If you experience any weird issues while using the website, please post your issue here so we can assist you in debugging the problem or so we can fix whatever may not be functioning correctly. Please be specific in your details, include a link to the page you had issues with (if a specific page), and the date/time you experienced the problem. Other useful information would include what type of computer you're using (eg: Apple MacBook, Dell Dimension, HP Pavillion Notebook, etc), what operating system you're using (Apple OS 10.4, Windows XP, Windows 98, etc), and what browser you're using (Safari, Firefox, Internet Explorer, etc). Remember, please do not post any information that you may consider private (that you don't want the entire world knowing). If you'd like to contact us directly, you can do so at info@beating-myeloma.org. Thanks, Robert
Interactive Health Communication for longer, better lives.
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Copyright © 2008 Galen Foundation
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Web Design and Hosting by proVanceTek LLC
Ladies and Gentlemen --- Tonight you may or may not have noticed that you were unable to access the Beating Myeloma website for an hour or so. We have significantly upgraded the back-end that runs the website in order for us to continue working on some of the other modifications to the site and to the ListServ. Thank you for your patience tonight while we upgraded. You may notice some minor differences immediately, but the site should continue to function as expected. If you do experience issues, please feel free to email us at info@beating-myeloma.org
I think the website has to have something unique to offer. I think the fact that anyone who posts doesn't have to worry about his post being interpreted or, more properly, misinterpreted as "commercial" is a good start. At the ACOR list, there are so many members that individual "stories" or requests, while mostly treated with empathy, unless one has a very "healthy" ego, it is hard to follow-up. So I think that one positive that can be offered here is encouragement to share. The information that you continue to share, David, is good too. Is there progress on the curcumin study? I've been waiting until September for a reply from Dr. Aggarwal as to recommended doses to conbine with Revlimid. The month I was on curcumin alone was inconclusive. One month on Revlimid brought my IgA down from 3600 to less than 1700. Unfortunately, my HgB went down to 6.5 and I had to get a transfusion. Not my idea of fun. So my dose is now being gradually lowered to get my toleration level.
ShirleySFL in NYC
Finksolow- thanks for the feedback-yes, everyone should feel free to share and ask for feedback- this is the foundation of "interactive health communication." In fact, the more sharing, the more that members will participate.
Yes, the CPS should be ready in the next few weeks. The patient study effort turned out to be a larger programming effort than we thought at first but once the initial programming is completed, additional patient studies can be added relatively quickly. David
Kindly let me know how to change my web name. It is confusing, I think to others who see a different name from the one I use to sign. I prefer my name to be ShirleySFL in NYC. Thank you.
In case you haven't discovered yet, we've made some changes recently.... When you're logged in, you can go to the menu on the left side of any page on the site and click "My Account". There are tabs at the top of the "My Account" page, click the "edit" tab. From the edit window, you can change any of your user account / profile information. Simply change your username in the "Username" field to whatever you want your new username to be. Then scroll to he bottom of the page and click "Submit". A caution however, this may simply confuse others more; because now they are used to seeing your current user name and suddenly you'll be writing from a different one. A more appropriate solution might be to create a "Signature". You can do this from the same edit window. Just type your desired signature into the "Signature" field and scroll to the bottom of the page and click "Submit". Your signature will, from then on, be publicly displayed at the end of your comments. Thanks, Robert
Shirley,
I had stabilization with 15 mg Revlimid and just 500 mg curcumin. It stayed stable for four months after which I had to add 20 mg dexamethasone/week. I am stable again. Terry
I had a problem with trying to access Shirley's comment at http://beating-myeloma.or... and any later messages in that forum topic (Blood Test Results, under General MM) An earlier message about coffee enemas in this forum, by Deborah, just repeats one line over and over again and the computer basically goes spastic. Can't access anything after that. It's happened with that page repeatedly over a few days.I use Netscape. Since I was unsuccessful in trying to reply to Shirley's comment in the correct place, I just wanted to mention here that my husband has been taking digestive enzymes with his curcumin, after we read a couple of places that digestive enzymes potentiate the bioavailability of curcumin.
This forum post still has a bug which makes it impossible to access more recent posts.
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