Introduction
I am a medical librarian who has prepared this Blog on multiple myeloma resources for my friend who was recently diagnosed with multiple myeloma – and for her friends and family – and for anyone else who wants to learn about multiple myeloma. Her blog is here: http://sjgcbm.blogforacure.com/weblog
My blog has the following sections:
- Introduction
- Advocacy Organizations- Multiple Myeloma and General Cancer
- Clinical Trials
- Government Agencies
- Guidelines
- Humor
- MEDLINE
- Professional Societies
- Statistics
- Support Groups
- WEBTREATS
I would like to add sections on lessons learned, therapies, and spirituality. Your suggestions and comments are welcome.
Information in this blog was found through searches of key government medical sites, such as MEDLINEPlus and the National Guideline Clearinghouse. Descriptions of organizations were copied, and sometimes edited, from each organization’s website. Any content or opinions do not reflect the position of my employer, The American College of Obstetricians and Gynecologists (ACOG).
I always suggest to people who are looking for information on a disease to start with the National Library of Medicine’s MEDLINEPlus.
MedlinePlus will direct you to information to help answer health questions. MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations. Preformulated MEDLINE searches are included in MedlinePlus and give easy access to medical journal articles. MedlinePlus also has extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news
Multiple Myeloma information on MEDLINEPlus is found here:
Advocacy Organizations
Advocacy Organizations – Multiple Myeloma
International Myeloma Foundation (IMF)
The IMF is an international organization dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure. The IMF site offers Myeloma Manager, a way to track patient test results and other data, and Profiler, which helps patients make treatment decisions. The site offers many webcasts
Multiple Myeloma Research Foundation (MMRF)
http://www.multiplemyeloma.org/
The Multiple Myeloma Research Foundation (MMRF) was founded in 1998 by identical twin sisters Kathy Giusti and Karen Andrews shortly following Kathy’s diagnosis with multiple myeloma. The mission of the MMRF is to urgently and aggressively fund research that will lead to the development of new treatments for multiple myeloma.
You can find a wealth of quality-reviewed information on the MMRF site. The site also links to support groups, mentors, and clinical trials information.
Advocacy Organizations – General Cancer
American Cancer Society (ACS)
| The American Cancer Society (ACS) is a nationwide, community-based voluntary health organization. Headquartered in Atlanta, Georgia, the ACS has state divisions and more than 3,400 local offices. |
ACS information on multiple myeloma is here: http://www.cancer.org/docroot/CRI/CRI_0.asp
Clinical Trials
According to MeSH, a clinical trial is work that is the report of a pre-planned clinical study of the safety, efficacy, or optimum dosage schedule of one or more diagnostic, therapeutic, or prophylactic drugs, devices, or techniques in humans selected according to predetermined criteria of eligibility and observed for predefined evidence of favorable and unfavorable effects.
Progress in the treatment of cancer patients is usually based upon the results of clinical trials. The primary source for information on clinical trials is the federal database, Clinical Trials.gov. MMRF and IMF also link to trial information specific to multiple myeloma research.
Clinical Trials.gov
http://clinicaltrials.gov/search/open/condition=%22Multiple+Myeloma%22
ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.
The MMRF maintains its own clinical trials site here: http://www.multiplemyeloma.org/clinical_trials/4.04.php
MMRF also offers a patient-trial matching system here: http://multiplemyeloma.org/clinical_trials/4.09.php
The IMF links to trials here: http://myeloma.org/main.jsp?source=tab&type=tab&tab_id=4
This site also provides summaries of the latest published research.
Government Agencies
National Cancer Institute (NCI)
The National Cancer Institute (NCI), established under the National Cancer Institute Act of 1937, is the Federal Government’s principal agency for cancer research and training. The National Cancer Act of 1971 broadened the scope and responsibilities of the NCI and created the National Cancer Program. The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.
NCI multiple myeloma information is found here: http://www.cancer.gov/cancertopics/types/myeloma/
Guidelines
The National Library of Medicine MeSH definition of a practice guideline is work consisting of a set of directions or principles to assist the health care practitioner with patient care decisions about appropriate diagnostic, therapeutic, or other clinical procedures for specific clinical circumstances. Practice guidelines may be developed by government agencies at any level, institutions, organizations such as professional societies or governing boards, or by the convening of expert panels. They can provide a foundation for assessing and evaluating the quality and effectiveness of health care in terms of measuring improved health, reduction of variation in services or procedures performed, and reduction of variation in outcomes of health care delivered.
National Guideline Clearinghouse (NGC)
NGC is a database of current evidence-based clinical practice guidelines sponsored by AHRQ. Type your topic in the search box, then select titles of interest.
American Society of Clinical Oncology (ASCO)
Note: Some ASCO guidelines may require prepayment to access.
2007 Clinical Practice Guideline Update on the Role of Bisphosphonates in Multiple Myeloma
http://jco.ascopubs.org/cgi/content/full/25/17/2464
Use of epoetin and darbepoetin in patients with cancer: 2007 American Society of Clinical Oncology/American Society of Hematology clinical practice guideline update
http://jco.ascopubs.org/cgi/content/full/26/1/132
American Society for Blood and Bone Marrow Transplantation (ASBMT)
The role of cytotoxic therapy with hematopoietic stem cell transplantation in the therapy of multiple myeloma: an evidence-based review.
NGC URL: http://www.guideline.gov/summary/summary.aspx?doc_id=3859&nbr=003070&string=multiple+AND+myeloma (ASBMT website is password protected)
British Committee for Standards in Haematology (BCSH)
Note: You may need to go to their primary site and menus to get to the specific documents if the direct links do not work.
Guidelines for the use of imaging in the management of myeloma
http://www.bcshguidelines.com/pdf/myeloma_management_guidelines.pdf
UK Myeloma Forum and the Nordic Myeloma Study Group: Guidelines on the Diagnosis and Management of Multiple Myeloma 2005
http://www.bcshguidelines.com/pdf/multiplemyeloma0206.pdf
Cancer Care Ontatio Program in Evidence-Based Care
Bortezomib in multiple myeloma and lymphoma: a clinical practice guideline. Evidence-based series; no. 6-18
http://www.cancercare.on.ca/pdf/pebc6-18s.pdf
Optimal Therapy for Patients Diagnosed with Multiple Myeloma and The Role of High-Dose Chemotherapy and Stem Cell Support Practice Guideline Report #6-6
http://www.guideline.gov/summary/summary.aspx?doc_id=4999&nbr=003539&string=multiple+AND+myeloma
The Role of Bisphosphonates in the Management of Skeletal Complications for Patients with Multiple Myeloma: A Clinical Practice Guideline Evidence-based Series #6-4: Section 1
http://www.cancercare.on.ca/pdf/pebc6-4s.pdf
International Staging System (IMF)
http://myeloma.org/main.jsp?source=link&source_link_id=752&type=article&tab_id=8&menu_id=0&id=889
National Comprehensive Cancer Network (NCCN)
The National Comprehensive Cancer Network (NCCN), a not-for-profit alliance of 21 of the world’s leading cancer centers, is dedicated to improving the quality and effectiveness of care provided to patients with cancer.
NCCN Clinical Practice Guidelines in Oncology: Multiple Myeloma
http://www.nccn.org/professionals/physician_gls/PDF/myeloma.pdf
Humor
It’s hard to beat You-Tube for humor: http://www.youtube.com/
How about Jokes?
Try Comedy Central: http://www.comedycentral.com/jokes/index.jhtml
If you’re looking for good, clean fun, try AHA.jokes.com: http://www.ahajokes.com/
Or perhaps you’d like good clean Jewish humor? http://www.haruth.com/jhumorlink.htm
Then, there’s lesbian humor blogs: http://wordpress.com/tag/lesbian-humor/
And, finally, cancer jokes: http://www.learningplaceonline.com/illness/humor/jokes-intro.htm
Enjoy!
MEDLINE – Keeping up with medical literature
What is MEDLINE
MEDLINE is the NLM’s premier bibliographic database that contains references to journal articles in the life sciences with a concentration on biomedicine. A distinctive feature of MEDLINE is that the records are indexed with NLM’s (MeSH). The database contains citations from ,1950 to the present, with some older material.
How to search MEDLINE
Anyone with Internet access can use MEDLINE through PUBMED: http://pubmed.gov Basic instructions for searching MEDLINE through PUBMED are found here: http://www.acog.org/departments/dept_notice.cfm?recno=20&bulletin=1537
You can find additional instructions and help through the PUBMED site.
How to set up an RSS feed to automatically capture new MEDLINE records on multiple myeloma
An RSS feed will automatically send you new listings to your RSS reader (i.e. through Google Reader). You can set up search strategies in MEDLINE on PUBMED and save them as an RSS feed. When you check your RSS reader, you will find records on new articles.
If you want to prepare your own PUBMED RSS feed, first read David Rothman’s paper on how to set up an RSS feed in PUBMED: http://davidrothman.net/2006/07/17/how-to-generate-a-custom-rss-feed-from-pubmed.
This is an RSS feed that I developed from PUBMED on multiple myeloma limited to human and English:
http://eutils.ncbi.nlm.nih.gov/entrez/eutils/erss.cgi?rss_guid=0X4eZyAO7Ctk64t6VEIZkNmSiGoTkKW8_wEdPKwd90z If you copy this link into your RSS reader, you will automatically receive new citations from PUBMED on multiple myeloma.
How to get copies of articles found in PUBMED searches
You should be able to obtain items through your local public library (though they may not be free). Your local librarian can also help you with your search strategies. You can also call 1-800-338-7657 to find the nearest medical library that may be able to help you.
Professional Societies
American Society of Hematology
The mission of the American Society of Hematology (ASH) is to further the understanding, diagnosis, treatment, and prevention of disorders affecting the blood, bone marrow, and the immunologic, hemostatic and vascular systems, by promoting research, clinical care, education, training, and advocacy in hematology.
Find a hematologist here: http://www.findahematologist.org/
Patient information on multiple myeloma here: http://www.hematology.org/patients/myeloma.cfm
Statistics
SEER (Surveillance, Epidemiology, and End Results)
The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) is an authoritative source of information on cancer incidence and survival in the United States. The SEER Program registries routinely collect data on patient demographics, primary tumor site, tumor morphology and stage at diagnosis, first course of treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes stage of cancer at the time of diagnosis and patient survival data.
SEER Cancer fact sheet:
http://www.seer.cancer.gov/statfacts/html/mulmy.html?statfacts_page=mulmy.html&x=13&y=18
You can search for more specific SEER data here: http://www.seer.cancer.gov/faststats/
The American Cancer Society tracks data here: http://www.cancer.org/docroot/STT/stt_0.asp
but they do not specifically track multiple myeloma.
