Comments on: A New Beacon For The Multiple Myeloma Community

By: Lori Puente

Lori Puente — Sat, 11 Jun 2011 04:20:12 +0000

Love, love, love, The Myeloma Beacon. Appreciate all your hard work, everyday.

By: Beacon Staff

Beacon Staff — Thu, 07 Apr 2011 17:55:06 +0000

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.

By: jillu

jillu — Thu, 07 Apr 2011 15:52:25 +0000

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.

By: Patricia

Patricia — Sat, 26 Feb 2011 01:20:59 +0000

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?

By: Suzanne Gay

Suzanne Gay — Fri, 29 Oct 2010 13:00:57 +0000

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

By: Carol Douglas

Carol Douglas — Thu, 28 Oct 2010 21:52:32 +0000

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?

By: grace

grace — Sat, 28 Aug 2010 22:34:33 +0000

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

By: Bridget Rochfort

Bridget Rochfort — Wed, 11 Nov 2009 20:23:16 +0000

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

By: Sidney Hider

Sidney Hider — Tue, 08 Sep 2009 00:44:26 +0000

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

By: Alex Maas

Alex Maas — Sun, 03 May 2009 20:46:51 +0000

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.