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18 Comments »

  • Silvia said:

    This is a wonderful resource. Congratulations & thank you.

  • Claudine Ramsey said:

    Welcome to The Multiple Myeloma Community, I need all of the information possible.
    Thank you for being here for all of us.
    Regards,
    Claudine

  • Jack Aiello said:

    As a very involved 15-yr Myeloma survivor, I’m pleasantly surprised when I learn about a new resource such as your Myeloma Beacon. After quickly scanning your site, I think you provide a tremendous amount of current information, for example your up-to-date events listing by location. I’m pleased to add your link to our SF Bay Area MM Support group website. -Jack

  • bruce said:

    How do I become a member of this forum?? I was recently diagnosed with MM and would like to learn more.
    I have been ery depressed (only 52 yrs old and hve two small kids) and this forum is much more optimistic.
    thankyou

  • Janice said:

    Hello and thank you for this web site…just wondering how to edit my info…I have a new e-mail address and would like to have my updates to be sent to the new address. sorry if I missed the link…..
    Thank you!
    Janice

  • Beacon Staff (author) said:

    Hi Janice,

    You can unsubscribe your old email address and then subscribe your new email address via the form on the following page:
    http://www.myelomabeacon.com/email-subscription/

  • jeanette graham said:

    trying to get on your web sit and updates!

  • John Cole said:

    Hello.This my first post.Just found your site.I was diagnosed 8 yrs ago,had no symptoms,until my M count hit 40.Started cybor D for 5 cycles From June 2012.Had stem cell transplant Jan 2013.3 weeks in Hospital,home 3 weeks.They only harvested for 1 transplant because of my age (69)but in great health.Doc has told me about mtc chemo Revlimid etc.Do i need to start this right away or can i wait until i show signs of relapse.I would love some drug free time to get back to my normal life.I hope some one has an answer for me.Thank you J Cole

  • Mary Blakney said:

    For all the Multiple Myeloma patients and their families. Mary B.

  • Marie graham said:

    First excuse my English : My sister in law has been diagnosed with Mm. She lives in a city in Mexico sha has been treated there. She has no insurance. She is US citizen 75 yrs O She is getting worse. Her hemoglobin is now 6 ..My brother is 82. Very low income. I would like to know if UAMS could include her in those trials programs. If not posible , is there the opportunity to pay for the expenses in installments ? I could sign for her treatnent cost. My credit history is ok. Please answer.. We are in a hurry thanks in advance. MARIE GRAHAM.

  • Julie Shilane said:

    We are very sorry to hear that your sister-in-law has been diagnosed with multiple myeloma. We hope your sister-in-law is able to quickly get the treatment she needs and that it works well for her.

    In order to find out whether your sister-in-law may be eligible for a UAMS clinical trial, you’ll need to contact them directly. If she’s not eligible, I am sure they can also explain their payment policies to you.

    UAMS Operator: 501-686-7000
    International Patients: 501-686-8071
    Toll Free: 1-888-MYELOMA (693-5662)

  • Doug Buchan said:

    Friends of Arnie Goodman’s mom and dad. Want to stay updated on his fight. Stay in the ring , keep the gloves on and keep punching.Our prayer is that you will not only watch your beautiful daughter graduate but also walk her down the isle to meet her mate for life.

    Doug & Peg Buchan

  • DAB said:

    Diagnosed w MGUS in 2005 or 6. MGUS discovered when I had surgery on my legs and did not recover as quickly as I should have as I was then having trouble walking. Was treated w 4 Retuxum infusions. Since then, I have been going for blood work and then office visit every 6 months. Was stable but numbers (IGM) are gong up so I had another 4 Retuxum infusions this past winter. However, I am having trouble walking and am in pain ; I think due to the fact I injured myself pulling and lifting heavy objects. I do have numbness and tingling in my legs and at times my right arm – now worse because of my “injury” due to the lifting.

    I began seeing a Chiropractor and a sports PT for therapy. However, yesterday, I was finally able to see my primary care physician who ordered an x ray for my right knee…checking for arthritis…it is my entire right side that hurts including my lower back and the front of my lower leg (like shin splints). But now I am seeing on your forum that people with MGUS often have arthritis! However, my specialist never has mentioned this to me. I did see him in March after my winter treatment and learned that my IGM numbers went up! In May, I saw him again and the numbers are coming down a bit. I go for blood work again in mid July and see him at the end of July. The doctor has never asked for a urine sample to test for protein counts. I don’t know what to think…is my pain a direct result of the lifting or is it more?

    After reading this article on bone issues and MGUS, I am going to ask him for a skeleton survey. In the mean time I am now taking a series of IC Methylprednisolone pills for a week. MY PC ( who knows I have MGUS and the treatments I have received) said that the inflammation needs to be treated which will help with the awful pain I have been having for quite some time now. I will get the knee X ray results this week.

    Thanks for all the wonderful information and articles you have provided. I stumbled on your site by looking for information on MM as I know that could be a possible progression of MGUS. Because of the information provided, I am going to be more proactive and insist on a skeleton survey.

  • Sharon said:

    How can I get a email weekly or monthly on the Mylema Beacon? Thanks

  • Myeloma Beacon Staff (author) said:

    Hi Sharon,

    There are two ways to get regular updates on what’s here at The Beacon.

    First, you can subscribe to our email alerts. Email alert subscribers receive a full-text copy of every new Beacon news and opinion article that’s published. That’s about one article every weekday. You can subscribe to the email alerts here:

    http://www.myelomabeacon.com/email-subscription/

    Second, if you want to keep up with what’s being discussed in the Beacon’s forum, you can register as a member of the forum, and then subscribe to email digests of forum postings. These go out once a day, once a week, or once a month (depending on what you choose). To subscribe to forum digests, login to the forum and go to this part of the User Control Panel:

    http://www.myelomabeacon.com/forum/ucp.php?i=205

    Thanks for your interest in The Beacon.

  • Jack said:

    I was diagnosed with ONJ following 3 years on Zometa. I have a open wound in my jaw that hasn’t healed in over 12 months. Have there been any new treatments made available other than the use of a daily mouthwash and monitoring?

  • dharamvir said:

    my mother has multiple myeloma disease pl explain if any treatment as soon as possible THANKS MINHAS

  • Kelley emery said:

    I have proximal tub allopathy. Gfr at 35. I am currently receiving cyborgs treatments in hopes of clearing the kidney. My other numbers are good. Technically not even myeloma yet…I think. Supposedly will have it full blown within the year. Just wondering if anyone out there has this kidney issue.