terrible pain after firmagon shots. Why? Suggestions?

[bloodyveinpoke]

Mayo doctor switched me to firmagon. 2 shots in belly yesterday. Unremitting and awful pain started in 5 minutes and has been unrelenting. Am told to go to emergeny roon, after vomiting blood last night, but want someone who is up on firmagon and not throwing darts at a dart board of possibilities. Cause was firmagon shots, not somthing else. Any ideas??

[SuppWife]

Some pain and swelling is obviously normal, especially the first time with two shots. Proper administration of the Firmagon injection(s) is very important. If the nurse isn’t well trained the medicine can be injected too fast and the angle of the needle is important.

One time my husband got his shot from a less skilled nurse and it was injected too quickly and at the wrong angle and that shot caused him significant pain that took several days to resolve. It makes sense that you’re hurting the day after the shots, but the pain should get better in a couple of days. And it should not be excruciating as you describe.

After that we always demanded the nurse we trusted.

I’m not aware of any serious side effect from sloppy administration other than pain but others here may know more.

Vomiting blood is very concerning.

Hope you get some relief.

[bloodyveinpoke in reply to SuppWife]

You may have hit the nail on the head. Thank you. The nurses first wanted to put shots into my arms, but I mentioned the accompanying lit. says go into the "stomach." (Doubt they really meant that.) So they grabbed some belly fat, counted 1,2,3, and plunged the liquid forcefully and quickly straight into the flesh. In 5 minutes serious pain started, and has relented only a trifle in the 36 hours since. Accompanied by some sweating, major body weakness, and a session of vomiting blood. At this rate, this stuff better be WAY more powerful than Eligard in fighting cancer.

[SuppWife in reply to bloodyveinpoke]

Oh, dear! Ugh! That’s awful! It’s supposed to take about thirty seconds to give those injections and if I remember correctly at a 30 degree angle. Our nurse is real pro. She timed the injections and was diligent about the angle of the needle.

Not everyone agrees but I believe degarelix/Firmagon is a superior drug and we insisted on monthly shots of Firmagon when the doc suggested he switch to 3 month shots of lupron. There are a couple of threads on here discussing the differences. Look around in my profile under posts and replies.

Keep us posted.

[RyderLake2]

Hello, my experience with Firmagon is a little swelling and discomfort at the injection site is normal. It usually goes away in a couple of days. Vomiting is a new side effect. Never had that happen. You might want to switch to Zoladex or something similar if it persists.

[bloodyveinpoke in reply to RyderLake2]

Thanks. Mayo doctor said to switch from Eligard to Firmagon. Have just written him for advice. Pain, weakness, vomiting, etc --- makes you wonder if the treatment is worse than the disease.

[Gudgelm]

Don’t give up on the Firmagon (especially if you have cardiovascular disease) but do find a practitioner who is experienced giving the injection...that makes a huge difference. The way you described the injection is close to malpractice! Hang in there!

[Zetabow]

I did the injections myself, some discomfort in belly and joint pain, hard to say which drug was causing the joint pain as having Chemo at same time.

I went on holiday last October (took my boys to see Grandma in UK) they gave me some injections for the flights, to protect me from Thrombosis, it was like self injecting a Bee sting lol

[monte1111 in reply to Zetabow]

I'm not in to do-it-yourself dentistry, home prostate biopsies or self injections. You are a brave soul. Nurse mentioned I do self injections for low WBC count but before I could tell her that that was her job, Dr. said insurance would pay for office injections but not home injections. The shots were $3,000 or so each and I had about 15 of them. They were worse than the chemo. Hope you and boys had great time in UK.

[GeorgesCalvez]

Firmagon injections are a bit of a ritual with mixing the stuff up, then putting in the needle and pulling the plunger back a little to see if there is blood. If you have blood then you have hit a capillary and you should not continue.

The injection should be done slowly at an angle into the fat so that the material can spread out to form a depot.

I did 19 months on Firmagon so I was a bit of an expert by the end and would instruct new nurses on how to do it. I had offers of sticking it in my bum or the arm which I politely refused.

I found ibuprofen pretty good for the pain and I would preload on the morning of the injection and then take more as needed.

Interestingly I found the early injections less painful, they gradually became more painful and peaked at about six months, after that they became a lot less painful again.

It was very effective in lowering PSA in my case, I started with a PSA of 2.07 which fell to 0.27 after ten days and then to undetectable at the next test after three months. I suspect that it was undetectable long before that.

[binati]

Don't take Firmagon injection from anyone who is not experienced. It is a matter of following the instructions carefully and some artistry learnt from experience. It should be midway between the navel and the left or right side of the waist. Maintenance dose is one month on the left and next month on the right. It's important to inject slowly in 30 secs and then hold the needle for 30 secs before withdrawing. After the injection for a day or two use ice packs on the injected area. This will reduce the reaction. There might be some redness and slight pain. The ice packs give good relief. Keep away from the areas close to the navel as for some reason this area hurts more. I find as close to the side of the waist as possible.

[Philly13 in reply to binati]

I agree with binati and can add the team at Jefferson tracks the injection in 4 quadrants on both sides of the belly button. I track it too and go lower right to upper left, then upper right to lower left and the start again on the lower right. I agree the closer to the belly button the more it hurt in the past. I am pretty sure that they told me that more belly fat makes it easier and less painful. I don't have nearly as much of that as I used to.

[bloodyveinpoke in reply to binati]

Thanks to binati and others. My 1st reply via cell phone disappeared, so I am trying again via computer. Am now in hospital awaiting exploratory surgery to see what is wrong in gut. Call to Mayo tells me that firmagon is not to blame. Strange that the pain would start immediately after the double injection. Surgeon wants to open belly, and we are just waiting another day to see if the distension and pain will go away with nasal-gastric tube sucking out belly contents. If not, he thinks scarring/growths/twisting are the culprits. Just what I need on top of metastatic P.C. and cardiac problems, at age 80. If the horrid paid results in discovery and fixing of gut problems, it may have been a blessing. Still I agree that the nurse/injectionists were pretty incompetent.

[SuppWife in reply to bloodyveinpoke]

Please, keep us posted and I hope you’ll get good answers! Prayers and best wishes!

[bloodyveinpoke in reply to SuppWife]

Thank you. Some good luck: special sauce used for xrays dislodged any blockage and photos say no need for surgery. So hope to go home tomorrow without a belly grand opening. No one in the medical profession so far agrees that firmagon was the culprit , but I am convinced, from what some of you have written about the injection technique, that the spearthrowing effort by my nurses resulted in some sort of instant paralytic/shock to the system that locked things up and gave the awful pain. So am trepidacious about next injection, I guess in a month. Will surely insist on a more leisurely, accurate, and gentle penetration. Maybe the Firmagon people have something to say on this. Regards, Bob, aka bloodypincushion or bloodyveinpoke.

[SuppWife in reply to bloodyveinpoke]

So glad you’re on the upswing! I would tend to agree with you. Those shots are no joke. I would definitely address that with your provider’s office. The Firmagon people need to make sure the office personnel are properly informed and trained on administration.

Don’t give up on Firmagon!

Thanks for updating us!

[Dandellis]

5mos on firmagon, pain goes away on 3rd day. After a week, can't even tell you had injection. Throwing up blood is not related

[MateoBeach]

Yes, I agree that your experience was not typical as others have prescribed.

I had Firmagon to provide adjuvant ADT for radiation therapy. And I was leaving for my vacation home in Cabo for two months. I opted for a non standard dosage of 120mg at a single abdomen site. And I supported it and mitigated side effects with estradiol patches (2 patches of 0.10 mg/day; one changed out every morning). Makes ADT MUCH more pleasant!

My T level was checked 24 hours after the injection and was already castrate @ < 20.

Firmagon has a half-life of 40 days due to slow release from the "pool" of the drug in the fat tissue. Therefore I estimate (guess) that 120 mg every two months would likely maintain a castrate state, especially with the added support of the estradiol patches.

Note that I did not do any degarelix blood levels at peak and trough or any other formal verification of this. I am just of a temperament to try things outside of standard practice to deal with my own specific situations.

I will use this same approach going forward when I am traveling for longer than a month.

[Philly13]

I started monthly injections of Firmagon at the beginning of June 2019. I found varying degrees of discomfort every month. Huge red spots developed some, and it hurt a good bit. Some months worse than others. It was very uncomfortable to wear pants with a belt. I also got very tired for 2-3 days, and one of those months, the pain and lethargy lasted longer.

The last two injections (December and January) have been much better. January was pain-free and no loss of energy. Firmagon is considered a Hormonal Chemotherapy, and I read that fasting before having Chemo administered helped with side effects. I tried it in November, and it seems to be working, though 2 months is a small sample. I also decided to take Celebrex before the injection.

My mindset at the outset was I knew what Firmagon would do, found it temporarily uncomfortable, but handled it with ease. The Doctors suggested I switch to Lupron, which is every 3 months for “convenience.” I did not do that. As long as they said it was the same, I decided the devil I knew was a better option. A trip to get the injection for me is no big deal. I always get the first appointment, and it takes 15-25 minutes, depending on staff meetings and their scheduling.

I don’t know whether the fasting is the answer, or the Celebrex, or some combination of the two, or my body is adjusting to the monthly invasion of helpful poison.

Throughout my life, I have been told many times that I have an unusually high threshold for pain. I don’t know if that has anything to do with my experience and don’t really know what that means, but I suggest you try fasting (16 hours in January and 20 hours in December for me) and/or Celebrex to see if it works.

I am a fellow warrior and no expert, but my personality is to experiment with things around the problem. Fasting, for me, is easy.

What does your Oncologist say about the blood? That seems to me like it might be an unrelated problem.

Good Luck,

Philly

[Rkoma]

I allways use EMLA patch 1h before injection. No pain during and after. Just small swelling 2-4 days. Proper administration is most important: preparation, angle, slow injecting, waiting 30 sec and closing needle channel with short massage of this area. Read instructions carefuly and ask nurse to exactly follow up

Rkoma

[Yats]

Where I received the injection, it was tender. Each injection after that was tender but no other issues. I experienced a hard knot from each injection. After 6 injections of Firmagon, doc switched me to Eligard45 (injection every 6 months). Good luck.

[billyboy3]

your bleeding is not good news to must be investigated. I have given myself he injections many times, no big deal, remember, we are not dealing with a cold here people, we are dealing with a life threatening disease the is being fought with very potent drugs that can have extreme side effects, especially the longer and more cycles one repeats.

There is no option as death will come much early without intervention as is now the standard practise, so get tough, suck it up and live large while you can.

[joeguy]

Every time I get a Firmagon injection an area about 6 inches in diameter turns bright red and swells with considerable pain. This lasts for about 3-4 days, and I find keeping ice on it and taking Advil helps quite a bit.

[binati in reply to joeguy]

I had a similar problem with sometimes a big red patch and sometimes hardly any redness. Now I get the Dr to hold the needle for 30 secs after injecting so that the last bits in the needle do not interact with the upper layers of skin. That is when they cause the redness. Using cold packs immediately after the injection and a few times after that on the same day helps reduce any pain. Keep away from vigorous activity and sweating for 2 days. Last time as an experiment I played 18 holes of golf the day after the injection. I had 3 more days of pain than normal!

[Leader4077 in reply to binati]

Ice, before and after the injection, is the key.....had 14 Firmagon shots and the first was the worst.......iced ever since and it works.

Mike B