(Web) Extra: Read All About Proton Beam Therapy
After writing an article last September about prostate cancer treatment options, I received a flood of mail chastising me for not mentioning proton beam therapy. I noted in a subsequent blog entry that, as a result of that feedback from readers, I decided to take a second look at proton beam therapy. The resulting magazine piece was published Wednesday on the U.S. News website and will appear in print on Monday. Let me know what you think of it.
For that article, I expanded my scope beyond prostate cancer to other cancers and also looked at the expansion of proton centers. It's a fascinating and complex topic, and one that I expect we'll be hearing a lot more about in the future. In the meantime, I've excerpted and responded to six of the comments I got on my earlier blog post. Here they are, in no particular order:
Eric of Washington State on Loma Linda
I was treated with non-surgical proton therapy at Loma Linda California in 2004. I went hiking, golfing or other tourist activities after my daily, no pain treatments. Some days I just worked out in their excellent gym and pool, at no extra charge, all part of the proton package. Their goal, which I found that the staff has bought into is to treat the "whole man" and to support the patient with great care and concern for the patients experiences by suggesting sights and activities.
Eric, you are hardly the only one who seems to have had quite a positive experience at Loma Linda. Many readers reported—gushed even—about the excellent medical outcomes and care they received there. That's not to say, however, that I didn't receive a handful of comments praising the services of the other centers as well. And, perhaps more importantly, it's not to say that I didn't also receive input from the occasional Loma Linda proton patient who did experience side effects. One of those patients suggested that such patients may be more common than many think because men with medical problems tend not to be very vocal about them. (As if illustrating his point, he asked me to withhold his name.) In any case, there's no doubt Loma Linda is doing something right.
Tags: prostate cancer | proton beam therapy
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men talk
A current Loma Linda patient (as of April 25 nine more treatments to go) I would like to take exception to " ...suggested that such patients may be more common than many think because men with medical problems tend not to be very vocal about them"
At least with in the group of patients we are very open. Maybe as patients we have the common bond of going through simillar experience and are more than willing to compare notes on treatment, side effects and solutions. Until this experience I have never had such open conversations about bodily functions with other men. There is no topic not acceptable.
side effects
My friend had this proton beam treatment at Loma Linda and experienced very bad side effects. After going back to Loma Linda several times he was eventually diagnosed with stage 5 radiation sickness. However, since they (Loma Linda) cured the cancer they would not do anything for the radiation sickness. After helping him find other doctors to help him myself,including Dr. Pantuck UCLA and Dr Parsons UCSD , he is functional and does not have to carry a bladder bag around with him anymore. Although he does experience a lot of pain to this day and it has been over 2 years since this proton beam treatment at Loma Linda. However, my biggest concern was when I posted this story on a supposedly non-biased prostate blog to warn people of this and they ended up locking me out of the website and erasing my blog. I wrote Loma Linda 7 handwritten letter of my own with my concerns of the treatment of my friend and then have never responded to any of my letters and additional email. Also I have corresponded with one other person that had similar side effect but not to this extreme but he did mention that Loma Linda treated him the same way when he complained of the side effects and he had to find treatment on his own. I think people should be warn that there could be extreme side effect and these side effects have happened before they decide on this treatment.. If you have had similar experience with Loma Linda and this treatment please contact me at bg@airmech.com Thank you, Jamie
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Loma Linda Proton Therapy
Thanks for your article. I am 2/3 through and can report very insignificant side effects and a wonderful reception from a very patient friendly environment. Too early to tell about lasting side effects but I will be very forthcoming if there are any. To date, everything others told me about this place has been understated and I am delighted with the way they look after the total needs of the patient and the way the community responds to us as well, ie one of the local private country clubs with a terrific golf course allows Proton patients to join by paying the regular monthly dues at a slight premium over regular members but with no initiation fee. This encourages exercise, fresh air and comraderie with others.
Apr 18, 2008 15:34:19 PM [permalink] [report comment]