Zytiga

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RE: Zytiga

by Dannic7 on Thu Mar 15, 2012 09:11 PM

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Thanks for the support. I'm on the macrobiotic diet currently. I believe it's helping.

RE: Zytiga

by carebearcutie16 on Wed Apr 18, 2012 08:25 PM

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My father has metastatic prostate cancer (it's in his spinal cord) and he's been suffering a great deal (barely able to get out of bed most days). His doctor started him on Zytiga today. He's on medicare etc... But the copay is still $2500/month for Zytiga. Another one of his many medications is $1000/month. I know that Zytiga has a program to get the medication for $20/month but medicare patients are ineligible. My parents are using most of their retirement money to pay for this... They're not broke (yet) and insured thus rendering them ineligible for most of the programs that I've seen. They also applied through ACS, but they currently don't have any funding. Does anyone who's been though this have any ideas/advice?

RE: Zytiga

by Johnfwf on Wed Apr 18, 2012 09:07 PM

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I have been on Zytiga for over 2 years, on a Clinical Trial for Patients who have not undergone Chemo, I do not know if there are any Trials accepting new participants, but other than being in an Insurance scheme that cover the full cost of treatment, the only other avenue, would be to apply to Johnson and Johnson for treatment under compassionate grounds.

I live in Australia and Zytiga has not been approved for treatment and I cannot see it happening any time soon, at least you are able to obtain this medication, but at US$5000 per month, I guess it is well out of reach for the average person.

As you maybe, aware Zytiga is not a cure, it only offers an extendsion of life, in some people, I am one of the lucky ones, that it has worked for and is still working, unfortunately the are many patients that it has not worked for and they have dicontinued useing it.

I wish you all the luck in the world, that it will work for your Father and you are able to find a way of obtaining this drug in a way that you can afford. 

RE: Zytiga

by carebearcutie16 on Wed Apr 18, 2012 09:14 PM

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Hi John,

Thanks! I'm glad to hear that you're one of the success stories - I'm hoping that my father is as well! His doctor didn't seem to think that there were any active clinical trials going on right now, but I'll have him double check. If not, I'll call J&J again to see if I can get somewhere with them. I hope that the treatment contiunes to work well for you! Best of luck! :)

~Erin

RE: Zytiga

by papa6336 on Mon Apr 23, 2012 04:07 PM

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Dr. Potter, I hope this is something you might help with.  My dad (age 86) has been on Zytiga/Prednisone since March 13.  He was previously on Lupron/Casodex when that combination ceased working.  Dad seemed to improve almost immediately, but began having possible side effects after the 3rd week.  I might add that he had a 10 day regimen of radiation on a spot on his spine during that time as well.  He is dealing with symptoms of terrible weakness, burning and pain in his stomach and constant gnawing hunger, even when he has just eaten, and taste buds that seem to be rebelling -- hardly anything tastes right anymore.  He has been so miserable that he wants to stop taking Zytiga/Prednisone and see if he feels any better.  His oncologist did have him cut back the dosage to 500 mg Zytiga/5 mg prednisone, but that hasn't helped (a week ago).  We know that the prednisone must be tapered off rather than abruptly stopped, but what we can't find out is if there are any complications if he stops taking Zytiga abruptly after he has tapered down the dosage of prednisone?  He's reluctant to stop the Zytiga since his psa did drop from 325 to 250 in the first few weeks, but decided he needs to stop and see if these symptoms go away.  Can you help?

RE: Zytiga

by gerrypotter on Tue Apr 24, 2012 05:05 PM

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On Apr 23, 2012 4:07 PM papa6336 wrote:

Dr. Potter, I hope this is something you might help with.  My dad (age 86) has been on Zytiga/Prednisone since March 13.  He was previously on Lupron/Casodex when that combination ceased working.  Dad seemed to improve almost immediately, but began having possible side effects after the 3rd week.  I might add that he had a 10 day regimen of radiation on a spot on his spine during that time as well.  He is dealing with symptoms of terrible weakness, burning and pain in his stomach and constant gnawing hunger, even when he has just eaten, and taste buds that seem to be rebelling -- hardly anything tastes right anymore.  He has been so miserable that he wants to stop taking Zytiga/Prednisone and see if he feels any better.  His oncologist did have him cut back the dosage to 500 mg Zytiga/5 mg prednisone, but that hasn't helped (a week ago).  We know that the prednisone must be tapered off rather than abruptly stopped, but what we can't find out is if there are any complications if he stops taking Zytiga abruptly after he has tapered down the dosage of prednisone?  He's reluctant to stop the Zytiga since his psa did drop from 325 to 250 in the first few weeks, but decided he needs to stop and see if these symptoms go away.  Can you help?

The side effect of increased appetite while on Zytiga has been reported several times. He could try reducing the dose of Zytiga to 1 tablet (250 mg) daily since it still works at that dose. This dose is being tested at the University of Chicago where the effect of increased absorption with food is being investigated.ytiga has also been tested as a single agent without prednisone so some of the side effects that are due to prednisone can be avoided whentaken as a single agent. Taking a low dose of Zytiga may be the answer.

An alternative approach would be to try salvestrols which are natural anticancer agents. These do not have any serious side effects so are safe to take long term and avoid the side effects of hormonal therapies.

RE: Zytiga

by lesharon40 on Sat May 26, 2012 04:22 AM

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My daddy is taking zytiga and he is hungry all the time. I think it is from the prednisone. He is also having swelling in his ankles, I don't know if that is a side affect or not.I pray for peace for everybody that has a family member taking this medication and dealing with cancer.

RE: Zytiga

by luanamj03 on Mon Aug 12, 2013 05:51 PM

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On Feb 22, 2012 7:43 PM rickyd2000 wrote:

Hi I am taking Zytiga now for 4 months now and it is great, the drug has lowered my PSA from 165 to 3. I am in remission now and in the 7th year of treatment. And I have stage 4 prostate cancer with bone mets. My recommendation is take the treatment.

That is excellent. When my dad was diagnosed with stage 2 last year he was doing well and just last week bc of some leg pain they said it was now stage 4, he has been taking Zytiga just for 3 weeks now, i'm so glad to read your story because i've been crying almost everyday...your story give me some hope. Thank you. By the way did you tak prednisone with it? His dr just has him on Zytiga and thats along with his normal monthly treatment.

RE: Zytiga

by luanamj03 on Mon Aug 12, 2013 06:00 PM

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On Mar 12, 2012 6:17 AM Dannic7 wrote:

Jo,

I'm new to this board and have never replied to an email. However, your message motivated me to respond. I was diagnosed with stage 4, gleason 10, bone mets, with over a 5000 psa. I was give 24 months to live last April at the tender age of 50. I was placed on Casodex, Lupron and Xgeva immediately, but became resistant to Lupron within 6 months. I was put on Zytiga in January and by the 3rd week I noticed that my bone pain has practically gone away. I will get my psa test this tuesday.( currently at 900). I am very hopeful.

Hello,

Just read your post and wanted to check in and see how you were doing? Did the Zytiga work for you?

RE: Zytiga

by luanamj03 on Mon Aug 12, 2013 06:23 PM

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On Apr 24, 2012 5:05 PM gerrypotter wrote:

On Apr 23, 2012 4:07 PM papa6336 wrote:

Dr. Potter, I hope this is something you might help with.  My dad (age 86) has been on Zytiga/Prednisone since March 13.  He was previously on Lupron/Casodex when that combination ceased working.  Dad seemed to improve almost immediately, but began having possible side effects after the 3rd week.  I might add that he had a 10 day regimen of radiation on a spot on his spine during that time as well.  He is dealing with symptoms of terrible weakness, burning and pain in his stomach and constant gnawing hunger, even when he has just eaten, and taste buds that seem to be rebelling -- hardly anything tastes right anymore.  He has been so miserable that he wants to stop taking Zytiga/Prednisone and see if he feels any better.  His oncologist did have him cut back the dosage to 500 mg Zytiga/5 mg prednisone, but that hasn't helped (a week ago).  We know that the prednisone must be tapered off rather than abruptly stopped, but what we can't find out is if there are any complications if he stops taking Zytiga abruptly after he has tapered down the dosage of prednisone?  He's reluctant to stop the Zytiga since his psa did drop from 325 to 250 in the first few weeks, but decided he needs to stop and see if these symptoms go away.  Can you help?

The side effect of increased appetite while on Zytiga has been reported several times. He could try reducing the dose of Zytiga to 1 tablet (250 mg) daily since it still works at that dose. This dose is being tested at the University of Chicago where the effect of increased absorption with food is being investigated.ytiga "" target="_blank" rel="nofollow">http://investigated.ytiga " target="_blank" rel="nofollow">investigated.ytiga has also been tested as a single agent without prednisone so some of the side effects that are due to prednisone can be avoided whentaken as a single agent. Taking a low dose of Zytiga may be the answer.

An alternative approach would be to try salvestrols which are natural anticancer agents. These do not have any serious side effects so are safe to take long term and avoid the side effects of hormonal therapies.

My dad's dr has him only taking Zytiga, not prednisone. Is that ok? Why wouldn't he give him prednisone?

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