Oh my word, I've first got to say I am so thankful for finding this forum where I can finally learn somethings and also ask some questions... One of my questions is how in the world do so many pay for LUPRON? I mean, I have good insurance but even with that one injection still costs me $475 out of my own pocket... how long do lupron injections go on? Because if this is a 'monthly' cost that is going to be a game changer for me, I'll just not be able to afford that at all... It seems like ever since I was diagnosed my bank account has been bleeding everyday... Thanks for any input...
SCARED OF LOOSING IT ALL...
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RMHFlorida
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There is another option that most oncologists don't mention. My first urologist offered it but since I wasn't expected to survive long (Gleason 5+4) and I was caregiver for my parent at the time.
I got tired of Lupron side effects, especially the mood swings, I opted for orchiectomy this year. A big part of that decision was that the doctors gave me another decade to live and I did not want to be tied down to a quarterly doctor visit (I'm low income so I get "special help" from Medicare and pay $0 for my meds). You might take a look at a video from the MaleCare conference: youtube.com/watch?v=RiFnusS... at 10:30 for a quick discussion of castration.
It's a big step for a man to be castrated, but after Lupron causes your balls to atrophy to uselessness there's really no good reason to keep them. As I understand it, castration is common in Europe where reliance on overpriced drugs isn't pushed as hard. Oh, and so as not to depress you further don't, don't, don't check the price of Lupron in other countries
I have been off the board for a while as I recovered from another horrendous hospital experience -- nothing to do with the orchiectomy but everything to do with after care for a single man without a hovering relative (or better yet lawyer) to see that I was not ignored and disregarded.
Side effects from the castration, so far: none. A little discomfort for about a week when going up stairs or foolishly trying to lift a heavy object. But that cleared quickly and now I'm Lupron free. Hot flashes aren't as sweaty, cold flashes aren't as freezing and I hope not to get PMS every three months.
At your age, assuming you're on Medicare, I'm surprised you have that kind of out of pocket cost. My surgery (at age 65) and then salvage radiation and also 14 months of Lupron cost me next to nothing - only the minimal Medicare deductible. I've always been surprised at how little I paid for any of it. I'm in Atlanta and surgery was over $57 thousand, two months of radiation was somewhere around $125 thousand, and Lupron injections (every 3 months) I think were about $2500 each. I had no co-pays or balance billing. I'm on traditional Medicare with a supplemental insurance policy. The Medicare premium comes out of my Social Security and the supplemental premium, at the time, was less than $175/mo. Might be wise to talk to a knowledgeable insurance broker to make sure you're getting the best deal.
Thanks for getting back to me, I already know I'm not enrolled in the best Medicare Advantage Plan and have every intention of changing this later this year when open enrollment comes around, right now it is what it is and I'm stuck with what I have!
If you are on a Medicare Advantage Plan (Part C) you will pay a lot for everything. If you are on traditional Medicare + supplemental (Parts A, B & D -- for drugs) you may pay less. For sure you will be able to see any doctor you want without pre-approval from the Advantage Plan.
My Lupron cost was around $4,100 and was billed through Part D with a 20% co-pay until I hit Catastrophic Coverage when it dropped to 5%. Since I am on Xtandi at $12,0000 per month I got to Catastrophic very quickly. I don't know how Patrick got his Lupron for free I have always been billed for all my drugs. I am poor so I get "special help" which pays for everything: my total drug costs for the year come in around $70.
A good Medicare advisor will be very handy. Check AARP in your state to see if they have anyone in your area who could help for free.
Hi and thanks for getting back to me... I do have the Medicare Advantage Plan and so I know I'm pretty much stuck with what I have this year but will certainly make a change when I can later on this year... Even though I am paying out quite a bit I will be hitting the wall with the maximum out of pocket limits very soon and then I won't have any further co-pays this year for anything medical, after I hit the limit with the doughnut hole with prescriptions then I'll be looking at 25% for those... So it's just what I have and just what I have to live with for this year! I know everyones treatment is different but hopefully I will get alot more information next week when I go for the full body bone scan and also the CT scan... I'm trying to learn to back off of so much information and just take it a step at the time but I do have questions like how many radiation treatments I'll have, how long will I be on Lupron... Thanks for the advice and experience you have shared with me and wish you well in your journey as well... Robbie
Hope my info does some good, but please find a Medicare advisor and look carefully at everything. After the doughnut hole I still have to pay 5% under Part D even though I have met the maximum out of pocket limits. Your Advantage Plan will be able to tell you if you will be in a similar boat.
The biggest difference between Advantage and Traditional, as I see it, is that on Traditional you don't need pre-approval for anything but you don't get as many side benefits. It is all very confusing so talking to an advisor can be very helpful, as long as they are familiar with Traditional Medicare -- advisors can be good or bad, just like doctors and everyone else
As you are having a bone scan, I'm guessing you have bone mets. I have extensive bone mets and have always had them (since diagnosis in 2014 when I was 65). I have had no radiation and no chemo and no surgery to date (well I did just have TURP so I pee like a teen now, but nothing PC related). I started on Lupron and Bicalutamide (Casodex) then went to Xtandi and Lupron when the Bicalutamide stopped working. I was scheduled for Lupron for the rest of my life unless I got castrated.
I have no bone pain -- never did have any -- and am an active and fully engaged senior. My doctors marvel. I just keep on keeping on. A good therapist is also helpful.
I would highly recommend getting a second opinion on treatment from an oncologist at a major cancer center for perspective on various choices. They are coming out with lots of DNA specific treatments (alas none for my particular mutations) and the big boys know most about them. I hope your doctor has sent of blood for tumor DNA analysis.
Over the past 5 years my PSA has slowly crept up and when it hit 2.0 I decided on immunotherapy. I just did Provenge, which I wanted to get before any chemo. Chemo reduces the immune system and will provide a less favorable experience with Provenge, my research shows. For more info see the MaleCare YouTube video on "Immunotherapy for Prostate Cancer - Provenge or Keytruda? Is immunotherapy right for you?" youtu.be/OIfWCA0GQ3E
Everyone (well all my doctors) kept telling me my PSA would go up while I got Provenge. After first treatment my PSA went down 0.2 points and after the second one it went up 0.03. I won't know until probably July what the overall trend is.
In general, to me it just doesn't seem to be a good time to be suppressing one's immune system.
Thank you so much for take the time to share so much information with me... You've given me alot to think about and research... I will be having the bone scan, CT scan this week, then Lupron injection followed by radiation, at least that is the plan at this point...
I too have wondered about my no-extra-cost Lupron treatments. As far as I know, it was NOT billed thru Part D as a prescription drug, but was included as part of the office visit when I received the injection. I have another follow-up visit with the urologist in July and will ask about that. Maybe an Advantage plan requires that Lupron be treated as a separate prescription drug. I'm aware that Part D has a huge deductible with various co-pays based on what tier the drug is on. I'm currently wrestling with a possible $150 co-pay for the Shingrix vaccine. Seems crazy to pay that much, and to possibly pay it twice since I understand the vaccine is a two injection process.
Hi Patrick. I've thought about it, too. I have traditional Medicare. I know that injections given in a doctor's office are sometimes covered under Medicare Part B when given during a regular visit, which IIRC, has a yearly deductible amount but not a co-pay. My AARP supplemental insurance covers the Part B deductible. Since I get "extra help" with my Part D I rarely see any drug costs and when I do they are in the $9 range.
When I started on Lupron, my urologist prescribed it and I picked it up at a retail pharmacy. When I changed to my oncologist, the Lupron came through their pharmacy but the cost amount didn't change.
That may be due to a Medicare scam running in Florida where oncologists don't give injections/infusions the same day they see patients (mine claimed it was a policy from First Coast Service Options, the Medicare overseer for Florida) so all injections were on a separate day with no doctor visit associated with them. What a cruel thing to do to critically ill patients: make them come to the doctor's office twice, once to see the doctor and another to get an injection/infusion, especially last year during the height of the pandemic. But, Florida.
You are right Shingrix is a two dose regimen given a couple of months apart. Just be glad you don't have to pay USA retail: $2,149.67! #drugcompanyprofiteers
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So unsure what to do...
How many of you have had a doctor recommend RP or EMRT without having first done an mpMRI? 
The best libido booster you can possibly have, even with zero erection.
Was my Surgery necessary or should I have been told to do watchful survilance?
