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    User: Grandpa_Ray

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    MIZZPAT shared an experience

    Decision Point: At 100+ days after her stem cell transplant, we are facing a decision on chemo maintenance vs just monitoring and waiting. Chemo maintenance prolongs the period of remission by about 2 years (average) but may not improve survival period by much. Possible side effects and the drugs are expensive. Oncologists do not agree on post-transplant maintenance, so it is not a straightforward decision. The good news is that part of the uncertainty is a lack of enough data on long term effects of the improved treatments available over the last decade or so. An more improved drugs are expected this year and next.
    We are inclined to go on maintenance - probably a low dose of Revlimid with Dexadron.

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    Procedure or Surgery (stem cell transplant): Had autologus stem cell transplant (using own stem cells - no donor) on 10/21/2011. Stem cell harvesting was laborious but had few side effects. Was in Bone Marrow Transplant Unit at UNC Cancer Hospital for 19 days - about average. Side effects included loss of appetite, nausea, diarrhea, loss of hair, and neuropathy (feet). All these were expected but not pleasant; notable improvement when new stem cells kicked in about day 10-12. Nursing and doctor care were mostly outstanding - a first rate facility.
    We chose to have few visitors - immune system goes almost to zero for days.
    At home she had a cold, then pneumonia - spent 4 days in local hospital mostly to use IV drugs and monitor symptoms - the illness would not have hospitalized a person with normal immune system.
    At "day 90" (90 days from transplant) all blood markers are good, myeloma cells (M-spike) are at trace levels - i.e. in remission! Neuropathy still a problem, but combination of Cymbalta and Lyrica giving significant relief. Pat has been seeing friends and going out in public on a limited basis - it's a long road back to normalcy, but we thank God for her improvement and remission.

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    MIZZPAT asked a questionMultiple Myeloma

    Is buckwheat a threat to person with low WNC count?

    • KarenG_WN's Avatar
      KarenG_WN

      Hi MIZZPAT,

      I was hoping that someone would have weighed in. But I think your best bet would be to contact your doctor's office and ask them. This way you will be 100 percent certain.

      Let us know what happens so we can help others who may have the same question down the road.

      Thanks!
      Karen

      almost 5 years ago
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    MIZZPAT shared an experience

    Oh No (Diagnosed): Had repeated colds over several months. Doctor diagnosed anemia, followed for 3 months. Blood tests revealed presence of myeloma cells, high creatinine level. Confirmed diagnosis after month of tests, specialist examination. We had no adea what MM is, so low level of alarm at first. Discovered that OS stats are really behind the curve of current experience, and became more optimistic as we understood improvements in MM therapy in last few years.