12 thoughts on “Multiple myeloma support group on Facebook

  1. Bethe L

    I was diagnosed with smoldering myeloma in Oct. of 2010. I wanted to know if anyone has information on soy products being okay, possibly even helpful, or bad for myeloma patients in their diet.

    Thanks so much

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  2. Grace

    Margaret,
    First of all thank you so much for sharing your information on the web, I refer to it a lot in my quest to help my Dad.
    My Dad was diagnosed with MM in Aug 2007 and was given Thalidomide and then Velcade. During that time my father suffered 5 spinal compression fractures and I was finally able to get the doctor to allow us to see a spine surgeon who performed a 6 level kyphoplasty procedure. Well, my father barely survived all the above and now 3 1/2 years later his doctor is reporting active myeloma again because his abnormal Protein Band 1 went from 1.6 to 4.1. Is that an M-spike? So now they have started him on Velcade again and DEXAMETHASON. My issue is that his doctors will not talk with me about Curcumin. I delivered a short list of questions to his primary care doctor and he would not even address them. Meanwhile, I have just started my father on Life Extension, Super Curcumin with Bioperine, 800 mg, he is at 2400 mg. My concern is that my father has a lot of other issues he is on high cholesterol, enlarged prostate,high blood pressure, thyroid , and acid reflux medications. I thought maybe we could postpone some of those medicines for a little so that we can see if we could stabilize his protein counts. For instance I read that more then 15 mg of Bioperine could interfere or intensify other medications so I thinking of mixing Life Extension with Bioperine and the Jarrow without Bioperine to give him 8 grams a day. I love my Dad and I want him around for ever but if this cancer takes hold again he will suffer unbelievably again so I am getting him on the Curcumin without Doctor’s supervision because they will not help me. Do you have any advice for me? Grace

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  3. Chuck

    Thanks for outlets to learn more about MM.
    I just completed Stem-cell therapy and searching for
    cures to contain Translocation 414 cells MM + bad
    chromsomes. Will be investigating if TBL -12 might
    help. Open to suggestions. Thanks again.

    Reply
  4. Molly_2

    Molly_2
    Hi everyone:
    This is my first entry to this board but I’ve been following you for quite some time. I’ve
    had myeloma since 2005 and go to UAMS in Arkansas for treatment. I started as stage 3B with 80 % involvement of bone marrow and 32 bone lesions. I went there first in March, 2005 and have been in remission since June.2005. I was on a maintenance program for 3 yrs. with Velcade and now I’m in a clinical study called “Project Cure” and
    I’m taking a low dose Revlimid daily with monthly labs. I am a retired RN, living in Florida with my husband. Even though it is a 2400 mile drive for us round trip
    every 6 months we both
    feel it is the only place to go for treatment.
    I am probably one of the oldest people on this blog (76) but I feel well and take one day at a time. Wishing all the best to you all. Molly_2

    Reply
  5. Bob

    To Molly, I too was treated at UAMS. Diagnosed June 2, 2010 with IgG Kappa. Have had tandam SCT after treatment with TT4. I have been on maintinence with Revlimid and Dex for the past 8 months. The Velcaid was stopped due to grade 3 neuropathy in my feet and hands. I am due to go back next week for scans, bone marrow bx and other various pokes and prods. I had an excellent response to treatment and am at present in complete remission. I too was an RN for more than 30 years and prior to this had never been sick. I now find it hard to concentrate and my short term memory is poor at best. I’ve had 9 compression fx, lost 6 inches in height and 50 pounds. I call myself a train wreck. I’ve made a decision after my check up next week I’m going off the Rev and Dex and do watchful waiting. I’m just so tired of feeling sick and tired all the time. I want to see how it feels to feel normal again. My M protien is 0 and if it’s coming back nothing is gonna stop it. Guess that’s my vent for today. God bless u and all who are fighting this monster called MM.

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  6. Bob and Molly Kenney

    Hi Bob:
    Thank you for writing. Where are you from?
    It’s interesting there seems to be quite a few nurses I’ve met with this disease – it makes you wonder if it is some kind of chemical exposure–also while at UAMS we met 4
    doctors who had MM. I wish you all the best
    with your treatment and your decisions re continued treatment. I went one and a half years with no treatment. Molly and Bob Kenney

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  7. Bob and Molly Kenney

    Molly Kenney:
    I do take Curcumin, Alpha Lipoic Acid,a
    multi vitamin and I’ve started taking
    Black Cumin Seed. I just had my labs this week and my M factor is at 0 and several
    other markers are continuing downward.
    I’m also on Revlimid 10 mg. as part of
    Dr. Barlogie’s Project Cure study so it’s hard
    to know which one or ones that is keeping
    the markers down. Low energy- side effect .of the Revlimid.

    Reply
  8. Bob

    Hi Molly, Born and raised in AR but have lived and worked in many states as travel RN. I also spent a couple of years overseas in the early 70s in the Air Force so I have been well traveled in my 57 years. I presently live in a small town in north central AR, about 3 1/2 hours from UAMS. I am taking curcumin, a mult vit. , B-6 for the neuropathy, garlic, vit.E ,and Requip. I wish you the best and if you come up with the magic bullet let me know.

    Reply
  9. Gayle B

    Hi everyone, Ive been reading your stories with interest, I was diagnosed with IgG Kappa last march, I started at 80%, commenced CyBorDex chemotherapy with dramatic response,IgG Paraprotein falling to less than 1%. I have extreme bone and nerve pain. Im on a low dose of morphine because of my size, I weigh 55 kilos, a higher dose puts me into lala land, which wouldnt be so bad sometimes. Im 70 years old and live in New Zealand and waiting for a magic bullet too. Gayle

    Reply

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