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Advanced Prostate Cancer
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Affordable Meds

Hi, I’m new to this post. My husband has advanced prostate cancer which has spread to his spine. This is cancer that has come back, he initially had Lupron shots and radiation with seeds. Now they want him on an ADP regimen and he’s had his first Lupron shot aweek ago. His doctor wants him on Zytiga. We just received a call from the doctor’s office that Medigap insurance won’t pay for the Zytiga. She said it would cost us $10,000 a month. What a blow! How are most people paying for this? We certainly can’t afford that and would appreciate any advice you have. Thanks so much! I’ve enjoyed reading all your posts.

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What is the reason they will not pay....Lupron/Zytiga is an FDA approved first line treatment...also there are programs out there that help pay for meds....most guys up here pay anywhere from $0 - $300 a month.....check with the drug manufacturer as they usually have a program to help pay the costs insurance won't pay

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Thank you for that information. My husband had just received the call that his insurance wouldn’t pay but I’m not 100% sure what the reason was. The drs office is still working on helping us but this support group was so comforting to me I thought I would ask for advice right away! Thank you gusgold I feel better already!! I’ll let you know the final result.

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Jansen pharmaceutical has discount coupons. Get in touch with them. I was fortunate that with my insurance it was only a $25 copay. Good luck. I hope you get some assistance.

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Thank you so much. We will check out Jansen pharmaceutical. Appreciate the info.

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Ours wouldn't pay either but the company has special programs if you qualify that helps pay most of the cost. We still had to pay about $1000 a month but it wasn't for long. The drug not only made him very sick, but also didn't work for more than a couple months. Best of luck.

Charlean.

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Charlean, that is heartbreaking. How are you both doing?

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My husband passed away from the cancer. His cancer was very agressive and most of these expensive treatments did little except to make him miserable. I hope you have better luck.

Charlean

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I am so sorry you lost your husband. I think it’s a fear we all face. I hope you’re doing okay. Thank you for taking the time to respond to my post. It was very thoughtful of you to help me with information. You take good care.

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I am doing much better. The stress of all that we dealt with caused me to become very ill with autoimmune issues so I am doing all that I can to take life much more slowly these days. I have no choice. Take care of yourself along this path. We as caretakers, often neglect ourselves and suffer the consequences down the road. I wish you the best. I pray nightly for all those on this site.

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Oh Charlean, can only imagine the toll your husbands APC took on you. The emotional highs and lows and STRESS can be debilitating. You are right, it’s a good reminder as care givers to take care of ourselves. I’m also determined to pray for all on this site too. I’m amazed at how many wonderful people whom I have read or been in touch. It seems those with APC are great and caring people!! You hang in there and take good care of yourself. You’re included in my prayers too!!

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What's frustrating is having leftover drugs that could benefit other people. My husband passed away in November and I still have an unopened one-month supply of Xtandi. Like your husband, Zytiga and Xtandi barely worked for him and both failed after just a few months. They simply made him sicker than he should have been.

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I agree and that's why I sent mine to someone who was using it on this site. Probably not legal but I figured what are they going to do to me? I had unopened bottles worth thousands that I paid a co pay for so why throw them out!! BTW, sorry to hear about your loss. That first year is definitely the hardest. I hope you are doing ok and have lots of support around you. I wouldn't have survived without people around who had been through the same thing as I had. No one else can truly understand.

Charlean

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Reach out to the drug manafucturer’s Acces to Care program. Most will require a statement of medical necessity from the doctor.

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Thank you for more good information. I feel its not hopeless. I will check this out also!

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This one merits a formal appeal. Unless this was bargain insurance, it should pay.

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You have given me hope, I had not realized it was a medication insurers should cover. Thank you!

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Medigap insurance does not pay for drugs. Your husband’s Part D plan should pay for it. You need to understand his coverage: deductibles, copays , coinsurance, and catastrophic coverage.

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You are so right! I’m learning, I did correct some things I didn’t understand on my original post. Thanks for the education!

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Thanks for the link, we’ll check that out!

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Look the price up in India, I've been getting It there for a long time, and they also have generic .

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How do you go about getting it from India?

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One hears a lot about counterfeit medications ever in more traditional supply chains that are heavily regulated.

How do you protect yourself from counterfeit drugs from such a source?

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Wow, that is interesting. I’ve heard people getting prescriptions from Canada but India is a new one. Is there a website you can share? Thanks

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I was about to write to you Ms seattlegal, when I noticed the post of Polly 092750. So I am encouraged that there must be a route to get the medicine from India. I live in India and the Beast has been after me for the past 6 years. Abiraterone Acetate, which I think is called Zytiga in the US, is manufactured as a generic drug by about half a dozen companies. I have been on it for the past six months. The drug costs about Rs. 20 000 to Rs. 24 000 (US $ 300) for one month, a lot of money for a retired Indian Engineer like me!!!. You can't buy it from a pharmacy for what reason I do not know..I have it supplied by the Regional Business Development Manager of one of the companies. His name is Sethuram (Say-tu-raam) (011) {91} 98840 30390. I am not sure if he can send it to you, for I believe the formula for the molecules is given to all the licencees in India by Johnson under some contract which precludes exports. But Sethu may have some route for small individual retail supply. Please ask him. You will have to speak to him slowly, because while quite proficient in English, he is not used to the American accent and diction. Please stay in touch with me, because I would like to help a fellow sufferer, but I cant buy it and courier it to you, because I shall then be offending the laws of the land. Apart from that I would like to be of help. Best of luck!

Sridhar

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Yes you have got to go to your bank and do a bank transfer to them and you med's will be on there way It was very easy. Thats where I get them.

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Thanks Polly092750! I feel so blessed to receive all this good information!

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Thank you so much Sridhar for such a detailed post. 6 years is a long time and glad you’re staying in front of it!! Will probably find out this week if our insurance will authorize Zytiga. Appreciate knowing about alternative solutions!! You take care!

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On second thoughts please send him an SMS first before speaking to him. If you are going to refer to me, please say Dr. Sridhar, so that he can quickly place me. I can help by asking him if he got your message, and understood it. That way I become a guide for maladies (That is a reference to a book by one of my compatriots living in the US, called Interpreter of Maladies. The protagonist makes a living interpreting the language of the locals affected by various maladies, to an American trained Doctor, who only speaks English)!!!

Good Luck,m'Lady

Sridhar

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Well Dr. Shidhar, I've taken it upon myself to thank you for all of us brothers caught in the web of Pca. Your post is indeed a true display of the camaraderie between nations and cultures trying to beat the damned "MONSTER".

For my limited Hindi I say the formal dhanyavaad, and sugriea.

Since my hobby is humor I wish to say:

You-must-stay (namaste) and I-must-go.

(My guess, you were born in 1953. Correct?)

Good Luck and Good Health.

j-o-h-n Sunday 04/29/2018 12:22 PM EDT

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Thanks j-o-h-h. No I was born in 1940. 53 is my house nr. Dhanywad aur shukriya.

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Darn it! That would have been my next guess. 😊

Good Luck and Good Health.

j-o-h-n Sunday 04/29/2018 2:58 PM EDT

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Your generosity is amazing! Thank you Sridhar.

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The important thing is your husband must get well soon! Pleas keep us posted,

Good luck!

Sridhar

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silverlinemedicare.com

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Thanks Ms. Polly, I did not think the same process as we use here locally would apply to the US. I thought the sleuths (Napoleon Solo and Kuryakin), blood-hounds, and attorneys of Johnson will be lurking to catch one red handed, exporting on the sly a life saving contraband! I wonder if you could use your credit card. It would be easier than having to go to the bank. Surprisingly paradoxically, for some reason I cannot fathom, I can not buy Abiraterone with a credit card.... I must pay cash. And I never have that much cash at a time!!!

Good Luck and best of health

Sridhar

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Thanks PO

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1. Some drugs are covered by by the part A or part B medigap, or the alternative advantage program. These are drugs you get directly from your Doctor.

2. Other drugs are covered by part D drug coverage. Part D is private supplemental insurance. Each insurer in part D has thier own formulary of drugs that they cover. You can appeal their coverage decisions I think. But they can require you to take their favored drugs first.

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Part A , Part B , and Part D are Medicare programs. Medigap policies are supplemental policies for Parts A and B expenses- not for Part D.

Part D is not supplemental insurance. It is the part of Medicare that covers prescription drugs. It is administered by private insurance companies in compliance with Medicare requirements.

Medicare Advantage programs are private insurance programs that encompass Parts A, B, and D.

Comprehensive information about the program and how it operates is available at Medicare.gov.

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"Part D is not supplemental insurance. It is the part of Medicare that covers prescription drugs. It is administered by private insurance companies in compliance with Medicare requirements."

Whatever Part D is, it seems very problematical. I find that they way overcharge me for most of my drugs. It is far cheaper to buy them with goodrx.com coupons than to purchase them with the insurance coverage. And each Part D private insurance company has widely varying formularies with widely varying drug prices.

Shameful.

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So true. We did check GoodRX for Zytiga but they only get a 3% discount. We’re still in the process of finding out if insurance will authorize Zytiga so I kind of jumped the gun with my original post. Thanks

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I agree with you. The last few years of my husbands life, our medical expenses were nearly $15,000 per year.

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Thanks Raymonda100 you are adding to my insurance education. I appreciate the information!

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Hi seattlegal, thanks for sharing your situation. My health insurance covers most of my cost. Regardless, I read that the patent for Zytiga ran out in Dec. 2016. It's only a matter of time before more pharmaceutical companies start making this drug. It takes awhile for drugs to Get made and approved by the FDA. The article said that sometime around October of 2018 was when the price should come down. I hope this helps. I will look for the article and post it here. Keep fighting.

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Thank you grahaminator63. I would appreciate that information. I didn’t know there was a possibility Zytiga might go generic in October. That would be wonderful to know! We sure will keep fighting!!

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Below are two articles talking about J&J requesting a patent extension for Zytiga. That extension got denied so generics should be hitting the market in October.

fiercepharma.com/legal/j-j-...

pharmaceutical-technology.c...

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Thank you so much!!

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Many factors determine your coverage such as age and plan details. Read this en.m.wikipedia.org/wiki/Med... and if needed change insurers during the next annual open period as i did. I've had zytiga and it did not cost extra under Humana, for example. Don't give up!

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I will read your link. It’s good to know from your experience what insurers cover what drugs. This is why I love this site to glean knowledge from you all. Thank you so much. Hope your treatment is going well.

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Hi S gal go to copay.org they are a cancer advocate group that helps with prescription cancer drugs. Also go to various cancer advocate groups for help it is based on your joint income. Best of luck.

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Thank you. This is a website I didn’t know about. We’ll check it out!

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Good Saturday Morning seattlegal,

So sorry to hear--you don't need this to worry you at this time!

I am on Medicare and have Humana as my Part D prescription drug plan. Over the last 5 1/2 years they have covered Zytiga, Xtandi, Lynparza and my "retail" drug cost in 2016 was $312,000 (of course I had substantial copays)!

Back in 2013, when I had a commercial prescription drug plan to augment Medicare, Zytiga manufacturer offered a coupon which was a better deal, but does not work once you have a Medicare drug plan,

As others have said, Zytiga is an FDA approved treatment both before and after chemo, so formally appeal to your insurer.

Best wishes. Never Give In.

Mark, Atlanta

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Thank you Mark. I read your post earlier and it made me feel so much better. Rogerthat also shared Humana paid for his Zytiga. Wow, $312,000. That is amazing. We sure won’t give in. How are you doing with your treatment?

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Hi seattlegal,

Thanks for asking about me. Please look at my bio for a more complete treatment history.

I am currently on a break from chemo and a rechallenge with Xtandi (which I took for about 12 months back in 2015-16 until it failed), is now working a second time! PSA was rising during chemo break, but 3 weeks of Xtandi brought it down from 1.3 to .7--a miracle!

Having severe back/hip/leg pain issues from a compression fracture of L4 disc which we hope will be minimized by a procedure on Monday.

Mark, Atlanta

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Mark, you are amazing! I read your bio, you are a survivor and an inspiration to us. I hope Monday’s procedure goes well. With your low current PSA and other than your L4 disc...are you feeling kind of normal? Thanks for sharing!!

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Good Sunday Morning seattlegal,

Once I get this back fracture repaired, we can again focus on prostate cancer. Diagnosis in September when mets in liver were discovered was not good, but they responded to chemo and, hey, I am not a statistic😃. We have a Portugal river cruise booked for September 2018, so will have to make some decisions soon if we want to cancel with minimal penalty.

Life must go on.

Mark, Atlanta

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No you are not a statistic, you are an encourager and you have helped me tremendously...I will be forever grateful. I’ll be praying you can take that wonderful cruise. It sounds relaxing and the weather should be great! Unfortunately we cancelled a trip to Carmel. It was to be a road trip and my husband didn’t want to be away from home when he started taking Zytiga. (Hopefully that will be soon, thanks for the info on your other post) He read the side effects and didn’t want to be away from home. Mark, you’ve been through the wringer and you deserve some down time.

Marilynne

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Mark, will you be taking the river cruise out of Porto?, We toured Portugal from Sesimbra north to Sanitago, Spain last summer, on chemo, It was my Favorite European country, the food is out of this world. Going to Cornwall in a few months. Seattlegal, I say do all the traveling you can on zytiga, for most of us it had the least side effects of all drugs.

Dan

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That is so good to know, I’ll pass that on to my husband. Glad you had a wonderful trip!

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Not everyone gets those side effects, they are just possible side effects, for me when I was on zytiga, I fished alone on my commercial fish vessel in Ak, same with xtandi. I wish you both the best, enjoy every day.we are all here for both of you.

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Thank you Dan59. You are an amazing man...fishing alone. I know it’s not the same as the crab guys on Deadliest Catch but I bet it’s as dangerous!! My husband will be glad to hear about just “possible side effects.” Love your support!!

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In my case almost none. To such an extent I was wondering if the drug was doing anything at all!! At the end of three months, the PSA which was earlier pointed at the skies, like a NASA rocket, climbed down, more like one of Mr. Kim Jong Un. Only on a few exceptional days an overwhelming sense of fatigue, which would not diminish with lying down sleeping. But these occurred about once in three weeks. Please ask your husband not to worry, he WILL get better,.

Sridhar

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Hi Dan,

Yes, trip is with Viking from Porto. Hope I can make it. Thanks.

Mark

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By all means I would go if you can Mark, these life events are why we even take these therapies ,IMO. I will be looking forward to the stories of your trip.

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My medical oncogist was able to get me into a program where the manufacturer,Astrellas, pays the cost of Xtandi which I have been on since last August. It’s An alternative to Zytiga and like wise very expensive. You may want to check the Zytiga.com website to see if they offer any programs for financial assistance and ask your medical oncologist for assistance getting into one.

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Thanks chascri, I appreciate you sharing your experience. I did update my original post so still am hopeful we will be authorized to use Zytiga. Did you have any side effects on Astrellas?

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I applied this year and was able to get the drug free from the manufacturer because I was low income. I was on Zytiga for 7 months before switching to Radium 223.

4 years ago, I got a bottle covered by Medicare RX Part D drug plan combined with a grant from Patient Access Network Foundation for the first Bottle. Medicare RX Part D drug plan paid 66%, part D and the grant paid the copay. The first bottle immediately put me into the catastrophic coverage range and Medicare Pat D started paying 95% of all drugs after that first bottle. For the remainder of the year, all my drugs were a 5% copay, including Lipitor, Metformin, all of them.

Of note, 4 years ago, I only used half the bottle of Zytiga and stopped it because I had already achieved complete remission PSA less than 0.02 be doing a combination of Provenge immediately followed by Radiation. One of my oncologists said that Zyttiga can cause stubborn resistance after it fails, so I waited until the cancer came back 3 years later before going back on Zytiga.

Zytiga failed 7 months later, and it was true, the cancer met in my bone was very stubborn and I had to do radiation again in the same area. That was my last radiation. Waiting for other options, possibly a clinical trial. I should have sought a clinical trial long before doing any of the above. I think I could have extended my remission much longer. Lesson Learned.

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Wow, you have been through so much. Thank you for sharing. I had no idea about the effects of more long term APC. I’ll be praying abmicro you will be able to get into a trial soon. I know prostate cancer research has a lot of money available compared to other cancers. Hang in there too!!

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Is your husband eligible for Medicare?

Good Luck and Good Health.

j-o-h-n Saturday 04/28/2018 11:30 AM EDT

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Thank you j-o-h-n. Yes, he is on Medicare and I updated my original post which added he does have Cigna in place of Part D. We’re hoping they will authorize Zytiga.

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Seattlegal: Everyone is saying the same: wrong insurance. Unless dr filed the claim for some reason under Medicare/Medigap, which he should not have. Otherwise, it should go to Drug D plan and be covered -- assuming you have a plan. I know, confusing like heck. Sorry.

herb

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It sure is, but I’m learning!! Thank you for your post.

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i too had been trying for zytiga. I wrote and talked to janssen and they told me they didn’t have a program to to subsidize cost. My med part D finally got the cost down to 8500 per year. I kept hearing that there were a lot of grants but I never got that far as husband went into clinical trial. Wondering if anyone had any luck anywhere besides India?

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Hi from Vegas... My husband is in a very similar situation, had seed implants 13yrs ago and it has now moved to his hip/pelvic bones w/a tumor the size of an apricot. He began injections 3 months ago and Zytiga 1 month ago, his tumor has reduced well enough that he dosen't feel it anymore. We were devastated to find that our copay (after Medicare part D) was almost 3k a month. We applied to the drug mfg for assistance and were denied. Fortunately the specialty pharmacy that handles his Zytiga found us a grant that covered our cost for the first 2 months. With those 2 months filled we were in and out of the "doughnut hole" and into catastrophic status w/Medicare, dropping out copay to $530 a month... much more manageable. I know how daunting and scary all of this can be but don't give up, work w/your specialty pharmacy to find a grant. Your pharmacy is the best source of assistance as these grant programs open and close VERY quickly due to the sheer number of people needing help (the grant $'s come and go). Don't give up!

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silverlinemedicare.comThey also have generic and It works

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Is that a Medicare drug plan or something seperate??

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I didn’t know that, thought generics might be coming but didn’t know they are here. I will check out your link. Thank you so much!

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Thank you Saydeebugz, I’m so sorry your husbands cancer returned and so happy to hear his tumor have reduced. Glad you were able to find coverage for your husbands meds. $530 a month is still a lot but sure is more doable than $10,000! Thanks for sharing your experiences with your pharmacy. Hope your husband is feeling well. You two take care!

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Thank you all for your helpful posts. I’m overwhelmed (in a good way) how caring and supportive you all are. I must update and correct some items from my original post. When my husband talked to his doctor’s office regarding the cost of Zytiga, he thought they had all his insurance information since they’ve been treating him for years. He has Medicare and in place of Medicare Part D he has Cigna for prescriptions. He also has Medigap insurance which I know now does not cover prescriptions. I’m learning from your posts I do need to learn about what insurances cover. When I initiated my post it was after we were told our insurance didn’t cover Zytiga and it would cost us $10K a month. I was very upset. Finally, my husband asked did you check with Cigna? They didn’t have that information, so the doctor’s office was on the phone with Cigna and since it was Friday late afternoon probably haven’t heard yet. I feel hope especially from the knowledge and experience you’ve shared with me. Even if they say no, I know we can appeal and now I know there are alternatives. Thank you so much everyone. I am grateful!!

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Cigna should approve and you will pay the normal copays until you hit catastrophic (which is about 1 month of Zytiga) and then you will be charged 5% of the Zytiga retail cost.

Most likely Cigna will have a Specialty Pharmacy to handle these high cost drugs and will arrange overnight shipping of a 30 day supply. Monthly renewals will become somewhat automatic with a phone call. You can get the required prednisone at your local pharmacy. Please keep us updated,

Mark, Atlanta

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Mark, as usual you’ve provided me with invaluable information. Thank you for helping us know what to expect. You’ve helped take some of the stress of that terrible Friday afternoon call! I definitely will keep you posted and hope you’re feeling good too!

Marilynne

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Hi, my name is Lynn, my husband was on Zytiga, we never paid one dime. Who could afford any of these drugs? . When Sam, my husband was in the hospital we met with a social worker there, we only have Medicare and our income is less than fifty thousand dollars a year. We qualified To receive Zytiga for free. Sam is now on a targated therapy drug, he takes three pills a day, the cost of each pill is almost four hundred dollars, we figured if we would have to pay the cost would probably be a half a million a year!!! We found never afford to come close to,paying that. Sam just recently qualified through a grant to get these pills for free. We have been waiting since before this past. Christmas to see if We could get the pills for free. I really dont know how these drug companies can change this amt. of money for these perscription drugs??? The targated therapy drug my husband is on is called Cometriq, I think it was just recently approved by the FDA..

I hope your husband can get the Zytaga that he needs to have. I don't know if any of this information can help you. Also Sams oncologist has a women that works under her in her group that does all the leg work trying to,get a pharmacy to have a grant or get the pills free of charge, for patients. If it were left up to me, I wouldn't know where to start.

Good luck, prayers and best wishes.

Sincerely, Lynn Pa.

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Thank you Lynn. So glad you had help from your doctors office. You are right...insurance coverage is daunting! I have learned some good advice from people like you sharing knowledge and experiences. I sure hope my husband can get on Zytiga too. How are you two doing and is your husband feeling ok? Prayers to you and Sam too!! Thanks for sharing!

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Hi, so nice to hear back from you, I'm so happy I found this site, so many wonderful people and all know what each is going through. Sam was first Dx at age 65, he is now 75 young. He went for all these years with just the hormone needle and a pill called casodex. Cancer came back this past summer with a vengeance. Twelve months chemo, five weeks radiation, kidney failure which he had the nerostomey tubes for five months, Thank God they were able to remove the tubes after radiation and all that chemo etc. his PSA started to double, they found it is now in his LNs. This drug he is on now is that a targated therapy drug It has like all the others drugs some side effects. Mouth sores, fatigue, nausea etc, but all in all so far Sam is able to function.

I'm doing o.k., and thank you so much for asking.believe me I do have my moments. Sam is strong unlike me. Lol!! How are you and your husband doing?? Keep me posted and all of us on this site as to your husband getting the Zytiga. Always know if you feel the need to chat, I'm here for you and I care.

Prayers and hugs

Lynn 💗

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Lynn, it’s unbelievable what you and your husband have been through. So sorry he had to endure so many side effects, he is a trooper! I know this affects you as much as Sam so hope you have a good support system where you are. Sam does sound like a strong guy with a great attitude. I feel privileged to know you through this post! My name is Marilynne and my husband Gary is doing all right so far. He’s kind of starting his journey with APC. I hope he can be as strong as Sam! I will let you know hopefully getting the ok on Zytiga. Have a nice relaxing weekend! I’ll be praying for you both!

Marilynne

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Hi Marilynne, I'm happy to have met you also through this site, we are all going through this together and it's so good to know that we have support here and so many on this site have such great information, I should be more educated on PC After all these years, but I've tried and so many of the articials I've read I don't understand. I even tell Sam's oncologist at our appointments to Talk to me like I'm six years old...Lol!!

It's such a shock when we hear the words you have cancer, I found as time went by, almost ten years already that Sam was first Dx, you do learn to live with it. In the past ten years there were many bumps in the road, but also many treatments, Sam did very well on Zytiga for a long time, your husband Gary will too!! There is no reason you won't be able to get the Zytiga for free or for very little cost. The drug company for Sam's targated therapy drug found a pharmacy that Had a grant, ?? they mail a thirty day supply by FedEx every month. The pharmacy calls us the night before it comes and we have to sign for it.

Take care, have a nice Sunday!! Sending prayers for you and your husband. Keep me posted about getting the Zytiga,

Lynn 🙏🏻💗

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They also have generic in India.

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They also have a generic in India. I did talk to my pharmacy .

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