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Question for Firmagon users.

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Posted 7/7/2024 12:22 PM (GMT -5)
I have been using Firmagon (with abiraterone) for the last three months while undergoing Proton radiation to my lymph nodes. My first double dose went well, only minor discomfort and swelling at injection site for a few days. Then, the next few shots really took me down. Over a week each time of pain, swelling, and redness. Now, with my 4th injection, I have redness and swelling but not too much pain. (I use cold packs and analgesic ointments.)

Does it get better with time? Should I look into Orgovyx? Any help is appreciated.
Posted 7/7/2024 2:22 PM (GMT -5)
I did not tolerate Firmagon after the initial doses. I switched to Orgovyx which turned out much better. I do not know about Orgovyx and Abiraterone combined.
My best wishes
Jack
Posted 7/7/2024 2:46 PM (GMT -5)
Switching to Orgovyx is worth a try. Hopefully your insurance will approve it.
Their mechanism of action is the same.
Posted 7/7/2024 3:22 PM (GMT -5)
Thanks everyone for your replies. Insurance will cover this but this year's deductible is $6,800! I will have to hold out until Jan. 2025 when the new medicare drug rules kick in. Then I can swing the $2,000 deductible for the year. Oh Sigh. You guys are great here.
Posted 7/7/2024 7:53 PM (GMT -5)
Pax - If you are on Medicare Part D, your max out of pocket should be approx $3300-$3400 for 2024 then drugs are no charge, $2000 is for 2025 as you noted. My wife was done for the year in February 2024 thanks to expensive cancer drugs. If you are on some other plan, sorry about that.

You can verify this on the Medicare website by checking drug plans with your drugs.
Posted 7/7/2024 7:59 PM (GMT -5)

Mumbo said...
Pax - If you are on Medicare Part D, your max out of pocket should be approx $3300-$3400 for 2024 then drugs are no charge, $2000 is for 2025 as you noted. My wife was done for the year in January 2024 thanks to expensive cancer drugs. If you are on some other plan, sorry about that.

You can check this on the Medicare website.

Thanks Mumbo. My medicare D was quoting nothing but out of range numbers. 2025 is a godsend in terms of cost.
Posted 7/7/2024 8:09 PM (GMT -5)
FYI - My wife was getting drugs at no cost from Pfizer but that whole situation is changing with the lower out-of-pocket costs with Medicare so we had to pay. She got a grant at the University to cover the $3300 expense so we still got it essentially for free. I am hoping that they will be given the benefits to those who don’t qualify for Medicare Part D in the future and would have to spend huge dollars per year.
Posted 7/7/2024 8:25 PM (GMT -5)
Pax, when I switched to Orgovyx, my Uro looked around and got my price reduced to under $50.00/month. That price remained the same for 1 year. It then went up to $80.00/month. Maybe working through your Uro might help if you go with Orgovyx.
Jack
Posted 7/7/2024 8:33 PM (GMT -5)

Jack64 said...
Pax, when I switched to Orgovyx, my Uro looked around and got my price reduced to under $50.00/month. That price remained the same for 1 year. It then went up to $80.00/month. Maybe working through your Uro might help if you go with Orgovyx.
Jack

Thanks Jack. My MO tried to help but although I probably qualified financially (per month income), they (the Drug company) wanted my complete financials including banking, house worth, and many other privacy-invasive information. I said No thanks.
Posted 7/8/2024 6:49 AM (GMT -5)
My wife has been going through this financial assistance stuff since 2020. We are in good shape financially so have always been worried about qualifying for anything as is usually the case. The University Pharmacy people were adamant that we should try as people with more income, etc qualify many times keeping in mind that we really did not have much income as we were both recently retired and just starting SS. So she qualified the first year and second year was almost automatic. After that, Pfizer started raising the bar and asking for more documentation which was easy, first page of previous year 1040.

When 2024 rolled around, it was clear that the qualification requirements were based on poverty standard multiples and we would never qualify. However, they never asked about assets or net worth which I thought was odd, just income from known sources like SS and interest and they would add things like tax exempt interest and untaxed social security back in to get a higher number. Anyways, that is over for us now and grants are the next thing.
Posted 7/8/2024 9:50 AM (GMT -5)
Hello, PaxNova ~

Diagnosed in my 40s, I have beennon continous ADT since diagnosis in 2013.

My oncologist was wise in tracking testosterone, in addition to PSA.

He found LUPRON didn't suppress my testosterone consistently.

Same experience with FIRMAGON.

Ultimately, ZOLADEX worked consistently, and my testosterone and PSA "spikes and flares" leveled out. It's a tiny injectable pellet. I get a tiny shot of LIDOCAINE first, in my abdomen, then the ZOLADEX pellet is injected. It's an easy-breezy process.

In regard to your question, FIRMAGON left me with with painful and swollen site injection reactions, that honestly felt like a bee sting, for days in a row.
LUPRON left me with an ache that lasted a few days, as well.

I might be one of the few fellows here who has tried 3 different forms of ADT.

It was not an issue to switch from one form to another. I appreciated the fact that my oncologist led me through this, to seek the form of ADT that was most beneficial. In my case, ZOLADEX worked much better.

Now there's the newer oral ADT pills, which you referenced. I don't have experience with ORGOVYX, but it's helpful for everyone to know there's alternative forms of ADT.

Be you own advocate, consult with your doctor, and find the form of ADT that works best for you. Also, it's important to track testosterone levels, along with PSA, to ascertain that the ADT is working effectively.

Some experiences to share ~
CYCLONE ~ # Iowa State University
Posted 7/8/2024 10:13 AM (GMT -5)

Cyclone-ISU said...
Hello, PaxNova ~

Diagnosed in my 40s, I have beennon continous ADT since diagnosis in 2013.

My oncologist was wise in tracking testosterone, in addition to PSA.

He found LUPRON didn't suppress my testosterone consistently.

Same experience with FIRMAGON.

Ultimately, ZOLADEX worked consistently, and my testosterone and PSA "spikes and flares" leveled out. It's a tiny injectable pellet. I get a tiny shot of LIDOCAINE first, in my abdomen, then the ZOLADEX pellet is injected. It's an easy-breezy process.

In regard to your question, FIRMAGON left me with with painful and swollen site injection reactions, that honestly felt like a bee sting, for days in a row.
LUPRON left me with an ache that lasted a few days, as well.

I might be one of the few fellows here who has tried 3 different forms of ADT.

It was not an issue to switch from one form to another. I appreciated the fact that my oncologist led me through this, to seek the form of ADT that was most beneficial. In my case, ZOLADEX worked much better.

Now there's the newer oral ADT pills, which you referenced. I don't have experience with ORGOVYX, but it's helpful for everyone to know there's alternative forms of ADT.

Be you own advocate, consult with your doctor, and find the form of ADT that works best for you. Also, it's important to track testosterone levels, along with PSA, to ascertain that the ADT is working effectively.

Some experiences to share ~
CYCLONE ~ # Iowa State University

Cyclone, thank you for the information on Zoladex. You inspire me with your own personal war on this beast. I will consult with my Med/Onc about trying Zoladex. Many years my friend.
Posted 7/8/2024 11:38 AM (GMT -5)
Hello, PaxNova ~

ZOLADEX isn't as commonly used, but it worked much better for me.

I spent months on both LUPRON and then FIRMAGON, giving them a "fair chance."

Each case is different, but ZOLADEX worked far better for my case.

Do NOT shy away from the idea of the larger gauge needle, needed to eject the tiny pellet. The tiny shot of LIDOCAINE takes away all discomfort.

I feel no residual pain in the days following. It's injected into my lower abdomen. I just close my eyes for that moment and it's over.

It's certainly worth your time to discuss this possibility with your oncologist.

You can always switch over to the oral form of ADT, in the future, when your medical coverage would change to cover more of the cost.

I didn't realize that switching forms of ADT would be such a seamless process. In my case, it was warranted.

ZOLADEX helped flatline my testosterone level, which helped suppress my PSA. I get the monthly injection. I believe there's a 3-month version, but if you make a change, it makes sense to try the one-month dosage.

Sending my encouragement & supportive thoughts to you!

In fellowship,
CYCLONE
Posted 7/8/2024 8:37 PM (GMT -5)
Pax, I had the same experience as you on Firmagon. I had two doses, and each time, I had severe redness around the site of the injection, it was hot to the touch, and the skin was slightly raised the second time it was bad enough that the doctor decided to stop giving me Firmagon and replaced it with Lupon, perhaps that would be less of a an insurance issue.

I had no issues once I went on the loop on Lupron . At least no side effects I should say.
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