Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Hi , Let me tell you about my experience with PBT. I can't speak highly enough about the technology and science. IF you are a candidate for Proton Beam Therapy go for it. BUT, please be careful which of the current five Proton Centers you choose. I have recently completed a course of PBT at Loma University Medical Center (hereinafter LLUMC) in SoCal. I had a little urinary urgency and burning during the treatments, pretty much handled by Flomax as prescribed by my assigned radonc, and ABSOLUTELY NO OTHER SIDE EFFECTS (pardon my shouting). I have not had my 4-month PSA yet, but I have faith in the technology. PBT is the only modality that has any time-line track record. IMRT is 4-5 years old, Tomo is 2-3 years old. LLUMC has been doing this since 1990 give or take. It is an assembly line procedure. You can be in and out of your daily treatment in less than an hour if the machinery is working properly that day. Many of the guys had their treatment then went to play golf, toured many of the interesting places in SoCal, the locals went to work or did whatever else they wanted to do to pass the time. CAVEAT - you need a boatload of patience to be a Guest (euphemism for patient) at LLUMC. The equipment is old, late 1980's vintage for the most part. The technology was real high tech for that time, but is more commonplace today. They mix analog and digital technology, which has certain drawbacks, and things do break. They have (upon information and belief) recently lost some senior technical staff to other proton centers and have a lot of breakdowns, which last from a few minutes to more than 36 hours in duration. If you have the patience and can deal with the " Stepford Wives " type of information presentation being supplied when you have a question and some of the support services cheered on by Elmer Gantry incarnate then LLUMC has the most experience. If your frustration level (I'm a type " A " ) sets you off, check out some of the other centers before committing to LLUMC. You can contact me off list: my email is < philwalchap at yahoo.com > Have you contacted Proton Bob Marchini yet? his site is http://www.protonbob.com/proton-treatment-homepage.asp . He has many testimonials from people who have had proton treatment over many years. I contacted about 10 of these guys by phone or email before making my decision and I will tell you that they are all very positive about the experience. Best of luck to you, Phil =============================================== > > Has anyone here had any experience with PBT...positive or negative? > > It has emerged as my first choice for treatment, but I do not want to > make any hasty decisions. > > Thanks much. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 , I completed Proton Beam therapy at Loma on February 14th of this year. The only problem I had during treatment was a weak stream that was treated by Advil four times a day. Sexual intercourse was also a bit uncomfortable while I was undergoing treatment. I had my first follow up PSA in June and it dropped from 6.6 to 1.4. I feel great and have had no lingering side effects. The weak stream returned to normal (as did sexual function) about four weeks after treatment was finished. I stayed active during treatment, never missed a day of work and have remained active. I just changed jobs and relocated to Las Vegas. In short it did not slow me down at all. It was definately the right treatment for me and I would make the same decision again. You are right to take your time and consider everything. When you are sure of the direction you want to take, it is such a relief. Make your decision and do not look back. Age 57 Gleason 3+3=6 Original PSA 6.6 (now 1.4) Shuey wrote: Has anyone here had any experience with PBT...positive or negative?It has emerged as my first choice for treatment, but I do not want to make any hasty decisions.Thanks much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Hi , This form of therapy has been very fully discussed over the past three or four months – too fully some feel – and if Fuller Joners was not on his vacation you would undoubtedly have had a response from him. If you click on Messages at the fot of this mail and enter Proton Beam in the search tool you will find over 300 postings that mention PB paging through those, I am sure you’ll find a good deal of useful information. I also have a number of men, including Fuller, who have shared their experiences on my websites at http://www.yananow.net/Radiation.htm#pb Most of them are happy to correspond with anyone considering the treatment. From all I have read, men who go to Loma have a very high level of satisfaction with the outcome. All the best, Terry Herbert in Melbourne, Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. Jun '07 PSA 42.0 - Bony Metastasis. My site is at www.yananow.net As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data: Dr “Snuffy” Myers. From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Shuey Sent: Wednesday, 18 July 2007 10:29 PM To: ProstateCancerSupport Subject: Proton Beam Therapy Has anyone here had any experience with PBT...positive or negative? It has emerged as my first choice for treatment, but I do not want to make any hasty decisions. Thanks much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Hi Terry.I would be very interested in collecting information in our web based Medical Smart Chart.I am particularly interested in patients who had radiation with higher Gleason of 7 and above.Most studies follow patient only 5-10 years. There is a problem that many of the patients are lost up to follow up. If we start now and input as many people on the Medical Smart Chart, perhaps in 10-15 years from now we will have valuable information about what happens to patients who have high Gleason and are more than 10 years after the radiation. The interesting report by Dr Zeitman from Harvard is that the incidence of rectal cancer is higher in patients who underwent radiation to the prostate. This was found in the years 10-15 after the radiation. It was not a very high incidence, but it was the similar incidence of rectal cancer if you have members of your family with the disease. I am not bringing this example to scare readers, but to emphasize the fact , that it should be the duty of the Radiation Doctors to tell the patient about this remote possibility of developing rectal cancer. This should take place especially in young men undergoing radiation treatments to their prostate. Dr Zeitman himself was surprised about the findings. When things happen to a patient after more than 10 years, this information tends to be lost. I am not sure that the rate of colorectal cancer due to radiation will increase or not over time. There are two factors here that may create different outcome in the future: 1. We became more sophisticated with the targeting of the prostate, we are better than 10 year ago, so could be that the rectum will get less radiation and hence less possible developing cancer. 2. We are giving higher doses of radiation , so the question how it will affect the incidence of rectal cancer. The practical point of this discussion is the following: For some reason, patients after radiation, many of them neglect to do a Digital Rectal Examination 10 years after radiation, especially if they feel they were cured from prostate cancer. Another practical issue is the fact that some of the patients may develop some rectal bleeding and assume it is from radiation. So we can save those few who might develop rectal cancer, I would recommend everyone not to assume and have the colorectal areas checked carefully every year. Having the digital exam, regardless how fearful or unpleasant , it is still part of good medicine to check once a year.Here is a little caveat reported to me personally by Dr Zeitman from Harvard. After 10 years of Proton Beam Radiation- they found a tremendous number of patients still having microscopic hematuria ( I think it was like 50%). There may be no clinical significance to a few red cells in the urine. But it does make the point that the effect of radiation linger in the body for decades and young men should be aware of this. The issue of radiating breasts of young men before taking Casodex, I will leave it for another note. Overall, I had a very good and positive experience with the patients I sent to Loma over the years and Dr Rossi was always extremely caring physician. I also want to congratulate the members of this list. I think the level of materials presented over the years on this list keeps improving and it is impressive. Keep doing to good work.YoursCoach BarkenOn 7/18/07, Terry Herbert <ghenesh_49@... > wrote: Hi , This form of therapy has been very fully discussed over the past three or four months – too fully some feel – and if Fuller Joners was not on his vacation you would undoubtedly have had a response from him. If you click on Messages at the fot of this mail and enter Proton Beam in the search tool you will find over 300 postings that mention PB paging through those, I am sure you'll find a good deal of useful information. I also have a number of men, including Fuller, who have shared their experiences on my websites at http://www.yananow.net/Radiation.htm#pb Most of them are happy to correspond with anyone considering the treatment. From all I have read, men who go to Loma have a very high level of satisfaction with the outcome. All the best, Terry Herbert in Melbourne, Australia Diagnosed '96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. Jun '07 PSA 42.0 - Bony Metastasis. My site is at www.yananow.net As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data: Dr "Snuffy" Myers. From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Shuey Sent: Wednesday, 18 July 2007 10:29 PM To: ProstateCancerSupport Subject: Proton Beam Therapy Has anyone here had any experience with PBT...positive or negative? It has emerged as my first choice for treatment, but I do not want to make any hasty decisions. Thanks much. -- Material posted here is for general education purposes only and does not take the place of medical advice from your treating physician. No patient-doctor relationship is created or implied. Israel Barken, M.D. Medical Director Prostate Cancer Research and Eduction Foundation (PC-REF) 501©3 non profit organization 5480 Baltimore Drive, #202La Mesa, Ca. 91942 www.pcref.orginfo@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2007 Report Share Posted July 19, 2007 G’day Coach, You’ve probably never been to my Yana site – why would you :- ) but if you had you would know that there are almost 300 stories from men who share their experience. A number of these have had radiation of some kind. If you go along to http://www.yananow.net/Chart-Gleason.htm you will see that all contributors are listed by Gleason Grade at diagnosis and since their treatment choice is shown you would be able to identify and perhaps mail the men concerned for data for your project. Another interesting index of theses stories is by Year of diagnosis – at http://www.yananow.net/Chart-Year.htm#year this way of accessing the names would enable you to contact men who had treatment more than ten years ago – although there are not many who had radiation. All the best, Terry Herbert in Melbourne, Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. Jun '07 PSA 42.0 - Bony Metastasis. My site is at www.yananow.net As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data: Dr “Snuffy” Myers. From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Dr Barken PCREF Coach Sent: Thursday, 19 July 2007 3:43 PM To: ProstateCancerSupport Subject: Re: Proton Beam Therapy Hi Terry. I would be very interested in collecting information in our web based Medical Smart Chart. I am particularly interested in patients who had radiation with higher Gleason of 7 and above. Most studies follow patient only 5-10 years. There is a problem that many of the patients are lost up to follow up. If we start now and input as many people on the Medical Smart Chart, perhaps in 10-15 years from now we will have valuable information about what happens to patients who have high Gleason and are more than 10 years after the radiation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2007 Report Share Posted July 20, 2007 Hi TerryThank you.I looked at the table with the 300 patients.First, I am not sure it would be alright for me to go and mine this information we need permission from the individuals and that will be a very tedious and very time consuming project.. Second, my time is maxed out with all the juggling of the projects that I am involved now.:-)I will probably will need to find time and call you directly and see what can be done and work out some solution to deal with the data. Keep doing the excellent work.BTW- How are you doing, coping with your disease?YoursIsraelOn 7/18/07, Terry Herbert < ghenesh_49@...> wrote: G'day Coach, You've probably never been to my Yana site – why would you :- ) but if you had you would know that there are almost 300 stories from men who share their experience. A number of these have had radiation of some kind. If you go along to http://www.yananow.net/Chart-Gleason.htm you will see that all contributors are listed by Gleason Grade at diagnosis and since their treatment choice is shown you would be able to identify and perhaps mail the men concerned for data for your project. Another interesting index of theses stories is by Year of diagnosis – at http://www.yananow.net/Chart-Year.htm#year this way of accessing the names would enable you to contact men who had treatment more than ten years ago – although there are not many who had radiation. All the best, Terry Herbert in Melbourne, Australia Diagnosed '96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. Jun '07 PSA 42.0 - Bony Metastasis. My site is at www.yananow.net As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data: Dr "Snuffy" Myers. From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Dr Barken PCREF Coach Sent: Thursday, 19 July 2007 3:43 PM To: ProstateCancerSupport Subject: Re: Proton Beam Therapy Hi Terry. I would be very interested in collecting information in our web based Medical Smart Chart. I am particularly interested in patients who had radiation with higher Gleason of 7 and above. Most studies follow patient only 5-10 years. There is a problem that many of the patients are lost up to follow up. If we start now and input as many people on the Medical Smart Chart, perhaps in 10-15 years from now we will have valuable information about what happens to patients who have high Gleason and are more than 10 years after the radiation. -- Material posted here is for general education purposes only and does not take the place of medical advice from your treating physician. No patient-doctor relationship is created or implied. Israel Barken, M.D. Medical Director Prostate Cancer Research and Eduction Foundation (PC-REF) 501©3 non profit organization 5480 Baltimore Drive, #202La Mesa, Ca. 91942 www.pcref.orginfo@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2007 Report Share Posted July 20, 2007 Hi : Now that I have a bit of rest, let me answer our request. First what are your " numbers? " (PSA, Gleason, etc) Are you in Texas? If so you have the option of the M. D. proton facility at Houston http://www.mdanderson.org/care_centers/radiationonco/ptc/ I completed my treatment at Loma University Medical Center on March 8, 2007. So far NO side effects! My friends Laurel and Greg were my neighbors while Greg and I received our " daily dose of Protons " and Laurel has basically said it all in her previous post. I have written a book on protons and my experiences; my book is free to prostate cancer patients for downloading, at http://www.lulu.com/content/791195 Also, please go to www.protonbob.com and read the testimonials of over one hundred proton patients; many received treatment several years ago. As Terry sugested, study the YANA Site berfore making your decision. We each have our individual way of dealing with situations and problems, and I would say that you must make up your own mind what treatment you choose, based on your disease characteristics and your personal outlook on life and dealing with problems. As Dr. Barken stated, this should not be a decision in isolation, your loved ones and their own feelings and reactions should be considered. Feel free to email me off forum with any questions Fuller > > Has anyone here had any experience with PBT...positive or negative? > > It has emerged as my first choice for treatment, but I do not want to > make any hasty decisions. > > Thanks much. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2007 Report Share Posted July 20, 2007 The e-mail adddy is cnsjones " @yahoo.com " Quote Link to comment Share on other sites More sharing options...
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