There are several terms used for transplantation of the body’s hematapoietic (blood) stem cells. In the past, most of the stem cells were collected directly from the bone marrow (in the pelvic bone) from the donor and the term “bone marrow transplant” was used. Today, most of the time (over 75%), the stem cells are collected in the blood stream in a process like platelet or plasma donation.
Because of the genetic mutation that causes MPN, patients must receive donated stem cells. This is called “allogeneic” transplantation.
Today, allogeneic stem cell transplant (SCT) is the only curative treatment for myeloproliferative neoplasms. The procedure is only available to patients with advanced Myelofibrosis who meet certain criteria. Finding a donor who matches the patient’s tissue types (called Human Leucocyte Antigens, HLAs) is required for a transplant to occur. Only 30% of patients find a matching donor within their families. These websites provide a lot of great information.
If you are considering stem cell transplant for myelofibrosis, check out this article, Stem Cell Transplantation in Myeloproliferative Neoplasms, in the MPNforum Quarterly Journal. Eight highly esteemed MPN and transplant physicians from the US, UK, and Germany contributed their approaches and insights to the article. Many of the first big questions a patient has are addressed in this piece.
Be the Match www.marrow.org patientinfo@nmdp.org
(800) MARROW2 or 888-999-6743 (within US) or 612-627-8140 (outside the US)
ExploreBMT www.explorebmt.org
ExploreBMT is a great place to start when you are looking for information and support aobut blood and marrow transplantation. Created by Be the Match, you can browse resources and services from many respected organizations. You can then connect to the resources that you need most throughout your transplant journey, from diagnosis through survivorship.
Blood & Marrow Transplant Information Network www.BMTinfonet.org
BMT InfoNet provides transplant patients, survivors, and their loved ones with emotional support and high quality, easy to understand information about bone marrow, peripheral blood stem cell and cord blood transplants. The website is excellent with links to other resources. This site was developed by patients for patients.
nbmtLink (National Bone Marrow Transplant Link) www.nbmtlink.org
1-800-LINK-BMT (800-546-5268)
The mission of the National Bone Marrow Transplant Link is to help patients, caregivers, and families cope with the social and emotional challenges of bone marrow/stem cell transplant from diagnosis through survivorship by providing vital information and personalized support services.
Bone Marrow Foundation www.bonemarrow.org
Offers financial assistance and free support services to marrow/stem cell transplant patients and their families. The Lifeline Fund provides financial assistance to help cover the costs of transplant-related expenses. A One to One Fund can be created for a specific patient; it is a simple, cost-effective way for a patient’s family, friends, and community to raise money on a patient’s behalf with all money raised going directly to their benefit. All donations are tax deductible.
BMF also provides resources and support services for patients and survivors post-transplant. SupportLine connects a patients who may be considering or actually undergoing transplant with post-transplant patients.
INFORMATION ABOUT TRANSPLANT CENTERS
Health Resources & Services Administration (HRSA)
The US Department of Health & Human Services has HRSA data on Blood Stem Cell Transplants.
http://bloodcell.transplant.hrsa.gov/research/transplant_data/index.html
http://bloodcell.transplant.hrsa.gov/research/transplant_data/us_tx_data/data_by_center/center.aspx
Bone Marrow Donors Worldwide http://www.bmdw.org
BMDW is the global file, where all potential volunteer stem cell donors and cord blood units are listed. Transplant centres and search coordinators have access and can see within seconds if a potential match is available.
GET ON THE LIST & JOIN THE REGISTRY
More healthy potential donors are needed to save lives! It’s easy to join the US marrow donor registry and we need more willing donors to increase the likelihood that all people needing a matching donor can find one. Presently, 40% of the patients needing a transplant do not have a matching donor in their family nor in the registries. Get swabbed and organize a registration drive in your community.
www.bethematch.org www.deletebloodcancer.org
