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bonnerben posted:
I had a radical prostatectomy 15 months ago. Three days later, the surgeon informed me that cancer cells were found in several lymph nodes. Three weeks later, my PSA had gone back up to 7, where it was before surgery. The surgeon stated my cancer was very aggressive, had spread out of the pelvic area, and was at stage four. I went on hormone therapy (Eligard shot every six months) and a daily tablet of 50mg bicalutamide. I also had three infusions of taxatere (sp?) chemo three months after surgery.
My PSA has been 0.0 for the past year, but that will not last. I am having trouble getting good direction from any doctor as to what the next step should be. At some point the cancer will override the medicine, and I will have to change gears. My doctors say things like, "there are new drugs coming on the market" and vague references to clinical trials. I even asked about going to a prostate cancer research center. I was told "my experience is that they just tell you to go back and keep doing what you are doing."
I would really like some direction. I will do anything it takes to stay alive. I am 64 years old, and (except for the cancer) in optimum health. I eat well, attend cancer support group twice a month, attend yoga for cancer patients one hour every week, exercise for an hour every day, and get a therapeutic massage for an hour every week. I am willing to travel anywhere, eat what I don't like, not eat what I like, and take any medicine that will extend my life.
My questions: How long should I stay on my current medications?
At some point, should I get off all medication, and see what happens?
What medication(s) should I consider taking in the future?
Is there any way I can receive Provenge before I reach the stage of "not responding to hormone therapy?" (i.e. terminal)
Is there a good regional prostate cancer research center in the Northwest?
Any other advice on how to fight this thing so I will be on the fifteen year plan instead of the five year plan I am currently on?
I will appreciate any direction you can provide.
My PSA has been 0.0 for the past year, but that will not last. I am having trouble getting good direction from any doctor as to what the next step should be. At some point the cancer will override the medicine, and I will have to change gears. My doctors say things like, "there are new drugs coming on the market" and vague references to clinical trials. I even asked about going to a prostate cancer research center. I was told "my experience is that they just tell you to go back and keep doing what you are doing."
I would really like some direction. I will do anything it takes to stay alive. I am 64 years old, and (except for the cancer) in optimum health. I eat well, attend cancer support group twice a month, attend yoga for cancer patients one hour every week, exercise for an hour every day, and get a therapeutic massage for an hour every week. I am willing to travel anywhere, eat what I don't like, not eat what I like, and take any medicine that will extend my life.
My questions: How long should I stay on my current medications?
At some point, should I get off all medication, and see what happens?
What medication(s) should I consider taking in the future?
Is there any way I can receive Provenge before I reach the stage of "not responding to hormone therapy?" (i.e. terminal)
Is there a good regional prostate cancer research center in the Northwest?
Any other advice on how to fight this thing so I will be on the fifteen year plan instead of the five year plan I am currently on?
I will appreciate any direction you can provide.
1 Replies |Watch This Discussion | Report This| Share this:What's nextI had a radical prostatectomy 15 months ago. Three days later, the surgeon informed me that cancer cells were found in several lymph nodes. Three weeks later, my PSA had gone back up to 7, where it was before surgery. The surgeon stated my cancer was very aggressive, had spread out of the pelvic area, and was at stage four. I went on hormone therapy (Eligard shot every six months) and a daily tablet of 50mg bicalutamide. I also had three infusions of taxatere (sp?) chemo three months after surgery. <br /><br />My PSA has been 0.0 for the past year, but that will not last. I am having trouble getting good direction from any doctor as to what the next step should be. At some point the cancer will override the medicine, and I will have to change gears. My doctors say things like, "there are new drugs coming on the market" and vague references to clinical trials. I even asked about going to a prostate cancer research center. I was told "my experience is that they just tell you to go back and keep doing what you are doing." <br /><br />I would really like some direction. I will do anything it takes to stay alive. I am 64 years old, and (except for the cancer) in optimum health. I eat well, attend cancer support group twice a month, attend yoga for cancer patients one hour every week, exercise for an hour every day, and get a therapeutic massage for an hour every week. I am willing to travel anywhere, eat what I don't like, not eat what I like, and take any medicine that will extend my life. <br /><br />My questions: How long should I stay on my current medications?<br />At some point, should I get off all medication, and see what happens?<br />What medication(s) should I consider taking in the future?<br />Is there any way I can receive Provenge before I reach the stage of "not responding to hormone therapy?" (i.e. terminal) <br />Is there a good regional prostate cancer research center in the Northwest?<br />Any other advice on how to fight this thing so I will be on the fifteen year plan instead of the five year plan I am currently on? <br /><br />I will appreciate any direction you can provide.
Basir U Tareen, MD responded:
These are all very difficult and complicated questions, as I'm sure you are aware.
The good news is, you seemed to have had a good response to the initial therapy despite having metastatic disease. The fact that the PSA is undetectable is a good sign at this point.
I know you are quite anxious but at this point it seems that your doctors have done everything appropriately. You and your doctors are also correct in that there are a number of new drugs recently approved and to be approved in the next 2-3 years which I believe will help turn advanced (metastatic prostate cancer) into more of a chronic disease than ever before.
At this point, however, you will not be eligible for any treatments as long as you are hormone responsive. You are correct in that sooner or later you will become hormone resistant and at that point it will be a good time to discuss with your urologist and medical oncologist the next course of action depending on which drugs are available at that time. (not only approved drugs like Provenge, Zytiga, Carbazitaxol, but newer drugs on the horizon like MDV3100)
Best of luck,
Dr. Tareen
The good news is, you seemed to have had a good response to the initial therapy despite having metastatic disease. The fact that the PSA is undetectable is a good sign at this point.
I know you are quite anxious but at this point it seems that your doctors have done everything appropriately. You and your doctors are also correct in that there are a number of new drugs recently approved and to be approved in the next 2-3 years which I believe will help turn advanced (metastatic prostate cancer) into more of a chronic disease than ever before.
At this point, however, you will not be eligible for any treatments as long as you are hormone responsive. You are correct in that sooner or later you will become hormone resistant and at that point it will be a good time to discuss with your urologist and medical oncologist the next course of action depending on which drugs are available at that time. (not only approved drugs like Provenge, Zytiga, Carbazitaxol, but newer drugs on the horizon like MDV3100)
Best of luck,
Dr. Tareen
Report This| Share this:What's nextThese are all very difficult and complicated questions, as I'm sure you are aware. <br /> <br />The good news is, you seemed to have had a good response to the initial therapy despite having metastatic disease. The fact that the PSA is undetectable is a good sign at this point.<br /> <br />I know you are quite anxious but at this point it seems that your doctors have done everything appropriately. You and your doctors are also correct in that there are a number of new drugs recently approved and to be approved in the next 2-3 years which I believe will help turn advanced (metastatic prostate cancer) into more of a chronic disease than ever before. <br /> <br />At this point, however, you will not be eligible for any treatments as long as you are hormone responsive. You are correct in that sooner or later you will become hormone resistant and at that point it will be a good time to discuss with your urologist and medical oncologist the next course of action depending on which drugs are available at that time. (not only approved drugs like Provenge, Zytiga, Carbazitaxol, but newer drugs on the horizon like MDV3100)<br /> <br />Best of luck,<br />Dr. Tareen
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