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Old 04-16-2009, 02:04 PM   #1
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geno4556 HB User
Prostate Cancer - Gleason 8, PSA 5

In February 2009, I was diagnosed with prostate cancer with Gleason 8 and PSA 5. To the surprise of all my doctors, an MRI showed a 6mm bone matastasis on my pelvic bone. A few days after my diagnosis, my doctor put me on Trelstar without giving me Casodex. I have read that this was a bad idea. Three weeks later another doctor prescribed Casodex. I am going to see an oncologist tomorrow. Does anyone have any suggestions on how I might control matastasis and from experience, can anyone tell me where this is all going?

 
Old 04-16-2009, 09:21 PM   #2
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Re: Prostate Cancer - Gleason 8, PSA 5

I was diagnosed in 2005 with a 4/5 gleason after RP a bone scan showed inccreased activity in the coccex bone. The MRI was unable to determine matastasis but was also unable to give it an all clear. I went on Casodex fro 30 days then on Lupron depot without casodex. I also agreed to Radiation.

I came off the the lupron for about 9 months but due to psa doubling rate went back on. Six months later I went on both Lupro and Casodex.

last test revealed a .4 PSA trending down. i expect to hit .1 on my May test. the bright spot is that my recent bone scan showed no progression since fall 2005. Given some of the things I was told in the beginning about my prognosis with an out of capsule tumor, 4/5 gleason and hot spot on the coccyx it could be a lot worse. I am trying to be agressive with treatment given my situation.

One suggestion I would give you is to read Dr Charles "Snuffy" Myers book Beating Prostate Cancer, Hormone Therapy and Diet. It gave me a lift after hearing about it on this forum. So much so I have decide to pay him a visit the beginning of June when i will be on the Mainland.

You will find some of the guys here have a wealth of information to share like IADT3 (JIM) and others, I am sure they will chime in on your thread. I only found this forum recently but have picked up information from past threads by lookig at archives.

Try to keep positive, I think it helps, and try to learn what you can about your specific, and lasly use the information to become involved with the Doctors on your team in making decissions.

All the best

John

 
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Old 04-24-2009, 06:31 PM   #3
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Re: Prostate Cancer - Gleason 8, PSA 5

Quote:
Originally Posted by geno4556 View Post
In February 2009, I was diagnosed with prostate cancer with Gleason 8 and PSA 5. To the surprise of all my doctors, an MRI showed a 6mm bone matastasis on my pelvic bone. A few days after my diagnosis, my doctor put me on Trelstar without giving me Casodex. I have read that this was a bad idea. Three weeks later another doctor prescribed Casodex. I am going to see an oncologist tomorrow. Does anyone have any suggestions on how I might control matastasis and from experience, can anyone tell me where this is all going?
Hello Geno,

Welcome to our board. It's a fine board though none of us are glad we had a reason to join. Like you, I have a challenging case, though I was delighted when no detectable metastases were found on the bone, CT and ProstaScint scans. Since 1999 when I thought the maximum for a PSA test was 10 and did not know there was such a thing as a DRE, I've become a savvy survivor. However, I've had no enrolled medical education.

I'll second John's recommendation of Dr. Myers' book. By the way, in addition to being a world-class medical oncologist specializing in prostate cancer (he's in the Charlottesville, Virginia area - with an national and international practice), he has had a challenging case of prostate cancer himself! (I like a doctor who goes all out for his patients in researching their disease!) Before he even gets into the heavy duty medical details (though in a very easy-reading way), he gives the reader a heavy dose of optimism.

Here's one of the statements: "I've seen many men beat odds that seem insurmountable, utilizing a combination of treatments of which hormonal therapy was an integral part, men who are still cancer-free today." Here's one of his observations: "In fact, over the years I've found myself asking if pessimism is as deadly a disease as prostate cancer itself." Here's another: "In contrast [to those who give in to desperation], I have patients whose disease is so aggressive that their other doctors urge them to put their affairs in order and yet they refuse to give up. These kinds of relentless optimists continually seek out new and better treatments and beat all the odds."

Later in the book he gives several cases histories of men whose PSAs exceeded 1,000 (two over 3,000), including high Gleason, metastatic disease , yet they responded very well to therapy and are now doing fine . I have talked to one patient treated as he indicates who had such aggressive disease that not only hormonal therapy but also chemotherapy failed to control his cancer; yet he responded spectacularly well to leukine, doing so well that he was able to discontinue everything and is currently fine.

You are clearly appear to be a lot better off than these men were, and you definitely have a good chance of controlling the disease.

"Flare" due to Trelstar type drugs without a drug like Casodex to control it can be dangerous, especially if a man has substantial prostate cancer in the spine. However, the key danger is short lived, and if you haven't experienced some paralysis, you are okay as I understand it, at least regarding flare. I too had some flare, from a baseline PSA of 113.6 on December 4, 1999 to a reading of 125 on December 20, but I had no obvious problem and have clearly been fine since. Personally, I'm convinced it's prudent to have an antiandrogen like Casodex before the Lupron-Trelstar-Viadur-Zoladex type drug to prevent flare, but most of us don't have significant problems even if the Trelstar type drug is given first.

Here are three thoughts for helping control metastasis: first, hormonal blockade can do that for some patients, often eliminating the metastasis for as long as the blockade is effective. You may have heard the myth that hormonal blockade only works for a couple of years. That was once probably true for very advanced patients with widespread, painful bone metastases (not you!), and it may still be true today though I have a hunch many of those patients will have blockade control the cancer longer than in the past. However, it is not true for those with less serious disease. For the average patient, it seems to work for ten to eleven year or indefinitely according to Dr. Mark Scholz, one of the leading experts.

I'm convinced that for many of us triple hormonal blockade will work better than either one drug blockade (like Trelstar alone) or combined, two-drug blockade (like Trelstar and Casodex). The three drug version adds a drug from the class technically known as "5-alpha reductase inhibitors," or 5-ARI for short. The two 5-ARI drugs currently approved by the FDA are finasteride, which I've been on for eight and a half years continuously, and a drug that is better on paper and appears better for most men, the widely advertised drug Avodart. Dr. Myers writes a bit about that triple combination in his book, and also has written about it in his newsletter, the Prostate Forum, which is a godsend to patients with challenging patients (and many other patients too) . The triple drug combination is also described in another excellent book, "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD and Donna Pogliano. Be sure to find out how to minimize side effects of hormonal blockade. We blockade patients need to be active in managing what we experience.

The second thought is the high value of having a drug plus associated supplements as a program to both help preserve bone mineral density - avoid thinning bones - while on hormonal blockade and at the same time help control, reverse, or even eliminate bone metastases. I've been on Fosamax or Boniva to do that, along with calcium and vitamin D3 supplements, for eight and a half years. While I still have mild osteopenia, which developed before I started the drugs, it is now probably better than it was at the start.

However, those drugs are at the milder end of the range of bisphosphonate drugs. The strongest one - the very powerful Zometa - is the drug of choice where there are existing bone metastases. There is a rare serious side effect involving the jaw bone that appears to be associated with very frequent and prolonged use, but one prominent practice says it has had no problems with dosing no more frequently than every three months. My layman's impression is that even more frequent dosing, say monthly, is okay for a limited period to get mets on the run. The payoff with Zometa is that bone metastases often disappear.

The third thought is the importance of lifestyle tactics: diet/nutrition/and supplements, exercise (particularly strength exercise but also aerobic), and stress reduction. Dr. Myers' book is very strong on that.

Here are some archived threads I've been involved with that might be of interest to you involving lifestyle tactics and other key topics for challenging cases.

Started 3/6/2008 "Nutrition & lifestyle tactics - books, resources and a quick summary"

Started 2/6/2008 "Gleason 8 (and higher) cancer: not good, but not always the end of the world"

Started 12/7/2007 "Pomegranate juice/capsules to combat ED and prostate cancer"
Started 4/22/2008 "Pomegranate juice/extract safety"

Started 2/25/2009 "Hurray for finasteride (Proscar) - the medical community finally does the right thing"

Started 2/27/2009 "What two wonderful books on PC are like - a sampling of excerpts for challenging cases"

Started 4/14/2009 and very current: "Provenge Success!!!!! Awesome News!!!!!" (reports favorable result from a key Phase III trial that should lead to swift FDA approval; trial involved men no longer able to control their prostate cancer with hormonal blockade alone who were also metastatic but without symptoms)

Finally, you asked where all this is going for you. The true answer is that no one really knows, and that's good news! That's because, first, even cases like yours vary quite a bit in seriousness, and second, because the technology for combatting prostate cancer is advancing substantially each year. For instance, men who were in the last stages of the disease in 2008 did not have Provenge as an option; by 2010, or maybe even later this year, it is highly likely they will have that option. As another instance, the might bone drug Zometa was not approved by the FDA until October 2001; that's really pretty recent. As a third instance, the key importance of maintaining a high level of vitamin D (recommended 50 to 100 on the 25-hydroxy vitamin D test by Drs. Myers and Strum, as I recall) was not appreciated until just the past few years - well into this decade. I could go on and on, but the point is that the patients whose outcomes have been reported in clinical trials for advanced patients in the past did not have these advances to help them.

Well, this is getting long and it's getting late, but I hope that John and I have been able to encourage you, and I'll bet you will hear from others of us too.

Keep your spirits up and take care,

Jim

 
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