• Could those who have Multiple Myleloma, or who have helped people with MM write me.

    Asked by wellness on Monday, September 24, 2012

    Could those who have Multiple Myleloma, or who have helped people with MM write me.

    I have only been partially diagnosed since I cannot have my bone marrow biopsy until I am off coumadin for blood clots that were one of my complications from a different cancer. This has been going on since May and June re my lab tests showing markers for Multiple Myleloma. I am at the breaking point as to wanting full answers. I am getting more and more fatigued, feeling nauseous etc. I need answers.

    5 Answers from the Community

    5 answers
    • FreeBird's Avatar

      Hello Wellness. I have no experience with MM, however here is a nice booklet on MM from the National Cancer Institute. If you prefer, you can order a free printed copy on that page as well. http://www.cancer.gov/cancertopics/wyntk/myeloma

      Wishing you the best for your health.

      about 8 years ago
    • Charlieb's Avatar

      They found I had the mgus marker in 2007 while doing test on my neuropathy. Until last year it was only a chance that I would develop mm. Every three months I would be told the results where not good, but I didn't have cancer. They did 4 bone marrow biopsy on me. The biggest comfort was knowing my doctors where on top of things. I just became passive to the idea I could get cancer. It was still a shock, after the 4th biopsy when they told me I had cancer. I have had great support from family and friends. This group has been awesome for me knowing I'm not alone and helping with what you are doing. Reach out and ask anything.

      about 8 years ago
    • lansford_cub's Avatar

      I started a blog shortly after I was diagnosed ~ 3.5 years ago.... http://ndmyeloma.healthblogs.org/ ....it is nothing great but I tried to chronicle my experiences - for posterity! Since then I have decided that posterity will have to wait and that MM has already taken way too much of my time. I have since stopped blogging for a couple of reasons, one being hte amount of spam and the other being that I don't have the time to devote to it... plus I have read other blogs that seem to be so self-serving that I did not want to go there!

      Feel free to chat me some time or send an email, I can share my experiences if you like. Everyone is so different except that we (MM) are so much a like - if that makes sense! You have plenty of people out here that you can turn to for support and shared experiences.


      about 8 years ago
    • Gma's Avatar

      I was diagnosed in november 2005. I was only on medication for 4 months before I had an autologus stem cell transplant. Then in August of 2006, I had an allogeneic transplant with my sister as my donor. I have been in complete remission until May of 2012. The m protein was present at 0.1. I am getting tested frequently and we are watching closely. At this time, I am on no treatment. I live in SC but I go to MD Anderson in Houston for my treatment. If you would like to talk, I will be glad to call you if you leave me your number. Please know that there are many treatment options out there, so please don't lose hope.

      about 8 years ago
    • KatieL's Avatar

      Katrina: I am sure this limbo state is very agonizing. I would ask my physician how long before a bone marrow biopsy can be done. Also, ask what he or she thinks of your present state from the other tests being done--M spike, FISH assays, skeletal surveys, etc. I was in a "watch and wait" period for four years before my numbers escalated to the point that I needed to have treatment. It was even possible that I could have stayed in that watchful state forever and never required treatment. I guess my real message is to ask more questions about your present state. My best wishes.

      about 8 years ago

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