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Latest Site Update
3/5/06

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A Vaccine Trial for CLL

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Forest Bump

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Rituxan Road-block

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Winning the Battle
but Losing the War?

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Latest on Green Tea

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Clinical Trial Updates

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FCR Lite

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RF Risks & Benefits

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HuMax Clinical Trial

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Avian Flu and CLL

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MCL - a Wolf in CLL Clothing

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Targeting Bcl-2

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Flu Preparedness

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CD-20 Targeted T-Cell Therapy

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Project Alpha Kickoff

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FMC + R Brit. Version

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Death by Conventional Wisdom

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More on Mitoxantrone + FCR

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Mitoxantrone + FRC

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Where Are We?

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Graft versus Host Disease

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Only Real Cure

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17-AAG Clinical Trial

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Flavopiridol & 17-AAG

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Campath plus G-CSF

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Honokiol: Interview

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Honokiol

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Possible Benefits of IVIg

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Test Packages Available

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CLL Global

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Short Duration Campath plus Rituxan

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Campath - Good News

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Dawn of a New Era

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Our Quest for Solutions

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Getting a Grip

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Are We There Yet?

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Omega-3 Fatty Acids

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A Real Pain in the Mouth

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December Report on Harvey

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Matching Made Simple

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Sons of Rituxan & Campath

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ASH 2024 Highlights

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EGCG Candies

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Epigenetics

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Katie's Story

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Shopping for Therapies

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Arabella Gets Xcyted

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FluCam 106 Status

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CDC Advisory on Antivirals

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Rituxan in the News

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Rituxan Warning

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Those Aches and Pains

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Target Mitochondrion

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ZAP-70 & IgVH Gene Mutation

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Rituxan + HDMP Update

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AIHA

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Rituxan plus Campath

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Diagnosing Your Doctor

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Familial CLL

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Neupogen Boosts Rituxan

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FluCam 106

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Project Alpha Milestones

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Latest on Harvey

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Vitamin D3

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Flavopiridol

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An Expert Weighs In

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VA Grants 100% Disability

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Gold Standard RF vs F 

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Harvey's Chocolates

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Campath Consolidation

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LMB-2 Clinical Trial

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ASH Meeting Notes

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Dying to Get a Tan?

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Need To Know

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FISH-ing for Answers

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The Continuing Saga of Harvey, the Round-headed Kid

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Project Alpha collaboration with Mayo Clinic


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Welcome to
CLL Topics

  • el
  • pt
  • This site is dedicated to providing information and support to patients and families dealing with chronic lymphocytic leukemia (CLL). It takes a clearly patient-oriented view of the world. The subject matter is focused on current developments in understanding and treating the disease.

    Discussion topics include basic science, therapeutic approaches, clinical trials and analyses of the results of these trials. We are witnessing significant changes in our understanding of the processes involved and in the therapies available to combat the disease. It is hoped that the discussions in our articles will bridge the gap between the professional cancer research community and practicing oncologists on the one hand and patients and their families on the other. 

    The opinions and analyses presented are those of lay observers of the CLL scene and not those of medical or research professionals. They are not intended to provide clinical guidance or recommendations on the management of the disease. This site draws its strength from a team of dedicated volunteers. None of us has any affiliation with the medical or pharmaceutical industries. Our only interest is patient education and advocacy. We hope our website can help you understand your therapy options better and make you better prepared to discuss these options with your healthcare providers.

    You may use the Contents page to review the material in this site or use the Google Site Search form above to get quickly to a specific topic of interest. 

    We welcome your comments about this website or your thoughts about any of the subjects discussed or referenced here. Please use the form on our Feedback page or send your email to us at .

    Chaya Venkat

    Founder

    Founder and Chief Science Writer:
    Chaya Venkat

    Editor, Publisher and Webmaster:
    P. C. Venkat

    Updated:  3/5/06

    Key Pointers

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    Our Current Articles section has a listing of recent articles published on CLL Topics. 

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    The Contents page will provide you with links to all the main areas on this website dealing with the disease, its diagnosis, prognosis, therapies, clinical research and the societal aspects of coping with the disease and the medical establishment.

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    A CLL Primer is directed at newly diagnosed patients (or as a refresher for those desiring to get caught up quickly) and serves to orient the patient or caregiver and highlight some basic facts and considerations. A list of additional articles to read is suggested in Step 5.

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    You will find spreadsheet templates you can use to keep track of your clinical data in Your Charts.

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    Project Alpha is a clinical research project proposed by CLL Topics. It is patient-sponsored and patient-funded. The clinical trial will utilize available biologic and immunotherapeutic agents to  delay progression of the disease and extend remissions. Read the description of the project and the logic behind it in the letter from our Founder and the  announcement of the launch of the project, .

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    A recent article, What Type of CLL Do You Have?, is directed at patients coming to grips with the question of treatment now or treatment later. Also read the hot-off-the-press Prognosis at Diagnosis article from Mayo Clinic which should help convince your oncologist that there really is a method of charting a strategy against your brand of CLL. Read the list of 'best practices" in the treatment and management of CLL from researchers at Mayo Clinic in What You and Your Oncologist Need to Know About CLL.

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    Our Reference section has links to many important resources on the Web for patients seeking to expand their knowledge of the disease.

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    For those with a scholastic bent, the Textbooks section provides links to a collection of superb online textbooks that can provide an entire education. 

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    The Search Engines page gives you access to professional search tools to locate abstracts and articles, search scientific databases, medical news and clinical trials. 

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    Donations: if you think what we do is worthwhile, go to our Donations page and make your support count. Send us an email () if you would like to volunteer your time and skills to join us in the work of this organization.

    Please do browse Current Articles and Contents to orient yourself to the resources available on this site. The material presented is based on serious, peer-reviewed articles in professionals and scientific journals, complete with references and links to source materials.  However, we have made it a priority to simplify the language and clarify the communication to make it accessible to the lay reader. Most important, we offer critical review form the patient's point of view. We hope you will become familiar with the terminology, our style of presentation and the navigation of this website pretty quickly. If you do experience difficulty with any part of it, please send us your comments so that we may improve this website. You may use the form on our Feedback page or send email to .

     

    Notes

    Who Are We?

    CLL Topics.org is the online publication of a patient-operated, non-profit corporation, CLL Topics, Inc. Please refer to the About Us section on this website for background information on the CLL Topics Team

    Copyright Notice:

    All materials contained on this site are protected by United States copyright law and may not be reproduced, distributed, transmitted, displayed, published or broadcast without the prior written permission of CLL Topics, Inc. You may not alter or remove any trademark, copyright or other notice from copies of the content.

    However, you may download and print material from CLLTopics.org exclusively for your personal, noncommercial use.

     

     

    Your Opinion Counts

    Exercise Your Pen - or Keyboard

    Words Have Weight

    The CLL Topics Team is happy to hear from you. We value your willingness to share your knowledge, experience and concern for our community. The section titled "Patients' Corner" is intended to provide a forum for your opinions and insights. Of course, your articles can be published in any of the other sections if they fit better there. If you would like us to consider for publication an article you have written, please submit the document by email to the address shown below.

    Don't forget to include your name and email address or phone number so that we can contact you if we have any questions. We will entertain full-length articles, announcements or snippets of information or commentary that may be of interest to our readers. 

    - Editor.

    Company News

    CLL Topics becomes a Corporation.

    A Short History

    This website, CLL Topics.org, has been on the air for a relatively short time. It was launched on April 4, 2024. Its predecessor was a discussion group on Yahoo! Groups, originally launched on April 7, 2024.

    The Project Alpha proposal was published online on September 23, 2024.

    CLL Topics, Inc. was registered as an Arizona non-profit corporation on October 27, 2024. The IRS issued an advance ruling on the Corporation's 501(c)(3) tax-exempt status on June 21, 2024.

    On December 16, 2024 the collaboration with Mayo Clinic on Project Alpha was announced. As of December 16, 2024, the Donations page went live.

    Fundraising Summary:

    Total Gifts as of 3/1/2006 - $112,213.50  from 328 donors. For details, please click here.

    Our commitment to Project Alpha is now fully funded. Current fundraising will support investigations of a number of promising new agents. Additional details will be reported as the projects develop. Your donations will help us offer critical  financial support to these investigations at a formative stage and demonstrate patient involvement and reflect patient priorities in the process.

    Financial Statements:

    To see financial statements for the Corporation you may use the following links:

    Fiscal 2024 Statement;

    Fiscal 2024 Statement;

    Fiscal 2024 Statement.

    Other Corporate Documents:

    Additional corporate information may be found through the following links:

    Annual Report to the Board for 2024

    Annual Report to the Board for 2024

    Articles of Incorporation

    Articles of Amendment

    Bylaws

    Amendment to Bylaws

    Tax Exemption Letter

    Application for Tax Exemption

    Our Record from the Arizona Secretary of State

    Our Record from the Arizona Corporation Commission

     

    CLL Topics, Inc.

    PO Box 168

    Sedona, AZ 86339-0168

    Copyright © 2024 to 2024. CLL Topics, Inc.
    All Rights Reserved.

     

    Volunteer Patient Support Groups

    You will find links to a number of patient education and support groups on our page dedicated to Support Groups.

     


    December 16, 2024.

    Below is a statement that has been approved for publication by Mayo Clinic, Rochester, MN.

    "The Mayo Clinic CLL clinical and research program is honored to embark upon a collaborative effort with CLL Topics, Inc. Philanthropic support from CLL Topics members will provide funding for Dr. Neil Kay and his research team to focus on two investigations:

    1) An intervention clinical trial based on biological/immunotherapeutic approaches for high risk early stage CLL patients and

    2) Testing of drugs in microenvironments that mimic the CLL host.

    These activities will be conducted in partnership with the Mayo Clinic Cancer Center Hematologic Malignancies program, which provides laboratory facilities, internal scientific review and direction for Mayo Clinic investigators."

    CLL Topics is delighted to work with the Mayo Clinic CLL team. These two projects have enormous practical value for our patients. Please join us in welcoming our new relationship with the Mayo Clinic Hematologic Malignancies Program. We hope each of you will choose to be part of the solution and with your generous support make Project Alpha a huge success.

    You may read more about this important new development on our Project Alpha page.  

     

    According to Mayo

    You can read an article about CLL Topics and its founders in the Spring 05 issue of Mayo Magazine: Information Empowers Leukemia Patients

     

    This website has a Donation page
    on which you can contribute
    to support our efforts.

    If you think what we do is worthwhile, please do show your support.

    CLL Topics has received a total of
    $112,213.50 from 328 donors as of 3/1/2006.

    We have reached our fundraising target for Project Alpha. Future receipts will be held for new research project after paying our minimal operating expenses.

    __

    We Thank Our Generous Donors

    To see our acknowledgments page and the status of our fundraising please click here. 

     

     

    GuideStar, the national database of non-profit organizations, is the on-line standard for nonprofit accountability. To see our listing in GuideStar, click on the logo below:

     

     

                  

    NEW ARTICLES

                       

    Vaccines

    Finally, It's Our Turn ...

    Case Studies

    The Road Turns Less Bumpy for Our Hero

    Rituxan Therapy

    Harvey Runs into a Road-block

    Therapy Choices

    Winning the Battle but Losing the War?

    Phytochemicals

    Details Make a Difference

    Clinical Trial Updates

    Comparing Apples to Kumquats and One Small Victory

    FCR 'Lite'

    New Clinical Trial Seeks the Goldilocks Solution

    RF Risks & Benefits

    Further Analysis from Ohio State

    HuMax Clinical Trial

    The Half-Full Glass

    Avian Flu and CLL

    A Cave is No Place to Live

    MCL - a Wolf in CLL Clothing

    Accurate Diagnosis Leads to Better Treatment

    Know the Name of Your Enemy

    FISH analysis is one of the key prognostic tests used to identify the type of CLL a patient has. However, the usual FISH panels contain probes for only the most common cytogenetic abnormalities. Rarer aberrations all get lumped together in a basket labeled "normal". In this article, MCL - a Wolf in CLL Clothing, we examine how a probe for one such rare aberration, the "t(11:14)" translocation, can yield valuable information in distinguishing CLL from the more aggressive Mantle Cell Lymphoma, for which treatment choices are not the same. Having this additional probe included in your FISH test may well depend upon your negotiating skills.

    Targeting Bcl-2

    We Review Clinical Trials of Three Different Drugs

    Flu Preparedness

    Some Pointers to Resources and Education

    T-Cell Therapy

    Trained CD-20 Targeted Killer T-Cells to the Rescue

    Clinical Trials

    A Patient Sponsored Clinical Trial

    Project Alpha Kickoff

    Clinical Trials

    The Importance of Screening

    FMC plus R: Brit. Version

    Drawing from the information sheet provided to patients in the UK FCM/FCM-R CLL trial, we make some comparisons with the previously discussed M. D. Anderson clinical trial (Mitoxantrone to Turbocharge FCR Combo?). The issue of pre-screening participants for cardiac conditions is being addressed differently in the U. K. trial as you will see in "FMC plus R - Brit. Version".

    Case Studies

    A Few Short Years Can Change Some Important Things

    Death by Conventional Wisdom

    The conventional wisdom of a few years ago can prove dangerous when doctors treat patients by outdated rules of thumb. In our critique of this case study reported by a professional journal in 1999, we identify the necessity for both physicians and patients to understand and employ modern risk-based strategies in dealing with this varied disease. Read "Death by Conventional Wisdom" to understand why staying on top of new developments is critical for your doctor — and even more so for you.

    Clinical Trials

    MD Anderson Responds

    More on Mitoxantrone plus FCR

    We are pleased to report that Dr. Stefan Faderl, the principal investigator at M. D. Anderson Cancer Center for the FCR+M and Neulasta clinical trial, has responded to our letter and the review of the clinical trial we published yesterday (see story introduction below: Mitoxantrone to Turbocharge FCR Combo?). We offer our recommendations regarding this trial and a commentary by Dr. Terry Hamblin in More on Mitoxantrone plus FCR.

    Clinical Trials

    Mitoxantrone Is Added to FRC Regime

    Kick It Up Another Notch?

    We review a new clinical trial currently recruiting patients at M. D. Anderson Cancer Center. Our article, "Mitoxantrone to Turbocharge FCR Combo?" is required reading for those considering enlisting in the Anderson FCR+M clinical trial - or for those simply interested in evaluating the risks and benefits of enrolling in any CLL clinical trial.

    CLL Overview Review

    Experts Summarize the State of CLL Therapy

    Where Are We?

    Drawing from a group of top-rated experts, Dr Marco Montillo in Milan has produced an overview of where we are in understanding and treating CLL. Patients and their oncologists should pay close attention to the historical evidence and conclusions presented by this group. Read about it in "Where Are We?"

    Graft versus Host Disease

    Controlling this Killer is the Holy Grail of Transplants

    GVHD in Allogeneic Transplants

    Graft-versus-host-disease (GVHD) is an example of systemic and potentially life threatening inflammation. It is one of the major causes of death in stem cell transplants.  Controlling GVHD is the holy grail of all transplant researchers. This article discusses the causes GVHD, and some commonsense things you can do to protect yourself.

    Stem Cell Transplants

    The Only Real Cure Out There, for Now

    New Papers Spell Out the Chances for Success

    As the years go by, survival statistics from stem cell transplants performed in the past have been accumulating. We review the surprising results reported in two newly published papers from the Hutch. Read more in our article, The Only Real Cure Out There, for Now.

    Chemotherapy Trials

    Hsp 90 and Its Inhibition by 17-AAG

    An Important New Trial Has Been Announced

    17-AAG may turn out to be an important therapeutic drug for CLL. It has an interesting mechanism of action and should in theory work well in poor prognostic cases. An important new phase I trial of 17-AAG has been announced and is recruiting patients at OSU, soon to be followed by Dana Farber. You can read all about it in our article 17-AAG - An Important New Trial Has Been Announced.  

    Chemotherapy

    Latest on Candidates Flavopiridol and 17-AAG

    Hope Springs Eternal

    The patient community is ever hopeful about new drug candidates that appear to have potential in the lab. In Flavopiridol & 17-AAG we review a paper reporting the disappointing results of an earlier phase I/II clinical trial of Flavopiridol that failed to show clinical activity when given as a slow infusion - the research team has since gone on to a bolus approach which may have more efficacy (see Flavopiridol: A Drug That May Save Lives). We also examine a new agent that is receiving attention, 17-AAG.

    Combination Immunotherapy

    Campath plus G-CSF Can Be Dangerous

    A Scary Story: Telling It Like It Is

    The combination of Campath and G-CSF appears logical enough as an approach to reaping the benefits of Campath therapy while keeping the immune suppression and infections typically associated with it under control. However, the co-administration of G-CSF with intravenous Campath to patients enrolled in a phase II trial at Ohio State produced unexpected and discouraging results. The prompt publication of the results is a credit to the Ohio State team. It is important that we understand the results of this trial as we consider our therapy alternatives. Read about it in Campath plus G-CSF.

    Physicians' Corner

    Honokiol: An Interview with the Experts

    We Talk to Researchers at Harvard and Emory

    Following up on our review of a recent important paper on the possible use of honokiol from magnolia bark extract in CLL therapy, we contacted the researchers to get the inside scoop. This compound has the potential for significant efficacy in CLL, and its use in traditional Chinese & Japanese medicine suggests few adverse effects. Dr. David Frank of Harvard Medical School and Dr. Jack Arbiser of Emory School of Medicine answer some of the questions that interest us in this email interview.

    Phytochemicals

    New Properties of Traditional Medicine Agent

    Honokiol and Magnolol

    Magnolia tree bark extract has been used for thousands of years in Chinese and Japanese traditional medical practice, with apparently little toxicity. A study conducted at Dana Farber has established that Honokiol has selective cytotoxic properties against B-CLL cells. The dosage required for anti-CLL activity will probably be higher than that used in traditional medicine and human clinical trials in CLL have yet to be conducted. However, the characteristics of this agent are attractive. Read all about it in Honokiol.

    Therapy Choices

    Restoring Humoral Functions in B-CLL

    Possible Benefits of IVIg

    Most CLL patients have reduced immunoglobulin (Ig), the levels dropping gradually over time. Lack of proper B-cell function in generating a wide repertoire of Ig needed is one of the reasons why CLL patients get so many infections. This article, Possible Benefits of IVIg, describes what happens when B-cell function is compromised by cancer or therapies used to control the cancer, causing sub-normal Ig levels. One possible solution for this defect is, of course, IVIg.  Recent research suggests there may be even more important and unexpected benefits to be gained from IVIg.

    Prognostic Indicators

    Prognostic Test Packages are Now Available

    Quest Diagnostics Is First to the Table

    Your doctor can now order a package of CLL-specific prognostic tests from the largest company in the medical test industry, Quest Diagnostics, Inc. Doctors can now get the tests done as a package deal - and at a reasonable cost to the patient. It has been our crusade to take out some of the road blocks to make prognostic testing accessible to local healthcare providers who guide the therapy choices of their CLL patients every day. Read about this important and very useful development in our article on Prognostic and Monitoring Tests.  We provide all the details of how to get the tests done and the logic you may need to convince your doctor to order them.

    Announcement

    New Resources and Initiatives

    CLL Global Research Foundation

    A new organization has been created to pursue and validate therapy options for CLL. The CLL Global Research Foundation, under the leadership of Dr. Michael J. Keating of M. D. Anderson Cancer Center, seeks "new, effective, low toxicity treatments". Among its objectives is the acceleration of new ideas and the rapid transfer of laboratory results to clinical applications. In an article titled CLL Global Research Foundation, we welcome this development and discuss a proposal made by CLL Topics to this new, well-funded entity that seeks a partnership with the patient community.

    New Clinical Trial at Mayo

    Protocol for  Previously Untreated Patients

    Short Duration Campath plus Rituxan

    A new protocol combining short duration subcutaneous Campath with standard dose Rituxan has been launched at the Mayo Clinic, Rochester, MN. It targets previously untreated Rai Stage 0-II patients. Read our review of the protocol and the relevant detail and background in Clinical Trial to Test Rituxan plus Short Duration Campath.

    Campath Therapy

    Good News for the Tough Cases

    The Half-full Glass

    Another piece of solid clinical research with important implications has just been published online in the Journal of Clinical Oncology on Feb. 28, 2024. In it, Paul Moreton, et. al., report on the results of a 7-year phase II study involving late stage and refractory patients. The British team concludes that eradication of minimum residual disease with Campath has a surprisingly good effect on survival in this cohort of tough cases. We review the Moreton article and offer our analysis in Good News for the Tough Cases.

    Staging is Superseded

    The New Think on CLL Is Finally Here

    The Dawn of a New Era

    An important new review article has been published in the New England Journal of Medicine. The Rai/Binet staging systems have been important in triggering therapy decisions. In this article the authors, who include Dr. Kanti Rai himself, bluntly state that the staging system with its emphasis on watch & wait should be replaced by better methods using modern prognostic indicators. We cover this important article as well as several other related works in The Dawn of a New Era.

    Prognostic Indicators

    Progress in Getting the Tests Made Accessible

    Our Quest For Solutions

    The value of getting the right prognostic tests done is slowly gaining acceptance in the patient community. However, the practical difficulties involved are numerous and each patient has to deal with his or her providers as well as he or she can. In this article, Progress on Prognostics, we review our own progress in de-tangling the logistical and communication nightmare for the patient community. In CLL, as in life, what you get is what you negotiate - and we have been busy.

    Physicians' Corner

    Progress in Finding a Cure

    Are We There Yet?

    Professor Terry Hamblin needs no introduction to CLL patients. His seminal work on the prognostic value of the IgVH gene mutation status has become a cornerstone in the risk stratification of CLL patients. In his article, Are We There Yet?, Dr. Hamblin discusses criteria for initiating treatment as well as what treatment can and cannot do for the patient. He goes on to review the current status of combination chemo-immunotherapy clinical trials. Read this article for a candid assessment of where we are in the campaign to cure CLL.

    Nutrition & Chemoprevention

    Omega-3 Fatty Acids

    A Fishy Tale

    Much current research is focused on the role played by polyunsaturated fatty acids (PUFAs) in a very broad range of cellular functions in humans. Our modern diet and agricultural technology have created a substantial imbalance between the two major groups PUFAs that we consume. Restoring that balance is critical to our ability to avoid and fight cancer and other diseases. In Omega-3 Fatty Acids we review current scientific thought on the importance of increasing our consumption of Omega-3 oils, derived mainly from fish.

    CLL Complications

    Oral Mucositis Can Be Deadly

    A Real Pain in the Mouth

    Many CLL patients experience painful sores and infections in their mouths, especially when they go through chemotherapy. This incidence of 'oral mucositis' can have serious consequences to the quality of life and even survival of these patients. There may be a few things you can do to help yourself - read about them in A Real Pain in the Mouth.

    Matching Made Simple

    Is a Bone Marrow Transplant in Your Future?

    Allogeneic Stem Cell Transplants Work Better with Closer Matches

    HLA matching of the potential donor with the recipient is the first step in allogeneic stem cell transplants, whether the stem cells are obtained from an adult donor or from umbilical cord blood. With increasing frequency, stem cell transplantation is viewed as an early alternative for those with aggressive disease or high risk profiles, especially for younger patients. Familiarity with the concept of tissue typing will be useful as you embark upon the transplant journey. To take some of the mystery out of this process we present Matching Made Simple.

    Monoclonal Antibodies

    Sons of Rituxan and Campath

    A New Generation of More Effective Antibodies Makes It into the Clinic

    The monoclonal antibodies Rituxan and Campath have changed the landscape for CLL and a whole range of hematological conditions. New improved versions of these monoclonal antibodies are now coming out of the lab and into the clinic. In our article Sons of Rituxan and Campath, we examine the mechanisms by which these agents achieve their effects - and the methods for increasing their efficacy. Read about a new CD20 monoclonal antibody, HuMax from GenMab, now in clinical trials in Europe and in the US and, incidentally, satisfy your curiosity about why we have a picture of a lobster gracing this paragraph. 

    Meetings & Conferences

    State of the Art in Hematology

    ASH 2024 Highlights

    CLL Topics was able to field a small team of reporters at the 2024 ASH Annual Meeting and Exposition in San Diego. Rainy skies kept us indoors attending the lectures and symposia - and a good thing, too, since there was a lot of material to cover. In ASH 2024 Highlights, we provide an overview of the proceedings and touch on a few of the important developments presented at the conference. Of course, many of these topics are worthy of more in-depth analyses in the weeks to come.

    Epigenetics

    Genes Sleeping on the Job

    New Therapies Based on a Better Understanding of Cell Biology

    An interesting new clinical trial has opened up for CLL patients, one that may have potential for low toxicity as well as good efficacy. As a refreshing change from the usual heavy doses of chemotherapy, this trial is based on using very low doses of drugs, often as little as ten times lower than the amounts used under standard regimens. The rationale for this approach is equally interesting. The DNA in a cell's nucleus is a vast library of information which normally defines and regulates how the cell functions. In cancer cells, however, the information retrieval mechanism is often at fault. The idea here is to use just enough drugs to correct this fault, and thereby allow the cancer cell to kill itself. Click here to read Epigenetics.

    Therapy Choices

    Trust but Verify

    Shopping for the Therapy that Is Right for You

    Picking your therapy based on the results reported from clinical trials is not easy. You have to read the results carefully - the devil is indeed in the detail. Comparing trial results is only valid if the patient groups are well matched between the trials - and sometimes the focus is on the wrong result statistic. Unbiased, timely and complete reporting of the results of human clinical trials is critical to understanding the therapies out there - and your therapy choices. Click here to read Shopping for the Therapy that is Right for You.

    Rituxan Warning - Rituxan in the News

    The Risk of Hepatitis B Virus Reactivation During Rituxan Therapy; New Therapy Combining Rituxan with Fenretinide

    The FDA, Genentech and Biogen-Idec Issue Warning

    Topics Alert Number 49 identifies another warning issued by the drug industry. This latest is the warning regarding the risk of hepatitis B virus reactivation during Rituxan therapy. This is not good news, but it is not the end of the world, either - just one more thing to remember and track. 

    On a positive note, our follow-up article, Rituxan in the News, examines a promising new combination therapy with Rituxan and a new agent for CLL, Fenretinide. This drug is an analog of Vitamin A, with a long track record of low toxicity.

    Those Aches and Pains

    The Effects of a Hidden Deficiency May be Wrongly Blamed on CLL

    This Topics Alert Identifies an Available Fix for What Possibly Ails You

    One of the common mistakes we (and our doctors!) make is attributing everything that goes wrong to CLL - such as muscle pains and the aches in our bones. You could be suffering from something that can be very easily corrected, a real cheap fix. Not only does it not cost a lot, it is not even toxic (isn't that a welcome change from the usual caveats with chemo drugs?), and it might even help you fight the CLL. But don't do this without medical supervision. What is this drug? It is called vitamin D3. Read our Alert titled 'Those Pesky Aches and Pains' for some interesting pointers.

    Target Mitochondrion

    Promising New Approaches Bypass the Usual Cellular Control Points and May Level the Playing Field for Bucket C Patients

    We Review New Research Articles that Focus on Attacking Mitochondria in B-CLL Cells

    Several recent research articles have opened up exciting new opportunities in the treatment of CLL. These feature new small molecule drugs that take an entirely different approach to targeting CLL cells. In this new approach to treating CLL, it seems to make no difference if you are IgVH mutated or unmutated, CD38 positive or not, chemo-naïve or have been through the wars with every chemotherapy drug known to man. In fact, there are some indications that heavily pretreated and late Rai stage patients may respond better to this approach. To learn more, read 'Exciting New Drugs on the Horizon'.

    ZAP-70 & IgVH Gene Mutation Status

    Two Prognostic Indicators Worth Understanding

    We Compare the Value of These  Indicators in Identifying a Patient's Risk Category

    These two indicators, in combination with FISH analysis to pinpoint the chromosomal aberration that is at the root of the CLL, go a long way toward defining the risk category of a given patient. In ZAP-70 and IgVH Gene Mutation we review the current research on the prognostic value of these two important tests.

    AIHA: Auto-Immune Hemolytic Anemia

    Important Insight

    We Review the Causes and Mechanisms of AIHA and Suggest Some Strategies to Deal with It

    AIHA affects a significant part of the CLL population, particularly those with advanced disease. Understanding the causes of the disorder is critical to dealing with it. In AIHA: Auto-Immune Hemolytic Anemia, we review the relevant research and make some suggestions.

    Monoclonal Redux

    Campath plus Rituxan as Therapy

    We Review the M. D. Anderson Clinical Trial of the R+C Combination Protocol

    These two potent monoclonal antibodies in CLL treatment hold great promise by themselves and in combination with other agents. The logical question of whether they work well together, or have synergies in their method of action, are important ones to answer if we are to make the best use of our options. In immunotherapy, however, things are not always as they seem, as shown by this clinical trial conducted by M. D. Anderson. Negative results, while disappointing, still have value in our understanding of the disease and in plotting treatment strategies.

    Diagnosing Your Doctor

    A Patient's Viewpoint

    Why Patients Need to Be Proactive: The Life You Save Could Be Your Own

    Former newspaper reporter and editor David Arenson analyses the weak points in many relationships between CLL patients and their doctors and makes some constructive suggestions for improvement. In his article titled "Diagnosing Your Doctor" he identifies the qualities and approach he feels are necessary on both sides for CLL patients and their doctors to develop interactive and effective relationships.

    Familial CLL

    Insight, Advances and Research

    Tracking Down Clues in Population Data

    Dr. Tim Call is a hematologist/oncologist at Mayo Clinic, Rochester, MN and an Assistant Professor of Medicine at the Mayo Clinic College of Medicine. He has done much important work in the area of familial CLL and lymphoma, and is responsible for developing a database at Mayo Clinic on the familial incidence of B-cell malignancies including CLL, B-cell lymphomas and a few related diseases. You might recall his name as an author on the Mayo Best Practices article - Current Approach to Diagnosis and Management of CLL. More details about him are provided in his official Mayo Clinic profile. We are pleased that he has written this article, Familial CLL, addressed to the patient community. We strongly encourage that our readers register in one of the recommended databases when appropriate. 

    Rituxan plus Neupogen

    Improving Efficacy and Reducing Neutropenia

    New Information on Neupogen as Booster to Rituxan Monotherapy

    In this article, Neupogen as Booster to Rituxan Monotherapy, we discuss one method of getting maximum mileage from Rituxan monotherapy. First we examine the impressive results of a major Phase 3 study from Amgen on the use of G-CSF (Neupogen) in moderately myelosuppressive (breast) cancer therapy, in which the authors conclude their logic would hold for any cancer therapy with the risk of neutropenia. We also cover a wide range of abstracts that point to the important role played by neutrophils in the depth and duration of remissions produced by Rituxan in CLL and in the avoidance of resistance to Rituxan therapy. We also discuss the risks involved and conclude with a plea for the rapid publication of critical results from clinical trials. 

    Project Alpha

    Drum Rolls and Announcements  

    We Pass Two Milestones

    We have some important information to report on our patient-sponsored clinical trial initiative, Project Alpha. First, we have clearance to announce the agents that will be used in the trial. Read Project Alpha Milestones to learn about the agents and the logic for using them. We also finally hear from our favorite governmental agency, the IRS, on our tax-exempt status.   

    Vitamin D3

    Essential for Health 

    Effective Supplementation Can Help Fight Cancer

    Vitamin D is a very potent regulator of cellular biochemistry. We review the research literature on the value of an adequate intake of Vitamin D3 in maintaining general health and in fighting cancer. The literature indicates that the officially recommended dosage (RDA) of the vitamin is barely enough to avoid deficiency diseases and woefully inadequate to provide the multiple health benefits available from this supplement. However, any aggressive supplementation regimen must be carefully monitored and medically supervised since high dosages can lead to systemic toxicity (hypercalcemia) and even death. Our review article, "Vitamin D3: Essential for Health" explores the benefits, raises the caution flags and explains how to benefit from the vitamin without the risk of sun exposure.

    Chemotherapy

    NCI Develops Experimental Drug 

    Flavopiridol: a Drug that May Save Lives

    We review preclinical data and early results from clinical trials with flavopiridol, an important new experimental drug.  Flavopiridol is being developed by Aventis Oncology in collaboration with the National Cancer Institute. Its use is presently under investigation for a variety of solid tumors as well as hematological cancers. It offers the possibility of p53- and ATM-independent cell kill in CLL, thereby opening an important therapeutic path for patients with poor-prognosis cytogenetics. While there are issues related to the drug's toxicity, there is also hope that it could survive the early phase optimization trials to become a major drug for the treatment of CLL. Read about the potential value and possible drawbacks of this agent in "Flavopiridol: a Drug that May Save Lives". 

    Therapy Choices

    Fludarabine Monotherapy No Longer the Gold Standard 

    Addition of Rituxan Results in Longer Survival

    We review two research papers that have just been published in Blood online. The first, authored by a panel of top CLL experts, presents persuasive data that a combination of Rituxan and Fludarabine is superior to Fludarabine monotherapy in both response rate and survival. The companion paper, authored by researchers at the NCI, concludes that Fludarabine monotherapy in CLL relies on a p53-dependent mechanism for cell kill and that this therapy has the potential to select for p53-mutant cells, leading to more aggressive and resistant disease. These are very important conclusions that need wide dissemination among patients and practicing oncologists. Please read our article Fludarabine Monotherapy No Longer the Gold Standard

    Campath Consolidation

    German Clinical Trial Was Terminated Early Due to an Unacceptable Incidence of Severe Infections  

    Hitting a Home Run Is Not Easy

    Campath is a promising agent in CLL (see our recent article Campath - Looking Better and Better) but it does have significant immunosuppressive effects. There is a great deal of interest in using Campath as a cleanup agent after more traditional chemotherapy or chemo-immunotherapy to eliminate minimum residual disease (MRD). Recently published results from a German CLL research group are revealing. The study was halted early as the consequence of an unacceptably high level of severe infections. We compare these results with those reported by M. D. Anderson and comment on the possible sources of variance between the two sets of clinical results in the article titled "Hitting a Home Run with Campath Consolidation?". 

    CLL Complications

    The Danger of Squamous Cell Carcinoma in CLL Patients

    Dying to Get a Tan?

    If you have CLL, you have a much higher chance of getting squamous cell carcinoma (SCC), the second most common skin cancer. Further, CLL patients who contract this disease are more likely to have an aggressive form of the disease. We examine some of the possible mechanisms for the onset of this cancer and review a number of steps you can take to protect yourself including a few things you can discuss with your doctor that may help. Click here to read "Dying to Get a Tan?".

    Mayo Best Practices

    Current Approach to Diagnosis and Management of CLL

    What You and Your Oncologist Need to Know about CLL

    We review and comment on an important new paper from the Mayo Clinic Hematology Team. Authors Shanafelt and Call provide an extremely useful review of recent changes in diagnostic methods and risk assessment and their therapeutic implications for various cytogenetic sub-categories of CLL. This is a must-read paper for both you and your local oncologist. Our editorial comment examines areas in which they could have gone farther in their recommendations. Click here to read "Need to Know".

    FISH-ing for Answers

    Chromosomal Aberrations Rule the Game

    A Review of the Importance of Cytogenetics and Some Practical Information on Getting Your FISH Test Done

    We have previously discussed the significance of various chromosomal aberrations in the progression and treatment of CLL ("What Type of CLL Do You Have?" and the case studies, RHK-I and RHK-II). We now turn to what this implies to any CLL patient considering his or her alternatives: watch-and-wait, chemotherapy, immunotherapy, combinations, vaccines, etc. FISH (fluorescence in-situ hybridization) testing can provide key information in making these decisions. In "FISH-ing for Answers" we provide some critical information that may be useful in getting your very own FISH test done. 

    Familial CLL

    Genetic Predisposition and Anticipation

    To Know or Not to Know: That Is the Question

    "Not the Worst Day of Your Life"  is a review of the research findings on the familial aspects of CLL. It is well documented that CLL strikes more than one person in some families, there is clearly a predisposition to the disease that has been passed on from one generation to the next in these
    families. Some day, this type of research may prove to be the key that unlocks the CLL puzzle. In addition the data show that in families where the disease strikes several generations, the children of a CLL patient are likely to be diagnosed with the disease at an younger age compared to the parent. Finally, we discuss some of the difficult issues involved in testing children for potential problems down the road that may never materialize.

    Campath - Looking Better and Better

    Campath Proves Effective in Early Stage and Difficult Cases

    Experts Get Better at Using  the Anti-CD 52 Monoclonal 

    We review the current status of research and clinical trials involving Campath-1H. This fully humanized monoclonal antibody has been approved by the FDA for use in relapsed CLL but current research reveals that it could have critical application as a frontline therapy in a subset of high risk cases. It is a powerful therapeutic agent that is slowly finding wider applicability in early stage patients. The techniques of administration have improved and so have the techniques of managing the serious immune suppression attendant to its use. Our review article, Campath - Looking Better and Better, explores these and other aspects of Campath therapy.

    Prognostic Indicators

    Using Modern Tools

    Prognosis at Diagnosis - Integrating Molecular Biologic Insights into Clinical Practice 

    We examine a critically important new Blood First Edition Paper - pre-published online on October 23. Read Chaya Venkat's review of the article from the experts at Mayo Clinic. While much of the research quoted in this article has been previously reported, this article will nevertheless be important. In Chaya's opinion, "What makes this paper unique is that it puts it all together in one irrefutable package: the research, the results, the logic, the recommendations. I have no doubt this paper will be one of the most influential papers in CLL, and will be influencing clinical practice for many years to come."

     

    Updated:  3/5/06

    Search CLL Topics with


    Therapies
    and Agents

    Thanks to dedicated clinical researchers and brave volunteers enlisting in clinical trials, diagnostic tools and therapy options are changing fast in the treatment of CLL. We hope to assist  you in understanding the type of CLL you have, the therapy options out there and some of the basic considerations in choosing how to proceed. The expression 'living to fight another day' gains a special meaning when the whole ball game may change tomorrow. 

    Here are some of the therapies and agents we  have discussed in our past articles:

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    Rituxan

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    Fludarabine

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    Campath

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    Combination 
    Immunotherapy

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    Traditional
    Chemotherapy

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    Bone Marrow Stem Cell Transplants

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    Vaccines

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    Immunomodulators

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    Gene Therapy

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    CTL Therapy

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    New Monoclonals

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    NF-kB Blockers

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    NO-NSAIDs

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    Apoptosis Agents

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    Angiogenesis

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    Glucocorticoids

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    Phytochemicals

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    Vitamin D3
     

    Please do remember that the writers of the articles on CLLTopics.org are not medical professionals and do not provide medical advice or recommendations for treatment. Please consult and follow the advice of your own healthcare providers.

     

     

     

     

     

     

     

     

     

     

     

    Elsewhere on our
    Website

    Status of Fundraising

    You can look up where we are in our fundraising both on the Donation page and the Acknowledgements page on this site. We are proud to acknowledge the generous gifts of many who support us in our work.

    Managing Infections

    In our Reference section you will find a valuable new addition on managing infections in the immune compromised patient. There is extensive material of particular relevance to CLL patients.

    Patients' Corner

    In our section called Patients' Corner, you can read other patients' opinions on diverse topics.

    Physicians' Corner

    In our section called Physicians' Corner, you will find articles and correspondence from physicians, researchers and other experts. In Are We There Yet? you can read an article by Professor Terry Hamblin evaluating the progress made to date on finding a cure for CLL. You will also find a recent communication from Dr. Gerald E. Marti, a scientist with the FDA's Center for Biologics Evaluation and Research, expressing his evaluation of some areas of great importance to CLL patients. In another article, Dr. Tim Call, a specialist at Mayo Clinic, Rochester  offers some facts and insight into the difficult subject of Familial CLL.    

    Herbs and Supplements

    In our Reference section you will find a new link to a valuable resource from Memorial Sloan-Kettering on herbs, botanicals and other products.

    The Virtues of 
    Green Tea

    In the section on Phytochemicals, Nutrition and Chemoprevention, you will find an article discussing the anti-cancer activity of green tea polyphenols: Do You Like Drinking Green Tea?

     

    Agent Orange

    VA Accepts the Connection to CLL

    Veterans Please Note

    There is an acknowledged association between Agent Orange and CLL. This was announced in early 2024 by the Institute of Medicine in a lengthy report. Here is a link to the related press release. The online IOM document, is laborious to search but you should be able to get to the pages referring to CLL (372-376) by clicking here. You can get a PDF of each individual page and print it if you wish. Finally, here is a link to the the VA site on Agent Orange. Please note that they have not listed CLL on the site yet, but because CLL and SLL are synonymous, veterans should consider filing a claim with the VA  listing the dx as CLL/SLL to try and avoid this confusion.

    Many thanks to Dr. Timothy G. Call of Mayo Clinic, Hematology CLL Group, Rochester, MN for the information on this topic.

    VA Agent Orange Policy

    One Veteran's Experience

    VA Grants 100% Disability Status

    The following is the text of an email dated 5/19/2004 from Peter Carpenter, a CLL patient and vet with prior Agent Orange exposure, reproduced here with his permission:

    "I have been notified by the VA that because of my exposure to Agent Orange and my diagnosis of CLL that I have been granted 100% disability status. My request was filed in November of 2024 and granted in May of 2024 with benefits retroactive to November of 2024. As a consequence of the 100% disability rating all of my medical care, not just the CLL related care, will be provided by the VA.
    I encourage other veterans who served in Vietnam and who have been diagnosed with CLL to file a claim promptly. The local DAV ( Disabled American Veterans) literally filled out my claim form for me -- all I had to do was sign it.

    Peter Carpenter
    2024 stage 0"

    Trends in Treating CLL

    Presentations Made at the Columbus Conference Sponsored by LLS

    Online Link

    The "Trends in Treating CLL" conference that was held in April of 2024 had interesting presentations from such experts as Dr. John Byrd, Dr. Michael Grever, Dr. Ian Flinn and Dr. Terry Hamblin. These presentations can now be viewed online by using the following link: Columbus Conference. Thanks to Kathy Cox, Patient Services Manager at the Leukemia and Lymphoma Society for bringing this to our attention.

     

     

    IMPORTANT
    RECENT
    ARTICLES

     

    Chemotherapy Insight

    Methods of Drug Delivery 

    The "How" Is Often as Important as the "What" in Chemotherapy

    This article offers some insights into the effectiveness of various methods of drug delivery. You will find it in the section on Chemotherapy or for a shortcut just click here.

    Adhesion, Homing and Resistance

    Article Explains Why Peripheral Blood Numbers Do Not Tell the Whole Story and Why CLL Cells are Hard to Kill.  

    It's a Tale of Adhesion Factors, Chemokine Trails, Receptors and Blockers

    The behavior of CLL as a disease and the different characteristics exhibited by strains with different clonal genetic aberrations are all related to cellular chemistry. We examine a number of critical aspects such as resistance to therapies, bulkiness of lymph nodes, infiltration of bone marrow and the support structure for CLL cells in their preferred environments. We also look at some futuristic possibilities for therapies in this article, Adhesion, Homing and Resistance to Therapy, dated December 8, 2024.

    Ctyogenetics

    Article Highlights the Role of the ATM and TP53 Genes in Disease Progression and Response to Therapy.  

    The Science Behind the Grim Statistics Offers the Hope of Better Therapeutic Strategies

    Patients who have struggled with the implications of genomic aberrations in the disease get some guidance in this article on the cytogenetics of the ATM and TP53 genes in CLL. We examine why different cases progress differently and why therapies have such diverse results. While deletions of these particular genes generally have poor prognoses, knowing about them does help you choose your therapies more intelligently. In addition, the advent of monoclonal antibodies like Rituxan and Campath has improved the outlook for these cases considerably.

    Chronic Pulmonary Inflammation

    Major New Study Indicts Role of Pulmonary Inflammation 

    Deadly Feedback Cycle of Inflammation and CLL

    Widespread anecdotal evidence suggesting pulmonary complications are a major factor in CLL is now supplanted by solid statistical data reported in an article in the November issue of the journal Cancer by a team led by Dr. Kanti Rai at the Long Island Jewish Medical Center. They confirm that pneumonia is by far the leading cause of mortality and morbidity for CLL patients, and the leading pulmonary complication among patients hospitalized with CLL. Our November 26 article, Role of Pulmonary Inflammation in CLL, examines the relationships involved and implications for therapy.

    Side Effects

    Study Links EPO Drugs to Promotion of Angiogenesis, Tumor Growth and Shorter Survival

    The Dark Side of Epoetin 

    A very recent study casts light on some negative aspects of epoetin therapy. In addition to the desired effect of a rapid increase in red blood cells and hemoglobin and an improvement in quality of life, these drugs have now been shown in a carefully designed study to promote significant angiogenesis and tumor growth. Our November 22 article, The Dark Side of Epoetin, gives you an overview of the research on this aspect of an important supporting therapy.

    Chronic Inflammation

    New Therapeutic Approach 

    Interaction between CLL and Chronic Inflammation

    Sinus problems got you down? Here are some conclusions from recent research in cellular biochemistry. The good news is that the linkage between inflammation and CLL offers a hint for a new therapeutic approach.  You can read about it in the article dated November 15, CLL, Chronic Inflammation and What You Can Do About It.

    Disease Characteristics

    Nature of CLL 

    Clonal Evolution: How the Disease Grows and Evolves

    In this article we review important new research into the mechanisms by which clonal B-CLL cells become more aggressive and harder to kill. We look at the implications for treatment strategy and offer a new approach to managing the disease in Clonal Evolution, dated November 7.

     

    The
    Case of
    the Round-Headed
    Kid

    Combination Immunotherapy for a Difficult Case

    The Round-Headed Kid May Finally Get to Kick One Between the Goal Posts.
    (With apologies and appreciation to Charles M. Schulz)

    A Poor Cytogenetic Aberration Is Not Necessarily a Guarantee of a Poor Clinical Outcome -
    but Choices Are Trickier
    .

    Lucy may have never given Charlie Brown that perfect opportunity to kick a field goal, but we give our own round-headed hero, Harvey, a hand in figuring out what to do when he gets some bad news on the cytogenetics front. Faced with a 11q deletion event, our hero gets down to facing the facts and grappling with some thorny questions. Read about Harvey's problems and his approach to a solution. A long list of abstracts points the way to a possible therapeutic strategy in The Difficult Case of the Round-headed Kid.

    RHK- II

    The Continuing Saga of Harvey, the Round-headed Kid

    An Update on How the RHK Protocol Worked Out for Harvey; and Some New Choices He Now Faces.

    When Harvey learned that his hitherto indolent CLL had evolved to include a 11q deletion, he decided to learn what the bad news meant. Based on extensive reading and with the help of a doctor who knew how to listen, he came up with the RHK protocol. In this continuation of our hypothetical case study, we follow Harvey's progress on the protocol. Our hero's hard work produces great results but now he and his doctor have to decide if and what additional treatment will further reduce the remaining disease. You can read about this sequel in "The Continuing Saga of Harvey, the Round-headed Kid" or perhaps you prefer to start at the beginning of the case study in "The Difficult Case of the Round-headed Kid".   

    Harvey's Chocolates

    The Round-Headed Kid Has a Sweet Experience  

    Porting EGCG to the System

    We present one possible way of improving the bioavailability of EGCG through oral and mucosal absorption of the potent phytochemical. Read Harvey's Chocolates to discover the formula, the sweetest way yet to get the phytochemical into your system.

    Harvey's Saga

    Maintaining a Remission; The Dangers of Overmedication 

    An Update on the Case of the RHK

    Harvey, our Round Headed Kid, is experiencing the benefits of a deep remission after going through the "RHK protocol" three months ago. He is on an aggressive regimen of medication, supplements and exercise, a program that he and Serena negotiated with "Doc" to keep his remission going. However, nothing is simple for our hero. In this update Harvey and Serena find out from a blood test that it pays to be vigilant - you will learn about the dangers of drug interaction and overmedication in the Latest on Harvey, the next installment of our continuing case study.  

    Semiannual Report on Harvey

    A Snapshot of How our Hero Is Doing in December 2024

    Managing a Remission

    It is six months later and Harvey, our Round-Headed Kid, is still doing well after his last bout with the "RHK protocol". We present a short report on his status in this Semiannual Report on Harvey.  

     

     

     

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