A New Beacon For The Multiple Myeloma Community
There are probably few words more frightening than those of a doctor telling you “I’m sorry, but I’m afraid you have cancer.”
Those words are even more frightening when you’re told the cancer you have is one you’ve never heard of.
You can imagine, then, how tens of thousands of men and women around the world feel each year when they learn they have multiple myeloma.
They are told they have cancer. Multiple myeloma, to be specific. And it’s a very, very serious kind of cancer.
What do these men and women do after hearing such news?
Many different things. Each case is unique.
Eventually, though, they all start searching. For information. For answers. For others who are facing the same challenge they are facing.
For hope.
And, all too often, they don’t find enough. Enough information. Enough answers. Enough compatriots.
Enough hope.
We want that to change. Now.
So we at Light Knowledge Resources are launching The Myeloma Beacon.
The Myeloma Beacon’s goal is to give multiple myeloma sufferers more of what they’re looking for.
More information. More answers. More ways to connect with other multiple myeloma sufferers.
And – as much as we can – more hope.
We are just starting on this journey, so we have much to do and much to learn.
Currently, the Myeloma Beacon has a basic, easy-to-navigate design, and a core set of onsite resources and links that we’re already quite proud of.
In the next month or two, however, we will be noticeably expanding and deepening the onsite resources and links.
More immediately, we will begin publishing regular news updates related to multiple myeloma.
All of this content – the news items, onsite resources, and even our links directory – will be interactive. Disagree with something we’ve written? Want to add some additional information? Just click on the comment link, and start sharing your thoughts!
The Myeloma Beacon is here to serve you – whether you are a multiple myeloma sufferer, a family member or caregiver of a sufferer, or just someone interested in multiple myeloma. We look forward to your visits at the site and to your feedback and participation.
Welcome!
I have had multiple myeloma for almost 6 years now, but I was complete unaware of your site. I know about the acor listserv, the http://www.beating-myeloma.org site, Beth Morgan’s listserv, and Andy’s site that he recently open and closed, the websites of the IMF and the MMRF, the government’s clinical database (which until recently did not include all trials done in the United States) and many, many other resources, for standard, integrated, and alternative cancer therapy.
I was very surprised to learn there exists a resource I did not about.
Thanks!!.
Thank you very much for your effort, as I learned several things already I did not know. I did not know, for example, that Velcade apparently puts 50 percent of myeloma cells into a dormant state. I failed both cytoxan, Velcade and dex, which as far as I know, I used as a treatment before anyone else in the US. With the help of my local oncologist I modified another treatment, known as BAM, or Velcade, vitamin C and melphalan. I kept with the vitamin C and substituted cytoxan for melphalan, as it is arguably easier on the bone marrow. Since dex was being given to me as a pre-nausea drug anyway and I had red that 40 mg X 4 days or 20 mg x 8 days, doubles the response rate of Velcade, we also add that. This treatment is commonly used as induction therapy or frontline therapy, and is now known as cybor-D. At that time, I had no idea that green tea interferes with Velcade or that curcumin interferes with cytoxan.
At any rate, I have written enough, but thanks again for your site.
Alex Maas
a.maas [at] cox.net
DX 08/2003 as stage IIIB lambda light chain with nearly 100% myleoma cells per BMB; DOB 06/59; No stem cell transplant; Many, many trials; Moving on to a monoclonal antibody trial with little publicity at the University of Indiana–one that instead of killing the myeloma cells is supposed to reactive the immune system
Myeloma Beacon; a very good internet site for myeloma information. (I have been checking you out over the last 3 months)
Your articles are well researched, informative and up to date with current myeloma trends and issues. Well done.
As a myeloma sufferer for 8 years now, the internat has been a major source of myeloma information for me but does have credibility issues.
I have no problems with the credibility of Myeloma Beacon, I read it with confidence.
A link to Myeloma Beacon has been added to my blog.
Kind regards
Sidney Hider
New Zealand
http://www.supersidnz.blogspot.com
What a pleasant surprise to come across this site .I was diagnosed 3 years ago ,with stem cell transplant 2 years ago . After a good partial remission lasting 2 years I have recently relapsed and am now taking part in MelomaX Trial in the hope of having a second SCT .Your site will mean I can keep up to date with any new developments with confidence in the source so a big thankyou and I look forward to being a frequent visitor Bridget Rochfort
Leave a comment
News
Resources
Links
Most Recent Comments
Subscribe
News Archives