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E-nnouncement from the National Bone Marrow Transplant Link -  August 2015
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We Are Excited to Introduce our First International nbmtLINK Partner in Australia! 

 

A warm LINK welcome to our friends down under. We are thrilled to count Westmead Hospital as a LINK Partner.

Westmead Hospital is the largest allogeneic Blood and Marrow Transplant (BMT) centre in NSW, performing more than 1000+ transplants since 1981. Since then there have been improved outcomes and Westmead have a number of long term survivors post BMT, which continues to grow annually. 

This has required a shift in the model of care that is provided to address the survivor's needs. In 2012, Westmead BMT developed a formalized multidisciplinary team (MDT) approach to Long Term Follow Up (LTFU). This included the opening in 2013 of NSW's first Late Effects Clinic (LEC) catering for survivors two or more years post BMT. It has proven to be integral in 'preventing and detecting later complications and establishing long term health'1. 

This project was a finalist in the 2014 Western Sydney Local Health District Quality Awards.

 

Here is a web link to their long term follow up service:

 

www.aci.health.nsw.gov.au/ie/projects/caring-for-your-future-health 

 

Diagnosis of Chronic GVHD of the Skin: Signs and Symptoms

 

The skin is the most common organ to be involved with cGVHD. It is very important that you look at your skin often. You need to know what your skin looks and feels like all over your body, including your genital area, so you can report any changes to your health care team.

 

Common skin signs of cGVHD could be:

  • rashes (small bumps, patches, flaking)

     

  • lesions or tears (for example, to the vulva or vagina)

     

  • changes in skin color (red, pink, purplish, brown, white)

  • changes in texture (thinning, thickening, hardening, scarring, bumps)

     

  • itching, burning, or tightness of the skin

     

  • new swelling in the hands, arms, feet, or legs

     

    Chronic GVHD may also affect your nails, hair and sweat glands. These changes could be:

     

  • fingernails or toenails that have ridges, are brittle or splitting, or do not look normal

     

  • loss of fingernails or toenails

     

  • hair loss, hair thinning, or changes to hair color or texture (cGVHD can affect hair follicles, which are embedded in the skin)

     

  • not able to sweat or handle being in the heat for long periods of time; this can happen if cGVHD destroys sweat glands.

What are other causes of skin changes?

Skin rashes or color changes may be due to medicines, infections, being in the sun, or other health problems. Single bumps could be skin cancer. Itching is often due to dry skin. Hair loss and color or texture changes may be due to chemotherapy, long-term steroid use, or radiation damage.

 

Chapter 2 written by Stephanie Lee, MD, MPH, of Fred Hutchinson Cancer Research Center, Seattle, WA; and Steven Pavletic, MD, of the National Cancer Institute in Bethesda, MD.


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Watch here for information on how to get your Red Wings tickets and support nbmtLINK on November 20th, 2015 in Detroit, MI. The National Bone Marrow Transplant Link and the Detroit Red Wings have teamed up for an nbmtLINK Fundraiser!
  
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Survivorship Education Workshop - Living Now: Taking Care of Yourself
  

August 12, 2015 from 12:00 - 1:15 p.m. CT 

This free telephone education workshop will educate patients about the late effects blood and marrow transplant (BMT) may have on different organ systems, potential emotional late effects and how to cope with them, and strategies for staying healthy. 

During the workshop, you will hear from NMDP/Be The Match Medical Director and transplant physician Linda J. Burns, MD and Be The Match patient and caregiver volunteers.

Survivorship Education Workshop Registration Now Open

There are three ways you can register:
Online form
Phone 1 (888) 999-6743 
Email patientinfo@nmdp.org 

 

Be The Match 2013

Financial Assistance Program for PCR Testing

 

Do your patients with chronic myeloid leukemia (CML) need assistance with paying out-of-pocket costs for their PCR tests? LLS can help pay for these costs. We can provide up to $1,000 of a patient's PCR testing costs during his or her enrollment period. A patient may be eligible whether insured or uninsured.

Eligibility Requirements
To be eligible for the Financial Assistance Program for PCR Testing, a patient must:

  • Have a chronic myeloid leukemia (CML) diagnosis
  • Be a United States citizen or permanent resident of the U.S. or Puerto Rico
  • Have a household income that is at or below 500% of the U.S. federal poverty guidelines as adjusted by the Cost of Living Index (COLI).

How to Apply
To find out more information and to apply, call (877) 614-9242 or visit www.LLS.org/PCR.

 

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We Thank Our Distinguished LINK Partners Who Generously Support the Work of the nbmtLINK!

 

Barbara Ann Karmanos Cancer Institute City of Hope Dana-Farber/Brigham and Women's Cancer Center Duke Adult Blood and Marrow Transplant Program Fred Hutchinson Transplant Program at Seattle Cancer Care Alliance Froedtert Hospital and the Medical College of Wisconsin Henry Ford Transplant Institute Loyola University Medical Center Mayo Clinic Cancer Center Memorial Sloan-Kettering Cancer Center The Blood and Marrow Transplant Program at Northside Hospital Oregon Health & Science University Knight Cancer Institute  Roswell Park Cancer Institute  Blood & Marrow Transplant Program, The Sidney Kimmel Center at Thomas Jefferson University Hospitals  University Hospitals Seidman Cancer Center  UPMC Cancer Center  University of Iowa Holden Comprehensive Cancer Center   University of Michigan Comprehensive Cancer Center   University of Nebraska Medical Center and Nebraska Medicine  Vanderbilt Ingram Cancer Center  American Society for Blood and Marrow Transplantation  Be the Match  Center for International Blood & Marrow Transplant Research  The General Motors Foundation  The Leukemia & Lymphoma Society  Meredith A. Cowden Foundation Sinai Medical Staff Foundation Anthem, Inc 

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