Stop zytiga/prednisone at 24 months required?

Posted by jeffgoblue @jeffgoblue, 1 day ago

I am 77 yrs old. Diagnosed with 3+4 Gleason, PSA = 12, which metastised to 3 pelvic nodes. Following 25 radiation treatments I have been on on eligard with zytiga/prednisone for 18 months. PSA has been steady < 0.1 for 15 months. Liver values are normal, bp and potassium levels are controlled, glucose = 106. I do have fatigue which limits daily activity somewhat. My oncologist wants to stop the ADT and zytiga at 24 months and just monitor PSA going forward and take necessary steps if there is an increase. Why not stay on current treatment as long as possible?

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You don’t want to stay on the treatment as long as stopping it doesn’t cause your PSA to rise. You’ve had a significant amount of time without your PSA rising, So it’s a good time to try it out.

I am 77 and stuck on ADT for 9 years and Zytiga followed by Nubeqa for 5 years. I have BRCA2 and if I stop taking those drugs, my PSA starts rising very fast.

You are in a great position, Staying on those drugs, too long can cause castrate resistance, Which shortens median survival to two years. Staying on the drugs long-term can also cause your cancer to become neuroendocrine prostate cancer. Something that gives you less than two years of survival.

Get off the drugs and see how your PSA reacts. Get tested every month or every three months to see if your PSA starts rising you can Go back on the drugs if that happens.

Zytiga Is a very difficult drug on your system. I never had high blood pressure but after being on it, I am now on three different medications twice a day for high blood pressure. I’ve also had four afib events one of them landing me in the hospital for four days. You don’t want to stay on Zytiga if you don’t need to. It also caused me to have serious hot flash problems, which required to use another regular drug treatment.

Make sure to taper off the prednisone over a long period of time. Getting off prednisone, too quickly, can cause major fatigue problems, which usually hit in the afternoon when you have to go to sleep you are so tired. Some doctors don’t taper off over a longer period of time and it really causes fatigue. I can tell you from personal experience how serious that fatigue can be. I never had fatigue from ADT but tapering off prednisone too quickly, sure did give me a problem. This was discussed during one of the prostate cancer weekly meetings at ANCAN.org. A number of people in the meeting had the same problem I did from tapering off too quickly, Major afternoon, fatigue.

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My husband was on Zytiga with prednisone for three years and it kept his Stage 4 prostate cancer in remission. His urologist at Mayo and GU oncologist in Indianapolis said to stay on it until it quit working, so he did. They never mentioned a need to stop before that point.

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Profile picture for lag @lag

My husband was on Zytiga with prednisone for three years and it kept his Stage 4 prostate cancer in remission. His urologist at Mayo and GU oncologist in Indianapolis said to stay on it until it quit working, so he did. They never mentioned a need to stop before that point.

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My plan was to stay with the zytiga/pred/eligard as long as possible since it is working thru 18 months and I am dealing with the side effects. Can I infer your husbands psa began rising? Doesn't this indicate castration resistance, making the follow-up course of action more complicated?

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Profile picture for jeff Marchi @jeffmarc

You don’t want to stay on the treatment as long as stopping it doesn’t cause your PSA to rise. You’ve had a significant amount of time without your PSA rising, So it’s a good time to try it out.

I am 77 and stuck on ADT for 9 years and Zytiga followed by Nubeqa for 5 years. I have BRCA2 and if I stop taking those drugs, my PSA starts rising very fast.

You are in a great position, Staying on those drugs, too long can cause castrate resistance, Which shortens median survival to two years. Staying on the drugs long-term can also cause your cancer to become neuroendocrine prostate cancer. Something that gives you less than two years of survival.

Get off the drugs and see how your PSA reacts. Get tested every month or every three months to see if your PSA starts rising you can Go back on the drugs if that happens.

Zytiga Is a very difficult drug on your system. I never had high blood pressure but after being on it, I am now on three different medications twice a day for high blood pressure. I’ve also had four afib events one of them landing me in the hospital for four days. You don’t want to stay on Zytiga if you don’t need to. It also caused me to have serious hot flash problems, which required to use another regular drug treatment.

Make sure to taper off the prednisone over a long period of time. Getting off prednisone, too quickly, can cause major fatigue problems, which usually hit in the afternoon when you have to go to sleep you are so tired. Some doctors don’t taper off over a longer period of time and it really causes fatigue. I can tell you from personal experience how serious that fatigue can be. I never had fatigue from ADT but tapering off prednisone too quickly, sure did give me a problem. This was discussed during one of the prostate cancer weekly meetings at ANCAN.org. A number of people in the meeting had the same problem I did from tapering off too quickly, Major afternoon, fatigue.

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Thank you for the response and recommendation. I was aware of dangers of quitting prednisone cold turkey and will work with doc when it comes time to stop. Are you aware of any other resources regarding the the 24 month limit for zytiga? Sounds like you would you also advise genetic testing, although I have no known living or deceased male relatives with this condition

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Profile picture for jeffgoblue @jeffgoblue

My plan was to stay with the zytiga/pred/eligard as long as possible since it is working thru 18 months and I am dealing with the side effects. Can I infer your husbands psa began rising? Doesn't this indicate castration resistance, making the follow-up course of action more complicated?

Jump to this post

Yes, the PSA upward trend is how we knew the cancer had recurred, which was then confirmed by bone mets on scans. It is unclear at what point he became castrate resistant. The course of treatment always gets more complicated with each recurrence, it seems, but so far the cancer still recedes a bit with each treatment series.

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Profile picture for jeffgoblue @jeffgoblue

Thank you for the response and recommendation. I was aware of dangers of quitting prednisone cold turkey and will work with doc when it comes time to stop. Are you aware of any other resources regarding the the 24 month limit for zytiga? Sounds like you would you also advise genetic testing, although I have no known living or deceased male relatives with this condition

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There is no 24 month limit for Zytiga. I was on it for 2 1/2 years. Being on it for more than four years can cause about a 5% chance of neuroendocrine.

Being on it along with ADT can extend the amount of time before you become castrate resistant.

The problem with Zytiga is more the affect it has on the heart and the rest of the body. In the 2 1/2 years, I took it. I was only undetectable for one month. It did keep my PSA low however, below .7.

I switched to Nubeqa Which is so much easier on the body and doesn’t cause the brain fog that Zytiga can cause. As a result, I’ve been undetectable for 22 months.

Getting an hereditary, genetic test is a good idea. If you have certain genetic issues, there are new drugs to treat them. You can get one free here

Prostatecancerpromise.org

They will send you a spit tube and in about three weeks a genetic counselor will call you to discuss the results. Don’t check the box to have your doctor involved. In that case they won’t send anything until they speak to your doctor.

REPLY
Profile picture for lag @lag

Yes, the PSA upward trend is how we knew the cancer had recurred, which was then confirmed by bone mets on scans. It is unclear at what point he became castrate resistant. The course of treatment always gets more complicated with each recurrence, it seems, but so far the cancer still recedes a bit with each treatment series.

Jump to this post

If you are on ADT and your PSA starts rising at that point you became castrated resistant.

REPLY
Profile picture for jeff Marchi @jeffmarc

You don’t want to stay on the treatment as long as stopping it doesn’t cause your PSA to rise. You’ve had a significant amount of time without your PSA rising, So it’s a good time to try it out.

I am 77 and stuck on ADT for 9 years and Zytiga followed by Nubeqa for 5 years. I have BRCA2 and if I stop taking those drugs, my PSA starts rising very fast.

You are in a great position, Staying on those drugs, too long can cause castrate resistance, Which shortens median survival to two years. Staying on the drugs long-term can also cause your cancer to become neuroendocrine prostate cancer. Something that gives you less than two years of survival.

Get off the drugs and see how your PSA reacts. Get tested every month or every three months to see if your PSA starts rising you can Go back on the drugs if that happens.

Zytiga Is a very difficult drug on your system. I never had high blood pressure but after being on it, I am now on three different medications twice a day for high blood pressure. I’ve also had four afib events one of them landing me in the hospital for four days. You don’t want to stay on Zytiga if you don’t need to. It also caused me to have serious hot flash problems, which required to use another regular drug treatment.

Make sure to taper off the prednisone over a long period of time. Getting off prednisone, too quickly, can cause major fatigue problems, which usually hit in the afternoon when you have to go to sleep you are so tired. Some doctors don’t taper off over a longer period of time and it really causes fatigue. I can tell you from personal experience how serious that fatigue can be. I never had fatigue from ADT but tapering off prednisone too quickly, sure did give me a problem. This was discussed during one of the prostate cancer weekly meetings at ANCAN.org. A number of people in the meeting had the same problem I did from tapering off too quickly, Major afternoon, fatigue.

Jump to this post

What did you do for low potassium while on zytiga/prednisone. I am on potassium chloride supplements (10meq) 3 times daily and my potassium level remains below normal. Daily diet is “typical” consumption of bananas, potatoes, etc. Also what combo of bp drugs worked best for you during your zytiga?

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Profile picture for jeffgoblue @jeffgoblue

What did you do for low potassium while on zytiga/prednisone. I am on potassium chloride supplements (10meq) 3 times daily and my potassium level remains below normal. Daily diet is “typical” consumption of bananas, potatoes, etc. Also what combo of bp drugs worked best for you during your zytiga?

Jump to this post

Eat more bananas. They are high in potassium.

When I told my oncologist, I was eating half a banana a day she says I should be eating a whole one.

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