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Avatar universal

At a loss for what to do now...

It's been a while since I have posted in this forum.  I'm hopeful that someone, in this forum, will have some input for me.  My husband had a RP in January 2010.  His pre-op PSA was 50.0, Gleason 8.  Surgical biopsy revealed postive margins, invasion of the seminal vesicles.  Post op PSA in April 2010 was 33.50 ng/ml.  In May of 2010 he had his first injection (3 month) of Lupron.  He took oral Casodex as well.  After three months, he opted out of his next injection which he was due to have in August 2010.  The Lupron had severely impacted his quality of life.  He needed to sleep 4-5 hours in the middle of each day, had to stop working, gained weight and it severely impacted his focus, concentration and drive. His first PSA in July 2010, after Lupron, was immeasueable.  Subsequent PSA's, in 3 month increments were October 0.01 ng/ml,  January 2011 0.12 ng/ml.  April 2011, 0.30 ng/ml.  We have been to three top oncologists at NYU, Fox Chase in Phila, and Sloan Kettering in New York and all have told us that it is distant metastasis and there is nothing else for him.  So now, we just wait for the PSA to keep rising and have no alternatives?  He still sleeps many hours in the middle of each day and is extremely exhausted and lacking focus and concentration.  He complains of hip and back pain often, however, we are told that the cancer cells are still too small to show up on a bone scan.  He has had two bone scans since his surgery, both negative.
Any advice out there?
thanks, in advance, for any advice you may have to offer us.
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Avatar universal
I came across your post. My husband is on firmagon after using lupron. His PSA after a month on firmagpn went up to 102. Just curious how you are doing after being treated xxCurtxx and klrose  how you husband is doing.
Helpful - 0
Avatar universal
Stop the firmagon and get him on a strict ketogenic diet and watch the cancer die!!...Do not listen to the doctors, they only know one way...Google ketogenic diet and Dr Mecola..it works.
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Avatar universal
Also..... If your husbands PSA is lower than 10, then I don't think a bone scan will show anything. He may be lucky and has no mestastasis. Get him on Firmagon and watch his PSA go down by the month. It works in a different way than Lupron and the others. Don't wait till it rises above 10. Start NOW. My results are being sent to the drug company every three months as part of their post marketing research. I am confident that this can help him.
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Avatar universal
Kim, nice to hear from you.  I have been getting a needle of Firmagon(Degeralix) once a month since our last correspondance. I just had one two hours ago. Every month my PSA dropped by about 2 and has seemed to have leveled off at 1.52. My urologist ( I don't trust Oncologists since I found out they get a kick back on chemo drugs) told me today that he is "happy" that Firmagon is working so well. Also he said that he feels Firmagon should replace Lupron and some other drugs as the preferred "go to" drug but that it hasn't been recognized yet. Your husband should definately give it a try as I have had NO side effects except infrequent hot flushes. If you have $50,000 to $80,000, there is a doctor named Dr. Burzynski in Texas that does gene targeted therapy that can CURE most cancers, but he can only work in Texas as the FDA is constantly trying to stop him. The treatment is totaly non toxic and has a positive effect on even very advanced cancers. The patient must travel to his clinic in Texas and stay for up to 3 weeks, then goes home with oral medication that costs about $4000. per month. Very dramatic improvement and possibly a cure can occur in as soon as a month in some cases. If I had the money I would certainly go.
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Avatar universal
Hi Curt,
the last we spoke you were about to have your second Firmagon injection.  How are things going?  Has your PS dropped lower than 5.2?
My husbands PSA is back on the rise again, nearly 7.0 last week.  He has not had any treatment since his first lupron shot over a year and a half ago. The doc suggested a bone scan, at this point so we go this week.
Wanted to touch base with you and see how things are going for you.  I hope that PSA is coming down and you are doing great.  
look forward to hearing from you.  Be well.
Kim
Helpful - 0
Avatar universal
Thanks, Curt, for telling me some of your story.  I will say a prayer for you.  I hope your PSA is down after next shot.  Have you had any bone scans since your surgery?  If so, was anything detected?  My husband has had two bone scans since his surgery and they were both negative.  I am told, however, that it takes many thousands of cells in one spot to show up on a scan??  I spoke with his urologist yesterday and he feels we should do another PSA in three months and see how fast it is doubling now.  He is currently a 5.3.  He said if it's much higher, he will try him on the Firmagon.  Thanks for the advice on that.  I did not know about Firmagon.  
Be well and please keep me informed.  I wish you all the best.  
Keep biking and curling!
Kim
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Avatar universal
With Firmagon I do have a sex drive.. However, I have had a prostatectomy and have ED.  My PSA in May 2009 pre op was 42. Post op it was .2 because some cancer cells in the median were missed. I did "watchfull waiting" for a year and PSA went up to 5. In August of 2010, I was given Lupron and my PSA went down to .2, but the side effects, especially cardiac problems such as irregular heart rate and chest pains, made me decide not to have yhe second 3 month shot. June,2011 PSA was 7.2. I had a monthly shot of Firmagon at that time. For 96% of men PSA drops to less than 1 within 3 days. I had a PSA test after 21 days and my PSA only dropped to 5.2. Tomorrow, I see my Urologist for the second shot and have confidence that by the second month, PSA will go down. My original Gleason was 8 or 9. I believe that the Gleason score can change, but cannot be detected with today's tools. Tomorrow may give me more or less hope; let's see what the doctor says. I still will refuse radiation as that can easily lead to bladder damage and rectal damage(a 50% chance) and in my mind I would be an invalid and I could not live that way. Never mind the erection, let's stay alive and functional in LIFE!. I will be 64 in two weeks but still think I am 25, ride a motorcycle, bicycle, and am an avid "curler". I sure hope this drug works for me and I think it will. Bye for now, Curt.
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Avatar universal
thanks for responding Curt.  
I'm going to ask his urologist about Firmagon today.  The awful thing is that he just began to get his sex drive back again, after well over a year.  Lupron or Firmagon will kill that again.  However, keeping him alive is much better than that.
If you wouldn't mind sharing, could you tell me if you have had a prostatectomy and when you were diagnosed and what your PSA and Gleason was?  Just curious to know your story and how it compares to my husbands.  Thanks Curt.  I wish you all the best.
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Avatar universal
Hi, an oncologist told me a bone scan does not show anything until PSA reaches 10. or more. Since it was definitely the Lupron that brought your husband's down, means that his cancer is testosterone(hormone) dependant. He should be on a hormone supressing drug, but not Lupron. As I have said, I was on Lupron, with horrible side effects, and now I,m on Firmagon, with only one: some sweating. Not bad at all. I'm getting my second shot Tuesday. I can have radiation..........I refused and have decided to try to control it with the testosterone supressant. I care about my quality of life and make that a part of my decisions. Wish me luck, Curt..
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Avatar universal
Thanks for your comment and suggestions Curt.  
My husband just had another PSA.  Last PSA was April 2011, 0.30 ng/ml.  This month, July, now 5.35.  Yikes.  What to do now?  He just doesn't want to go back on Lupron.  It was really awful for him.  I'll ask doc about Firmagon.   Does anyone out there think a bone scan would show anything at this point?  Just to refresh for anyone who didn't read my original post:  Original PSA 51.0. Gleason 8.  Radical Prostatectomy January 210.  Three month post-op 35.0.  1 shot Lupron along with Casodex in May 2010.  Quality of life extremely diminished.  Husband opted out of 2nd shot due in August 2010.  Subsequent PSA's, in 3 month increments were October 0.01 ng/ml,  January 2011 0.12 ng/ml.  April 2011, 0.30 ng/ml.  Now July 5.5.  Any advice out there?
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Avatar universal
I was on Lupron, which is an agonist. New drugs are being approved that are antagonists. They work to achieve the same result: blocking production of testosterone and lowerring PSA levels. I had almost a dozen side effects on Lupron. The worst were cardiac effects. Now I'm on Firmagon (Degerelix) for a month so far, and only ONE side effect: occasional sweating; not night sweats. I can deal with that. Ask the urologist to try this as it's been proven to work very fast(1-3 days to castration levels).  Oncologists are extremely attatched to THEIR profession and have tunnel vision whwn it comes to other therapies. See a Urologist, ask for this new drug and give it a try. Good luck, Curt.....  
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Avatar universal
My husband was diagnosed with Prostate Cancer last year.  It was the scariest time in my whole life.  I'm sorry to hear what you are going through.  At that time, I spent hours on a website www.cancertutor.com.  It's very informative and offers all kinds of alternative treatments for cancer.  I'm not against tradition medicine (my husband chose to oblate his prostate with the HIFU procedure), but I think the alternative in addition to the traditional was extremely helpful for us.  I hope this is helpful.
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Avatar universal
thank you for your response.  Radiation won't help him, at this point, since post op PSA of 33.50 was an indication to his oncologist that it was no longer local.  So if not local, where would they radiate?  He just wants to feel as well as he can for as long as he has.  If he takes more hormone therapy and just sleeps and has no drive and lack of focus and concentration, he feels that he is not living.  
Have you been through this?
Helpful - 0
Avatar universal
Sorry to hear about your husbands situation. if he can tolerate the hormons it can keep the cancer at bay for many years. If the Lupron is bothersome, have him ask uro for
a different type of injection. They make other brands, not just Lupron. I can*t believe they
told him radiation would not help. Does he have any mets on any bone scans?
Hormones will arest the cancer for a long period of time. There is a procedure were they
can remove the testicles and eliminate the testosterone in his system. This is what the
Lupron shot does. Testosterone fuels the cancer. Good Luck.
Helpful - 0
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