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Live from the Support Group Leaders' Summit - Oh, Nurse!

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Bonnie Jenkins, RN, an integral part of Dr. Barlogie's team and member of the IMF Nurse Leadership Board, got a standing ovation for her talk. She covered three areas of interest:

  1. Sub Cutaneous Velcade

    • At 12 weeks, drug effectiveness is the same as IV
    • But overall a 63% reduction in severe neuropathy
    • Patients feel increased convenience, so maybe in the distant future there might be a place for home administration of the drug in maintenance. Think insulin....it's not out of the realm of possibility.

  2. Peripheral Neuropathy (PN)

    • Myeloma itself can cause PN, as can diabetes, shingles, vitamin deficiency
    • Chemo-induced PN is as individual as each patient.
    • Insufficient evidence was found to recommend non-pharmacologic or pharmacologic agents to treat PN
    • Evidence is mounting for the merits of physical activity in preventing and managing side effects
    • There are diagnostic tests for determining if the neuropathy is chemo-induced
    • To deal with PN, you need to try more than one approach and talk about it in your support group. Share ideas. See what works and what doesn't.
    • "Nutritional management is used to increase oxide synthesis and may offer the potential advantage of improving blood flow to the peripheral nerves and reduce symptoms." Metanx has had some positive results. It is a medical food complex that helps to convert arginine into nitric oxide.

  3. I Will Survive! What do I do now that I forgot to die?

    This talk is part of the Nurse Leadership Board's work on the long term care of myeloma patients. They will be publishing consensus statements shortly on managing the issues she talked about. But first she made us all stand up and dance to Gloria Gaynor's "I Will Survive!"

    • What is the life-long impact of out-living myeloma? First remember that you are a person who needs to be taken care of outside the myeloma. You may have issues caused by age and other conditions that are unrelated to the myeloma.

    • Download NLB novel therapy side-effects management papers on the IMF website. These are the output of the Nurse Leadership Board's first project, and they are essential for guiding the management of the side effects of the novel thereapies.

    • Bone disease
      • Don't stop medical follow-up because you are in remission
      • Always clear your meds and supplements with your doctor. Or see the nutritionist at the hospital.
      • Pain management may be a life-long issue. See a specialist
      • Learn what constitutes a symptom that needs immediate attention
      • Skeletal events may progress despite continued treatment.
      • Mobility issues pose serious challenges to myeloma patients. Be careful of falls. You may fall because of a number of other factories, including vision, 
    • Kidney dysfunction is one of the common features of myeloma, but it isn't always the myeloma.

    • Renal dysfunction and renal insufficiency are common clinical features. Enjoy the outdoors, but don't get dehydrated.

    • Sexual dysfunction is exacerbated by chemo. But it may have been going on before, and you just didn't talk about it.
  4. Then she talked about the Seasons of Survival and the issues related to them. Particularly extended survival.

    • Acute survival

    • Extended survival: watchful waiting, consolidation, or intermittent therapy
      • family/social problems
      • financial/insurance
      • unexpected new long-term complications
      • second cancers
      • Long-term maintenance for survivors: Quality of Life
    • Permanent survival: "cure"
Finally she told us to "Just remember that it is all worth it. Every single day."

She closed her talk with Israel Kamakawiwo'ole's "Over the Rainbow." It was at that point that we all stood up and cheered.

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1 Comment

Sure wish we could get a video of this presentation instead of just the outline and review. We need this info as much as we need info from the doctors and research summaries...maybe a whole lot more.

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