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Site Updated:  10/10/04


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Web CLLTopics.org

Welcome to CLLTopics

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:  10/10/04

Notes

Printing Articles:

If you are like most of our readers, you will want to have a printed version of an article or reference page in this website sooner or later. You may be lucky and stumble over a Print Article link at the bottom of your page. Our Technical Notes section may help you get your pages formatted nicely for printing. But before you print anything, please read our copyright notice below.

Browser Compatibility:

If you have difficulties with the way your browser displays the pages on this website, our Technical Note on Browser Compatibility may be of assistance.

Email Addresses:

We have had to take action to stem a growing torrent of spam. For more details, click here.

For a complete list of our email addresses, click here.

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, 2003. Its predecessor was a discussion group on Yahoo! Groups, originally launched on April 7, 2002.

The Project Alpha proposal was published online on September 23, 2003.

CLL Topics, Inc. was registered as an Arizona non-profit corporation on October 27, 2003. The IRS issued an advance ruling on the Corporation's 501(c)(3) tax-exempt status on June 21, 2004.

On December 16, 2003 the collaboration with Mayo Clinic on Project Alpha was announced. As of December 16, 2003, the Donations page went live.

Fundraising Summary:

Total Gifts as of 10/06/04 - $55,129.55
from
164 donors. For details, please click here.

Financial Statements:

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

Fiscal 2003 Statement;

Interim 2004 Statement.

 

CLL Topics, Inc.

PO Box 168

Sedona, AZ 86339-0168

Copyright © 2002 to 2004. CLL Topics, Inc.
All Rights Reserved.

 

Read It In German

Online Community for Leukemia Patients in German-speaking Countries.

Information, Support and a Forum for Our German Speaking Visitors

Leukämie-Online.de is one of the largest online communities of leukemia patients in German-speaking countries. Among the major objectives of the group are patient education and the rapid  dissemination of information about new treatment options and progress in research and therapies. Like CLL Topics, this organization has been launched and is run by volunteers and is entirely patient funded. The community was founded and its website created by Jan, a CML patient.

Topics volunteer Roland Keilwerth has put in the time and effort to translate selected CLL Topics articles into German for publication on Leukämie-Online.de. Thank you, Roland.

You will find links to this and other patient education and support groups on our page dedicated to Support Groups.


December 16, 2003.

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.  

 

 

We now have 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
$55,129.55 from 164 donors
as of 10/06/04.
Our original target for fundraising
 for Project Alpha is $75,000.

__


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

 

              

NEW ARTICLES

                   

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'.

Arabella Gets Xcyted

A Case Study in CTL Therapy

A Volunteer Updates Her Report as She Goes Through the Xcyte Therapies Protocol

Our intrepid volunteer, Arabella, brings us up-to-date through her second infusion of expanded T-cells as she undergoes the cutting-edge Xcyte Therapies, Inc. protocol, conducted at an anonymous Consortium Cancer Center. In Report 4 and Report 5 she continues the narrative of this case study. If you would rather start at the beginning, you may go straight to the top.

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.

Rituxan + HDMP Clinical Trial Update

Correspondence with Dr. Thomas Kipps

Current Status of Trial -  Detailed Inclusion and Exclusion Criteria

We thank Dr. Kipps for responding to our query regarding the status of this trial. You can read the correspondence in Rituxan + HDMP Update.

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. 

FluCam 106

Combination Therapy with Fludarabine and Campath

Berlex Labs Recruiting Participants for Phase 2 Multi-center Clinical Trial Supervised by John Gribben

We report on our participation in a Patient Advisory Board Meeting conducted by Berlex Laboratories, US distributors for Campath and fludarabine. FluCam 106 is a direct head-to-head comparison between Campath + fludarabine versus the better understood Rituxan + fludarabine therapy pioneered by Byrd, et. al. Campath plus fludarabine is a powerful combination of agents that has proven effective even in cases refractory to fludarabine and Campath as single agents. This is an important clinical trial and we examine the issues involved.

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.   

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.  

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

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.

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?". 

New Drug in Clinical Trial

Novel Application of a New Anti-CD25 Immunotoxin Offers Prospects of Highly Targeted and Effective Therapy

LMB-2 in Phase -II Trial Sponsored by NCI

We report on the recently announced clinical trial of a new immunotoxin, LMB-2,  which shows early promise in attacking CLL cells. The technology has great potential if it is used in combination with immunomodulators such as bacterial-DNA derived CpG-ODN to up-regulate CD25, improving targeting of B-CLL cells. We discuss the background, results from early trials and the potential for effective treatment with low toxicity using this agent. Read about it in LMB-2.

ASH Meeting Notes

Patient's Eye View of the Forty-fifth Annual Meeting and Exposition of the American Society of Hematology

Review of Papers and Presentations

Topics' volunteer Suzanne Burr jumped at the chance to attend the annual ASH meeting. This is entirely understandable given her experience as a medical technologist with over twenty years background in hematology and related fields. In this report, she provides us with synopses of a number of papers that were presented at the meeting. Click here to read her ASH Meeting Notes

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?".

Making Therapy Choices

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. 

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".   

Journey of a Newly Diagnosed CLL Patient

Application of Peter's Principles

A Patient Talks About His Experience and the Lessons Learned

"Journey of a Newly Diagnosed CLL Patient"  is both a personal narrative as well as a collection of important principles directed at helping newly diagnosed patients. The author, Peter Carpenter, is uniquely qualified to provide this perspective. He is a patient who has gone through his own battles to come to terms with the disease, armed with a multifaceted background in the sciences and the medical research arena. He provides insight on how things work in the practice of medicine and some useful practical guidance in dealing with important issues.

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.

Idiotype Vaccine for CLL

Genitope Corporation May Be Preparing Idiotype Vaccine Trial for CLL

We Look for Answers at Advocacy Summit

The early promise of idiotype vaccines has been long held back by the difficulties of applying vaccine techniques to CLL. But our understanding of the science and the capabilities of the vaccine production technology have nevertheless made progress. Now Genitope Corporation may be in a position to try this approach for CLL, leveraging off what has been learned in their work with follicular lymphoma. Read about idiotype vaccines, the difficulties in applying them to CLL, and the possibility of a Genitope vaccine clinical trial in the January 9 article,  "An Idiotype Vaccine for CLL?"

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.

New Agent in Clinical Trial

Autologous Bone Marrow Transplants Could Achieve a Higher Success Rate if Adequate Stem Cells Can be Harvested.

AMD3100: Use in Stem Cell Mobilization for Transplants

The techniques of stem cell transplantation have been improving over the years. AMD3100, a new CXCR4 blocker originally developed for AIDS treatment, shows promise in mobilizing stem cells for harvesting in both autologous and allogeneic stem cell transplantation procedures. Read about this new agent in the article, AMD3100: Use in Stem Cell Mobilization for Transplants.

 

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.

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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 project proposed by CLL Topics for a patient-sponsored and patient-funded clinical trial to utilize available biologic and immunotherapeutic agents to treat early stage patients and delay progression of the disease. Read the announcements about the project, the description of the project and the logic behind it in the letter from our Founder.

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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 .

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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Beta Glucan

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Vitamin D3
 

 

 

 

 

 

 

 

Elsewhere on our
Website

Status of Fundraising

You can look up where we are in our fundraising for Project Alpha both on the Donation page and the Acknowledgements page on this site. We are proud to acknowledge the generous gifts of many who are supporting 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. The latest article in this section is Suzanne Burr's "ASH Meeting Notes". It presents her notes, commentary and impressions from the December 2003 meeting of the American Society of Hematology in San Diego.

Physicians' Corner

In our section called Physicians' Corner, you will find articles and correspondence from physicians, researchers and other experts. In "Fludarabine, FISH,  Prognostic Indicators", you can read 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 2003 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 2003 and granted in May of 2004 with benefits retroactive to November of 2003. 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
2002 stage 0"

Agent Orange Forum

Agent Orange Debrief is a forum for discussion of Agent Orange related issues. 

 

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 2004 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

 

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, 2003.

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.

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."

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 this October 20, 2003 article in the section on Chemotherapy or for a shortcut just click here