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:

http://www.nlm.nih.gov/medlineplus/multiplemyeloma.html

International Myeloma Foundation (IMF)

http://myeloma.org/

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)

http://www.cancer.org/

ACS information on multiple myeloma is here: http://www.cancer.org/docroot/CRI/CRI_0.asp

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.

http://www.cancer.gov/

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/

National Guideline Clearinghouse (NGC)

http://www.guideline.gov

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)

http://www.nccn.org

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

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 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.

http://www.hematology.org

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

The results of research on the efficacy of support groups on patient prognosis is often disappointing. But it makes sense that knowing you’re not alone in your struggle is helpful to many patients.

IMF links are here: http://myeloma.org/main.jsp?source=tab&type=tab&tab_id=6

MMRF links are here: http://www.multiplemyeloma.org/about_myeloma/2.09.02.php

Note their mentors here: http://www.multiplemyeloma.org/about_myeloma/2.09.03.php

American Self Help Clearinghouse
http://mentalhelp.net/selfhelp

This is the online version of the Self-Help Group Sourcebook – an excellent source for additional support groups.

Patient Social Networking Sites

The May 2008 Medicine on the Net feature article was on patient social networking sites. These two sites were specifically mentioned:

PatientsLikeMe: http://www.patientslikeme.com

DailyStrength: http://www.dailystrength.org

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.