New Proton Therapy Website

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Protons.com
New Member


Date Joined Apr 2007
Total Posts : 3
   Posted 4/3/2007 9:54 AM (GMT -7)   
Hello,
 
My name is Jeff Lawrence and I'm part of a media firm working in conjunction with Loma Linda Unviersity Medical Center to develop www.protons.com. Currently all of Loma Linda's information on Proton Therapy is housed at www.llu.edu/proton. We have put up a small site for www.protons.com, but this will soon be expanded into a robust site. We wanted to let the community know about the site, as well as ask what features those of you who have gone through Proton Therapy, at Loma Linda or another medical center would find useful if you were going through the process of researching Proton Therapy. I can be reached at admin@protons.com if you have any comments. I didn't mean for this to be a spammy type of post, but more informative. Thank you for your time, and I look forward to speaking with you.
 
Sincerely,
 
Jeff Lawrence 

pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 4/3/2007 4:13 PM (GMT -7)   
Hi Jeff Lawrence

I am in the process of being treated with proton radiation therapy for my prostate cancer at a very fine medical institution (not Loma Linda). I strongly object to your promoting this new website (i.e., www. proton.com) if it is an advertisement solely for Loma Linda. Perhaps that is not what you have in mind in terms of greatly building upon this website in the future. I hope so. Many new proton therapy centers are being opened in the U.S. and it is misleading to give one the impression that Loma Linda is still the only act in town. Loma Linda is a very fine medical institution--they have successfully treated thousands of men for prostate cancer since 1990. Loma Linda was too far away for me to consider it for my proton therapy. At this website we don't need to read advertisements. Our members are the best advertisements based on their treatment experiences at all kinds of medical institutions. We have certainly had many positive endorsements from members about their wonderful treatment experiences at Loma Linda.

What is really needed is a website that talks about and has links to all of the proton centers in the U.S. As more and more proton centers open, patients are more likely in the future to go to a proton center nearest where they live (that's what I did). Also, proton therapy is used to treat many types of cancers and is not restricted to prostate cancer. It is a wonderful treatment option which is expected to expand substantially in the years ahead.

I hope that your website would eventually include profiles of PC patients (on a voluntary basis) who have been treated for PC at the various proton centers. Men with PC need to network with other PC patients which is very helpful in their deciding on a treatment. This helped me greatly in deciding on my treatment. I would be happy, at some point in the future, to offer my profile and e-mail address so that recently diagnosed patients, in particular, could contact me to hear about my treatment with proton therapy. I find that most PC patients are willing to network with and help others who have PC. Profiles of doctors at the various proton centers with reference to research they have done would be useful. Statistics on the success of this treatment would also be helpful in the future. Other than Loma Linda, there are really not any longer range statistics because proton treatment has been limited principally to Loma Linda until recent years.

I think you need to tell us more about your plans for making your new website into a "real gem" about proton therapy treatment for PC without any bias toward a particular proton therapy center.

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.

Post Edited (pcdave) : 4/3/2007 5:38:55 PM (GMT-6)


Protons.com
New Member


Date Joined Apr 2007
Total Posts : 3
   Posted 4/3/2007 4:22 PM (GMT -7)   
Hi Dave,

Thank you for your reply. I didn't mean for it to be a purely promotional piece for Loma Linda. The site is going to be very robust, and will have substantial information for those who are looking into proton therapy whether they have prostate, brain, or other forms of cancer. I'm obviously new to this forum, and ill-advised as to what normal procedures are. This was mainly to get the communities feedback as to what information they were looking for and possibly had a hard time finding as well as letting them know that the official site of information for those who might be interested in Loma Linda is going to be housed on www.protons.com. I completely agree that there are many fine institutions around the country who offer proton therapy, and I'm glad that you were able to find one close to your home.

Sincerely,

Jeff Lawrence

pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 4/3/2007 4:47 PM (GMT -7)   
Hi Jeff

I was in the process of expanding my first post here when you replied--you may want to read it again. I only hope that your website will offer many of the things I have mentioned and many more. Everyone needs to know what proton therapy offers for all kinds of cancers. Where I am being treated, many children are being treated for various types of cancers. I see them everyday and it is an eye opener when you see what is going on in the real world. Those children, God Bless them, are so fortunate to have something as wonderful as proton therapy to treat and hopefully cure their cancers. I will keep an open mind about the new website and see what happens going forward. If you can show us that you really intend to do something worthwhile for cancer patients, including prostate cancer, then I don't think we will chase you away. I am afraid that advertisements will chase us away. I didn't choose my doctors and treatment center by reading advertisements--I checked out credentials and networked with patients treated by those doctors or medical institutions.

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.


Protons.com
New Member


Date Joined Apr 2007
Total Posts : 3
   Posted 4/3/2007 5:17 PM (GMT -7)   
Hi Dave,

Thank you again for your post. I myself am a member of several online forums and I hate the idea of outsiders coming in spamming the board with garbage. Your mention about patient profiles is something that we hope to integrate into the site. Other things such as videos and other rich media will also be included. Rest assured that no one from Loma Linda or myself will be on this forum advertising our services beyond adding to this thread when the new site is fully up and running. At that time I will let yourself and the rest of the community judge and see if it is informative and does a service to this site and others who are considering proton therapy. Until then if anyone has any suggestions please email me at admin@protons.com. Thanks!

Sincerely,

Jeff Lawrence
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