Medical Forum / Diseases and Disorders / Prostate Cancer / July 2005
My Concoction Seems to be Working!
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Ken - 14 Jun 2005 06:20 GMT Over the past few months, I've posted one thing or another here relating to my post-op rising PSA. Here's some interesting news... On April 14th my PSA was 9.5. Today, exactly two months later, it's 5.6! My doctor was very surprised, and almost as delighted as I. He asked me what have I been doing...
On May 5th (about five weeks ago), I started taking the following:
Acetyl L-Carnitine 250mg Alpha Lipoic Acid 250mg B complex timed release Beta-carotene 15mg Calcium Citrate+D (630mg calcium citrate + 400iu vitamin D3) Celebrex (prescription) 200mg Centrum-like multivitamin Coenzyme Q10 400mg Green Tea extract capsules 800mg Pomegranate extract capsules 500mg Selenium 200mg Tocotrienols 100mg Vitamin C 1000mg timed-release Vitamin E d-alpha tocopherol 400mg Vytorin 10/20 (prescription)
Plus, I drink about a cup of green tea and a cup of pomegranate juice three or four times a week. I eat tomato sauce at least once a week. No red meat. No animal fats, except fish at least twice a week, and chicken about twice a month... and a scoop of ice cream every couple of months.
I don't doubt that many, if not most, of the things I'm taking have no effect whatsoever on PSA, but SOMEthing is doing the deed, so it's steady-on 'til my next blood draw.
Just thought I'd mention it in case any of my brothers here are in my predicament, i.e., willing to try anything to avoid that ****ing HT.
I.P., what do you think?
Ken
I. P. Freely - 14 Jun 2005 08:06 GMT "Ken" <wrote
> Over the past few months, I've posted one thing or another here > relating to my post-op rising PSA. Here's some interesting news... [quoted text clipped - 34 lines] > > I.P., what do you think? Not that my opinion is important compared to many of the more knowledgeable folks here or the literature, but since you ask . . . a) I agree that avoiding HT is a valid goal for some people, at least until symptoms or scans establish recurrence. b) I'd want to make sure I was not doing anything to lower PSA without actually diminishing my CANCER, because it's the cancer, not the PSA, that kills, and PSA history is important in assessing disease progress. c) You've obviously studied PC supplementation more than I have. d) I'd evaluate everything on that list for threats, such as the ever-increasing evidence that Vit E harms our cardiovascular system. Selenium is easy to overdo, long-term Celebrex is not risk-free, and Vit D can be overdone, for example, and I'm sure you know Vytorin can lead to liver or muscle problems in some people. Also make sure you're getting enough protein on that low-meat diet.
I.P.
OCL - 14 Jun 2005 16:41 GMT > b) I'd want to make sure I was not doing anything to lower PSA without > actually diminishing my CANCER, because it's the cancer, not the PSA, that > kills, and PSA history is important in assessing disease progress. I would echo this cautionary note. I think that I have done a good job of researching and analyzing supplements and non-FDA or off-label uses of prescriptions - like taking Celebrex or a statin for prostate cancer. And I have a lot of confidence in some of those supplements and in the off-label uses of things like Celebrex and Vytorin.
But, lowering PSA and killing cancer cells are two different things. They are related! Most certainly! But, if supplements are lowering PCa cell PSA production without killing the PCa cells then growth of the PCa could be masked o at least the continued presence of PCa could be hidden.
So I would be sure to seek additional diagnostic tests. I would want a Bone Scan and at least an abdominal CT and while I'm not well versed on Free PSA testing and don't know it's role in post-surgical PSA testing, I would want the best PSA testing available.
After saying all of that I would add, Bravo! Good for you! It is always good news when a member of this club has some positive news to share! So I will continue to wish and pray for you a complete victory over your PCa and a long and happy life!
OCL
Ken - 14 Jun 2005 19:23 GMT Good points, I.P.!
I forgot to mention that my scans and X-rays are negative, and I have no symptoms. If, as you said, recurrance were identifiable, I wouldn't have the "luxury" of trial and error.
I've always been suspicious of relying on PSA as the sole determinant of recurrance in a situation like mine. Apparently, after all these years and millions of dollars, that's still the be-all and end-all. I hate the idea of all the stress involved in chasing PSA numbers, if I don't have cancer. However, the one thing ALL of the doctors I've consulted agree on... PSA is a reliable marker, especially for recurrance.
Apparently, there are recent reports about problems with alpha tocopherol vitamin E. (By the way, that should be 400 IU, not "400mg" I had posted.) That's why I started the rice bran oil-based tocotrienols vitamin E as a substitute as I switch from d-alpha tocopheral. Also, with the additional E I get in nuts and wheat germ, I think it'll be okay. There are lots of good studies showing a definite relationship between PCa and vitamin E, and I think the vitamin itself is not the suspected culprit.
Selenium can be over-dosed, but 200mg is safe, according to what I've read. Apparently, selenium and E could be the key to turning off the "stay alive" switch in cancer cells. Two months ago, Fox Chase Cancer Center presented their research paper at the American Association for Cancer Research. An outstanding quote from the release is: "Selenium and vitamin E are the most promising dietary supplements considered for use in the reduction of prostate cancer risk," Kolenko said. "This enthusiasm is reflected in the initiation of the large National Cancer Institute sponsored trial - SELECT (Selenium and Vitamin E Chemoprevention Trial).
The vitamin D in the calcium citrate compound is just enough quantity as a catalyst to help make the calcium more available. At this moment, studies are escaping dairy industry filtering that indicate major problems with relying on milk products for calcium. Some studies suggest fish and their bones, such as herring, sardines, etc., in addition to compounds.
You're right about protein! I forgot to mention that I consume quite a bit of soy protein... in soy milk, soy powder protein shakes with blueberries and almonds (how can anything so good-tasting be good for you?), tofu, soy "meat" patties and "hot dogs."
As far as I know, EVERY prescription drug has at least the potential for serious side effects. Celebrex and Vytorin are at the top of the list. Supposedly, 200mg of Celebrex is the best combination of lowered risk without eliminating effectiveness. Vytorin's caveats appear to affect a minority of users, but they would know within only a few doses, by mild muscle cramps. With both meds, all side effects are reversible by reducing or stopping dosage after the first sign of a problem.
Ken
Ken - 14 Jun 2005 20:20 GMT Here are excerpts from a couple of the articles that grabbed my attention:
About statins like Vytorin... April 18, 2005 - "Cholesterol is the building block of the male hormone testosterone," said Dr. William J. Catalona, director of the Clinical Prostate Cancer Program of Northwestern University's Robert H. Lurie Comprehensive Cancer Center. Since statins lower blood levels of this fatty substance, there may be less of it available to synthesize testosterone and dihydrotestostrone, he explained. And that may reduce male hormones that stimulate prostate cancer. The findings deserve further investigation, said Catalona, who pioneered use of the PSA -- prostate-specific antigen -- test to screen for the disease. This study isn't the first to show the potential cancer-fighting properties of statins. Prior population-based studies suggest those who take statin drugs are at a lower risk of breast, colon and prostate cancers. In addition, laboratory research suggests statins induce cancer cell death, inhibit the spread of cancer throughout the body and suppress inflammation within cells.
About Celebrex... In studies published in the March 1 [2005] issue of the journal Clinical Cancer Research, scientists at the Weill Medical College of Cornell University revealed that celecoxib, marketed under the name Celebrex, not only targets COX-2, but also reduces levels of a key protein, cyclin D1, that's critical for cell replication. "It is well established that COX-2 is a significant and rational target for anti-cancer therapy," said Andrew Dannenberg, M.D., director of cancer prevention at the Weill Medical College of Cornell University and senior author of the paper. "These studies suggest that celecoxib exerts a second mode of action independent of its known anti-inflammatory mechanism that imposes further restrictions on the proliferation of prostate cancer cells."
Ken
Ken - 16 Jun 2005 19:27 GMT Below are some quotes from the article that got my attention about CoQ10. The whole report is here: http://www.med.miami.edu/news/view.asp?id=403
"4/25/05 Researchers from the University of Miami Leonard M. Miller School of Medicine have presented dramatic findings at a national cancer meeting that show a link between a very potent antioxidant that occurs naturally in the body, and the ability to kill breast and prostate cancer cells. The antioxidant they have studied is Ubiquinone, more commonly referred to as Coenzyme Q10 or CoQ10, and delivery of the therapy could soon be as simple as applying an ointment to the tumor site."
"The scientists made two presentations at the annual meeting of the American Association for Cancer Research in Anaheim, Ca.The first presentation involved the most common prostate cancer cell line, PC3. The researchers showed that after adding CoQ10 to the cells in vitro, or in the laboratory, there was a 70 percent inhibition of cell growth over 48 hours and a reversal in the expression of a key anti-apoptotic protein, bcl-2. "We saw evidence that the remarkable reduction in cell growth was due to apoptosis, showing that CoQ10 restored the ability of the cancer cells to kill themselves," said Narain."
"S.L. Hsia, Ph.D., director of the Transdermal Delivery/Cutaneous Biology Laboratory and principal investigator of the research, said, "It is amazing that a benign compound, CoQ10, can cause the cancer cells to selectively kill themselves without harm to normal cells."
Ken
I. P. Freely - 14 Jun 2005 21:19 GMT As I suspected from your food & supplement list, asking me for cancer dietary advice is like Lance Armstrong asking Michael Moore for dietary (and grooming) advice. You're far more informed on it than I, and I'll use your comments as a starting point for my own expansion in that direction. Let's see . . . QOL-devastating ADT SEs or food . . . QOL-devastating ADT SEs or food . . . I KNOW . . . I think I'll try FOOD first. Thanks for the extra motivation.
Now, dangit, I read just yesterday that some common pertinent supplement is inhibited by soy. When I find that article again I'll bring it up if it's relevant.
I.P.
> Good points, I.P.! > [quoted text clipped - 52 lines] > > Ken David S. - 14 Jun 2005 12:36 GMT Ken:
Why are you intent on avoiding conventional treatment? If it is because of the risk of side effects I think you have to weigh the risks that you are taking by pursuing the path that you are on. As I.P. pointed out, there are risks with some of the drugs that you are taking, not to mention the cumulative effect of mixing all those things together. Is there any documentation on possible side effects of combining some of these drugs/vitamins/supplements? I do not mean to knock what you are doing. You may know that what you are doing is tame compared to what one of our former, now deceased, members did. I respect your right to choose, but just want to point out that your chances may be better following the conventional course.
Good luck to you.
Thank you. David S.
> Over the past few months, I've posted one thing or another here > relating to my post-op rising PSA. Here's some interesting news... [quoted text clipped - 36 lines] > > Ken Ken - 14 Jun 2005 21:00 GMT David, the only conventional treatment, in my case, is anti-androgen or hormone therapy. The last time I had a Lupron shot and Casodex medication, I wasn't told about ANY side effects other than a sore butt at the injection site. If you've never had a severe hot flash, you really can't appreciate a description. It's totally debilitating. My skin felt like a bad sunburn, and was cherry red. All layers of my clothing soaked with sweat. My mind was feverish and standing was difficult because of dizzyness. At its worst, the duration was about four minutes, every seven to 10 minutes, 24 hours a day. Sleep was possible only after total exhaustion. That was the easy part. Here's part of a list of other side effects, both non-reversible and temporary, called "ADS" (Androgen Deprivation Syndrome) and compiled by Stephen B. Strum, MD:
Muscle atrophy in chest, arms & legs Impotence & loss of libido Atrophy of testicles Aches & pains in joints Decreased muscle strength & endurance Loss of energy & "feeling weak" Weight gain due to increased body fat Gynecomastia (breast enlargement and pain) Mood "swings" Osteoporosis Chronic fatigue-like syndrome Anemia Difficulty controlling blood pressure Alzheimer's-like symptoms (severe short-term memory difficulties, inability to concentrate, etc.) Increase in urinary symptoms (uncontrolled urination or difficulty starting the urinary stream) Increased serum cholesterol (LDL, or "bad" cholesterol) and/or & triglyceride levels
I had most of the list, and will do just about anything to avoid a repeat... until the cancer shows up in a scan. With any luck, by then there might be an alternative.
gourd_dancer - 14 Jun 2005 22:55 GMT Ken have you tried Eligard instead of Lupron. Does the same thing except for the past 11 months not one hot flash. With the Lupron I would have 10-12 a day.......
> David, the only conventional treatment, in my case, is anti-androgen or > hormone therapy. The last time I had a Lupron shot and Casodex [quoted text clipped - 33 lines] > repeat... until the cancer shows up in a scan. With any luck, by then > there might be an alternative. Ken - 16 Jun 2005 19:42 GMT This is the first I've heard of Eligard. It might have come onto the market withing the past three years. It's good to know there's an alternative to Lupron... and even better to know that you haven't had a hot flash.
Below is the side effects info. from the eligard.com site. I realize they're supposed to include all possible side effects, even if there were few incidences, and they were mild.
"ELIGARD, like other drugs in its class, causes a temporary increase in testosterone during the first week of treatment. Patients may experience worsening of symptoms or new symptoms during the first weeks of treatment, including bone pain, nerve damage, blood in the urine, or difficulty urinating. The most common side effects are hot flashes, injection site pain (including burning and stinging), fatigue, and testicular atrophy."
gourd_dancer - 17 Jun 2005 00:23 GMT I am in a research facility and get access to a lot of up to date information as opposed to an approved practice. With the mulyiple flashes on Lupron the Meidcal Oncologist switched me because he had very good success with Eligard. The Oncologist R.N. told me that very few experience hot flashes with it and after a year, they both are correct.
After 14 months of HT and 6 months of chemo, I still can get it up. I do get fatigued, gained weight, lost muscle tone, and sport a new set of mini-breasts.
I bring it up only as an alternative to try if Lupron induced hot flashes are really bothersome. BTW, the injection site is typically the back of the arm and stings like hell. For my money, it is a lot better than the hip.
> This is the first I've heard of Eligard. It might have come onto the > market withing the past three years. It's good to know there's an [quoted text clipped - 12 lines] > injection site pain (including burning and stinging), fatigue, and > testicular atrophy." Ken - 23 Jun 2005 01:12 GMT >... and sport a new set of mini-breasts." Last year I had a chat with a radiologist about gynecomastia. He said he could eliminate or greatly reduce it, probably in one but possibly two quick office visits. He said that it was a fairly common procedure. I had anti-androgen meds twice before, on the opposite coast, and no one even told me about gynecomastia, let alone that it was easily controlled with low-dose radiation. Maybe you could ask about it if you have to take the meds again.
Allan Matthews - 17 Jun 2005 18:49 GMT >This is the first I've heard of Eligard. It might have come onto the >market withing the past three years. It's good to know there's an [quoted text clipped - 12 lines] >injection site pain (including burning and stinging), fatigue, and >testicular atrophy." As a person who was on Lupron for 25 months I can state that the hot flashes can be controlled by Megastrol (Megace) very quickly. Your initial post sounds very much like the posts of the English gentleman who resisted conventional treatment by drinking and bathing in urine. May he rest in peace.
Lorelei - 18 Jun 2005 09:22 GMT Curt takes Effexor for hot flashes and he would tell you that for him they are very debilitating. He's been on Lupron for 18 months and will be til the day he dies. He hates Lupron. I wonder why he hasn't gotten any Eligard... I wonder if I can find out if there is a conflict of interest with our clinic and TAP Pharmaceuticals. The doc knows how much Curt hates the Lupron. Curt even delayed his last shot because he hates it so much. I'll have to ask at the next appt why not try Eligard.
PS. just because your symptoms were helped by Megace doesn't mean everyone's will be relieved. as they say: your body, your science experiment.
Lori Lori
Allan Matthews - 19 Jun 2005 17:53 GMT >Curt takes Effexor for hot flashes and he would tell you that for him >they are very debilitating. He's been on Lupron for 18 months and will [quoted text clipped - 11 lines] >Lori >Lori I too hated Lupron..so much that when my treatments of radiation had failed and I had the choice of going back on Lupron or having surgical castration, I chose the castration, knowing that Lupron had made me suicidal. I only stated that the Megestrol can control the hot flashes..it is used widely for this because it is so effective.
I. P. Freely - 19 Jun 2005 19:12 GMT The SEs should be about the same whether the castration is accomplished by knife or needle, because the cause of the SEs is generally considered to be due to the zero T. Did you find the effects different between needle and knife?
And Megace has its own suite of SEs.
I.P.
> I too hated Lupron..so much that when my treatments of radiation had > failed and I had the choice of going back on Lupron or having surgical > castration, I chose the castration, knowing that Lupron had made me > suicidal. I only stated that the Megestrol can control the hot > flashes..it is used widely for this because it is so effective. Allan Matthews - 22 Jun 2005 01:01 GMT >The SEs should be about the same whether the castration is accomplished by >knife or needle, because the cause of the SEs is generally considered to be >due to the zero T. Did you find the effects different between needle and >knife? Yes, The side effects of surgical castration were no where near as bad as the Lupron. On Lupron, when I started, I had 30-40 hot flashes a day. After one Megace tablet they stopped entirely but I had severe depression and came very close to suicide. I have had very few side effects from the surgery. A few mild bouts of depression and feeling sorry for myself once in awhile. What the Hell...I'm only 70 years old!!!! (G)
>And Megace has its own suite of SEs. > [quoted text clipped - 5 lines] >> suicidal. I only stated that the Megestrol can control the hot >> flashes..it is used widely for this because it is so effective. I. P. Freely - 24 Jun 2005 00:28 GMT This implies the SEs are compounded by the drug itself, not due just to the resulting T depletion. That's no surprise, but it's the first indication I've seen of that. One more tidbit of info in my personal decision tree, to be acted on when my PSA starts climbing some day.
I.P.
>>The SEs should be about the same whether the castration is accomplished by >>knife or needle, because the cause of the SEs is generally considered to [quoted text clipped - 19 lines] >>> suicidal. I only stated that the Megestrol can control the hot >>> flashes..it is used widely for this because it is so effective. Ken - 16 Jul 2005 03:23 GMT For what it's worth... Wednesday's (July 13) PSA was 5.8. Previously: June 22, 5.9. June 20, 2.5. June 13, 5.6 May 5, 7.6 April 14, 9.5 Mar 15, 9.6 Feb 3, 8.2 Dec 14, 9.2
Obviously, the lab screwed up on June 20. Otherwise, there has been a definite decline in the numbers. I started Celebrex April 12. Vytorin was added to the mix May 5.
A nice side benefit... Despite my "no red meat" and mostly vegetarian diet for the past decade, and being fanatical about low and no-fat foods, daily exercise and being on the low side of normal weight for my height, my cholesterol has always been high. When I started Vytorin, two months ago, my total cholesterol was 220. Wednesday it was 134.
As I mentioned in previous posts, I haven't a clue as to what effect the supplements I've been taking have had on these results. Maybe it's just the Celebrex and Vytorin... or maybe it's a little of everything, and I just happened to have lucked out with the right combination. Thankfully, nothing I'm taking is harmful... at least as far as today's latest newsbites tell us.
The only thing I feel secure in saying is that cholesterol and prostate cancer seem to have stronger links than previously thought.
Although I'm happy with the results, if this proves helpful to just one other man on this group (or anywhere else in the world for that matter), I'll be ecstatic!!
Ken
Steve Kramer - 16 Jul 2005 12:07 GMT Sure seems to be reducing PSA.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 non Illegitimi carborundum
> For what it's worth... Wednesday's (July 13) PSA was 5.8. Previously: > June 22, 5.9. [quoted text clipped - 31 lines] > > Ken Bob r - 16 Jul 2005 15:53 GMT Ken, Celebrex lowered my psa gradually as did my first protocol, PC-SPES. The FDA put the kabosh on it and now the VA has outlawed Celebrex. My PSA is climbing back up now so perhaps I'll buy my own Celrbrex. thanks for your info, bob r
Ken - 21 Jun 2005 02:33 GMT Allen - I had moments of feeling like "throwing-in the towel" during the worst of the Lupron saga, too. One of the meds on the list that supposedly controled hot flashes was Effexor, which was supposed to also help with depression. It had no effect on the hot flashes, but I think it helped me feel a little better between bouts. Megace didn't do anthing for me on any level. Did it work for you?
Allan Matthews - 22 Jun 2005 01:03 GMT >Allen - I had moments of feeling like "throwing-in the towel" during >the worst of the Lupron saga, too. One of the meds on the list that >supposedly controled hot flashes was Effexor, which was supposed to >also help with depression. It had no effect on the hot flashes, but I >think it helped me feel a little better between bouts. Megace didn't do >anthing for me on any level. Did it work for you? The Megace (Megatrol) ended my hot flashes, but did not for the horrible bouts of depression.
Lorelei - 18 Jun 2005 09:23 GMT oh and Curt would want me to add that he can still get it up too. <G> Lori
Allan Matthews - 22 Jun 2005 01:10 GMT >oh and Curt would want me to add that he can still get it up too. <G> >Lori Unfortunately for me, 41 radiation treatments, several months on Casodex and 25 months on Lupron ended in what the doctors called a (Biomedical Failure) when my PSA started rising again.
Ken - 23 Jun 2005 00:51 GMT "Unfortunately for me, 41 radiation treatments, several months on Casodex and 25 months on Lupron ended in what the doctors called a (Biomedical Failure) when my PSA started rising again."
Damn! You've been through hell, Allen. It's horribly frustrating to do "all the right things," and endure their side effects, just to wind up where you started.
I had another round of blood tests this afternoon (third in two weeks) to see what's happening to me with all the stuff I'm taking... and to confirm again-again, if my PSA really has plummeted. Apparently, several hemotologists and oncologists will be analyzing today's results. If they conclude that I'm not killing myself, and my PSA is indeed rapidly heading south, would you consider asking your docs about it for yourself, Allen?
Also today, I received my first shipment of US-grown and packaged pomegranate concentrate. It's very palatable, and a fraction of the cost of juice, even with shipping.
Allan Matthews - 23 Jun 2005 01:33 GMT >"Unfortunately for me, 41 radiation treatments, several months on >Casodex and 25 months on Lupron ended in what the doctors called a [quoted text clipped - 15 lines] >pomegranate concentrate. It's very palatable, and a fraction of the >cost of juice, even with shipping. I really have no one to blame but myself. I did not get regular exams even when my wife urged me to. My PSA at time of diagnosis was 39.6. I knew better but did not get tests. However right now I am feeling great, do some physical work every day, and my PSA in March of this year was .15 so the surgery must have helped some. It was 7.6 at the time of surgical castration. I had excellent care by two doctors I had a lot of faith in. At the outset, before any treatment they told me the odds of beating it were about 50/50. Started treatment March 29, 2000.
Allan Matthews - 23 Jun 2005 01:37 GMT >>"Unfortunately for me, 41 radiation treatments, several months on >>Casodex and 25 months on Lupron ended in what the doctors called a [quoted text clipped - 24 lines] >me the odds of beating it were about 50/50. Started treatment March >29, 2000. Ken, I missed your final question..sorry. I will be glad to discuss your treatment with my urologist when I seen him again...Sept. I sure hope you have good luck with it. Allan
David S. - 15 Jun 2005 13:04 GMT Ken: After reading this I get the point! Not sure what to say except I hope the dietary supplements, etc., work for you. Good luck. David S.
> David, the only conventional treatment, in my case, is anti-androgen or > hormone therapy. The last time I had a Lupron shot and Casodex [quoted text clipped - 33 lines] > repeat... until the cancer shows up in a scan. With any luck, by then > there might be an alternative. Ken - 21 Jun 2005 03:20 GMT I just got back from another doctor's visit... and another blood test, to help confirm last week's test that showed a PSA drop from 9.5 to 5.6 in less than two months. First message on my machine was from my doctor, with some "great news, and some strange news." The great news is today's PSA was 2.5. I don't know what's happening, but something is causing it to fall dramatically. The strange news is the liver function test is a bit elevated. That could be related to the Vytorin.
He wants me to get another blood test, this week, to confirm the liver function test. Maybe the Vytorin dosage will have to be modified.
Bottom line for my PSA is that on April 14th, it was 9.5, and on June 20th it's 2.5. If anyone reading this is thinking about following a similar regimen, you might consider getting a full blood panel as a starting point from which to monitor... and/or discuss it with your doctor if your liver function is elevated.
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