Barry: Hi, Diagnosed with advanced... - Advanced Prostate...

Advanced Prostate Cancer

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Barry

littlemount profile image
13 Replies

Hi, Diagnosed with advanced prostate cancer stage 4 gleeson score 4+4, having six monthly degarelix injections, had bad side effects on second injection upset stomach diorea feeling very drained, wondering if 3 monthly injections would be better less chemical in system?

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littlemount profile image
littlemount
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13 Replies
RyderLake1 profile image
RyderLake1

Hello Barry,

I have been on ADT drugs for a very long time (10 years and 8 months). For nearly all that time I have been on Zoladex (goserelin) with injections every three months. About seven years ago, as an experiment my radiation oncologist tried Firmagon (degarelix). I took Firmagon for one year. Like most folks I had some injection site swelling with each monthly Firmagon injection. That is quite common. I never had the side effects you describe. My issue was the frequency of doctor’s appointments (12 times a year vs 4). In my humble opinion you should make the switch.

GP24 profile image
GP24

Instead of degarelix you could use Relugolix (Orgovyx) pills. They have almost the same active ingredient as degarelix and will save you the monthly injection.

maley2711 profile image
maley2711 in reply toGP24

cost?

TrashPanda72 profile image
TrashPanda72 in reply tomaley2711

I am battling this now. My Medicare Part C through Humana has the copay at $1000 a month…. I am in the process of filling out paper to ask for financial assistance from the manufacturer….

maley2711 profile image
maley2711 in reply toTrashPanda72

this.....

" The out-of-pocket spending threshold is increasing from $7,400 to $8,000 (equivalent to $12,447 in total drug spending in 2024, up from $11,206 in 2023). This amount includes what beneficiaries themselves pay out of pocket plus the value of the manufacturer discount on the price of brand-name drugs in the coverage gap phase. Based on the $8,000 catastrophic threshold for 2024, enrollees themselves will pay about $3,300 out of pocket before reaching the catastrophic phase (this estimate is based on using brand drugs only). "

Since your Part C apparently has drug coverage instead of separate coverage Part D for drugs........

Whoops, I see that you are 51, so employer coverage? Do you have an annual out-of-pcket max for drugs?

TrashPanda72 profile image
TrashPanda72 in reply tomaley2711

No such luck for me. Lost my employer plan when I could not return to my previous position after 24 months… Was in a market place plan, but when Dissability kicked in , the plan kicked me off because I was then Medicare eligible. Yay stage iv metastatic cancer 😂. Medicare at 51 isn’t fair. And not being old enough the feasibly take money out of IRAs, SSDI is not enough to cover my bills. Poop situation- but hopefully one I will get to be in for a few more years!

MoonRocket profile image
MoonRocket in reply toTrashPanda72

You are mistaken about withdrawal from IRAs, There is such a thing called Rule 72(t) withdrawal that allows a person to take money from an IRA without paying the 10% penalty. You'll want to work with financial advisor to make sure you don't screw up the calculation but withdrawing money is allowed.

maley2711 profile image
maley2711 in reply toTrashPanda72

Do you also qualify for Medicaid? With Medicare and Part C, need to see if it had same rules for drug out of pocket as Part D does. If it does, then in 2024 max out of pocket should be in area of $3000, and $2000 in 2025, thanks to Biden legislation!!

Not all employer plans would be better than that, though maybe yours was? I don't know how Medicaid deals with drug costs ...free?

Kevinski65 profile image
Kevinski65 in reply toTrashPanda72

An injection of lupron or it’s generic is covered under Medicare.

GoBucks profile image
GoBucks

I had 6 month lupron shots. After every shot I had what I called the "lupron flu". Felt like I was hit by a truck and couldn't get out of bed. Slept it off for a day or 2. Never had GI issues.

skiingfiend profile image
skiingfiend

I'm not sure what you're plan is but:

1. If you are 6 and done, I would advise you to take all six. All of these drugs are poisons of some nature and you will have side effects. You want the chemical in your system since that's where the benefit comes from.

2. If you are on ADT for life or long term, I advise you to work with your MO, if you're so lucky to have an MO you can work with, to find the drug and dosing scheme you find most tolerable.

Kathmandu86 profile image
Kathmandu86

Hi Barry. I have been on abiraterone (aka Zytiga) for about 30 months, as well as a degarelix (Firmagon) injection once a month. The degarelix does seem to have significant side effects, but so far I've stuck with it. (With doctor's permission, I skipped one degarelix injection, and I seem to feel a lot better. I do plan to resume degarelix next month, but if I feel terrible for quite a while after the next one, I will talk it over with my oncologist. Are you taking any androgen deprivation drug other than degarelix? If not, I'd strongly recommend talking to your oncologist about adding abiraterone (Zytiga), and maybe, if you doctor agrees), cutting back on the frequency of degarelix. Hope this helps. Please let us know what you find out, and what you decide.

All the best to you, Barry.

Mbnm profile image
Mbnm

We have similar cancer ..I amon aberaterone and prednisone daily plus lupron injection every 3 months….works well…I think lupron does same job as degalarix…might be worth checking and easier on you…good luck

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