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!
Related Articles:
- Latest Myeloma Research To Be Presented At The American Society Of Clinical Oncology Annual Meeting (ASCO 2018)
- Two Darzalex Clinical Trials Halted; Little Impact Expected On Drug’s Use In Multiple Myeloma
- bb2121 Continues To Impress As Potential New Multiple Myeloma Therapy (ASCO 2018)
- Eyelid-Related Complications Of Velcade Therapy: New Insights And Recommendations
- FDA Approves Once-Weekly Dosing And Revised Safety Information For Kyprolis
I have had multiple myeloma for almost 6 years now, but I was completely unaware of your site. I know about a wide range of other sites, including ones from foundations and the government, and there are many that cover standard, integrated, and alternative cancer therapies. I was very surprised, though, to learn there exists a resource I did not know 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
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
Buenas tardes mi nombre es Grace y mi hermano de 58 años de edad fué diagnosticado hace un mes con mieloma múltiple , me interesaría saber que efecto tiene la vitamina c junto con la dexa, pues en la traducción no se entendió muy bien. Jes agradezco mucho su interes por compartir con nosotros sus experiencias ya que son de gran utilidad y nos sentimos acompañados en esta dura prueba. Les mando un beso. Grace
I got my first Myeloma Beacon a couple of months ago. Very helpful. The clinical info is helpful, but the essays on the challenges for patients and caregivers are terrific. I was diagnosed in Oct 2008, was on kidney dialysis for 10 months and still am level 4 (of 5) in kidney function, and am now on Revlimid and Dex. My doctor says I am "not textbook", and I know I'm dealing with chronic anemia, low platelets and white count---the works. Still, I walk vigorously 2 miles almost daily, have an active civic and social life. Who could ask for more?
Because I'm learning over the past 2 years since diaagnosis that myeloma is highly personalized & that every patient is different, I would find it even more helpful when patients comment if they would state their age & genetic abnormalities, if any. Targeted therapies are becoming the best treatment, depending on the patient's genetic profile and general state of health & age. Thanks.
DX Oct. 2008
age 62 now
13q del, t(11;14)
on Rev/dex since Oct. 15 after ASCT 7/09
I'm so glad to find your site! After treating multiple myeloma for 15 months, I'm just learning that antioxidants inhibit the effects of Velcade. Your articles are so well written--clear, concise, and relevant. You've given me much to discuss with my oncologist, and perhaps, ways to improve the results of my treatment. Thank you so much!
Patricia--age 67, genetically inclined to hypothyroidism, Dupuytren's, and artistic temperament (See my website for samples of the latter.) And I enjoyed reading Grace's comment. Perhaps you could include some articles in Spanish? Or at least brief summaries?
Sir let me know how serious multiple myeloma is. My father was suffering from MM and is under Chemotherapy. Whats your valuable Suggestion? I am totally confussed and tensed.
Dear Jillu,
We are sorry to hear about your father's diagnosis. Hopefully you can find the information that you are looking for on our website.
Although multiple myeloma in an incurable blood cancer, there are a number of treatments approved to treat and manage myeloma. There are also many new drugs in clinical testing. Your father's prognosis depends on his age and the severity of his disease. Most myeloma patients are living for 5, 7, or even 10 years, and they are living longer and longer as more treatments are being approved to treat this cancer.
You can find background information about multiple myeloma and the numerous treatment options in our Resources Section.
Once you become familiar with the very basics of myeloma, we'd highly suggest reading an interview with Dr. Ken Anderson, a well-known myeloma specialist from Dana-Farber Cancer Institute.
You can also find answers to all kinds of questions about myeloma in the Beacon forums. Don't hesitate to post your own questions. In fact, we'd recommend that you introduce yourself and provide some more details about your father and his myeloma. Hopefully a number of people from the Beacon community will be able to provide support for you and help you get answers to all of your questions.
We wish you and your family the best.
Love, love, love, The Myeloma Beacon. Appreciate all your hard work, everyday.
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