to give the shot properly. Hope it drops my T!!!

billy1950 profile image
billy1950 in reply torick8637

how are you doing on Nubeqa ? Thanks for your response?

rick8637 profile image
rick8637 in reply tobilly1950

I was taking nubeqa but psa was rising . now switching to back to xtandi.. docetaxel probably my next move.

Bill2005 profile image
Bill2005

I've had it injected into my arms with little to no side effects. I previously would get very painful reactions when injected into my belly fat.

billy1950 profile image
billy1950 in reply toBill2005

Bill, this is the first that i heard it injected in the arms…

Is there any reasons why in arms and not belly?

turkeyjoe1 profile image
turkeyjoe1

I had 2 shots in the belly when I was first dx. Flu systems for 4 days, 3 weeks very sore belly. No more

Mbnm profile image
Mbnm

I take Lupron injections quarterly..initially in the bum cheek which could be uncomfotsble…recently switched to arm injection just like a flu shot apparently as effective and I would recommend the arm

Either way no significant after affect problems other than with erection difficulty

billy1950 profile image
billy1950 in reply toMbnm

Mb, I read your profile. Looks like you have more than Lupron…Was heart health any concern ? Are you having any SEs ?

Mbnm profile image
Mbnm in reply tobilly1950

sorry yes abiraterone and predisone every day plus the lupron every 3 months…have to monitor blood pressure and take ramapril ..sleep issues..so far PSA and T testing under one…I am age 84. My wife a very young 75 ..hoping to be here till she is 80

billy1950 profile image
billy1950 in reply toMbnm

The best of health for you both…

ARIES29 profile image
ARIES29

Hi Billy, I had Firmagon injections in belly for around 6 months & I think the nurses at hospital were sick of me going there but it was the best ADT I tried with less SE.

Lately on Zoladex with Nubeqa & PSA down to 1.1 but had to give up Nubeqa due to bad leg pain & sleepless nights.

All the best to you in this trip nobody wants to be on.

billy1950 profile image
billy1950 in reply toARIES29

ARIES, Sounds like it was good…which was not true for everyone….Thanks, for your response…I have intraductal in some of the biopsied cores! Not sure what further treatments hold for me…this was a BCR since i was first treated with EBRT in 2004-5.

The best to you as well…

RR51 profile image
RR51 in reply tobilly1950

Hi! Just curious what your oncologist has said about the intraductal carcinoma, as far as treatment, outlook, etc. My husband was diagnosed a year ago and has Gleason 8 and intraductal carcinoma in several cores.

billy1950 profile image
billy1950 in reply toRR51

No oncologist who i have consulted is that concerned about it. It seems to be just an unknown…However, reading articles, etc on youtube they talk about it as aggressive cancer. In my situation i was treated with EBRT in 2004-5 (20 yrs ago)…No biopsy was done afterwards. It can’t be determined when or how it came about when in 2021 i had a BCR (biochemical recurrence). That is when it showed up in a biopsy with different gleason scores in different cores.

Has he had any treatment? I have seen from others on here about doctors not knowing the best treatment for it…Has he had a PSMA to determine if there are any signs of cancer anywhere in his body other than his prostate?

billy1950 profile image
billy1950 in reply toRR51

I read his profile…Memorial sloan kettering also suggested HD brachytherapy in 2021 but due to prior EBRT ( radiation), i decided not to have the brachytherapy…Because it would be further radiation…Possibly affecting other organs, etc… Curious about your husband’s circumstances.

billy1950 profile image
billy1950 in reply toRR51

RR51,

I haven’t heard back yet…

Billy

RR51 profile image
RR51 in reply tobilly1950

We have basically been told that intraductal carcinoma is a variant of adenocarcinoma and is not a good sign. We haven’t been given a lot of detail on it other than, statistically, intraductal makes it a more aggressive cancer, requiring very aggressive treatment. For my husband’s high-risk disease, we were told that the best treatment available was “Trimodal Therapy” which consists of (1) Androgen Deprivation Therapy, (2) External Beam Radiation and (3) Brachytherapy. (They said this would be the treatment for him whether or not he had intraductal). He’s been taking Firmagon shots for almost a year now. In February, his medical oncologist recommended that he start taking abiraterone (Zytiga) because of his high-risk case. (Note: his Decipher Score is .98) As you read in his profile, he had 5 weeks of EBRT in Jan/Feb ’24 followed by HD Brachytherapy in mid-March. First, he was told that he was not a good candidate for Brachytherapy because of large prostate size and a high IPSS score (measures urinary symptoms), both of which are not conducive to having Brachy. But after the EBRT, his prostate size decreased, as did his IPSS score, making him eligible to have the Brachy. He was given HD, as opposed to LD, because an MRI and a PSMA scan showed possible seminal vesicle invasion. With HD Brachy, you can more easily place the seeds in the seminal vesicles.

billy1950 profile image
billy1950

I was concerned since i had radiation EBRT (20 years ago)…and having HD brachytherapy would have been more radiation…There is scarring from radiation…There are both acute as well as long-term side effects to radiation…Has he had any side effects?

RR51 profile image
RR51

Yes, he went into urinary retention after HD Brachy. He had a Foley catheter for about 4-5 weeks. Then he went to self-catheterization for maybe another month or so. Then he started urinating some on his own. Gradually he was able to stop the self-catheterization. He still experiences urinary frequency and urgency which is bothersome. He had many urinary issues even before being diagnosed, so it was not surprising that these issues got a bit worse. But we were told that the Brachy would increase his cure rate, and so he chose to go with it, being aware of the potential urinary side effects.

Seasid profile image
Seasid

I am just wondering what do you think about castration? Would it be better than ADT injections?

billy1950 profile image
billy1950 in reply toSeasid

I have heard that you may still need to have hormone chemicals after being surgically castrated…were you castrated?

Seasid profile image
Seasid in reply tobilly1950

Are you still curable? Do you have metastasis and where?

Seasid profile image
Seasid

I am considering full Orchiectomy. I am not curable, polymetastatic with distant metastasis in my neck etc. If you are potentially curable than just stay on firmagon. I am not a doctor. You didn't have intermittent ADT?

Seasid profile image
Seasid in reply toSeasid

I am not curable therefore I believe for my situation full castration is the best treatment.

Seasid profile image
Seasid in reply toSeasid

Q. What is a more effective cancer treatment? Full or subcapsular orchiectomy?

A. The effectiveness of full orchiectomy versus subcapsular orchiectomy in treating prostate cancer primarily depends on the goals of treatment and the individual patient's situation. Here are some key points to consider:

Full Orchiectomy

1. Complete Hormonal Suppression: Full orchiectomy provides total and immediate removal of testosterone production, leading to more effective hormonal control of prostate cancer, particularly in advanced or metastatic cases. This can result in a more significant reduction in PSA levels and potentially slower cancer progression.

2. Long-Term Outcomes: Studies generally indicate that full orchiectomy can lead to improved long-term outcomes in terms of cancer control compared to subcapsular orchiectomy. Patients may experience a lower risk of cancer progression and improved survival rates.

3. Simplicity in Management: The definitive nature of a full orchiectomy eliminates the need for ongoing hormone therapy, making it a straightforward option in terms of management and follow-up.

Subcapsular Orchiectomy

1. Less Invasive: This procedure is less invasive than a full orchiectomy and may have a shorter recovery time. It is sometimes preferred by patients who want to avoid the psychological and physical impacts of complete castration.

2. Preservation of Scrotal Appearance: For some patients, maintaining the scrotal structure may be a consideration, as subcapsular orchiectomy leaves the outer capsule intact.

3. Potential for Testosterone Levels: Some testosterone production may still occur after subcapsular orchiectomy, which can be beneficial for patients who wish to maintain some hormonal function. However, this may also limit the effectiveness in controlling prostate cancer in some cases.

Conclusion

In summary, full orchiectomy is generally considered more effective for achieving complete hormonal control over prostate cancer, especially in advanced cases. Subcapsular orchiectomy may be appropriate for patients who desire a less invasive option or want to preserve some hormonal function, but it might not provide the same level of cancer control.

Ultimately, the choice between these two procedures should be made in consultation with a healthcare provider, considering the specific circumstances of the cancer, the patient's overall health, preferences, and treatment goals.

ChatGPT said.

Seasid profile image
Seasid

You can in theory inject it anywhere you have fat tissue and you are not sitting on it or having a belt etc. I had my first big double 240 mg degarelix ADT injections in my bottom part under the belt where you are not sitting directly.

billy1950 profile image
billy1950 in reply toSeasid

I have an aggressive form of cancer intraductal which was found in a biopsy done on 2021…as salvage treatment i was offered HD brachytherapy which would have been more radiation…I didn’t like having the possible SEs…I had EBRT in 2004-5 ( 20 years ago)…Didn’t want cryotherapy either…So, it isn’t curable and may not have been with these two salvage treatments and could have had some SEs for the last 3 years…

In 2022-2023 I had 6 months of firmagon and got some man boobs, no hot flashes and some “down feelings”…Was seeing a (hospital) psychologist who specialize in cancer patients…I still occasionally masturbated…No partner!

Also had two PSMAs and neither of them showed any cancer outside the prostate where there is a lesion…which of course is growing…so my oncologist is holding off at this point- next psa in January.

Thanks for the outline detailing the different options for ochiectomy…If you have a full “O” what will it do for being metastatic ..…what if you get bone metastasis?

Seasid profile image
Seasid in reply tobilly1950

Therefore you have a none metastatic prostate cancer and you are eligible for nubeqa (darolutamide). You should get it as soon as possible because your CRPC could spread (metastasize) out of your prostate and that is the last thing what we want. I am not a doctor but you may be still curable. Contact a radiation oncologist.

Even if you are potentially curable it doesn't mean that you will regain your testosterone fully. I believe TA has some statistics about it in his blog.

billy1950 profile image
billy1950 in reply toSeasid

I am going to see my radiation oncologist in January…i realize that there are options..He probably will refer me to a Medical Oncologist. There is also Xtandi. The problem with some of this ADT is that he has effected my heart rhythms ( I have atrial fibrillation)…I tried one o orgovyx which is a pill and i couldn’t continue…

Seasid profile image
Seasid in reply tobilly1950

You could maybe get enzalutamide monoterapy but then don't castrate yourself in order to be potentially effective. I am really not a doctor and I can't recommend anything for sure. You should find a competent cardiologist.

petrig profile image
petrig

I have had 18 Firmagon injections and always felt uncomfortable few days .After latest injection in december 2024 biggest skin reaction,"rash"/urticaria . I asked my doctor to call me (10.1.2025) .Im going to ask him to change Firmagon to new drug Orgovyx. Same antagonist but easier to take oral at home. If you dont like to have injection every month maybe you should ask your doctor to change Firmagon(or Lupron) to Orgovyx.

Bill2005 profile image
Bill2005 in reply topetrig

I finally switched from firmagon to daily orgovyx pill due to same reactions to shots.

billy1950 profile image
billy1950 in reply toBill2005

Bill,

i tried orgovyx and it affected my heart ( i have afib). My oncologist said it wasn’t the orgovyx but i felt fine after i stopped…

billy1950

Bill2005 profile image
Bill2005 in reply tobilly1950

I had also convinced my doctor to have the nurse give me the firmagon shot in my arms. This is not the recommended place due to volume of shot but I did have fewer side effects when they were in the arms and my psa stayed as low as when they were in stomach.

billy1950 profile image
billy1950 in reply toBill2005

Billy, You are the first that i have heard with taking the shots the arm…are you doing any kind of exercising ?Sounds like you are hormone sensitive since you do well with ADT…are you experiencing any side effects?

Bill2005 profile image
Bill2005 in reply tobilly1950

Yes, still hormone sensitive for 15 years. At least using the arms for firmagon shots I didn't get the nasty painful lumps from the shots. Exercise a lot (pickleball - lost like 35lbs). Few side effects with the orgovyx. Maybe some slight fatigue and mild mental foggyness (forget the pickleball scores at times).

billy1950 profile image
billy1950 in reply topetrig

hi pet,

saw 10.1.25 and knew it wasn’t in USA…I have tried Orgovyx and it seemed to have affected my heart…i have afib…doc said it wasn’t that but i felt fine after i stopped…will possibly need to take something in the near future…PSA and appointment with my onc.isthis month! How are you doing on triple treatment? Were you diagnosed with metastatic cancer at first in 2023?

Thanks,

billy1950

petrig profile image
petrig in reply tobilly1950

I was diagnosed in august 2023 isup5 ,gleason 9 agressive cancer.Lots of bone metastases and metastases in lymf nodes. I was lot of pain and lost my weight 15kg in few months.Was very,very tired. I took pain killers . My wife was so afraid so she is the reason I went to a doctor. Psa was 2500. Firmagon injection asap and started doocetaxel x 6in november .Nubeqa in january 2024.In august 2024 my psa was 0,4 Now I feel great. No pain and weight went up 20 kg. Next psa test next month and doctor in march.

billy1950 profile image
billy1950 in reply topetrig

pet,

Were there any symptoms, etc. before August 2023….You say no pain now…are there any side effects to the medications?

petrig profile image
petrig in reply tobilly1950

Yes. A lot of pain(leg,lower back,"strange pain"..),weight los (15 kg in few monts.I was very tired,exhausted..)I though it was rheumatic pain..Side effects :fat much more ,finger stiffnes(litle pain).When testosterone is gone,sexuality is gone.Energy loss (when biking,hiking etc.).But I am very happy psa is only 0,something and I have no pain.So I feel good. Bad jokes to my wife and so on..

petrig profile image
petrig in reply topetrig

Pain was before august 2023 when diagnosed and Firmagon shots..

billy1950 profile image
billy1950 in reply topetrig

I was diagnosed in 2004…20 years ago and treated with EBRT…there was no problem until 2021 with having a biopsy and MRI. I had firmagon a couple of years ago and may need to take some form of ADT again. Thus my questions about Firmagon…You aren’t in any pain though are you taking anything now for treatment?

petrig profile image
petrig

I take Nubeqa(very good) and Firmagon. Going ,this,friday, to ask my doctor to change Firmagon to Orgovyx.Its easier to take at home(pill).Dont need to take any painkillers.

billy1950 profile image
billy1950 in reply topetrig

Sounds you are on top of this…

petrig profile image
petrig

If you are going to adt treatment.In my opinion you should ask Orgovyx.Its new adt and better than lupron and easier than Firmagon.

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