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Medical Forum / Diseases and Disorders / Prostate Cancer / February 2007Leonardis Clinic????
Hi Does anyone have any experience with the Leonardis Clinic in Germany. I went to my Urologist yestere for a followup of a clinical trial I took part in. He asked me how I was making out. I told him that my cancer was raging since I was in the trial ans that my last PSA was 1386. He told me about one of his patients who was in very bad shape last year and went to the Leonardis Clinic in Germany. The results were outstanding. He gave me the man's name and phone number. I called him when I got home. He told me that last May the oncologist was going to put him on hospice. There was nothing else that could be done for him. His sister did a search of the net and found out about the clinic. He went there for 21 days and the results were outstanding. The nurse at the oncologist's office had told me that this man could barely get around before his trip. When he got back he was a different person. His PSA had been 450. It's now below 60 and holding. The main thing is that he is now ambulatory where last year he could bearely walk. Does anyone have avy experience or know of anyone who went to the Leonardis Clinic? It will cost me a fair amount of money and I don't want to waste it on a snake oil operation. Thanks Jim > Hi > Does anyone have any experience with the Leonardis Clinic in Germany. ... I'm very sorry to hear about your condition. I assume you are living in the United States. I don't know anything about the Leonardis clinic. But I do know that there is no magic in medicine. Assuming that you live in the U.S., if they are using an FDA approved treatment, you can get it here without going to Germany. If they are using a treatment that is not yet FDA approved but is in clinical trials here, you may be able to join the trial. I'm thinking that only if they are using something completely unavailable in the U.S. would it be necessary to go there to get the treatment. One problem in cancer treatments is that people's response to therapy varies widely. Some people have cancers that are extremely responsive to hormone therapy for many years. Others do not. The same is apparently true of the currently approved chemotherapy. It is possible that they treated the fellow with Docetaxel (also approved for PCa in the U.S.) and he had a very good response to it. It is possible that they treated him with something you've already tried. I recommend calling the clinic in Germany. I presume you'll be able to speak to an English speaking representative. Ask what treatments they offer to what patients. See if it makes sense to you and maybe inquire with your local doctor to see if it makes sense to him. Best of luck to you. Alan > I don't know anything about the Leonardis clinic. But I do know that there is no magic in medicine. > Assuming that you live in the U.S., if they are using an FDA approved treatment, you can get it > here without going to Germany. If they are using a treatment that is not yet FDA approved but > is in clinical trials here, you may be able to join the trial. And if it is an FDA aproved treatment for one disease, doctors can use it "off-label" (or whatever that privilege is called) for another disease. You can get plenty of info if you Google "Leonardis Clinic". Over 300 links pop up. Apparently the place was founded and operated by a Dr. Scheller who recently passed away from diabetes. Anyway, they do remarkable things according to their web sites even though Dr. Scheller's obvious mortality might indicate otherwise. Let us know what you find out. It looks interesting. Dave Perry > Hi > Does anyone have any experience with the Leonardis Clinic in Germany. [quoted text clipped - 23 lines] > Thanks > Jim > Does anyone have any experience with the Leonardis Clinic in Germany. I have checked their website and find this: "Our aim is to combine traditional oncological, immunological and neurological standard therapies (including immunological therapies, detoxifications etc) combined with approved elements of naturopathy (phytotherapies, complementary medicine, homeopathy) to form a unique synergy." That alone is enough to recommend that Jim run, not walk, to the nearest exit. The more I read on the site, the more I shuddered. One will also find "beautiful surroundings and individual care in an atmosphere of attentive friendliness by all levels of staff" at the quack clinics in Mexico. Anecdotes from alleged patients are worthless and possibly harmful. Let's see if the alleged patient is still alive next year. A PSA of 60 is nothing to brag about. What are the other test results?? Moreover, where is the *science?* Again: Run, do not walk, to the nearest exit! This is IMO just one more example of a sales pitch by scumbags who want our money and care nothing at all about our health. And I have to wonder about the ethical status of the uro. Regards, Steve J "Macbeth" Act IV, Scene one: A cavern. In the middle, a boiling cauldron First Witch: Round about the cauldron go; In the poison'd entrails throw. Toad, that under cold stone Days and nights has thirty-one Swelter'd venom sleeping got, Boil thou first i' the charmed pot. ALL: Double, double toil and trouble; Fire burn, and cauldron bubble. Second Witch: Fillet of a fenny snake, In the cauldron boil and bake; Eye of newt and toe of frog, Wool of bat and tongue of dog, Adder's fork and blind-worm's sting, Lizard's leg and owlet's wing, For a charm of powerful trouble, Like a hell-broth boil and bubble. etc. --Shakespeare? Bacon? Someone else? > I went to my Urologist yestere for a followup of a clinical trial I > took part in. He asked me how I was making out. I told him that my [quoted text clipped - 18 lines] > > Thanks Jim > ... > I have checked their website and find this: > ... > The more I read on the site, the more I shuddered. > ... I see from Steve's posting that I was far too generous to Leonardis Clinic in my own response to Jim's question. I just checked out the website myself and I have to agree with Steve. These people look to me like unscrupulous charlatans who will give you lots of tender loving care so long as you keep forking over barrels of cash, or die of cancer, whichever comes first. Some of their treatments look legitimate. But those treatments can be had right here in the U.S. I believe that the others, naturopathy, detoxification, thermotherapy, etc., are just smoke and mirrors designed to make you feel you're getting something that legit doctors won't give you. The legitimate therapies are designed to protect them from prosecution. The other crap is designed to suck you in to believing you're getting something that is special and helpful. I notice on the website that under "Cost carriers", they say "private patients only." In other words the German health insurance, and other insurance companies, won't pay these guys. That tells you a lot. Alan http://www.annieappleseedproject.org/aronedvanovs.html Google is your friend. The above link is a page written by an Ed Van Overloop's on his treatment at the Leonardis Clinic in Germany. If you click on HOME, you get a *green* woman speaking to you about "alternative therapy" at the Annie Appleseed Project which appears to be in Florida and asks for donations. I am sorry.....but charlatan outfits like this should be banned!! The cost to you, btw.....if you go to Germany is 800 Euros/day which is US $1,043!!! On one of the pages it is clearly stated.... Remember we are NOT Doctors and have NO medical training. http://www.annieappleseedproject.org/leonclin.html (where the above is stated) I wish their claim was true, but don't you think mainstream America would have heard of this if it was?? Should you wish to try it, that is your choice. And given your situation, no one would blame you. But do check them out further. Being *emotionally ripped off* is worse than being held up at gunpoint, in my book. I get really ticked with promises of cures like this. I lost a dear friend to that jerk in Mexico with his laetrile treatments in the mid 70's and that clinic is still in operation, I believe. Let us know what you find out. Heather > Hi > Does anyone have any experience with the Leonardis Clinic in Germany. [quoted text clipped - 23 lines] > Thanks > Jim While I in no way support charlatans, I would like to clarify a couple of misunderstandings Heather posted here. The "annieappleseed" people may indeed be frauds but what Heather posted comes from their website, it does not apply to the Leonardis Clinic. The clinic is run by doctors who use both approved and non-approved medications in combinations and doses tailored to each patient. They are legitimate enough to participate in clinical trials conducted in Germany and sanctioned by the National Instititue of Health in this country. There is a web site further down the Google page which outlines one of these trials. So, while I'm not sure the Leonardis Clinic is something I would utilize, at least be fair and don't compare "annieappleseed" with the Clinic. They are separate entities. Dave Perry > http://www.annieappleseedproject.org/aronedvanovs.html > [quoted text clipped - 58 lines] > > - Show quoted text - Dave...... I did see a couple of others, but Annie Appleseed and this Van Loopen seem to be all over the place with regard to the Leonardis Clinic. So I decided to research it further and I am still not impressed. And I had never heard of this Appleseed outfit before, but assume from your comments that they are allegedly frauds. One statement that I finally found to be attributed to Van Loopen in his many testimonials on many websites was that the Clinic was not governed by the authorities....or to put it in his/their words... quote........ When I spoke with Dr. Scheller and Dr. Jacob they said because they are independent of the German insurance system they may use any therapy in the world that has proper scientific back-up. They use various chemos and/or therapies that would not be approved for application in the USA. For example, a man with colon cancer was unsuccessfully treated in America, and upon going to the clinic it was found he responded only to Hercepton, a breast cancer chemo that would not be approved for that use at home. One of my German chemos used is listed only for ovarian cancer. unquote...... Perhaps this is a good thing, but who can say. Sometimes the Government can be bloody stupid about what treatments can be used for what diseases, etc. We just had a case here where the man went to England for a liver transplant from his brother (in 2000) because his was cancerous and he supposedly had only 6 months to live. The government refused to pay for the treatment because one of the drug therapies was not approved for that particular cancer or some sort of stupidity like that. Happens here.....happens in the US......happens in lots of countries. I still have my reservations about this clinic, but that is my own opinion. But given the circumstances, if this man chooses to try this, then I say go for it. I wouldn't blame him one bit. Hope that clears this up, Dave. > While I in no way support charlatans, I would like to clarify a couple > of misunderstandings Heather posted here. The "annieappleseed" people [quoted text clipped - 88 lines] >> >> - Show quoted text - > quote........ > When I spoke with Dr. Scheller and Dr. Jacob they said because they are independent of [quoted text clipped - 5 lines] > my German chemos used is listed only for ovarian cancer. > unquote...... This is an interesting quote. Most chemotherapies are drugs that kill many cells in addition to the ones that they are targetted against. I don't know if this has changed, but it used to be said that a typical chemo had a 5:1 specificity for its target cell, meaning it was five times more likely to kill the target cell than to kill innocent, non-cancerous cells. A really good chemo was said to have a specificity of 20:1. That sounds pretty good until you consider that the non-cancerous cells in your body probably outnumber the cancerous ones by thousands or millions to one. The story is way more complicated than that since certain kinds of cells are more susceptible than others, and because different levels of damage to cells take place and it is often possible for cells to recover from the damage. So in spite of the lack of 100% specificity, chemo can often do a great deal of good and even cure cancer (though it hasn't been demonstrated to do it for prostate cancer yet.) But it is well know that chemotherapy often makes people very sick because it attacks other cells in their body besides the tumor cells. It is my understanding that oncologists don't recommend the use of random chemotherapies not because they are certain not to do any good, but because they are certain to do some harm and unless there is a proven benefit to taking them, you are more likely to hurt than help yourself. So it sounds to me like the Leonardis Clinic is acting irresponsibly. The desparate cancer patient wants someone to try anything to save him. Leonardis says, "Sure, we'll try anything. That will be $1,000 a day for your room plus $3,000 for the injection and, oh don't forget to bring cash because you may not be around when the credit card bills arrive." Alan > I get really ticked with promises of cures like this. I lost a dear > friend to that jerk in Mexico with his laetrile treatments in the mid > 70's and that clinic is still in operation, I believe. The widow of MLKing, JR. died in one of those clinics in TJ, Mexico. Probably a lot more, lesser-known folks who didn't rate the media coverage. Mexico shuts one down and the operators open another on the opposite side of town. We never hear about prosecutions of those operators of unlicensed clinics. Just to make a note that the Leonardis Klinit is not in Mexico and it is licensed. It is run by a staff of Medical Doctors. Jim >> I get really ticked with promises of cures like this. I lost a dear >> friend to that jerk in Mexico with his laetrile treatments in the mid [quoted text clipped - 9 lines] > We never hear about prosecutions of those operators of unlicensed >clinics. On Feb 10, 2:58 pm, Jim: > Just to make a note that the Leonardis Klinit is not in Mexico and it > is licensed. It is run by a staff of Medical Doctors. I know it's in Germany, but Mexico WAS thrown into the equation. That's what I was replying to. > Hi > Does anyone have any experience with the Leonardis Clinic in Germany. [quoted text clipped - 3 lines] > cancer was raging since I was in the trial ans that my last PSA was > 1386. Oh, my God! It was only 90 when we last heard from you. I am really sorry to hear this, Jim. Unfortunately, I never heard of the clinic which probably means there is no one here who has mentioned it in five years.  SignaturePSA 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 .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, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04 Non Illegitimi Carborundum I would like to thank all who responded, even the one negative about the clinic. I have had hormone therapy which failed in 6 months. I had been hoping for 5-10 years on them. First disappointment I was put on Taxotere which worked fine for 3 months. Once taken off my PSA started back up. Second disappointment. I was put on Navelbine which did nothing. Third disappointment I took part in a clinical trial of Provengs, an immunoagent. That was a complete failure. The trial really set me back because the PSA went through the roof. One of their requirement is that I be off chemo for 3 months. Dr Myers from the U of Va stated, in one of his talks, said that you never take someone with aggressive cancer off chemo because the cancer will rage back as mine did. After the trial my PSA was 1399.7. Fourth disappointment They then gave me a few doses of Taxotere will limited success. Fifth disappointment. I'm now getting Cytoxan They will do another PSA in 2 weeks. I don't think this stuff is doing much good based upon how I feel. The last time I was at the Oncologist he finally gave me a prognosis, "ballpark 2007". That confirmed what I had been thinking. The way I'm thinking now is that I leave this world later this year or go to the Leonardis Clinic for their treatment. Doing that gives me a chance to hang in a few more years. My grandsons need a PopPop around to bite their bellys and play with them. The man I talked with yesterday was totally positive about the clinic and the results they produced. As I said, they were ready to put him on hospice last May. He was very sick. His 21 day at the clinic turned it around. He's now alive and relatively healthy. Money is not a problem. I've invested wisely over my lifetime and we are quite comfortable financially. Going to Germany is not a problem I spent 30 months there in the early 60's. I spent 10 weeks at a school in Lenggries which is about 15 km from the clinic. That is a very beautiful part of the world. I have maintained some of my German language skill. From what I've found, they use tests and therapies which are not available in this country. The FDA is quite pissy about what doctors can do. They are protecting us from hacks, but in the process restrict what competent physicians can do. Jim >Hi >Does anyone have any experience with the Leonardis Clinic in Germany. [quoted text clipped - 23 lines] >Thanks >Jim > I would like to thank all who responded, even the one negative about > the clinic. [quoted text clipped - 28 lines] > on hospice last May. He was very sick. His 21 day at the clinic > turned it around. He's now alive and relatively healthy. Desperate people do desperate things. Ask on sci.med.diseases.cancer madiba's in Europe and usually knows about different treatment centres in Germany. he's a radiologist and radiation oncologist J > Money is not a problem. I've invested wisely over my lifetime and we > are quite comfortable financially. Going to Germany is not a problem [quoted text clipped - 7 lines] > can do. They are protecting us from hacks, but in the process > restrict what competent physicians can do. Jim, I think it's a ruse. But, if you have the money, have the language skills, feel comfortable dying in a foreign land, then I think you are a perfect choice. There is almost certainly nothing here left for you. If you do it, please keep in touch. If successful, some of us may follow. SignaturePSA 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 .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, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04 Non Illegitimi Carborundum > "Jim" <jimboq1@rcn.com> wrote in message > [quoted text clipped - 16 lines] > choice. There is almost certainly nothing here left for you. If you do it, > please keep in touch. If successful, some of us may follow. Here's some you might be able to check with Ed Van Overloop Ed Van Overloop is a 17-year survivor of prostate cancer that in the Spring of 2005 became stage-4 terminal. Ten years ago he formed a North Jersey cancer support group focusing on integrated and alternative therapies. Starting with 5 original members, it has grown to a well-known active group with an email mailing list of over 400 people, and meetings with attendance from 50 to 200 people. The CARE Support Group is the only Alternative group that is recognized and listed in the NJ support group listing. Meetings are held once per month in Ridgewood, NJ. (For more info, email 31evo@optonline.net.) Ed is a long-retired Electrical Project Engineer who was 77 in April of 2005. He and his wife Gloria have 3 grown children and 2 grandchildren and live in Northern NJ. http://www.newsun.com/leonardis.html After 16 years, my long-time dormant prostate cancer struck back with a vengeance in the spring of 2005. A bad reaction to antibiotics, given to stop a prostate infection, seemed to trigger extensive bone metastasis from my hips to my shoulders. The antibiotics gave me severe nausea, followed by weakness from lack of eating (I lost over 20 pounds). Next came heavy bone pain, which I found unbearable even with painkillers. I must say that when the pain level of bone metastasis reaches the level of all of your life's toothaches at once, combined with nausea, weakness, and a total helplessness, it really gets your attention! About 2 months into this ordeal, and a week after a bone scan confirmed the metastasis. I decided to go to the Leonardis Clinic in Germany, one of the facilities featured on the DVD. I was there for 3 weeks .In addition to chemotherapy, I was given liquid shark cartilage from Canada (which will stop angiogenisis); an IV of a special form of Sellenium; an IV of a special form of Vitamin D and Calcium; and an Amino Acid mix to prevent chemo from causing liver problems, plus several other useful supplements. He's on the Phoenix list http://www.phoenix5.org/supportgroupsNJ.html (Ridgewood) http://www.karentinklerappeal.co.uk/html/press_articles.html Karen Tinkler UK inoperable esophageal cancer 25/08/2006 the cost of her treatment at the Leonardis Klinik in Bavaria, which could eventually top £100,000. diagnosed in June, is due to return to Germany with her sister, Christine Davis, next weekend for more treatment to shrink the tumour. Contacts:http://www.karentinklerappeal.co.uk/html/contacts.html (warning: they are looking for money - so ask how she's doing and if surgery was possible] they use coley's toxins, hyperthermia, Vitamin C and more (see later) and a warning. http://www.geocities.com/HotSprings/Villa/5443/alts/anon1.html In 1998, I received IV Vaccineurin (Coley's Toxin) at a clinic in Germany. As I understand it, there are only two clinics still offering "fever therapy" in Germany I had [another condition] not cancer, I checked in at around 5.00 pm on a Wednesday. The next morning, I was prepared with a vitamin C infusion and an enema. I was given the IV Vaccineurin around 11.00 am in my room. The dose was 0.01ml. I was blood pressure and temp monitored every 15 minutes. My temp rose 1C over two hours. I had no other symptoms! At 1.00 pm I was taken down to the infra-red room and all vital signs monitored. A nurse sits with you at all times. I suppose this phase is like being in an ICU in all but name. I am very disturbed to find out that infra-red hyperthermia can cause nerve damage. I had only recently had a problem with nerve inflammation before I went for fever therapy, but it had gone by then. I woke up with nerve pains the following morning after fever therapy. They are not as bad as they were but they are still causing me problems 5 months later. from my experience I would definitely dissuade anyone from trying infra-red hyperthermia, which now complicates the usefulness of the Leonardis for cancer patients. [we already know that from others who've tried including some doctors - steph and madiba - part of their training way back when] http://www.findarticles.com/p/articles/mi_m0ISW/is_277-278/ai_n16702337 Dr. Scheller's work is now supervised by Dr. Ursula Jacob of the Leonardis Klinik in Bad Heilbrunn, Germany (www.leonardis-klinik.de). In the US, Dr. James Forsythe, MD, at the Cancer Screening & Treatment Center in Reno, Nevada, is following many of the cancer treatment protocols of Dr. Scheller (www.drforsythe.com). Many other physicians and cancer clinics are also following Dr. Scheller's treatment strategies and using the pharmacogenomic testing of Bio-Focus laboratory; Dr. Dana Flavin-Koenig in Greenwich, Connecticut consults and offers this testing (www.collmed.com). t was determined that a chemotherapy agent primarily prescribed for ovarian cancer was the best treatment for his prostate cancer. Van Overloop presented to Scheller with a PSA score approaching 1000; after three weeks of treatment, his PSA score dropped to 50, and a month later his score dropped to below 15. Note that Van Overloop's treatment at Dr. Scheller's clinic was not limited to chemotherapy. He received many other therapies, including hyperthermia treatment and specific immune therapies. Somebody named Horn of "the famous 'Siegfried and Roy' act" who was bit by a tiger and paralyzed backed out of experimental stem cell therapy at the exclusive clinic in his native Germany. http://www.expatica.com/actual/article.asp?subchannel_id=52&story_id=22147 Vitamin C's in clinical trials - at least one for ovarian cancers in, I think, Kansas. Not enough participants, when I last checked. The cost of the vitamin C was claimed to be the reason. These are the two clinical trials... Combination Chemotherapy With or Without Rituximab in Treating Older Patients With Non-Hodgkin's Lymphoma Conditions: Leukemia; Lymphoma 2. Recruiting Combination Chemotherapy Followed By Radiation Therapy in Treating Patients With Aggressive Non-Hodgkin's Lymphoma Condition: Lymphoma Rituximab is Rituxan already approved in the US. I think I also saw where Leonardis tried Herceptin (a breast cancer medicine) on someone Seems to be a breast cancer patient from UK and from what I see was told to take B vitamins for nerve damage from chemo by Leonardis and other medicines mentioned are standard for US..perhaps not yet approved in UK by N.I.C.E. http://www.wigstowishes.org.uk/index.html I had a phone call today to tell me that Nem, the lady who introduced me to the Leonardis Klinik has passed away Attended Nem's funeral today. In particular Dawn, who had travelled over from Ireland for the funeral. She was a good friend of Nem's and I will have a lasting memory of the last time I saw them together at the Leonardis when they had a fit of the giggles and could not stop laughing. Tht's what I've compiled for what it's worth. J My apology on this one... > I think I also saw where Leonardis tried Herceptin (a breast cancer medicine) on > someone [quoted text clipped - 7 lines] > of Nem's and I will have a lasting memory of the last time I saw them together > at the Leonardis when they had a fit of the giggles and could not stop laughing. I missed the fact that her cancer has now spread to the liver. Surgery in UK for the esophagus is probably out of the question. J http://www.karentinklerappeal.co.uk/html/announcements.html My name is Robert Tinkler and I would like to bring everyone up-to-date as to what is happening regarding the cancer treatment my wife Karen is having in Germany. Rumours are going round that it is all over and the fundraising is a waste of time. This is not so .Karen has had a little setback recently when she met a surgeon in Munich .While we were hoping for a chance of an operation, tests revealed that the cancer has spread to Karens liver. This does not mean that the treatment is over. On Monday Karen starts Chemotherapy to treat the cancer in her liver and to get it in remission. We will then look towards an operation in the future. J., It's very difficult to evaluate stories like the ones you have presented. We don't know how representative these people were of patients treated at Leonardis, what all their disease characteristics were, what other treatment they had, or what happened to them after the report. We will never, for example, hear the stories of the people who were treated at a clinic and died there, or died shortly after. Those people never get a chance to tell their story, or have other things to think about when they get home than writing up their experience. We will never know what percentage of patients are truly helped at Leonardis. So we just don't know how the Leonardis Clinic might compare against say, Sloan-Kettering, the Cleveland Clinic, the Mayo Clinic, M.D. Anderson, or other famous (or even not so famous) clinics in the U.S. Also, when people are treated with a large combination of therapies, we don't know which one or ones were actually effective for them. Some of these people might have had the very same chemotherapies they could have gotten in the U.S. and those therapies might have been responsible for their positive responses. The supplementary therapies from Leonardis might actually have done them more harm than good, but the benefit of the chemotherapy was great enough that, on balance, they improved. I am not discounting these stories, and I'm certainly not criticizing Jim's decision to seek treatment there. He has made a rational decision based on the fact that he has no other real alternatives. Places like Leonardis seem to operate at the boundaries of good medical practice. From one perspective, they appear to be extending those boundaries and offering innovative care. From another perspective, they appear to be crossing those boundaries into the territory occupied by quacks and charlatans. I'm more suspicious of the latter than the former, but I'm not really qualified to judge. I'd like to hear the opinion of a real medical expert. Alan > Places like Leonardis seem to operate at the boundaries of > good medical practice. From one perspective, they appear [quoted text clipped - 6 lines] > really qualified to judge. I'd like to hear the opinion of a > real medical expert. I don't disagree with you, Alan. I've invited him to sci.med.diseeases.cancer to ask the 2 experts there, but he hasn't posted there (yet) and I"ve provided him the name of a prostate cancer patient who went there http://www.phoenix5.org/supportgroupsNJ.html RIDGEWOOD Cancer Alternatives Research Exchange PO Box 513, Park Ridge, NJ 07656 Meets 2nd Thursday 7:30 PM Contact/Facilitator: Ed Van Overloop ( the contact info is on the webpage) For all we know Ed or Ed's wife could tell him not to bother wasting his tiime and hope. I think he's wasting his time and money and valuable time he could be spending with his grandkids. And what I feel is convincing evidence that the chemos and Vit C they offer are in the US as well. But what I'm seeing is that he does not want to hear it. So be it. J J I went to the site you suggested. It currently is locked out for new subscribers outside Italy. Jim >> Places like Leonardis seem to operate at the boundaries of >> good medical practice. From one perspective, they appear [quoted text clipped - 29 lines] >So be it. >J > J > I went to the site you suggested. It currently is locked out for > new subscribers outside Italy. I don't know which you mean, Jim. But wonder if you should ask here on the best expert in the US (or near you) to review your case to make sure you've adequately exhausted homone management of your cancer? J >> J >> I went to the site you suggested. It currently is locked out for [quoted text clipped - 6 lines] > management of > your cancer? I'd bet you would get more agreement among us then "the experts". > I'd bet you would get more agreement among us then "the experts". Hello Steve, I did not recognize Jim, as a regular here, but have since read some of his archived posts and now see the situation for what it is. He was diagnosed with bone mets, so Jim's cancer was advanced 2 years ago. He's had the best of what oral anti-cancer medicine can offer for his situation. In his current situation, having tried everything available in the best country in the world, for cancer care, the US, a person is not better because their PSA levels lower some, they are not better because a scan shows a bit of shrinkage, they are better if they can eat and properly void, because bleeding if applicable, is stopped, they are better if nausea is palliated, They are not better because a scan looks better unless their pain is palliated and that can happen with pills and/or patches, and/or external beam radiation, which I don't think, but not sure, he has pursued, can help (some) bone mets. They are better because they are kept as mobile as possible (ie pre-emption of pathological bone fractures where possible). All of this and his family and grandkids are available in the US of A. I'm sorry about your cancer, Jim. Godbless Jim. If you go, try to see what they're up to ASAP so you can get back to your family ASAP. J > All of this . . . are available in the US of A. Is that true in Jim's case? At some point many of us may need to bypass the USFDA and go for the brass ring if there's *any* rational, researched chance of a benefit. Jim loves Germany, speaks it, deserves a vacation, may have exhausted all the FDA allows, *wants* to do this, and has only months left to do it. Who the hell are we to twist his arm one way or the other, unless we can find strong indication it may harm him? What's one month out of a year under the same roof as a bunch of relatives but a *vacation*? And reading between the lines, Jim sounds nostalgic for another visit to a place he loved in a younger life and fondly remembers. He doesn't owe his grandkids squat, and even if he did, who sez he can't buy a wing in the Leonardis Clinic for himself *and* buy a wing at Harvard for the grandkids' education? Besides, _guess_whose_money_it_is_. If he were my father, I'd feel guilty even *thinking* of letting him sacrifice his dream so I wouldn't have to support my own kids in the style to which they'd love to become accustomed. I may shop at Walmart and use coupons to preserve my relatives' inheritances, but I'll be damned if I'm gonna sacrifice *my* Maserati (that's a joke, but you get the idea) just so *they* can buy one. If (when?) I were in Jim's shoes, and thorough research told me the testimonials are anywhere near legit (good luck on *that* one) and Leonardis isn't harming people, I'd sure do it . . . and I'd report back to the cancer forums in great detail afterwards. In the meantime, I'm calling the Maserati dealer. I.P. J Thank you for a very nice post. I think you have a handle on my situaltion. Yes, I was diagnosed with metesatic PCa in March of 2005. My treatment has been one disappointment after another. Nothing really worked. Hormones work great, at first. At 6 months the PSA started back up. Someone posted "desperate people do desperate things". I am desperate. My Oncologist finally gave me a prognosis of "ballpark 2007". That is this year. If he is right, and I believe he is, I have up to 10 months to live. A cousine of mine in Youkon teritory emailed me saying that the Quinn men are extremely stuborn. Her father (my uncle) complained that his brother died at 89 and that he could have lived longer if he had just taken care of himself. The decision to go to the Leonardis Clinic will be made with the collaberation of my Oncologist. My Urologist is the one who sent me on this journey so I know he's in favor of it. I'm going to the Oncologist Wednesday. At that time I'll provide him with all the information I have. The visit a week after that we should have the serious talk. I want him to let me know when he's running out of things to use on me. I'lll let y'all know what is going on Jim Quinn >> I'd bet you would get more agreement among us then "the experts". > [quoted text clipped - 20 lines] >they're up to ASAP so you can get back to your family ASAP. >J > J > Thank you for a very nice post. I think you have a handle on my > situaltion. Jim, one more voice here. I think IP is right on the money. Maybe you want a little adventure, to get away from your surroundings and maybe be with others in your situation who can relate. You sound very much alive. Go. Leah Hi Jim, Given the fact that you have failed the Provenge Clinical trial and do not respond to the most active chemo protocol(taxotere) it seems reasonable that you consider the Leonardis Clinic. They do use hyperthermia and various combinations of herbal, nutritional and chemotherapy agents. Bottom line: it is only money and you seem able to handle it without a problem. The question is: by going there am I missing some form of treatment here? If the answer is no, go for it. On the other hand, if the answer is yes make sure that those promoting the treatment have a solid base to support it. I have heard of this Clinic before and those that talk about it are highly supportive. Let me say that I have no financial interest either way and in view of your current situation you might derive some benefit from the trip both physically and emotionally. If you decide and go please let us know how it goes there. Wish you the very best outcome. RalphV pcainaz.org/phpbb > I would like to thank all who responded, even the one negative about > the clinic. [quoted text clipped - 70 lines] > >Thanks > >Jim Jim, If I were in your situation, I would go for it. They are not a snake oil operation and you have nothing to lose except some cash. I wouldn't expect a miracle cure but I would hope for some kind of remission that will give you a few more good years. If it doesn't work you're no worse off than you are now. Please do keep us informed since some of us may be walking in your shoes one day. Good luck. Dave Perry > I would like to thank all who responded, even the one negative about > the clinic. [quoted text clipped - 72 lines] > > - Show quoted text - Best of luck Jim. Alan > From what I've found, they use tests and therapies which are not > available in this country. The FDA is quite pissy about what doctors > can do. They are protecting us from hacks, but in the process > restrict what competent physicians can do. > > Jim There's an answer for that, trials and experimental medicine. Isn't someone, somewhere looking for advanced cases, maybe at NIH/Bethesda? While you might afford the treatment, let's say it's $50,000 and 1 month. If you truly have a year left, do you want to trade 10% of the time remaining with your family and a year's college tuition for your grandchildren, chasing an unapproved therapy? I put that thought on the table even though, like others here, I may face that same question myself. -kh > If you truly have a year left, do you want to trade 10% of the time > remaining with your family and a year's college tuition for your > grandchildren, chasing an unapproved therapy? In his shoes, yup, after more research. I.P. Jim, Whatever you feel you have to do, I think you should do it and not worry about what anyone on this group thinks. Some of us would no doubt decide differently in your shoes. Some of us might decide the same. But I think all of us would agree in believing that this is your decision to make, and all of us wish you the best possible outcome. Alan |
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