FIRMAGON INJECTION SITE

HI JOEL MY PSA NOW ON XTANDI IS .7 HEADACHES GONE I AM ON LUPRON IM ONCE A MONTH BUT THAT WAS NOT WORKING HOLDING THE PSA DOWN CAN WE SWITCH OVER TO FIRMAGON (DEGARELIX) THERE ARE REPORTS IT COULD FURTHER LOWER PSA WHEN LUPRON DOES NOT PLUS THERE IS LESS INCIDENCES OF HEART ATTACKS HOWEVER I AM CONCERNED ABOUT THE SIDE EFFECT AT THE INJECTION SITE IN THE ABDOMEN SUB CUTANEOUSLY PAIN WHAT HAVE YOU HEARD ABOUT THAT WOULD THAT AFFECT YOUR SLEEP IF YOU SLEEP ON YOUR SIDE TAKE CARE FRANK

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  • Hi Joel

    I've been on Degarelix for almost 3 years. Injection site pain for a few days (and feeling off) initially but managed with panadeine forte (2 initially and maybe another 2 next morning if feeling off). Just learn to sleep on your other side for a night or two. Couple of things my GP and I discovered...slow injection of fluid seems to lesson initial effects. I lost 20 kg (put on weight with meds) and found my recovery from injection was much quicker. Now I just take 2 regular Panadol (the forte constipated me) and generally a day and I'm over it. Good luck.

  • Degarelix did not work for me. The pain at the injection site disrupted my sleep seriously almost until the second injection, and it was almost as bad. Since PSA continued to rise we immediately resumed Lupron. Lupron controls the testosterone, but not PSA.

  • 1. Do you think your testosterone would bounce back if you stopped the Lupron?

    2. you are CRPC then? and metastatic?

    3. I didnt realize that degarelix is injected. Is it a "depot", like Lupron/Eligard?

    I have that injection, but it was nothing to speak of.

  • Yes, crpc with mets. Yes, degerelix is depot.

    We all react differently, and the degerelix was the only treatment I did not tolerate well, plus it didn't work for me. Cabazitaxel also did not work for me, and Xtandi only worked briefly.

  • I iced the injection site and had minimal pain. The first one is the toughest since you get a double dose. To make things tougher I had my biopsy the same day!

  • I was on Firmagon for more than two years, with switching to Lupron a couple of times.

    In my case, the PSA and pain levels began to rise, and Xtandi was added, along with radiation treatments to the sacrum to reduce pain.

    But my testosterone levels were almost never in the >20 therapeutic level, so finally with all of the side effects that I was experiencing, combined with slowly increasing PSA, both my medical oncologist and my urologist suggested a bilateral orchiectomy.

    This was the toughest decision I ever had to make. There are advantages to an orchiectomy over the Lupron----fewer cardiovascular problems and less risk of fracture, according to an article in the JAMA a couple of months ago.

    I joked with my uro that I wouldn't mind too much having to be castrated because, "After all, they're no longer functional; just decorative." But I knew that I would have to have the prosthetic testicles---it would be so depressing to me to look down and see an empty scrotum each day. So I have a brand-new set of fake testicles, and yet my testosterone levels remain above the therapeutic level. I joked with my doctors that, "I'm just such a super stud that my body won't give up producing the testosterone." (I'm far from any kind of a 'stud'--I weigh 122 and am as weak as a kitten).

    I don't regret having the orchiectomy, not for a second. Even though it failed to bring the testosterone level down, the replacements are a nice size, unlike my "original equipment, " which had atrophied down to less than a third of their former magnificense...........lol

    An orchiectomy is a difficult, irrevokable decision, but I'm almost 68 years old (in about a week) and I've "sown my wild oats." It's not right for everyone, but it's an option to be considered

    CERICWIN

  • I don't see that advantage of orchiectomy over Lupron. If the testosterone level is under 20 by the Lupron, how much difference can the surgery make. especially if (say) Casodex lowers the testosterone a little more. (How much would that be??) But i know people that have done it. I also wonder if the testoserone would rise if the ADT was stopped. The poor things are shot after all.

    Sinnce osteoporosis is a result of low testosterone (low estorgen really I think), I don't see what difference surgery would make vs ADT. Conceptually anyway.

    And I assume the same for cardio. Its the testosterone level that matters, not how the level is obtained. Just trying to keep my mental map tidy....

  • I can't answr your questions, but all I remember from the article in the JAMA (Journal of the American Medical Association) is that there are some advantages of an orchiectomy over Lupron as fewer skeletal "events," fewer cardiovascular problems, just to name a few. You might be able to access the article somehow by looking it up in JAMA with the tag "orchiectomy vs. Lupron"

    This didn't have any bearing on my own decision to have the orchiectomy, as the Lupron and Xtandi and Avodart didn't reduce my testosterone level to the therapeutic level, and it was a last-ditch effort to try to control the T-level. And I certainly didn't have anything to lose, as the testicles were useless, anyway, and it is a relatively minor surgery---although it certainly has psychological implications, which is why I insisted on having the prosthetic implants.

    I wouldn't have had the surgery, though, had I known that the Xtandi would become ineffective and I'd be getting more metastases and end up in hospice care less than a year later. But hindsight is better than foresight, as we all know.

    CERICWIN

  • I forgot to add that with the Firmagon, putting some ice in a wash cloth and then in a plastic bag eased the pain in the injection site for me. It slightly thickened the abdominal wall, but it wasn't really noticeable, as I'm so very thin.

    The injection sites for Firmagon are on either side of the navel, alternating each month, so sleeping on the side doesn't cause any pressure on the site.

    I never had any problem with that, but trying to keep pressure off of the site with trousers, etc., wasn't the easiest thing. Tight clothing in the area must be avoided.

    CERICWIN

  • I'm pleased to see this post. I've been on Firmagon (BTW, what marketing department came up with this stupid name for a castration drug?) for the past 9 months and am thinking seriously about having an orchiectomy as an alternative to the severe injection site pain I have every 28 days. It is always at least 2 days of extreme discomfort and some months it takes 7 days for the injection site swelling and pain to dissipate. I've worked with the team of nurses who administer the injection to alternate injection sites and to inject slowly and at the correct angle, however, there is always pain afterwards. For me, I think the orchiectomy is in my very near future. Talking with my Oncologist this month about scheduling the procedure.

  • I had an orchectomy first thing after prostectomy when we knew cancer had metastized . No regrets. It's only been about 20 months since initial diagnosis, but coming up on 3 years since elevated psa. Castration is the same whether Lupton or surgery. With surgery it's over, no shots to keep reminding you of disease or pain from injections. My psa was over 14 at time of 2ND biopsy. And who knows, maybe 20-25 at time of surgery, glison. Score 9. I'll be 73 in Oct.

  • Frank, I think that the many other response you have received are all pretty on the spot. Firmagon does cause pain for a while, however I see that the level of experience of the person delivering the injection can control some of the pain. There is a technique to giving the injection, so the more experienced the better job.

    Icing the injection site, as suggested, does help.

    When I first had Firmagon I was the very first patient given it by my doc's nurse. She had no idea how to administer it and It hurt like hell and became infected. Get an experienced Firmagon injection administrator.

    Joel

  • Joel,

    My experience w/ Firmagon was similar to yours--initial doses to stomach area but at too shallow an angle. This med is very dependent on skill of nurse administering it, as you pointed out.

    Among the things that can lessen site inflammatory reaction are:

    1. Grasping skin at point of injection (thumb & forefinger) and pulling up and to the side.

    2. Slow injection (min of 30 sec).

    3. Leave needle in place for 30-60 sec post-injection (with skin still held up and to the side) before withdrawing it. This allows depot gel to begin to form before needle withdrawal, hence reducing the tendency for the med to leak back through the injection hole and reach the dermis layers most sensitive to inflammation.

    4. Be sure that the angle of injection is at minimum 45 degrees. This is supposed to be a deep subcutaneous injection, and I'm starting to think that closer to 90 degrees is better (provided that skin "pull away" described above is followed).

    5. Try getting the injection to your side rather than the more central stomach area.

    When I follow the above, site reaction is relatively mild and lasts no more than two days. I haven't needed ice or other pain mitigation steps.

    Dave

  • I've been getting Firmagon injections for 2 years and my experience has been very similar to Dave's. The deeper the angle of injection, the less pain and swelling. Angle of entry should be at least 60 degrees or higher. Advil every 4-6 hours is very helpful for the first couple of days and I use an OTC pain reliever called BioFreeze gel, which you gently rub on the surface of the reaction site. For me, this provides instant relief from pain, itching, etc., although it only lasts about 2 hours. It's a counter-irritant and the active ingredient is menthol. Somehow, it works fine for me.

  • To help with Firmagon reaction I used over the counter Benadryl tabs and Claritin 12 hour non-drowsy tabs the day of injection and day after. It helps quite a bit. Along with icing the area of injection.

  • Frank,

    There is no evidence that when you are on Lupron and Xtandi the PSA control of Firmagon and Xtandi is better. However, there is no evidence because the study has not been done. I will say, in a very unscientific way, based solely on speaking with individuals that many men have told me they have had better PSA control on Firmagon when Lupron has stopped working (this is just for men who have not been on Xtandi, so this adds another grain of salt to the pot). This is NOT scientific, so bear that in mind.

    Joel

  • Hi FGENTILEMD, MY NAME IS SCOREO222 AND i WAS ON FIRMAGON FOR EIGHT MONTHS AND LET ME TELL YOU IT WAS PURE HELL. i HAVE BEEN ON ALL THE HORMONES AVAILABLE AND MY BODY REJECTED THEM ALL. THE FIRMAGON HAS 12 SIDE EFFECTS AND i HAD EVERYONE OF THEM, UNTIL i COULD NO LONGER BARE THE QUALITY OF LIFE i WAS LIVING. I AM FROM CANADA AND MY ONCOLOGIST TOLD ME TO GO HOME AND LIVE THE REMAINDER OF MY LIFE WITH THE WATCH AND SEE, OR WAIT AND SEE, WHATEVER? i TOOK HIS ADVICE AND WENT HOME AND FELT GREAT COMPARED TO THE PREVIOUS EIGHT MONTHS. THREE WEEKS LATER HE CALLED ME AND ASKED IF i WAS INTERESTED IN A NEW STUDY ABOUT TO BE STARTED? I SAID YES AND WENT IN TO SEE WHAT HE HAD? MY PSA WAS 130 AND RISING, SO I HAD NOTHING TO LOSE. HE STARTED ME ON AN ESTROGEN PATCH THAT HAD NEVER BEEN USED FOR MALE CANCER (PROSTATE). IT HAD NO SIDE EFFECTS AND 0NE MONTH LATER MY PSA WAS 79. THREE MONTHS LATER IT WAS 19. TO MAKE A LONG STORY SHORT, MY PSA FELL TO 0.11 AFTER SIX MONTHS AND REMAINS THERE TWO YEARS LATER. nO SIDE EFFECTS AND YOU NEVER KNOW YOU HAVE THEM ON, UNLESS YOU KEEP TRACK ON YOUR CALENDAR WHEN YOU CHANGE THEM. I WEAR TWO PATCHES AND CHANGE THEM EVERY FOUR DAYS, IT'S LIKE STARTING A NEW LIFE AND ONLY A CANCER PATIENT WOULD APPRECIATE WHAT I AM SAYING? IT IS CALLED ESTRADOT 100 AND IF YOU GOOGLE IT THERE IS NO MENTION OF MALE USAGE FOR THE PRODUCT. i POSTED THIS A FEW MONTHS AGO AND NO ONE EVER REPLIED TO ME, SO I CAN'T MAKE ANYONE TRY IT,S BUT IT IS THE MAGIC BULLET WE ALL HOPE FOR IN OUR LIVES. GOOD LUCK WITH YOUR FUTURE ENDEAVORS.

    SCOREO 222

  • I have been on Firmagon since November 2015. Other than a little more tiredness and the soreness in the abdominal area for a few days, it hasn't caused me any particular problems. I don't do anything special after the injection and continue to work with no problems. After reading some of the replies, I must either be highly resistant to pain or just lucky that my body is not offended by it much! So sorry to hear of some of the issues you others have had. I pray it continues as I am experiencing it.

  • I was on Firmagon for about three years, and while the injection sites are painful, they weren't intolerable and did not interfere with my sleeping.

    I also found that using some ice in a wash cloth, inside a plastic bag, relieved pain almost immediately. One of the reasons that Firmagon is painful is that it comes as a dry white powder, which is reconstituted with sterile water immediately prior to injection.

    The Firmagon immediately forms a lump of gel at the injection site, which is a time-release.

    And it's most painful for a day or two immediately after injection, then it fades to a tolerable level. The injections are given in the abdomen, on either side of the navel, alternating each month. So they're not interfering with sleep, unless you would sleep face down.

    I always sleep on my right side because of pain issues with my left leg and hip.

    Firmagon did a wonderful job of lowering my initial PSA of 744 down to 12 within a couple of months, and then falling slowly after that, before it began rising again, up and down.

    My case is far from typical, though. I was diagnosed late, when the cancer had spread to almost all of my pelvic lymph glands, spine and sacrum.

    CERICWIN