How many of you would pay $2200 for a... - Advanced Prostate...

Advanced Prostate Cancer
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How many of you would pay $2200 for a 3 month supply of Zytiga?

bluephi
bluephi
93 Replies

Hi everyone....this is my 2nd post. Diagnosed with pca in September of 2018. Gleason 8 psa was very high. My MO started me on Lupron and Casodex in Oct. 2018. Psa taken on 1/18/19 now (2.0). I am tolerating this combo very well. My ONC wants to switch to Zytiga. Not sure how I will tolerate this combo plus the prednisone. I was told by my insurance company that a 3 month supply of Zytiga would cost $2200. I do have a supplemental cancer insurance policy that pays $40 per day for cancer drugs. Since Casodex and Zytiga block androgens from essentially the same areas (adrenal glands and the tumors themselves), do you think there is any more value in starting Zytiga or should I see how much lower psa will go with Casodex? There are no grants out there for Zytiga from Jansen at this time.

93 Replies
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Tall_Allen

They actually work very differently. The goal is not to reduce your PSA, the goal is to help you live longer with Cancer.Zytiga does that.

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bluephi
bluephi
in reply to Tall_Allen

Thank you... How much longer does Zytiga prolong life vs.casodex?

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Tall_Allen
Tall_Allen
in reply to bluephi

In men with metastatic (M1) hormone-sensitive PC, an anti-androgen + Lupron extended survival by 7 months (median) over Lupron alone. In STAMPEDE, Zytiga + Lupron increased median survival by AT LEAST 18 months over Lupron alone.

onlinelibrary.wiley.com/doi...

nejm.org/doi/pdf/10.1056/NE...

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gregg57

Zytiga is much better than Casodex although they do work differently as TA has said. Casodex is a hormone receptor blocker that has been around for a while. It's been replaced by Enzalutamide which is around 5 times as effective.

Zytiga reduces your male hormones even further than primary ADT such as Lupron by shutting down male hormone production in the adrenal gland. It works very well. I'd say if you have the money and it works for you, it's worth it. Can't take it with you.

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bluephi
bluephi
in reply to gregg57

Thanks gregg57....you can't take it with you

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gregg57
gregg57
in reply to bluephi

I understand that we all have to think about those who will survive us, but it really makes you think: what is money for if not to extend our lives?

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YostConner

Zytiga did very well for me, in my case after primary ADT failed. Interesting you can get a three month supply. My insurance company limited me to one month at a time. I ended up using it for 32 months.

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bluephi
bluephi
in reply to YostConner

Yes....all my meds are a 3 month supply

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hrinard
hrinard
in reply to bluephi

If your a veteran making over 31,000 a month—— it’s only $11.00 per month

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bluephi
bluephi
in reply to hrinard

Not a vet and make over 31k

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Hidden
Hidden
in reply to hrinard

How is it only $11/month for vets? Is that if you are getting care from the VA?

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hrinard
hrinard
in reply to Hidden

You take your discharge papers to the va closest to you ——-sign a proof of income——if your income is low enough then everything is free. They take your photo and you get your card in a week, however, you can get an appointment in urology set up. Doctor will set you up with six bottles of Zytiga and the prednisone. You go online to have your medicines mailed to you. Actually it’s very efficient. Right now it’s $11.00 per month. A 3 month zolidex shot would be a charge of $33.00.

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hrinard
hrinard
in reply to hrinard

I use my va only for the expensive medicines—— I have my own mo.——-get it.?

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hrinard
hrinard
in reply to hrinard

Btw it’s $50.00 to see the va specialists and $15.00 for regular doctor. So it’s not all free

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Hidden
Hidden
in reply to hrinard

Thanks, but my income is too high for any VA help.

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hrinard
hrinard
in reply to Hidden

If you are a vet they will give you Zytiga for $11.00. you don’t have be treated by them. You could be worth millions and they would still give you any expensive medicines you may need for treatment regardless of your high income.

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Hidden
Hidden
in reply to hrinard

My VA benefits are needs based, max income to be eligible is ~$30,000/annual. I’m well above that number. I’ve no service connected disability or other category that gives my any VA access.

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dbrooks_h
dbrooks_h
in reply to hrinard

@31,000 a MONTH

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hrinard
hrinard
in reply to dbrooks_h

When I signed up it was $28,000

1 like
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GoBucks

Do you have private insurance? (not Medicare). If so Janssen has a program that makes your copay $10. Copy & paste then click "I have private/commercial insurance". Takes maybe 10 minutes. Zytiga is a specialty medicine that your insurance company probably wouldn't approve a 90 day supply. Good luck. Oh and to answer your question, yes I'd pay that.

janssenprescriptionassistan...

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bluephi
bluephi
in reply to GoBucks

Thanks for your reply. My MO and his team are working to see if I can get on the Jansen program. If not, I have a supplemental cancer insurance policy as well as my private insurance

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GoBucks
GoBucks
in reply to bluephi

Hmmm....I did this all by myself. Not sure why you'd need MO help. If you need computer help I'd be glad to assist you.

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bluephi
bluephi
in reply to GoBucks

Thanks,,,i have a computer, that the way they work.

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MichaelDD
MichaelDD
in reply to bluephi

My cancer team takes care of everything. I may need to fill out some paperwork but they take it from there and do all the faxing and the follow up until complete. When I talk to my MO on a visit he will always ask me "do you want the team to call and help?" Somehow even when I say no they still call?!! SO appreciative.

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bluephi
bluephi
in reply to MichaelDD

you are very lucky to have a caring and diligent team on your side

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SeosamhM
SeosamhM
in reply to GoBucks

GoBucks is SO right, Blue....you can do this yourself (or your better half, family, etc.) IF you have private insurance... Very simple!

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Hirsch
Hirsch
in reply to bluephi

I think at your income level Jansen should help

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GoBucks
GoBucks
in reply to Hirsch

I don't recall any questions about income.

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Hirsch
Hirsch
in reply to GoBucks

i think if you go through mo route they tell you an income cap..i think when i applied it was in the 60 k range for a family..

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bluephi
bluephi
in reply to Hirsch

Bingo...I heard that number with my onc

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pakb
pakb
in reply to GoBucks

Our MO team does it for us too. No income cap. They had to do it initially I think because it was only approved for mcrpca and my husband isn't castrate resistant.

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AlanMeyer

It's a shame that Americans have to choose between money and life in this way, and that drug prices are so highly inflated. Personally, I'd be happy to pay higher taxes to provide more and better medical care for all of us.

But I digress ...

Alan

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bluephi
bluephi
in reply to AlanMeyer

You are so right. Maybe we should all move to Canada

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MichaelDD
MichaelDD
in reply to AlanMeyer

I'll digress with you...its a shame.

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WSOPeddie
WSOPeddie
in reply to AlanMeyer

It's a shame that big Pharma is so greedy ... and that the same pills that are bucks-deluxe here are cheaper overseas. Never have figured that one out.

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PGDuan

Hi Bluephi, The Zytiga is working for me and has been helpful for many others.

In regards to cost, you may want to check out the pharmaceutical company’s co-pay assistance program. I’m not sure if this helps your situation but it provides assistance with the co-pay such that it limits the patients portion to $10, up to $12,000 per year.

I guess if they can bill insurance companies $150,000 per year, they seem happy to reimburse the patient’s co-pay.

It was very easy to enroll over the phone and they provide an insurance card that has been working for me.

Here is the link.

janssenprescriptionassistan...

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bluephi
bluephi
in reply to PGDuan

Thanks pgduan....my mo and his team are working on Jansen programs and other assistance programs. Hopefully they will find the right one for me.

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monte1111

Maybe check for grants for Xtandi at the same time?

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bluephi
bluephi
in reply to monte1111

That was mentioned. Isn't xtandi more powerful than Zytiga

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gregg57
gregg57
in reply to bluephi

Not more powerful, just a different approach. They both have similar outcomes in terms of survival/progression, etc.

Xtandi can have a fatigue side effect for some that's generally worse than Zytiga. With Zytiga, you have to take Prednisone with it and that can also have problems for some people.

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bluephi
bluephi
in reply to gregg57

Thanks...I heart doctor says it's ok for me. Onc will be following to test for liver and other vital functions

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GeorgeGlass
GeorgeGlass
in reply to bluephi

Do you have any kind of heart or coronary artery problems right now?

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bluephi
bluephi
in reply to GeorgeGlass

Yes...I do have a heart problem. On meds now for that. That was a concern of my MO . They contacted my cardiologist and he said it was ok for me to take.

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HiddenThis reply has been deleted
bluephi
bluephi
in reply to Hidden

Thanks SsamO...,your reply makes plenty of sense to me. As I stated, I also have a supplemental cancer policy as well. The money is not an issue if it means extending my life

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Mkeman
Mkeman
in reply to bluephi

The generics are now showing up in specialty pharmacies. Check “Goodrx.com” for current pricing. My MO added Zytiga and prednisone to Eligard a year ago and PSA has been undetectable since.

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bluephi
bluephi
in reply to Mkeman

Thanks MKeman....but my MO doesn't think the generic would be as effective.

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Mkeman
Mkeman
in reply to bluephi

My MO and cancer center pharmacist thought they would be ok. I hope they are right. Given Medicare, I likely won’t have a choice at next refill.

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bluephi
bluephi
in reply to Mkeman

Yes...I hope they are right too. That may be an option for me if I don't get any assistance

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GeorgeGlass
GeorgeGlass
in reply to Hidden

Do your tumors show up on standard of care scans?

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bellyhappy

Just started Zytiga one month ago. My PSA came down from double-digit to single-digit. FYI, the cost for Zytiga that I am paying is $ 5300 per month. Thank God, my insurance does cover it.

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bluephi
bluephi
in reply to bellyhappy

Yes...you are very lucky. Are there any out of pocket expenses for you in regards to your meds?

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bellyhappy
bellyhappy
in reply to bluephi

So far, not that I know of.

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bluephi
bluephi
in reply to bellyhappy

Ok

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Tippler

In 2017 I sold a very small business, making a little more than $100K. Last September, my first copay for one month supply of Zytiga was $2,890.20! After that, I paid $549.20/month. I was diagnosed in 2018, I couldn't work much. On Jan.7, I called the Pharmacy for my cancer medication. A nice lady said:"I'm glad you called today, not tomorrow, because I might be able to get you a grant based on reported income for 2018". Minutes later she called me back. I received a grant($4.200) that helps me get the Zytiga at no cost to me for the first two months. Soon I will have my taxes done. I will have to send over the second page of my 1040. If my income was as low as I declared, the lady said that they will work on getting me the Zytiga at no cost.

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bluephi
bluephi
in reply to Tippler

God is good..,, I am so happy for you

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RangerTug

I have been on Zytiga for 18 months now PSA is slowly coming down (now 15) from 56 18 months ago. Scans show PC is stable with some reductions was Gleeson 9 and PSA 256 in 2010.

I would go for it.

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bluephi
bluephi
in reply to RangerTug

Thanks....waiting to see if I can get some assistance

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Trinity101

You’re lucky to be able to afford Zytiga, take it!

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bluephi
bluephi
in reply to Trinity101

I am leaning that way. All replys have been very encouraging

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i get mine free when its available

charlie

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bluephi

That's what I'm hoping for

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Schwah

I’m on both for 18 months. PSA down to .01 now for about 10 months. Studies showed that the two together work way better than either alone and the earlier the better. By the way if money gets tight there are a lot of article (including some here) that say 1 pill with food is as good as 2 without. A little risky but better than going without.

Schwah

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bluephi
bluephi
in reply to Schwah

Are the side effects from taking both more pronounced? I did read about taking it with food. I told my MO and he said there are no studies that confirm that

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Trengle
Trengle
in reply to bluephi

Does your MO specialize in PC and is he/she at a teaching hospital? I get the idea your MO may be a generalist in the practice of cancer treatment.

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Schwah
Schwah
in reply to bluephi

I can’t say if they are more pronounced since I have been on both from the beginning. I can say that I lift weights strenuously for over an hour three days a week (under a trainer) and I feel great. Other than occasional stomach ache, reduced libido and getting a little tired sometimes, I would not know I’m on anything . I’ve actually lost weight and gained muscle mass which is unusual. But I pay the price in the gym. By the way lower body fat is associated with better outcomes. No clinical studies on the food but it’s pretty well accepted and much better than skipping completely. My MO is a prostate oncologist who treats only prostate cancer . He calls the combo of Zytega and lupron “the miracle of Zytega” as he’s seen huge advantages in his practice (and in clinical studies) of early use of both together. I urge you to find a way to add the Zytega One way or the other

Schwah

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bluephi
bluephi
in reply to Schwah

I think you are right. I am leaning that way. Cheap price to live

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Hidden
Hidden
in reply to bluephi

Your MO is wrong. Univ of Chicago did a study with low dose taken with a meal. Link: vi3c.org/ It's a small group trial but results show that in the short term at least it is as effective as the 1,000mg fasting.

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lincolnj8

My MO team takes care of me getting Zytiga. If you are not rich, there are programs that will pay for the Zytiga. What my prescription drug plan does not pay for my co relief program does.

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bluephi
bluephi
in reply to lincolnj8

Yes...I am aware of programs that help with payment. MO team is working to find assistance. Not rich but household income is above 100k

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Polly092750

You can get zytiga from India Pharmacy for less then 400.00 for 4 months supply. I have been getting It there for over a year.You will have to go to the bank and transfer funds. Just email them and they will send you all the Info you need (silverlinemedicarepvtlyd@gmail.com)

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Hidden
Hidden
in reply to Polly092750

How did you determine that it's a legit pharmacy and you are getting the real stuff not counterfeit?

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cesanon
cesanon
in reply to Hidden

That's my concern. I wish there was a way to check. Is there any way to do that. Private labs that will do a check?

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Polly092750
Polly092750
in reply to Hidden

Yes It Is real It's ganeric We have been getting it for a long time.

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bluephi
bluephi
in reply to Polly092750

So...it works as well as the real stuff

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jedgar1

I have been on Zytiga a year and was offered to get it almost free through a program at Dana-Farber. I am on medicare with a D plan and just paid for my first prescription in the new year. 2300, Social security picked up 2,800.00 and I am through the donut hole into catastrophic. My refills are around 550.00 I turned down the free program because I could afford it. You had to make under 60k to qualify.

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Trengle
Trengle
in reply to jedgar1

If the free program is thru Janssen I would not have turn it down due to the obscene cost of the drug used to keep us alive. If it was thru a public program I too would have turned it down so the funds could help those that could not afford it.

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jedgar1
jedgar1
in reply to Trengle

That was the situation it was a private program with only so many grants.

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bluephi

Yes...I believe I am the same situation as you are. I do make over 60k, but I would not down down anything free

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Hidden
Hidden

I pay $1,200/ month copay for the generic version don't know what it would be for the brand. Janssen assistance isn't available to anyone on Medicare or medicaid. And my income is too high for the other assistance programs that we found. My income is less than six figures too. I had problems with the SE so my Med Onc agreed with me reducing the dose to 250mg daily taken with a meal, which brought the copay down to $300/month.

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Trengle
Trengle
in reply to Hidden

How has your PSA and mets been since you dropped from 1000 to 250 a day?

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Hidden
Hidden
in reply to Trengle

My next PSA test is Feb 15th, I finish IMRT next Tuesday also. My PSA last Oct was 43.1, the Jan 15th test it was 4.08. My Med Onc believes it should be undetectable once the IMRT has done its thing and I have a month and half on Zytiga. Within a few days after lowering the dose my liver functions returned to normal and BP lowered to normal. The hot flashes at night went from 7-8 to 2-3 so I can sleep again. He did mention that he has several patients who are doing the low dose so he is familiar with that change in prescription.

At this time I have no mets visible, original bone scan showed something on my femur but an MRI summary indicated it is not consistent with PCa so technically I'm not metastatic right now. Next scans will be in a couple of months.

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Trengle
Trengle
in reply to Hidden

Thanks for the information. I have been on 750 per day after my initial 6 weeks of 1,000 jumped my LFT too high. I have discussed dropping to 250 per day but do not have by-in from my MO yet.

When I started Zytiga in Jan 2018 PSA was 152 and 2 weeks ago it was 14.2. It has only dropped 1.0 in the past 3 months so seems to be leveling off but the few mets I have did not change over the past year.

What is your typical meal like when you take your one tablet of Zytiga?

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Hidden
Hidden
in reply to Trengle

I was told to eat a low fat meal: 300 calories and 7 grams of fat. I eat a protein bar (Qwest or Costco) 7 gr fat and 190 cal. along with a glass of apple juice for 110 cal and no fat. Then I wait an hour before any other foods.

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jedgar1
jedgar1
in reply to Hidden

My d plan through aetna wanted 3800 for my first script in january for generic and 1500 a month for the refills

Brand was 2300 first script and 450 for refills i got brand

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bluephi
bluephi
in reply to jedgar1

Thanks jedgar1....sounds like your cost is more than mine. I would take the brand too

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larry_dammit

All depends on how much money you make and have. My parents are on SS and we managed to get them a years worth of Zytiga free. I am lucky as well I am on Xtandi and have a supplementary. Insurance,after a $10,000 deductible it costa me $560.00 per month. Cheap price to stay alive . Hang in there Fight the monster anyway you can

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bluephi

Thanks...you are right. It is cheap price to pay

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FrancescaO

What about common side effects for Zytiga? My 94 year old dad had no issues with Xtandi at all, doctor has now prescribed Zytiga.

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j-o-h-n

So Zytiga cost of $2 ,200. for 3 months = approximately $1.70 per minute (@ 24 hour day for a 30 day month) or .28 Cents per second (@60 seconds a minute LOL).

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/31/2019 5:31 PM EST

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Zee5

My doc's theory is to "ride out" each drug as long as possible. If your Lupron and Casodex are working, stay with it until it stops working. Then switch to Zytiga. You want to have as many "tools" in the "bag of tools" as possible and not use them prematurely. You should ask your doc why he wants to switch to Zytiga so soon.

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bluephi
bluephi
in reply to Zee5

I'm with you....if it ain't broke don't fix it.

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