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Advanced Prostate Cancer
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Drug Prices

Hello....

Wondering how people here are affording these medications or are you all in Clinical Trials. I simply cannot AFFORD to stay alive if I were to pursue many of the treatments I see enumerated here..... anyone on Medicare Part D alone and able to pay for say Xtandi???...... any medicare recipients here able to get Prescription Assistance from Manufacturers?? I could spend down ALL my available cash and eventually get government help but that would diminish my quality of life to such a degree that I might as well bow out. Sorry to sound so melodramatic but this truly is a serious issue...

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I found out that there are grants available on sooner of these medications. You'd need to talk to your doctor about it.

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Thank you...

Are you on grants?? I note in your into that you are on quite a number of quite expensive medications... any info appreciated.

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I had a grant for Xtandi. My doctor has a individual on his staff that only works on funding like this. I don't know myself where this money comes from, sometimes it comes from the company making the medication.

Good Luck

Dennis

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I’m starting Xtandi now with private insurance and pay $0 but I too worry what happens when I go on Medicare in January 2020. What kind of expenses are you seeing?

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HELLO..

I'm doing advanced planning....anticipate mets on next bone scan and have been looking at prices of medications ... haven't gotten "exact" amounts simply because even under Medicare Part D Catastrophic coverage I can't afford most of them.... Sorry I can't be more specific but when I looked at Blink Health ( an online discount site that generally negotiates very good NON insurance prices) and saw Zytiga at more than $11,000 Dollars( though I am told there is a generic that runs under 4000.00 some places) I started looking at the other drugs and found they all ranged in the thousands of dollars. I'm from NYS and am hoping that my State Pharmaceutical Assistance Plan will cover some of these but I can't know this until I know what is going to be prescribed... Again...sorry about the lack of specificity but I was really just feeling folks out for how they were paying for these drugs and looking for ideas.....

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Hi, I'm 58 and have private insurance at the moment. Looking into early retirement of age 62, hopefully.

My research finds for Medicaid Part D, is too have Original Medicaid with Medigap. Since, Medigap would pay for the 20% out of pocket fee. Although, there's a catastrophic rule, without Medigap and if out of pocket exceeds around $4k, then defaults to 5% out of pocket fee - I think...

Hear, Medicaid Advantage is not good for cancer.

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Hello.... Seems like a lot of folks here have some confusion re: part B and Part D... Drugs administered in an MD's office and provided by same covered under part B generally. Oral Meds under part D.... Medigap is a good choice with Ca since it allows you to go to any MD you wish that accepts Medicare and pays the 20% coinsurance for in office chemo and injectable drugs... but plays no part in Part D. It's the drugs covered under part D that are my concern currently..... I am planning on switching out of my Medicare Advantage Plan to Original Medicare with a Medigap soon.......If you are going to retire early I HOPE that you are able to keep your current drug plan or you will have a problem since you can't go on Medicare until 65 ( or are you declared disabled??

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Ah, was referring to social security early retirement, but Medicare kicks in at 65 years old.

I'm not on social security disability (SSDI), although, before in time if diagnosed with Advanced Prostate Cancer Metastatic Stage 4 (PCa) qualified disability. But, now, SSDI will evaluate if ADT is working, then no disability.

When the cancer progresses (castrate resistance) then SSDI will be qualified. Now, this if from my SSDI research qualification. If someone has definitive evidence of actual qualification please advise.

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I have absolutely no knowledge of this, but others have said if you go from advantage plan back to regular medicare you may lose pre-existing medical status. Don't know but was said on this site there is a loop-hole in Obama Care. Obama Care may be gone in future? Check it out. Be careful. I have Kaiser Advantage. As my sole income is Social Security (I'm 68), I qualify for Kaiser Medical Assistance so only pay premiums. $20 month, added dental and vision for $20 month in case of ONJ. So Xtandi and everything is paid for.

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The people who get the most screwed in this system are those that made enough money to have some quality of life but fell quite short of " well to do" in retirement they have too much to qualify for subsidies but not nearly enough to pay the cost of these outrageously priced drugs.... As I have said before I really will NOT be able to afford to remain alive if the first line generics don't work for me.... all the assistance programs I have checked out are either closed to Prostate Ca or will not fund those on Medicare Part D ( imagine!!.... I will have to drop my drug coverage in order to qualify for drug coverage under a Patient Assistance plan.... there is definitely something wrong here).... but enough about this....everyone has their own problems

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Yes. The "system" sucks. No way I can go to Europe for treatment or even to a center of excellence or see the doctors who are the stars in our little twisted world. But I am pretty much guaranteed Standard of Care. Sure wish treatment was the same for everyone. But in England you can't get blah, and in Canada it's a 8 month wait. And so on and so on. It is the turn of the screw. Here's hoping you find your way through this maze. Enjoy.

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Medigap plans can still reject you for pre-existing conditions.

Instead of fixing that, the current administration is in the process of removing pre-existing condition protections from everyone else.

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Depending on what State you are from this is true... in NYS ( my home) I CAN switch from an advantage plan to a medigap without being penalized ( no pre-existing issue penalty) in many states if you didn't buy your medigap during the first 6 months of your medicare eligibility you stand a chance of being either rejected or, at the least, having coverage held for 6 months on any pre-existing condition ( and they are VERY liberal in their definition of Pre-existing condition ( ie...any condition that you even SOUGHT the advice of an MD about) REMEMBER.. Medigaps will only cover those aspects of your treatment that fall under part B ( ie...injections or chemo received in an MD's office ) it does not cover oral medications such as Zytiga...these fall under Medicare Part D ( or one's commercial drug plan).... It is VERY helpful to have advanced prostate ca Dx'd BEFORE one is on medicare as commercial insurance pays WELL better than part D for all these medications and most Patient assistance programs only offer help to those that are under commercial insurance ( this I can make NO sense of)

Rule of thumb.... as best as I can determine.... if you are advanced.... keep your treatments confined to those that can be administered in an MD's office if you are on Medicare and have no VA or Retirement drug plan additional assistance...

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Hmmm very interesting.

Any other states that are like this?

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Don't know....

BTW... you didn't mention if your treatment is out of MD's office or if you have any Oral Drugs... would REALLY like to hear about a plan F that covers oral medications.... Know they had them in the " old days" but no longer to my knowledge.

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Correction... Trump is for protecting pre-existing conditions in the upcoming Republican healthcare plan proposal. I think the US populous has made it very clear that this provision has to be in any national plan.

latimes.com/politics/la-pol...

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Pay attention to what he's doing not what he says.

Thanks for providing evidence in support of what I said.

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You are using the word "Medicaid" when I think you mean the "Medicare" program for retirees. Medicaid is for people who are impoverished of any age. I don't know the typical income level for Medicaid in most states. Medicare Advantage replaces traditional Medicare coverage for 65+ folks and is available in most states. Here in Florida I am enrolled in the AARP/United Healthcare-PPO Program which incorporates drug coverage. I am very satisfied with it but I have yet to use it on the new and very expensive second-line ADT drugs.

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Yes!

I always do that, mind you I've worked as a software consultant for CMS many years.

I've heard Original Medicare with Medigap is better for retirees with pre-existing cancer diagnosis. But Tommyj2 explained, Medigap does not cover Part D, I think...

Had plans move to Philippines, as my wife there has a successful business. Now, cannot, because Medicare is useless overseas.

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Ouch.

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Dr. Myers really hated AARP for how they treated coverage for prostate cancer treatments. Somewhere inside they have or had a doc in charge of prostate cancer treatment review with a bad attitude towards aggressive treatment of prostate cancer, apparently.

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Xtandi on Medicare D thru United Health until it failed at 15 months was costing us 560 dollars monthly plus close to 5,000 annually for donut hole. Found no subsidies,,,from anyplace.

Warning. Be very careful with Medicare D. Your Physician likely does not know or care a wit about the donut hole. If you start an expensive drug say in November you will get hit with the donut hole,,,and then right again in January as that is considered a new year. Thanks to your government lawmakers that cannot see beyond their next campaign contribution.

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Well said.

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campaign contribution = BRIBE

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Should be no donut hole with xtandi. After the initial stage $( 3000) it goes right thru donut hole to catastrophic phase.Now only co pay of 560.

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As I recall my donut hole payment was closer to 5,000 November of 2017 when beginning Xtandi. Then 560 monthly. The real farce was that January 2018, 2 months later, I was hit with donut payment again.

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1 good point.

2 we get the government we deserve, don't we. Those over 65 overwhelmingly vote for the very group of politicians who are dedicated to stripping away coverage for those over 65.

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if you have medicare only with your drug plan somewhere in the neighborhood of 10k a year...but if you fall in a certain income range drug maker will help out.

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My Dad’s MO had his Clinic pharmacist apply for grant for my Dad to get Xtandi..it went through and he receives it free:)

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Thank you... do you know if your dad is on Medicare Part D??

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He has Medicare with no prescription coverage and as a secondary AARP-United Health care.

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My guess is that he is on a Patient Assistance Program through the manufacturer..... This is one of the few times where not having any kind of prescription coverage might have worked in his favor.... I'm glad for both of you!!

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Get part d thru Medicare. Covers prescriptions.

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That is true drugs are covered but tier 4 and tier 5 drugs like Xtandi and Zytiga will cost you thousands. Then every year you have to make sure your part D plan will continue to cover your drug.

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Yes, exactly.

I’m sure your Doctor will be able to assist you in the medication area as well. Best of wishes to you!

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Try the Patient Access Network. They can help with very expensive drugs if you qualify.

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Looked into and got medicare A&B then United health care supplemental through AARP. then looked at Part D from several providers, with Xtandi as example I pay first $4000 or so then after 5100 pay 1/4 until about $ 6000 cap and they pay the rest. One perscription and you are good. Pay monthly premiem and you are good. only 10,000 a year out of pocket. Or $1000 per month. That could be a killer for some of us but if you don't have money in this country you die. I skipped part D and have VA as a disabled Vet and get it for $8. Good luck on drug pay from somewhere.

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Certain younger or poorer or less-insured individuals who may meet eligibility requirements might be able to get assistance for Zytiga in the USA from the Johnson & Johnson Patient Assistance Foundation, Inc. Here's a starting point, and a Form:

jjpaf.org/eligibility/

jjpaf.org/resources/jjpaf-a...

Similarly, some people might be able to get some assistance for Xtandi, through either their Xtandi Patient Savings Program or their Astellas Patient Assistance Program. Here's their Patient Assistance starting point:

astellaspharmasupportsoluti...

Charles

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Good resource information...... thank you for the response

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The program for zytiga is CarePath through Janssen which I used, but have since switched to generic made by Mylan and I got co pay assistance through Acreedo/Express Scripts. Unfortunately most of those manufacturers programs only apply to those with private insurance and you may not be eligible with Medicare.

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I have CarePath through Janssen for co-pay on apalutamide (Erleada) as well. I don't pay anything.

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you are exactly right.... most of the pharmaceutical assistance plans pay for those with private insurance when it's the people with medicare part D that need the assistance the most...VERY Frustrating as I simply CANNOT afford these meds.... but... since I don't yet know what meds are going to be recommended I will have to take my chances on insisting upon a first run with those drugs that are the least expensive..... Hell I won't know until Monday IF I have bone mets but the odds more than favor it......

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I have discovered that on lesser medications it is cheaper to buy direct than to use Medicare Supplemental insurance.

You can't do that with these pricy medications though.

But I am fairly certain that the insurance companies through these formulary managers are getting a huge portion of the markup.

That's a lot of money when talking about these expensive drugs.

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People in this forum seem to have Supplemental insurance and Part D somewhat confused..... I agree that it can make sense to avoid Part D and buy direct on less expensive drugs but those covered under Supplemental plans( Part B covered drugs) this would not be the case as this is specifically WHY one buys Supplemental insurance ( aka...Medigap : )...... as far as drug markups go.....what really needs to be said.... We are ALL being gouged mercilessly...

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I have a supplemental medigap insurance plan. Currently it is cheaper to purchase my meds using GoodRx discounts than to use the medigap insurance

Why would that be?

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If you reside in NYS look into Epic coverage otherwise the Dr's office should help finding a grant and if grant money is all gone, help from the manufacture should be available

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My husband got his Lupron and Flomax covered by the VA since he has 100% disability due to Agent Orange exposure. The VA said they would cover our private oncologist at Mass General and all therapies he prescribed. Well, no. Despite several VA people saying the Zytiga would be covered, in the end they would only pay for Xtandi. This runaround took over a month. Finally, someone in the Mass General financial department found a grant for my husband, and that's how the Zytiga is being paid for right now. We do have the highest level Part D, so maybe some of the cost is coming out of that as well. We don't know the details. Our brother-in-law, who also has advanced prostate cancer, was prescribed Xtandi and when told his cost was going to be around $5000 a month despite his Part D insurance he told his oncologist at Yale that he just won't take it. Within weeks, he got grant money and pays zero! Our medical system, is a nightmare.

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There are clinical trials. I'm doing one at NIH. They pay for flights, meds tests, after the first visit. They also pay for living stipend, for hotel and food if accepted into a clinical trial.

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We were able to get my dad who is on social security and eligard his drugs for free. Ask your doctor about the drug discount program or better yet contact the drug manufacturer to see if you qualify for discounts. I have part d and was making too much to qualify. $10k per month before the insurance, with part D and supplements just a $10 K deductible and $600 a month 😜😜😜😡😡

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I am on Xtandi and have Kaiser Medicare Advantage Plan. I pay $30 for a month's supply. It sounds like not every Medicare Advantage Plan is the same. For all my cancer care my out of pocket expense is capped at $2500 per year. Last year I hit the cap by July and had no further co-pays until January 1st.

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pretty much same here. I too am on Xtandi ( lupron - zometa ) and I have the Kaiser plan that is offered to retired government workers ( worked 32 years in V.A. and Military health care ) and I pay $100 a month for my Xtandi. I have zero other expenses now tho, not even for an office visit anymore. I'm in Kaiser several times a month. ( blood tests, infusions, office visits, pick up prescriptions, scans etc ).

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We have insurance but my husband is totally disabled and at 62 next month and on SSD for almost a year and a half, Medicare kicks in June. His oncologist told us they would work to get as much coverage as possible and a grant. We pay s small co-pay. But when Jan crept up on us a deductible kicked in. My husband called Jansen as he’s on Zytiga and they were more than willing to cover up to 12k. When the 12k runs out we should be back to almost full coverage. Not sure what will happen in June when Medicare starts. But Jan, feb, March we only paid a $10 copay. Call the manufacturer. They will try to help. We are not poor and we are not wealthy. But a few thousand a month is not doable for us.

Good luck. Talk to your doctor for help as they know how to get it through. And call the manufacturer

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There’s a patient assistance program that the manufacturer of Xtandi offers, I suggest you contact them. You may find yourself paying zero.

Ed

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I became eligible for Medicare Feb 1 and declined it, staying with COBRA. Luckily we can stay on that indefinitely. Once we pay our out of pocket max we are done for the year. Medicare part D has a $5500 deductible along with a 5% copay (about $500/mo) with no out of pocket max. Just the copay alone would be $6000 a year!

Our tax deductible on our taxes last year was over $27000 😲

Call Xtandi they have foundations, or, they will have you submit a short financial page so they can reduce your amount owed.

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If you don't mind me asking, how are you able to stay on COBRA indefinitely? When my husband lost his job many years ago there was a limit of 18 month, I believe. He plans to retire as soon as he turns 65 & we thought Medicare would pay everything after his out of pocket was met (we were thinking approx. $7,000). If he could stay on COBRA, sounds like that would be better, since his out of pocket yearly is just $6,000 & that includes RX coverage.

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This came to me for some reason..... I'm not the person who made this statement.... Frankly I don't know how someone can stay on COBRA indefinitely myself.... One CAN stay indefinitely on an affordable care plan indefinitely but the price would go up substantially after losing subsidies if one is Medicare Eligible..... but there will be Medicare penalties for the time you are not on medicare.... IF one has advanced Prostate cancer and CAN stay on COBRA...sounds like a good idea on the face of it since Pharmaceutical Assistance is generally meted out to those who are on commercial insurance NOT Medicare Part D.

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The penalty is peanuts like $15 a month more for every year I decline it.

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There are 2 different types of COBRA, one is a state cobra that is for companies under 50 people. Luckily I was in that group. I can stay on indefinitely. But as I mentioned we pay the premium every month and high deductibles. It’s by far our biggest expense every month. Ridiculous actually

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I have traditional Medicare part A and B with Blue Cross Blue Shield medical supplement Plan F plus Medicare Part D Prescripton Drug coverage. Part A and B and Plan F have paid for all cancer care. Just make sure you use providers who “accept assignment of Medicare as full payment “ For expensive oral prescripton drugs like Xtandi that come under Part D my medical oncologist has been able to get me in programs which pay the costs of such oral prescription drugs. I hope this is helpful.

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Wow, that sounds great! We need to start figuring out what coverage my husband needs for his PCa, when he can go on Medicare. May I ask approx. what you have to pay monthly in premiums for ALL that coverage (sounds like you have all the bases covered)? Is there an out of pocket yearly costs and if so how much? Thanks for your help, this is all so scary to think money can keep my husband from getting the care he needs!

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My monthly costs is $485. Medicare.gov is an excellent easy to use site to figure out what your costs would be.

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That sounds way more reasonable than I thought it would be for all that coverage! Does that mean the out of pocket per year is high? Sorry to ask personal questions on money, but I was up all night worried my husband won't be able to retire at 65 as we planned and I don't know how much longer he can keep going at his job...he travels so it make the insomnia even worse, which henders his body from getting the rest he needs! I see you said Medicare is an easy site, but not knowing what you'll need to cover everything that comes up with his cancer, makes it so confusing to me to know which plans he'll need! Knowing a total yearly out of pocket would really help! Thank you so very much for your help!!

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I am not an insurance agent so I can’t really give you advice on insurance. I can only speak from my experience that having traditional Medicare A&B coverage with medical supplement plan F has covered virtually all of my cancer treatment expenses since I reached age 65 and went on Medicare. Before that I had private insurance with high premiums, substantial deductibles and co-pays. You may want to consult with a licensed health insurance agent you trust to go over your particular situation with you. Your medical oncologist should be able to point you to programs that pay or help pay for expensive cancer treatments and drugs.

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If all your treatments are being administered in an MD's office I can see where that would be true... If you are receiving Oral medications I would be very surprised unless you have a Plan F that I have never heard of before..... I'm very familiar with the NY State system of Medigaps... can't speak for coverage in other states...

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Right. Oral medications taken outside the doctors office,such as Xtandi, come under Medicare part D prescription drugs and can be very expensive. That’s where my treating medical oncologists have come through for me and got me into programs where these drugs are without cost to me.

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Thanks! Unfortunately his MO is a great MEDICAL doctor but wants nothing to do with billing and what things cost... so NO help there, already tried that! I understand you can only give your own experience and I really appreciate you sharing! With all the plans you have, are you willing to share what your yearly out of pocket limits are?

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You can look that up on Medicare.gov for traditional medical care parts A & B, Medicare supplement plan F and the other medical supplement plans, and Medicare Part D prescription drug plans. The out of pocket to you will vary based on your state of residence, age, the plans you select, your treatments and the prescription drugs you take. The $485 per month figure I gave you is just the costs of premiums for the plans I have selected. You really should take the time to familiarize yourself with the Medicare.gov site.

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I received a grant for this year on Xtandi however it would have cost 3000 the first month and 500 a month the rest of the year....then it starts over...Duke said when the grant runs out they will run my financials with the drug maker...Curious note ...the drug maker essentially wants your permission to run a credit check to make a determination not tax return...anyway Duke was going to handle it all. Hope this helps....Understand your anxiety

Blue Skies

Sky King

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Who do you see at Duke? I am with Dan George...

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Tian Zhang ....going next week for a blood draw....and quick meet...

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I read somewhere that the donut hole goes away in 2020. Fingers crossed.

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Just googled and read some stuff about the doughnut hole going away. Didn't understand anything. Just a bunch of mumbo jumbo saying look what we did for you. Nothing. Hope things work out.

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I was on Zytiga for 3 years and Xtandi now for 5 years. Many Oncologist"s offices have a patient advocate who can work with you on securing a grant. I work with my specialty pharmacy's advocate department. They search for grants and help with the paperwork. I'm on Medicare and have a supplement. I have never paid a co-pay. My current co-pay for Xtandi would be over $500 a month if I didn't have a grant.

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That is exactly correct!

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Donut hole for generic Zytiga is approximately 2200. The generic monthly is about 375 co pay for Medicare part D.

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Here in British Columbia, Canada, all medication for cancer treatment is provided free by the BC Cancer Agency. I believe it is the same in all other provinces too.

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