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Chordoma and proton beam treatment

A: What chordomas areCauses of chordomasSymptoms of chordomasTreatmentNew treatmentsSupport for people with chordoma What chordomas areChordomas are rare cancers. They develop from cells that are formed very early on when a baby’s spine is developing in the womb. The development of the spine starts from a band of fibrous tissue called the notochord. The bones of the spine (vertebrae) then develop around this notochord. When we are born we no longer need the notochord, so it usually disappears. But sometimes some cells remain. It is from these cells that a chordoma can develop. These cells are found at either end of the spinal canal – in the base of the skull and the lower back or tail bone (sacrococcygeal area). Occasionally they are found in other bones, such as the bones of the arms or...

proton Beam Article in New York Times

A: Hi daff, Would you mind telling us whether the author is an MD, and whether there is evidence he is a practicing expert in proton beam therapy? (That''s an area with which I have had little contact, so it''s not strange that I don''t recognize the name. Is the author from Loma Linda, the institution that has been practically synonymous with proton beam until recent years? Two men have spoken to our support group about their favorable experiences with it, both treated at Loma Linda.) Also, is the entire book focused on that option, or does it cover many options but have a special focus on proton beam? My own impression is that the best insights into particular therapies are from doctors who specialize in those...


Thoughts on proton beam therapy?

A: The latest photon equipment, the Varian Trilogy Rapid Arc has not been used long enough to make any valid comparisons. But the few studies that touted the proton beam machine have been shown to be fudged in favor of that method.. The Varian machine mentioned above uses a low-energy CAT scan before every "shot" to insure the beam is exactly on target. It''s head can rotate completely around the patient providing many more beam paths thus minimizing damage to healthy tissue..yada yada yada...So advancements are being made rapidly in the field of radiation treatment.. proton treatment might be worth looking into if there is a center near where you live. For many people, the 2 month treatment cycle away from home is just too expensive...


proton Beam Versus HIFU Ultrasound Which Is Better?

A: I spoke to the Toronto Clinic that does this treatment. The prostate is destroyed or cooked. Some of the tissue may come out in the urine. You have to wear a cathereter for 2 weeks to a month. This is because the ureatha will swell from the procedure. She said the survival rate is 94%. Another site said survival rate was bewteen 84 & 93 %. 13,000 men have had this treatment done worldwide so far. There are clinical trials in the USA going on at the moment. But they are only for people who have a reoccurance of Prostate Cancer. I won''t try to go through all I''ve written on this board about proton treatment, but I''d suggest you read some of the posts from me and others over the past few months to get a better idea of what this entails. Your comment that you...


proton Beam vs Surgery

A: My husband had prostate cancer he had his surgery one year ago. His psa was 4 and gleason was 6. He has never been sorry one day that he had his removed. Don''t put the horse before the cart just wait until you have all the information from your husbands doctor and then you can make a informed and with the help from your doctor any type of treatment that would be possiable. There are many type of treatments and one type may not be right for everyone. If your husband does have a problem maybe his brother will get tested also. I tell everyone that I know please get tested for prostate cancer my husband had no sympthoms it is so important to let people know that it can spread and when it does there maybe nothing they can do for you and it doesn''t have to be that way if they get checked by...


proton Beam Therapy - new draft guidance document just published

A: The committee included many references concerning prostate cancer, most covering proton beam. References 114 through 158, 45 references, are pertinent. Some of them are from Slater and Rossi at Loma Linda. Just posted on the Prostate Cancer Infolink: The summary of the study shows no significant advantage of proton over conventional therapy using IMRT with photons....


How many years will a man with prostate cancer live following proton beam therapy and following IGRT?

A: Here is all I could find on it. I believe it says something under "Survival & Staging" that might help. I do know that my daughter''s grandfather has had prostate cancer for 10 years, is 82, and is still going strong. I''m not sure if that helps or not. If you need anymore help please let me know....

proton Beam / Insurance & Medicare?

A: I''m not an expert on Medicare, but didn''t think that you can be denied coverage if you had previous insurance in the state and enrolled in Medicare when you are first eligible. This is something for you to be upfront with- there are many companies that sell the supplemental coverage. Have you asked how they treat a preexisting condition that has come up within 6 months of your turning 65? This has to be a common question. I wasn''t yet 65 and insurance coverage turned out not to be an issue for me, although my insurance company dragged its feet before approving coverage. I was part of a PPO group plan. If you have an HMO, that might be why they say you are not covered for treatment outside your area. That was not a limitation for me. If you do not have an HMO, then they may not have the...


proton Beam Therapy??

A: Glad to see that my prior posts may have been some help. I obviously support your choice- but I must say that even with all the due diligence that I did, I hadn''t made the final choice on Jacksonville until my consultation there. Despite the distance from the east coast, I always thought if it were proton treatment, then I''d end up at Loma Linda. But as I said, the consultation at University of Florida proton Therapy Institute (UFPTI), encouraged strongly by a patient that was already there undergoing treatment, and the tour there, led by Gerry Troy, convinced me it was at least as good, and maybe a better choice, than going out west. That''s partly because they''ve adopted some newer practices and can better pinpoint the area to be...


The Right Dose of proton Beam Radiation

A: Interesting to read the highlights from the summary. It didn''t mention the period of time it took place. They seem to be using a combo of photon followed by proton. When I had my treatment two years ago at the Univ of Florida proton Therapy Institute, my dosage of proton only was 78 gy. That was pretty much the standard even then. I don''t know if they''re using higher doses today. So the study was comparing 79 combined photon/proton with 70 gy. That''s one of the problems with the studies, as they seem to be reporting on a situtation that has already been improved, but results from those people won''t be available until sometime in the future. Can you send me a link to the...

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