I’m not familiar with this, but I know people that are.
Ancan.Org Has weekly advanced prostate cancer meetings, and will answer questions about issues like you are having. Their next meeting is tonight at 6 PM Eastern time. If you get there early five or 10 minutes before it starts, you’ll be first in line, They always work with new people first and help them with their issues with their prostate cancer. You have to install GoTo meeting To attend the meetings, It’s available on any device. You can go to their website to find out how to attend. If you install GoTo meeting, just put in answercancer For the meeting name and that will connect you up to the meeting.
Thanks Jeff. We are having a tough time with going off abiraterone + prednisone - very upset stomach with Doug. I don’t think I can make it tonight.
The interesting thing i learned is that having this mutation does not allow abiraterone to work correctly. So now I am wondering why the docs prescribe it. We will see the urologist on the 20th. I will ask the question about AD-V7 and let you know what he says.
You are a treasure. Always keep you in my prayers.
Thanks Jeff. We are having a tough time with going off abiraterone + prednisone - very upset stomach with Doug. I don’t think I can make it tonight.
The interesting thing i learned is that having this mutation does not allow abiraterone to work correctly. So now I am wondering why the docs prescribe it. We will see the urologist on the 20th. I will ask the question about AD-V7 and let you know what he says.
You are a treasure. Always keep you in my prayers.
@ellen45 you cannot just stop taking prednisone. You must taper it off over many weeks.. if you don’t, you will have a lot of fatigue. I’m in an ancan.org Advanced prostate cancer meeting right now and they are talking about exactly that tapering it off over a long period of time
I misspoke. Doug is taking his prednisone every other day for two weeks before he is off of it completely. He is ok tonight. We are watching the series!
I misspoke. Doug is taking his prednisone every other day for two weeks before he is off of it completely. He is ok tonight. We are watching the series!
Ellen, a quick google shows it is a variant of castrate resistant metastatic prostate cancer.
Also, none of the current androgen suppressing/blocking drugs are effective. However, Docetaxel is very effective in this form of prostate cancer; it has been used by many members on the forum. Hope this helps…
Phil
Thanks Phil. I have read so much about AR-V7; I found a great article that said doctors sometimes prescribe the abi an lupron anyhow; the the Docetaxel. We shall see. It is just a long treatment just to learn he will have to start another. He is 82.
@ellen45 you cannot just stop taking prednisone. You must taper it off over many weeks.. if you don’t, you will have a lot of fatigue. I’m in an ancan.org Advanced prostate cancer meeting right now and they are talking about exactly that tapering it off over a long period of time
@jeffmarc Do you have a link to the appropriate tapering schedule for prednisone? My husband took it for over three years with Zytiga. Since stopping Zytiga when it stopped working, he has gone down to 5 mg of prednisone per day. Then he was told by the local medical oncologist to go down to 5 mg every other day. He is so exhausted and weak and has other problems that make me suspect prednisone withdrawal. I don't think the doctor is well informed on prednisone tapering. If you could point me to some resources, I would really appreciate it.
@jeffmarc Do you have a link to the appropriate tapering schedule for prednisone? My husband took it for over three years with Zytiga. Since stopping Zytiga when it stopped working, he has gone down to 5 mg of prednisone per day. Then he was told by the local medical oncologist to go down to 5 mg every other day. He is so exhausted and weak and has other problems that make me suspect prednisone withdrawal. I don't think the doctor is well informed on prednisone tapering. If you could point me to some resources, I would really appreciate it.
@lag
I know of no published tapering instructions that I could give you.
This was discussed months ago, at one of the ancan.org Weekly advanced prostate cancer online meetings. A number of people had problems with stopping too quickly, and as they were talking, I realized I had exactly the same problem, I was exhausted in the afternoon and had to sleep, Something I normally didn’t do.
Somebody that’s on 5 mg needs to cut down to 2 1/2 mg for two or three weeks and then alternate that every other day for a couple of weeks and maybe even cut that in half for a week or two. So many people have this really fast, fatigue problem because they drop it too quickly.
One guy I was working with (Imerman Angels) ended up getting 1 mg prednisone tablets from his doctor so he could taper even more slowly. He was just exhausted after trying to come down from 10 mg too quickly. In his case he had to move up to 10 mg because he was so tired with just five. It took him at least four or five months to taper down.
Thanks Phil. I have read so much about AR-V7; I found a great article that said doctors sometimes prescribe the abi an lupron anyhow; the the Docetaxel. We shall see. It is just a long treatment just to learn he will have to start another. He is 82.
@ellen45 Yes, it’s daunting after all he’s been through.
It’s usually 6 infusions and the SE’s vary greatly from one person to the next.
As with most chemo drugs, the idea is to kill the cancer before you kill the patient- let’s face it, these are cellular poisons!
However, I DO recollect at least one member on the forum who was very debilitated and was ready to throw in the towel; he did a course of docetaxel and did quite well.
Phil
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I’m not familiar with this, but I know people that are.
Ancan.Org Has weekly advanced prostate cancer meetings, and will answer questions about issues like you are having. Their next meeting is tonight at 6 PM Eastern time. If you get there early five or 10 minutes before it starts, you’ll be first in line, They always work with new people first and help them with their issues with their prostate cancer. You have to install GoTo meeting To attend the meetings, It’s available on any device. You can go to their website to find out how to attend. If you install GoTo meeting, just put in answercancer For the meeting name and that will connect you up to the meeting.
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1 ReactionThanks Jeff. We are having a tough time with going off abiraterone + prednisone - very upset stomach with Doug. I don’t think I can make it tonight.
The interesting thing i learned is that having this mutation does not allow abiraterone to work correctly. So now I am wondering why the docs prescribe it. We will see the urologist on the 20th. I will ask the question about AD-V7 and let you know what he says.
You are a treasure. Always keep you in my prayers.
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Hug
1 Reaction@ellen45 you cannot just stop taking prednisone. You must taper it off over many weeks.. if you don’t, you will have a lot of fatigue. I’m in an ancan.org Advanced prostate cancer meeting right now and they are talking about exactly that tapering it off over a long period of time
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2 ReactionsI misspoke. Doug is taking his prednisone every other day for two weeks before he is off of it completely. He is ok tonight. We are watching the series!
Thanks so much in taking an interest in us!
@ellen45
That isn’t slow enough for many. If he has serious fatigue in the afternoon he’s going too fast.
Ellen, a quick google shows it is a variant of castrate resistant metastatic prostate cancer.
Also, none of the current androgen suppressing/blocking drugs are effective. However, Docetaxel is very effective in this form of prostate cancer; it has been used by many members on the forum. Hope this helps…
Phil
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Helpful -
Hug
2 ReactionsThanks Phil. I have read so much about AR-V7; I found a great article that said doctors sometimes prescribe the abi an lupron anyhow; the the Docetaxel. We shall see. It is just a long treatment just to learn he will have to start another. He is 82.
@jeffmarc Do you have a link to the appropriate tapering schedule for prednisone? My husband took it for over three years with Zytiga. Since stopping Zytiga when it stopped working, he has gone down to 5 mg of prednisone per day. Then he was told by the local medical oncologist to go down to 5 mg every other day. He is so exhausted and weak and has other problems that make me suspect prednisone withdrawal. I don't think the doctor is well informed on prednisone tapering. If you could point me to some resources, I would really appreciate it.
@lag
I know of no published tapering instructions that I could give you.
This was discussed months ago, at one of the ancan.org Weekly advanced prostate cancer online meetings. A number of people had problems with stopping too quickly, and as they were talking, I realized I had exactly the same problem, I was exhausted in the afternoon and had to sleep, Something I normally didn’t do.
Somebody that’s on 5 mg needs to cut down to 2 1/2 mg for two or three weeks and then alternate that every other day for a couple of weeks and maybe even cut that in half for a week or two. So many people have this really fast, fatigue problem because they drop it too quickly.
One guy I was working with (Imerman Angels) ended up getting 1 mg prednisone tablets from his doctor so he could taper even more slowly. He was just exhausted after trying to come down from 10 mg too quickly. In his case he had to move up to 10 mg because he was so tired with just five. It took him at least four or five months to taper down.
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Helpful -
Hug
4 Reactions@ellen45 Yes, it’s daunting after all he’s been through.
It’s usually 6 infusions and the SE’s vary greatly from one person to the next.
As with most chemo drugs, the idea is to kill the cancer before you kill the patient- let’s face it, these are cellular poisons!
However, I DO recollect at least one member on the forum who was very debilitated and was ready to throw in the towel; he did a course of docetaxel and did quite well.
Phil
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Helpful -
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