GrannyBarb and Art's

Chronic Lymphocytic Leukemia

When I was first diagnosed with this disease in 1989, there were few resources available on the internet. Finding what little information there was to be found was a real challenge. Today medical resources abound on the web alone, and I have put this together so that no one else EVER has to go through the pure frustration that I did, as I tried to learn about and find resources relating to Chronic Lymphocytic Leukemia.

GrannyBarb

Disease Specific Resources

The CLL List Survey-1998

Original Research about CLL using data from the members of the CLL internet support list. This is the only resource for this information on the web. The survey was done by us, for us, using our own experience with CLL. Thanks to Professor Sheldon Messinger, of the University of California at Berkley, for his expertise in getting the survey analyzed.

The CLL List FAQ

Created by CLL List member David Thomas, using frequently asked questions on ACOR's CLL Cancer Support List, this information gives the basics that one needs when dealing with chronic lymphocytic leukemia.

Mike Dohan's Essay "What the CLL List Means to Me".

Dr. Michael Dohan, CLL list member, talks about his experiences as a member of the CLL online support list. If you're wondering whether you want to join the CLL list, this will help you make up your mind.

Interested in joining the CLL Online Support List?

Here is an easy way to join more than 1900 CLL patients and caregivers from 36 countries. We'll provide information and support from those who have been there and done that.

The Chronic Lymphocytic Leukemia Education Network

Created by CLL List member Andrew Schorr, through Healthtalk Interactive. Audiocasts of interviews that connect with top CLL experts and inspiring patients. Participate in Cancer Talk online, twice monthly conversations with doctors about health issues. To join Healthtalk Interactive programs you need RealPlayer, which you can download free from the HTI web site.

Vaccines

Leukemia patients are encouraged to stay away from live vaccines. This page separates out live and killed vaccines for your information.

The Neutropenic Diet

When your counts are low, and your doctor says you're neutropenic, here is the list of foods that are safe to eat.

The Campath Protocol

When you are about to start treatment with Camapth-1H this is the protocol that you will be using.

The CLL Information Network

Created by Cancer Survivor Knox Campbell, this is a grand sharing and informative page for patients.

Cancernet PDQ Statements and General Information

• Overview of the CLL PDQ Statement

• Patient Statement on CLL from CancerNet

• Professional Statement on CLL from CancerNet

• Information from the Leukaemia Research Fund of the United Kingdom. Pull down the arrow and click on chronic lymphocytic leukemia.

• Search Cancerlit for abstracts about new research

• Understanding Chronic Lymphocytic Leukaemia.

  This is from CancerBacup in the UK and is written on the simplest level I have encountered anywhere. If you want your children to read about CLL this is the place.

• Merck Manual search using "Chronic Lymphocytic Leukemia" with the quotation marks.

• The CLL: Chronic Lymphcytic Leukemia List Survey statistics about Cll diagnosis, staging, and treatment as told by list members for our own information done May-June, 1998.

• A Report by Cll Listmember, David Lauder, of a Seminar given at the Department of Haematology, Royal Liverpool Hospital, Saturday 17th October 1998 Open Day Organised by the Leukaemia Research Fund, UK

• Leukemia Department at MD Anderson Cancer Center, University of Texas Medical Center, Houston.

• Leukemia Insights Newsletter
  Scroll down the Contents list for many articles about CLL. Some issues highlight CLL, and others have only an article or two about the disease.

• Leukemia Insights Newsletter Vol. 5, No. 2 Summer, 2000: "A Wealth of New Agents for Leukemia"
  

• Leukemia Insights NewsletterVol. 5, No. 1 Spring, 2000: "CAMPATH in CLL; Thalidomide; New Salvage Regimens"
  

• Leukemia Insights NewsletterVol. 4, No. 2 Summer, 1999: CLL; Salvage Therapies in Acute Leukemia
  

• Leukemia Insights Newsletter"Fludarabine, Cyclophosphamide, and Amifostine for the Treatment of Patients with CLL", Vol. 4, No. 1 Spring, 1999
  

• Leukemia Insights Newsletter Vol. 1, No. 4 Spring, 1996: from M D Anderson Cancer Center. This issue highlights CLL.
  

• CLL Treatment Priorities from M. D. Anderson Cancer Center Leukemia Department
  

Review Articles About CLL

Articles are arranged alphabetically by year

• Incidence of Bronchogenic Carcinoma in Patients with CLL

• Retrospective study of the prognostic role of serum thymidine kinase level in CLL patients with active disease treated with fludarabine. Di Raimondo F, Giustolisi R, Lerner S, Cacciola E, O'Brien S, Kantarjian H, Keating MJ.; Ann Oncol 2001 May;12(5):621-5. Institute of Hematology, University of Catania, Ospedale Ferrarotto, Italy. diraimon@sirio-oncology.it.

• A systematic overview of chemotherapy effects in B-cell chronic lymphocytic leukaemiaKimby E, Brandt L, Nygren P, Glimelius B; Acta Oncol 2001;40(2-3):224-30 SBU-group. Swedish Council of Technology Assessment in Health Care.Department of Haematology, University Hospital, Huddinge, Sweden.
  

• Chronic lymphocytic leukemia Current Opinion in Hematology 2000:7,223-234 Click on SEARCH on the left side of the screen. Type in Thomas J. Kipps, MD, PhD. Scroll down to Chronic Lymphocytic Leukemia Current Opinion in Hematology 2000:7,223-234. Click on Abstracts. Unfortunately one can no longer access the full text of the article without subscribing to the journal.

• Morphological and immunophenotypic features of chronic lymphocytic leukemia.Matutes E, Polliack A., Rev Clin Exp Hematol 2000 Mar;4(1):22-47. Academic Department of Haematology and Cytogenetics, Royal Marsden Hospital and Institute of Cancer Research, Fulham Road, London, SW3 6JJ, UK. estella@icr.ac.uk

• A real-time PCR assay for the quantification of residual malignant cells in B cell chronic lymphatic leukemia. Pfitzner T, Engert A, Wittor H, Schinkothe T, Oberhauser F, Schulz H, Diehl V, Barth S., Leukemia 2000 Apr;14(4):754-66. Department I of Internal Medicine at the University of Cologne, Germany.

• Chronic lymphocytic leukemia. Keating MJ; Semin Oncol; 26(5 Suppl 14):107-14 1999.

• Chronic Lymphocytic Leukemia and Myeloma: Update on the Biology and Management. Kanti R. Rai, Thomas J. Kipps, and Barthel Barlogie. American Society of Hematology This is a PDF file that you must download and it requires the Adobe Acrobat Reader for viewing.

• Current Concepts: Chronic Lymphocytic Leukemia Ciril Rozman, Emilio Montserrat, New England Journal of Medicine, October 19, 1995 -- Volume 333, Number 16. The NEJM requires that you sign in and register to view their articles. Full text articles can be obtained for $10.00

CLL SUPPORT

• CLL: Chronic Lymphocytic Leukemia internet support mailing list.

  Sign on to the CLL list from the ACOR website

  email:listserv@listserv.acor.org
  subject: blank (or if you're on AOL, add a dash)
  message: subscribe CLL your first and last name
  If you have a signature, delete it.
  Archives may found and searched at ACOR - Association of Cancer Online Resources
  Visit the CLL Home Page

• Consumer's Guides for Buying and Keeping Insurance for each state in the USA. Guides covering information dealing with the Health Insurance Portability and Accountability Act (HIPAA), also known as Kassebaum-Kennedy.

CancerLit Searches on CLL, updated monthly

Research Papers and Information

Research

• American Society of Clinical Oncology (ASCO) Abstracts Online for the Public for the years 2001, 2000, 1999, 1998, 1997.

• American Society of Clinical Oncology 2001 Abstracts Search Page

• ASCO Treatment Guidelines Divided into patient and physician guides, there is good information about dealing with nausea during chemotherapy treatment.
  American Society of Clinical Oncology Journal of Clinical Oncology Online

• American Society of Hematology 2000 Education Program

• American Society of Hematology 2000 Science Program

• American Society of Hematology 2000 Special Lectures

• 1999 Annual American Society of Hematology Meeting abstracts You'll need to sign in and give yourself a password. No charge.

• Intravenous Immunoglobulin: Prevention and Treatment of Disease. National Institutes of Health (NIH) Consensus Statement Online, May 21-23,1990;8(5):1-23.

• CEP 12 SpectrumOrange DNA Probe Cleared by FDA This is a chromosome enumeration probe to assist standard cytogenetic analysis to identify and enumerate chromosome 12 obtained from peripheral blood lymphocytes in patients with B-cell chronic lymphocytic leukemia(CLL).

• Chronic Lymphocytic Leukemia B Cells Are Resistant to the Apoptotic Effects of Transforming Growth Factor-Beta. Raymond S. Douglas, Renold J. Capocasale, Roberta J. Lamb, Peter C. Nowell, and Jonni S. Moore.

• The Role of Cytokine Growth Factors in Normal and Neoplastic Human Lymphocytes. Richard J. Ford, M.D., Ph.D.; Associate Professor Case Western Reserve University.

• Genomic aberrations and survival in chronic lymphocytic leukemia. Dohner H, Stilgenbauer S, Benner A, Leupolt E, Krober A, Bullinger L, Dohner K, Bentz M, Lichter P; N Engl J Med 2000 Dec 28;343(26):1910-6. Department of Internal Medicine III University of Ulm, Germany. hartmut.doehner@medizin.uni-ulm.de

• Another Look at Granulocyte Transfusions in Neutropenic Patients with Cancer. Lucas, Kenneth G. MD; Indiana University School of Medicine NOTE: In order to access this article you will have to give yourself a Medscape login and a password. No charge. Series Editor: Arthur E. Brown, MD

• Prophylaxis Against Infections With Low-Dose Intravenous Immunoglobulins (IVIG)in CLL. Results of a Crossover Study Stefano Molica, Pellegrino Musto, Federico Chiurazzi, et al; Haematologica 1996; 81:121-126 Contact: Dr. Stefano Molica, Divisione di Ematologia, Azienda Ospedaliera "Pugliese-Ciaccio", viale Pio X, 88100 Catanzaro, Italy. Tel. international +39.961.883001. Fax. international +39.961.743490.

• Quantitation of minimal disease levels in chronic lymphocytic leukemia using a sensitive flow cytometric assay improves the prediction of outcome and can be used to optimize therapy. Rawstron AC, Kennedy B, Evans PA, Davies FE, Richards SJ, Haynes AP, Russell NH, Hale G, Morgan GJ, Jack AS, Hillmen P. Blood 2001 Jul 1;98(1):29-35. Haematological Malignancy Diagnostic Service, Leeds General Infirmary, Leeds, United Kingdom. andy.rawstron@newscientist.net

• Observation of Partial Remission of Chronic Lymphocytic Leukemia (CLL), After Treatment for H. pylori. Len Schoenman (patient), John Kailath MD, Barry J. Marshall MD; Helicobacter Web. 1995; vol 1:p1

Genetic Research

• The Online Multimedia Glossary of Genetics The National Human Genome Research Institute has launched an online multimedia glossary to help people better understand genetic terms and concepts associated with many of the recent advances in genetics.

• Chronic Lymphocytic Leukemias in Families. OMIM. Online Mendelian Inheritance in Man; NCBI, the National Center for Biotechnology Information.

• Non - familial CLL. OMIM, Online Mendelian Inheritance in Man; NCBI, the National Center for Biotechnology Information.

• Recent Developments in the Genetic Analysis of B-CLL from the United Kingdom.

• One Key Gene is Likely "First Hit" in Triggering Development of Cancers. The MSH2 gene triggers a cascade of genetic mutations which results in the development of cancer.

• Update on the biology of chronic lymphocytic leukemia. Bannerji R, Byrd JC; Curr Opin Oncol 2000 Jan;12(1):22-9

• B-cell chronic lymphocytic leukemia: a bird of a different feather. Caligaris-Cappio F, Hamblin T J, Journal of Clinical Oncology 1999 Jan;17(1):399-408.

• Human B Lymphocytes and Immunoglobulin (Ig) Gene Expression. Paolo Casali, M.D.; Department of Pathology, New York University Medical School

• Differential Induction of Apoptosis by Fludarabine Monophosphate in Leukemic B and Normal T Cells in Chronic Lymphocytic Leukemia. Ugo Consoli, Michael Andreeff, et al; Blood 1998 91: 1742-1748.

• p53 Expression in B-Cell Chronic Lymphocytic Leukemia: A Marker of Disease Progression and Poor Prognosis. Iole Cordone, et al, Blood 1998 91: 4342-4349.

• The Chromosome 14 Breakpoint in Neoplastic B Cells with the t(11;14) Translocation Involves the Immunoglobulin Heavy Chain Locus. Erikson J, et al; Proceedings of the National Academy of Sciences U S A 1984, 81 (13):4144-4148.

• Characterization of Interleukin-10 Receptor Expression on B-Cell Chronic Lymphocytic Leukemia Cells Jesper Jurlander, et al; Blood 1997 89:4146-4152.

• Cytogenetic abnormalities in chronic lymphocytic leukemia. Karnolsky IN; Folia Med (Plovdiv) 2000;42(3):5-10. Higher Medical Institute, Clinic of Haematology, 15A Vassil Aprilov St., 4000 Plovdiv, Bulgaria.
  

• Chronic lymphocytic leukemia. Keating, Michael J; Seminars in Oncology 1999 Oct;26(5 Suppl 14):107-14.

• Future strategies toward the cure of indolent B-cell malignancies. Molecular genetic approaches. Kipps, Thomas J.; Seminars in Hematology 1999 Oct;36(4 Suppl 5):3-8.

• Expression of B cell-associated transcription factors in B-cell precursor acute lymphoblastic leukemia cells: association with PU.1 expression, phenotype, and immunogenotype. Nishii K, et al; Int J Hematol 2000 Jun;71(4):372-8.

• TP53 deletions but not trisomy 12 are adverse in B-cell lymphoproliferative disorders. Shaw G R, Kronberger D L; Cancer Genet Cytogenet 2000 Jun;119(2):146-54.

• Genetic features of B-cell chronic lymphocytic leukemia. Stilgenbauer S, Lichter P, Dohner H.; Rev Clin Exp Hematol 2000 Mar;4(1):48-72. Department of Internal Medicine III, University of Ulm, Germany.

• Chronic Lymphocytic Leukemia. Wierda W G, Kipps T J; Current Opinions in Hematology 1999 Jul;6(4):253-61.

Disclaimer:
The presence of any site on this list does not imply endorsement.
This information is presented here for educational purposes only.
Please discuss treatment options with your personal physician.
Every effort has been made to ensure that the links on this page are in working order,
however, the web moves rapidly, so please email me if you find a link that is inoperable.

This site is always under construction.

Please be kind to it as it expands.

The site and we thank you for your patience.

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Copyright © 1996, 1997, 1998, 1999, 2000, 2001 Barbara Lackritz (alias GrannyBarb)
This Home Page was created June 30, 1996

Last modified: Mon Sep 9 11:40:19 CDT 2002