Overview of
The R. Neil Barnes Multiple Myeloma Program

which will provide newly-diagnosed and late-stage multiple myeloma patients with customized, creative, and tenacious patient advocacy inspired by Neil’s example of having been an informed and proactive patient.

Neil Barnes began his illustrious career at Liberty Mutual and went on to be a Certified Financial Planner and a recognized leader in the financial planning industry. As a member of the Financial Planning Association, he served – among other positions – as Chairman of the National Board of Directors, Chairman of the Registry of Financial Planning Practitioners, and President of the Greater Phoenix Chapter. The FPA’s Phoenix Chapter awarded Neil the honor of “Planner of the Year” and Money Magazine named him one of the top 200 financial planners in the United States.

With more than twenty-seven years of experience in the financial community, Neil was well-known and respected in the industry, having served as senior officer, director, and consultant for several life insurance companies. He was educated at Northwestern College and the University of Buffalo.

Considered a financial luminary, Neil was quoted from time to time in such publications as Money Magazine, Kiplinger’s Changing Times, the New York Times, USA Today, McCall’s Magazine, the Atlanta Constitution, the Arizona Republic & Gazette, Arizona Business Journal, Protection Magazine, and Tax Advisory Service. He also made guest appearances on CNN’s MONEYLINE, Financial News Network, Good Morning America, and KTAR Radio Phoenix. As past president and board member of the North Phoenix Rotary Club and past president and board member of Unity of Phoenix Church he will be greatly missed by many.

Because of our Generous Supporters, ICAN multiple myeloma cancer patients involved in
The R. Neil Barnes Multiple Multiple Myeloma Program
have access to the following information services:

  • Review and analysis of the patient's medical history, diet, lifestyle and risk factors, current condition as well as any co-morbid factors; thorough discussion of symptoms prior to being diagnosed with multiple myeloma.
  • In-depth discussion of the patient's blood work: CBC (complete blood count), blood chemistry tests, levels of normal and abnormal immunoglobulin such as IgA, IgE, IgG, and IgM; review the nature of electrophoresis results such as serum and urine protein electrophoresis (SPEP AND UPEP) and immunofixation. Review free light chains in the blood; review beta-2 microglobulin levels as a prognostic factor.
  • Review of bone marrow needle core biopsies, bone marrow aspirate smears, and flow cytometry results.
  • Discussion of three-stage International Staging System and myeloma labeling/ plasma cell labeling.
  • Referrals, at the patient's request, to hematopathologists, hematologists, medical oncologists, radiation oncologists, surgical oncologists, radiologists, interventional radiologists, stem cell transplantation teams, anesthesiologists, and additional specialists relevant to the patient's ongoing care.
  • Referrals to support groups that may provide assistance in handling the emotional impact that multiple myeloma has on the patient and the patient's family.
  • Referrals to organizations that may be of assistance in addressing insurance issues or employment termination issues (because of diagnosis or disclosure of advanced disease).
  • Discuss surgical options where relevant to treat fractures and impending fractures in the spine, pelvis, hip, and shoulder where the goal of these surgeries is to decrease pain and maintain function. Review recommendations regarding internal fixation augmented with cement, joint replacements, and vertebroplasties (for spine fractures), as surgical intervention does not alter the survival rate, but it does increase the quality of life.
  • Review treatment options in terms of chemotherapy and biologic therapy as well as novel agents in preclinical development.

 

  • Review external beam radiation therapy (EBRT).
  • Discuss stem cell transplantation, including autologous stem cell transplants and allogenic stem cell transplants;
  • Review the nature/amelioration of specific side effects from chemotherapy, radiation, and other treatment modalities.
  • Discussion of the interaction of diet and anticancer drugs based on recent studies.
  • Discussion of the symptoms about which the patient should alert his/her oncologist during the course of treatment for multiple myeloma.
  • Review relevant imaging studies such as bone X-rays/scans, CT, MRI, and PET.
  • Discussion of pain management issues that can be addressed with the patient's medical team.
  • Explanation of the recommendations given or not given by the patient's hematologists/oncologists; assistance in answering the patient's questions which remain either after or between appointments with the medical team.
  • Review of the relevant cytogenetic and fluorescent in situ hybridization (FISH) abnormalities and prognostic value, such as translocation involving chromosome 14; changes in chromosome 13, 17.
  • Discussion of the relationship between multiple myeloma targets to available clinical trials so that the patient may explore all treatment options with his/her medical team.
  • Analysis of relevant multiple myeloma cancer clinical trials options as well as the nature and purpose of clinical trials using Remission Coach®.
  • Review of relevant multiple myeloma agents in the drug pipeline.
  • Review of all relevant and complementary and alternative medicine (CAM) avenues.
  • Review of the merits of filing a "Single Patient IND for Compassionate or Emergency Use" for a specific experimental cancer drug, if relevant to the patient's situation.
  • Discussion of companies and organizations which can help reduce airline and lodging costs for the patient as well as ICAN supporters who have volunteered to host an ICAN clinical trials patient in a particular city.

 

Multiple Myeloma

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The R. Neil Barnes Multiple Myeloma Program
is a vital part of ICAN's Cancer Patient Advocacy and Clinical Trials Program Advocacy Services.

For more information about this special program, please click on.....

To support this program, please click below.

Donate

ICAN is currently working on the The R. Neil Barnes Multiple Myeloma Program. We are working to put together a Family and Friends Advisory Council for the The R. Neil Barnes Multiple Myeloma Program. If interested, please email us at NeilBarnesProgram@askican.org.

If you would like to become involved as a donor and supporter or a member of our Cancer Research Literature team as a Research Team Leader (medical school students, physicians, nurses, and post-docs only please), you may reach us at NeilBarnesProgram@askican.org.

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