All Articles

Date Title & Description
09/22/2023 Dr. Chaya R. Venkat, 1948-2023

Dr. Chaya Rao Venkat, wife, mother, daughter, scientist, and patient advocate, passed away on September 20th, 2023, at her home in Rancho Mirage, California. The cause of death was heart disease. She was 74 years old.

02/11/2021 Bleeding problems – after COVID-19 vaccine shot

This is a very early head’s up.  Things are moving so fast that sometimes I have to alert you with information that might be a little bit premature.  Please take that into account as you read this alert.

01/30/2021 Vaccines, Variants and “Viral” therapies

This article is an editorial. My advice to you about COVID-19 vaccines, mutant strains, and “viral” therapies — along with action items to help you survive this pandemic.

01/25/2021 Mental Health

Mental health is a topic that should be at the forefront of the conversation.

01/17/2021 COVID-19 Therapy Options – Monoclonals

We discussed Remdesivir and convalescent plasma in the previous article. In this continuation of the topic, we will discuss monoclonal antibody cocktail(s).

01/09/2021 COVID-19 Therapy Options – 1

In this and the next article I will discuss the various therapy options presently available to us, should you get infected with COVID-19 in spite of your best efforts.

01/02/2021 Avoiding COVID-19 Infection

COVID-19 and immune compromised patients: I have something to say, advice that I think could be a game changer for you. How can I stay silent?

06/23/2013 Time to say good-bye

My “sabbatical” has ended, it has now become full fledged retirement.

10/06/2012 Au revoir, not good-bye.

There is a time for everything.  And now it is time for me take a sabbatical – which means there will be big changes in how we run CLL Topics and Updates.  This is just au revoir, I hope, not good-bye.  Please read below for what it all means to you and the services we offer.

09/19/2012 Compassionate use access programs

Compassion” has become an old-fashioned word.  It seems not too many pharmaceutical companies make any decisions based on it anymore.  Allow me to share with you my recent attempts at getting compassionate use program established at one of our largest pharmaceutical companies.

08/31/2012 News you can use

I came across several interesting bits of news – some that you can use today.  Let me know what you think.

08/21/2012 Bendamustine + Rituxan: better than FCR?

While we wait for the results of the German double arm trial making this important comparison between these two chemoimmunotherapy regimens, here are the results of a single arm B+R trial that allows a reasonable degree of comparison against the present day gold standard of FCR.

07/07/2012 PCI-32765 (ibrutinib): What We Know Thus Far

PCI-32765 (ibrutinib) is one of the new generation of targeted kinase inhibitors that is getting a lot of attention.  ASCO 2012 had three important papers on this drug.  So far, so good!  But please make sure you read the Editorial section as well, where I highlight some adverse effect concerns based on feedback I got from people taking this drug.

06/20/2012 End of Chemotherapy in Our Lifetime?

Last month I was invited to speak at the CLL-PAG conference in Canada.  One of the other speakers was Dr. Mike Keating.  He prophesied that in the next 2-3 years chemotherapy as we know it today will become obsolete and we will begin curing CLL patients without such barbaric & toxic stuff.  Here is the technology that he thinks will do it.

05/27/2012 Does Positive Thinking Influence Cancer Outcome?

Many patients truly believe that if they can only practice true positive thinking, they will be rid of cancer, eventually.  For these folks disease progression carries the additional burden of sense of failure.  The Medscape article I review below is very worth reading –  for the sake of your mental health.

05/19/2012 Notes from a Richter’s Transformation Survivor

A certain percentage of patients undergo the dreaded “Richter’s transformation” into a far more aggressive lymphoma.   But it is not an automatic kiss-of-death.  Here is the real-life story of a patient whose experiences should give you reassurance.

05/07/2012 CAL-101: Phase 3 Trial in Combination With Rituxan

This article reviews an important phase-3, large scale, double arm trial that has just opened for recruiting previously treated patients.  The trial looks to compare CAL-101 + Rituxan vs. Rituxan alone.  Before you sign up, you really, truly need to understand the details of the design of this trial.

04/01/2012 A Happy Ending

I must confess, happy endings are not as frequent as I would wish in high risk patients undergoing mini-allo stem cell transplants.  Here is a real-life case history.  On this lovely spring day, it is good to remind ourselves of health, renewal and hope.  I think you will like Jane’s story.

03/12/2012 Skin Cancer and Vitamin A

That is not a typo, I do indeed mean Vitamin A and not the usual Vitamin D story that we have discussed umpteen times before.  It seems Vitamin A may help reduce risk of aggressive melanoma.  Who knew.  And have you heard of Merkl Cell Carcinoma, a skin cancer just as deadly as malignant melanoma?

02/20/2012 FC + Campath for Chemo-Naive Patients

Here is a perfect example of a drug therapy regimen that is more dangerous than the disease.  You are all familiar with FCR, the present day gold standard. This French clinical trial substituted Campath in place of of Rituxan.   Big mistake.  Don’t let anyone talk you into this combination – it might kill you sooner than the CLL.

01/31/2012 Erivedge: Brand new FDA approved drug for aggressive basal cell carcinoma

The risk of basal cell carcinoma is significantly higher in CLL patients than in the general public.  Given our immune dysfunction, it is also likely to be more aggressive and harder to treat.  I am pleased to report FDA approval of a brand new drug (“Erivedge“)for aggressive basal cell carcinoma.

01/19/2012 Controversies in Communication

You think it is hard to talk to teenagers?  Try to walk in the shoes of an oncologist trying to talk to a cancer patient with unrealistic expectations.  Conversely, imagine talking to a dismissively paternalistic physician who is tone deaf to the needs of his patients.  The article we review below does an excellent job of discussing these tough issues.

01/15/2012 How to Treat Elderly CLL Patients

Even for the young at heart, age does make a difference.  This is of particular importance when we consider therapy options for elderly patients.  Here is a review of a “best practices” paper that discusses the special needs of elderly CLL patients.

01/05/2012 “Doc, How Long Do I Have?”

That is the first question that pops into our brains, when we are first diagnosed with cancer.  CLL patients are no different in that respect.  So, what can early stage CLL  patients expect, by way of both quality and quantity of life?

12/30/2011 PCI-32765 trial at the NIH – Update

This is an important trial – one that we really need to monitor going forward.

12/19/2011 A Well Designed PCI-32765 Clinical Trial – just about to open

Kinase inhibitors such as PCI-32765 are going to play an important role for CLL patients.  How important?  How best to use them? What are realistic adverse effects?  Who is most likely to benefit?  This well designed NIH / NCI clinical trial will help answer these questions – without conflict of interest or good science taking a backseat to commercial hype. We really need this trial.  Merry Christmas to us all! 

12/16/2011 PCI-32765: ASH2011 Update

PCI-32765 is a very interesting kinase inhibitor drug, similar to CAL-101.  Here is the latest information on this drug presented at ASH2011 (December, 2011) conference.  This and other next generation designer drugs like it may change the whole ballgame for CLL patients living today.

12/13/2011 CAL-101: Update at ASH-2010

This year’s ASH (American Society of Hematology) conference has a number of interesting presentations for CLL patients.  I will be reviewing some of them in the next few days.  This first review deals with CAL-101 single agent study, followed by combination drug studies in a few days.

12/03/2011 MRD-Negative Status: What is it Worth?

MRD-Negative status means even our most sophisticated tests cannot detect any CLL cells in your body, at the end of therapy.  If you get MRD negative status, does this mean you are cured? Is it worth going the extra mile (or two, or more) to get this coveted status? Does it make a difference to how long you can expect to live?

11/16/2011 “Incurable, Invisible and Inconclusive”

That is the title of a recent article in the European Journal of Cancer Care.  Sounds like something you may recognize?  Read on.  You are not going crazy, you are not  the only one feeling frustrated.

10/25/2011 (Almost) Everything You Need to Know About CLL

The CLL guidelines formulated by the International Expert Working Group are the state-of-the-art guidance on how to diagnose, evaluate and treat our patients. Physicians who are not familiar with these guidelines are not likely to be your best bet.  This is stuff you and your oncologist should know in your sleep!

10/14/2011 SOS: Save Our Stem Cells

When too many hematopoietic stem cells die, the body is no longer able to make new blood cells (red blood cells, platelets, neutrophils etc). Patients may become transfusion dependent, just to stay alive.  Aggressive chemotherapy may cause this type of pancytopenia, especially in elderly patients.

09/23/2011 B+R in Relapsed Patients

There is no doubt that bendamustine (in combination with the ever popular Rituxan) is trying to displace FCR as the modern day gold standard.  For a change, we have solid clinical trial results to look at.

09/12/2011 Is There a Malignant Stem Cell at the Root of CLL?

It is generally accepted that cancerous stem cells can be at the root of several blood cancers.  But while the concept has been kicked around, there has not been formal consensus that there could be a malignant stem cell at the root of CLL in particular.  That may be changing.  And it has implications for therapy options.

09/03/2011 Does Your Doctor’s Expertise Matter?

Does it matter whether you see a local oncologist or one of the CLL experts?   Are your chances of survival better if you stick close to home with a community oncologist, or are you better off traveling to an expert center?  As always, devil is in the details.

08/27/2011 CFAR Frontline Therapy for High Risk Patients

In an earlier article we saw CFAR was much too toxic in a group of relapsed / refractory patients.  However, does this combination have a role to play as frontline therapy in high risk but otherwise healthy patients? You be the judge, here are the definitive results of this approach.

08/12/2011 Other Than That, Mrs. Lincoln, How Was the Play?

Does humor have a role when dealing with messy, frustrating and to-date incurable cancers like CLL?  I think so, but obviously not everyone agrees.  What say you?

08/11/2011 T-cell Therapy: Research Breakthrough !(?)

New T-cell based therapy research findings from the University of Pennsylvania have received rave reviews in the lay press.  Is this a breakthrough or just more hype? What exactly is the breakthrough?  Here are the details for your reading pleasure.  You can bet I will be keeping a close eye on future developments in this area.

07/27/2011 Revlimid for Elderly Patients

This has to be among the more positive developments I have seen in recent months.  Elderly is defined as anyone over 65, so it may be applicable to you after all!

07/17/2011 Prognostic Indicators: Who, When, What and Why

Prognostic indicators have vastly increased our understanding of CLL and our ability to distinguish between high risk patients and lucky “smoldering” variety. Is this must have information? Should patients ‘encourage’ their physicians to do prognostic testing?  This is an important issue and one that impacts all patients.

07/04/2011 Depression in cancer patients and their caregivers

There are not that many good articles dealing with quality of life issues for cancer patients.  There are no studies at all, when it comes to QOL for caregivers. Are there any options besides the usual anti-depressants?  If these new clinical trial work as well as expected, we may have some truly out of this world  therapeutic choices in dealing with depression.

07/02/2011 Treating Relapsed or Refractory Patients – Part 2

In the first part of this series we looked at treating relapsed / refractory CLL disease with aggressive therapy – CFAR was just one choice.  This second installment examines options that focus more on elderly or refractory patients ability to tolerate therapy:  treatment focused more on the patient and less on his disease.

06/24/2011 Treating Relapsed or Refractory Patients – Part 1

Making the right therapy choices is all the more important in relapsed or refractory patients, especially if they are also “elderly”.  Do you treat the patient, or do you treat the disease? This and my next article highlight these two very different approaches.  You be the judge which is more your cup of tea.

06/16/2011 Taking a “BiTE” out of B-cell cancers

There has been a recent impressive breakthrough for ALL (acute lymphoblastic leukemia) – but I have been following this “BiTE” technology for a long time. CLL could be the next big target for this bispecific antibody.  And if I were a betting type, I would bet on this technology.

06/08/2011 FCR “Lite” – Czech version

While FCR continues to be a very popular front line therapy for treating CLL, it is often contra-indicated in older patients with other medical issues.  “FCR-Lite” has been proposed as an alternative, where F and C doses are reduced to bring the toxicity level downs as well. Here is an update on this approach.

05/28/2011 Cancer’s Cost

Are we spending enough on cancer research? What are the real costs of clinical trial participation –  over and beyond the hassle, risk of poorly understood adverse effects, travel costs, time away from home and work etc? Quite a lot, it seems. All the more reason why our members who do participate in them deserve our heart-felt thanks.

05/26/2011 CAL-101 Update: half full glass

It is hard not to get carried away by the hype and buzz that has surrounded CAL-101.  But it pays to remember these are early days and there is yet a lot to be learned.  Is the glass half full or half empty?  I guess it depends on your personality type and how you read the latest results of this clinical trial: single agent CAL-101 in previously treated CLL patients.

05/21/2011 PCI-32765: Interim results of Phase I/II study

PCI-32765 is a kinase inhibitor, a Bruton kinase inhibitor that is getting a lot of attention as a new  and potentially valuable drug in CLL.  Here is the latest information on how patients are doing in the early stage trials

05/18/2011 Vaccinations, infections and skin cancer

Majority of CLL patients die of uncontrolled infections – pneumonia is the most common killer. Our guys are no strangers to secondary skin cancer either.  Immune dysfunction is baked into the CLL cake, often made worse by chemotherapy.  Anything that can improve immune function can save lives. In that context, this could easily be the most important review I have / will ever publish.

05/13/2011 Interesting Tidbits

Very often I come across interesting little nuggets of CLL information that are not quite enough for a full article.  In an attempt to capture these tidbits, I thought I would start this on-going thread.  New items will be reported under this heading as they come to my attention.

05/09/2011 Who is best served by FCR as salvage therapy?

Several clinical trials have highlighted the use of FCR in chemo-naive patients.  But who is likely to get most joy from FCR as salvage therapy, after relapsing from other therapies?  When is FCR salvage not worth trying?  Here are some useful pointers  from M. D. Anderson.

04/22/2011 FCO for Chemo-naive Patients

How does FCO (fludarabine, cyclophosphamide, ofatumumab) compare with the present day gold standard of FCR? Does substituting ofatumumab (also known as Arzerra, Humax-CD20) instead of Rituxan make a difference? Here is a first look at this important comparison.

04/10/2011 Workshop III: All About Prognostic Indicators

Yesterday (April 9, 2011) we held our third workshop, “All about prognostic indicators“.  Here is my slide presentation and comments.  We had a full house and I cannot do justice to the very lively discussion during and after. If you were among the participants, please chime in, add your comments. This is a community affair, things work better when you guys  pitch-in as well.  Thanks.

03/30/2011 “Out-Sourcing” CLL

One man’s pro-active response to CLL diagnosis is another man’s obsessive behavior.  When does “out-sourcing” CLL worry become denial?  Where in the spectrum of patients’ responses do you fit?

03/17/2011 Bendamustine for Previously Treated Patients

Bendamustine is not your latest sexy biologic drug on the scene. Nevertheless, it is a valuable addition and I bet some of you will be using it in the future. Here is the latest info on it, when combined with Rituxan.

03/07/2011 Announcing CLL Topics Workshop #3

I am pleased to announce the date, time and location of our Spring 2011 CLL Workshop.  With little more than a month advance notice, I hope more of you will be able to attend.  The subject is one that is always of interest to CLL patients: Understanding Modern Prognostic Indicators.

03/03/2011 “Cost” of Rituxan & Hepatitis

If you thought I was going to talk about the dollar cost of Rituxan, you are wrong.  Heaven knows this drug is very expensive, dollar wise.  But this article is about the hidden costs of this famous monoclonal antibody drug in terms of its not-so-well documented adverse effects.

02/15/2011 Treating Older CLL Patients

Like it or not, majority of CLL patients tend to be older.  Are present day FCR style therapy options right for elderly patients? How well are older patients represented in clinical trials?  Here is an expert’s opinion on treating older CLL patients.

02/06/2011 Cancer and Pain Management

Many “solid” cancers are associated with a lot more physical pain than CLL.  But we have our share.  Painkillers can be a huge blessing – and they can also just about kill you if you overdose.  Knowing what to take, how much to take can save you anguish – and keep you safe.

02/04/2011 The Medicinal “Neem” Tree – CLL Clinical Trial

A brand new clinical trial at Roswel Park is going to recruit CLL patients using extracts from the “neem” tree.  Neem extracts have been used since ancient times for curing a variety of illnesses.  This modern scrutiny of neem’s medicinal properties to treat CLL should be interesting.

01/22/2011 FCR Study: Conflicts of Interest?

Recently I published a review of an article in Lancet comparing FC versus FCR.  This large scale, multi-center phase-3 trial established FCR firmly as the present day standard of care for CLL patients.  How reliable were the results? Were there conflicts of interest?

01/15/2011 Blood Clots

Most often, CLL is slow moving beast.  But sometimes it creates problems that need quick action on your part.  Being able to spot an emergency and respond to it in real time may save your life.  Blood clots can cause strokes, heart attacks, even death. You are at risk and here is your wake-up call.

01/09/2011 FCC: There have to be better options than this!

Y’all know what FCR stands for: fludarabine, cyclophosphamide, Rituxan.  If we substitute Campath instead of Rituxan, we get a new combination – FCC.  This ASH2010 report describes (scary) clinical trial results of this combination in high risk and relapsed patients.

12/26/2010 Out of ashes, a new beginning.

Looking behind to see where we came from, looking forward to see where we are going, a little introspection is good at this time of the year. Please let us know what you think of this site’s two year track record, anything you would like to see changed.

12/24/2010 CAL-101: Dawn of a new era

I have been following the development of CAL-101 – the first generation kinase inhibitor drug to treat CLL – with great interest.  These are exciting but still early days.  Nevertheless, the results published thus far are cause for optimism. Just in time for the Holidays.

12/20/2010 ISF35: CLL “Vaccine”

I have been waiting for some time to review ISF35 vaccine technology, waiting for mature results that gave me clear indication where it is headed.  I decided not to wait any longer.

12/13/2010 Myeloid Cancers – Caused by CLL Therapy

I think all of us can agree, getting a second cancer while we are trying to deal with the first one is a real bummer.  When the second cancer is caused by the drugs being used to treat your CLL, that is like adding insult to injury.

12/11/2010 Lenalidomide (Revlimid) in the News

Over the next few weeks I will be reviewing abstracts from the recently concluded ASH2010 conference.  First in line, here are a couple on lenalidomide (Revlimid) that I found interesting:  what to do and what not to do with lenalidomide.

12/04/2010 Late Stage CLL
Staging is one of the most important benchmarks when it comes to CLL treatment decisions.  A brand new “Blood” article describes Rai and Binet staging details that you really should understand.

Staging is one of the most important benchmarks when it comes to CLL treatment decisions. A new “Blood” article describes Rai and Binet staging details that you really should understand, especially if you are late stage and about to start therapy.

11/30/2010 The Patient That Gets No Respect

Have you ever thought about what you can do to improve your working relationship with your healthcare team?  It is a two way street, the mutual respect that is necessary for best outcome.

11/09/2010 Worried about Skin Cancer?

T-cells are the “smart” troops that protect us against infected or cancerous cells. T-cell deficiency may increase your risk of secondary cancers – especially skin cancer. Yet many therapies such as FCR, PCR, Campath etc used to treat CLL destroy T-cell counts. Is there a way to finesse this rock-and-a-hard-place scenario?

10/31/2010 Neupogen & Neulasta: Risks and Rewards

Cancer patients are often at risk of neutropenia (too few neutrophils) and growth factor drugs such as Neupogen and Neulasta are popular.  While they are important drugs and save  lives of many cancer patients, are there downside risks of their use that need to be better understood.

10/29/2010 Use Red Blood Cell Growth Factors (Aranesp, Procrit, Epogen) With Caution

Red blood cell growth factors (trade names Aranesp, Procrit, Epogen etc) are quite popular with CLL patients.  But the latest guidelines regarding their use suggest caution.  Notwithstanding consumer-targeted advertisements, you need to understand the risks involved in using these drugs.

10/21/2010 When “FISH” Results Can Be Mis-leading

Recent European clinical trial results have emphasized the importance of getting up-to-date FISH testing prior to front-line therapy decisions.  Are there situations when FISH results fail to warn us ahead of time?  You bet! 

10/09/2010 Crystal Clear Results on FCR

The latest FCR versus FC clinical trial is  Phase III (late stage), large scale, multi-center, double arm and randomized study.  It does not get more credible than that.  It is important you get the picture straight, not get confused by misinformation on chat rooms and the lay press.

10/02/2010 Clinical Trials and the “Bad Old Days”

In the lifetime of many of you reading this article, we have learned a great deal about medicine, scientific research and human nature. We have learned many wonderful things.  And there have been some horrific things done in the name of medical research.  Read and weep.

09/26/2010 Mini-Allo Stem Cell Transplants: Who Should Get Them?

Mini-allo stem cell transplants are the only (repeat, only) therapy than can actually cure CLL at this point in time.  Here is a review of the latest think on who should get stem cell transplants. And when.

09/20/2010 Campath Consolidation – the Jury is in.

Almost a year ago I wrote with deep disappointment about the results of Campath consolidation.  Just published results now confirm my worst fears.  Topping up standard therapy regimens with Campath as a way of “improving” your results is not likely to increase your life span.

09/17/2010 The Magic Flute

Have you suffered a deep chest infection where you felt your lungs and airways were choking with thick blobs of  mucus and no amount of coughing could bring it up sufficiently to let you breathe again?  Here is an interesting development that may help in those situations.

08/25/2010 What causes CLL? (and can we do anything about it?)

We know that your genetics influences your chances of getting diagnosed with CLL. But do environmental exposure and lifestyles play a role as well?  How about viruses?

08/15/2010 Everything you wanted to know about FCR

On August 14th 2010 we had our second workshop and discussed FCR therapy. The workshop was well attended and generated lots of questions, discussion.  You can see my presentation and comments below.

08/10/2010 Better than the “Gold Standard”?

FCR  is good, but can we can do better than that? You think?  Yes we Can.

08/07/2010 Your Continuing CLL Education

CLL is a confusing disease.  With so much changing, our best defence is information.  Here is an excellent and expert article that gives us credible and useful information. Ignore at your peril.

07/27/2010 Take Care of Your Liver

One of the crucial organs that can be infiltrated and damaged by CLL cells  is your liver. It is time you learnt about this very important organ.  If your liver shuts down, that can kill you a lot more quickly than CLL can.

07/07/2010 Is FCR in Your Future?

By popular request, our 2nd CLL workshop on Saturday, August 14, 2010 in Columbia, Maryland will be all about FCR: its risks and rewards, who is most likely to benefit, me-too versions like FCR-Lite and PCR, adverse effects you can expect – all the gory details inquiring minds want to know.

06/27/2010 The Statin Controversy: Do They Help CLL Patients?

Statins are probably the most often prescribed medications in the world, for the purpose of lowering high cholesterol. Are statins good for cancer patients?As the title suggests, this is a controversial issue.  You can make up your own mind after reading the latest information on this subject.

06/21/2010 What We Discussed at Our First Workshop

Here is my presentation at the June 19, 2010 CLL Topics Workshop.  I hope some of the folks who attended will chime in with their comments about the discussion session, for the benefit of the many that could not attend.

06/15/2010 Perifosine: A New Drug on the Horizon

Perifosine is a good example of the new breed of “smart” drugs that may give us better control over how cancer cells accumulate – with far fewer adverse effects than conventional chemotherapy.  We  review the science behind perifosine and highlight a new clinical trial at Duke for CLL patients using this interesting immunotherapy approach.

06/13/2010 Prognosis Markers in CLL

We have come a long way since Mayo Clinic published their “Prognosis at Diagnosis” article.  In many ways, reading that article seven years ago and wishing to share its findings with other patients triggered the start of my patient advocacy.  Where are we with prognostic markers today?  Do they serve a useful purpose?  Here is what Dr. Terry Hamblin has to say about it. 

06/07/2010 Site News: June 19th Workshop – Columbia, Maryland

Our first CLL workshop is just around the corner, on  Saturday June 19th.  We are not too hard nosed about deadlines if we can handle the process, so it is still not too late to register if you wish to attend.

06/05/2010 Downside of Rituxan Maintenance Therapy

Rituxan is part of most chemo combinations. Some protocols use Rituxan maintenance therapy as a way of prolonging remissions.  You should also be aware of the downside risks of this approach.

05/30/2010 CLL Workshop

I am pleased to announce the first CLL Workshop for our East Coast patient community.  Based on your feedback of the effectiveness of this first workshop we hope to have more of them in future on a periodic basis.  This is a new initiative we are undertaking – nothing ventured, nothing gained.

05/27/2010 FC versus FC+R

Clinical research moves frustratingly slowly, especially for patients facing therapy decisions right now.  But this important paper highlights major improvements that have been made in just the last decade.  The response statistics are soaring, remissions are holding longer, our guys are living longer, with no increase in toxicity.  I am delighted to report this very encouraging comparison.

04/25/2010 Insect Bites

CLL patients sometimes have nasty response to simple insect bites. It is important to recognize when a simple insect bite needs to be looked at by your doctor.

04/15/2010 Impact of Secondary Cancers on Overall Survival of CLL Patients

When push comes to shove, what matters most to us  is how long we can live with CLL, and the quality of  that life. How much of a penalty do CLL patients pay if they also get secondary cancers?

04/13/2010 Do Viruses Cause Secondary Cancers in CLL Patients?

Immune compromised CLL patients are easy targets for viral infections and reactivations.  Is there an increased risk of secondary cancers such as skin cancer due to viral infections?

04/04/2010 Case History of a Relapsed CLL Patient

Learning from case histories is a time tested approach.  I think you will find this true-to-life case history both interesting and informative. What are the options?  What are the risks and rewards? Someday, it may be your turn in the cross-hairs of therapy decisions post relapse..

03/24/2010 Physicians: Please Walk A Mile In Our Shoes

How accurately do adverse effects reported in journal articles reflect the reality of what average patients experience?  How are these statistics collected anyway?  Read on, I think you will be surprised.

03/14/2010 Myelodysplastic syndrome

A small percentage of CLL patients develop myelodysplastic syndrome (myeloid cancer precursor) and some of these guys go on to develop full fledged myeloid cancer. In this article we discuss risk factors and chemotherapy drugs that may increase your chances of myelodysplasia.

03/08/2010 FCR “Lite”

Rituxan seems to need help from old fashioned chemo to make it work better.  But can we optimize, reduce the chemo part of  FCR  as much as possible? Can FCR “Lite” deliver sufficient ‘oomph’ to kill CLL cells, yet be gentle on your body?  Here is the latest scoop on this concept.

02/19/2010 Does addition of Lumiliximab make FCR work better?

Over the last few years FCR has become the standard therapy for treating CLL patients.  The race is on to find ways of improving the “gold standard”.  In this article we review several approaches that have been tried in recent clinical trials.

02/14/2010 Neutropenia

Neutropenia is a frequent complication for CLL patients, especially during and after chemotherapy.  Risk of severe and possibly life threatening bacterial infection goes up with severe neutropenia.  There are things you can do to better protect yourself.

02/08/2010 How Much Chemo Is Too Much?

Most of us are familiar with the moral of the “Goldilocks” story. Is there some way of telling when you have had enough chemo? Or should you have all cycles in the protocol, no questions asked?

02/03/2010 Without Your Consent

Many professional research websites and this patient advocacy website  urge patients to volunteer their lives, their bodies, their biological samples for furthering our understanding and potentially helping those that come after us.  But what if there is no informed consent? Are you protected under the law? You might be surprised by the nuances of the answer.

01/31/2010 SLL Versus CLL: How Different Are They?

Dr. Terry Hamblin brings his expertise to this important question in this article.  Please read and join us in the discussion that follows.  Here is your chance to ask questions of a true expert. Did you know early stage SLL may actually be curable?  I must confess, I did not know that.

01/28/2010 Do It For The Fat Lady

J. D. Salinger died today. How many of you read his books when you were growing up and felt he spoke for your sense of alienation from a corrupt and ‘phony’ adult world?

01/23/2010 To Scan or Not to Scan?

One of my peeves with modern medicine is the over-dependence of high tech toys at the expense of old fashioned physical examinations based on experience and expertise. A little commonsense and risk evaluation goes a long way.

01/22/2010 Ground Rules

Ever since we opened our site to all visitors without requiring registration we have had a huge spike in site traffic.  I think it is time to spell out ground rules of this site for all our new visitors.

01/19/2010 “Chemoprevention” Approach to High Risk CLL

Better options for managing high risk “Bucket C” patients will go a long way in improving overall survival statistics.  We discuss a new clinical trial that is taking a “chemoprevention” approach.

01/12/2010 Cost of Therapy: Follow the Money Trail

Cancer drugs are almost never cheap and the new fangled monoclonal antibodies are at the top of the money pyramid.  But we tend to focus on the cost of the actual drugs, rarely on the downstream cost of taking care of inevitable adverse effects associated with the drugs we use. 

01/07/2010 CLL Staging: Devil is in the Details

Rai and Binet systems have been the bedrock of staging risk status in CLL.  This important ASH2009 paper explains where both of these staging systems fail in predicting specific high risk groups.

01/03/2010 Does Age at Diagnosis Make a Difference?

CLL is generally considered an “old man’s disease”. But what about younger patients?  Is age at diagnosis an important factor?

12/31/2009 “Updates” Starts its Second Year

The first year of any new venture is the most difficult.  Building on our successful first year we are changing a few things on this site.  I think you will approve.

12/20/2009 “How We Treat Influenza in Patients With Hematological Malignancies”

H1N1 flu has waned significantly in much of the country. I fear it is the lull before the storm, especially for immune compromised patients. Here is how one expert center is protecting their patients with blood cancers.

12/12/2009 Vitamin-D3: Make sure you are not deficient!

For several years now I have been preaching the importance of making sure you have healthy levels of vitamin D3 in your blood.  Now you don’t have to take just my word for it, Mayo Clinic reports the results of a large study which concur with my take on it.

12/08/2009 Campath for Consolidation

One of the major uses of Campath (“alemtuzumab”) has been for consolidation of gains already achieved with other therapy regimens. Here is the latest info on this approach.

11/22/2009 Role of Campath in CLL: FC + Campath

Latest information from ASH2009 is worth reading if Campath is in your future. This monoclonal antibody is the proverbial double edged sword, to be used with caution. Don’t say you have not been warned!

11/14/2009 Do patients live longer with FCR?

The million dollar question is this: are our guys living longer after FCR? At last, some credible results that address this question.

11/08/2009 Patient Advocacy for Times of Rapid Change

Back in April of 2009 I was invited to speak at the Niagara Falls CLL patient conference.  The organizers have kindly given us permission to publish full video of my talk.  Here it is. 

11/07/2009 “How I Treat CLL Upfront”

When Watch & Wait ends, do you know what to do?  Does your local oncologist know what to do? We will review a truly excellent “Best Practices” article by  Dr. John Gribben – a world-class expert who shares his expertise with us: when, why and what to use as front line therapy in treating CLL patients.

10/27/2009 Arzerra (Humax-CD20) Approved

This is a milestone development, approval of a new and important anti-CD20 monoclonal for the treatment of refractory CLL.  I am very pleased the FDA saw fit to approve Arzerra (Humax-CD20).  About time we got another powerful bullet to help us fight this disease.

10/21/2009 Complete Blood Counts: Red Blood Cells

This article is second in the series about CBC results.  We will discuss red blood cell parameters, what can go wrong, symptoms when things aren’t quite right, what can be done to improve them, your therapy options.

10/19/2009 Complete Blood Count: lymphocytes

CBC is probably the single most ordered blood test.  Here is the first of a series of articles that will help you interpret the numbers on your latest CBC, what they mean and when to get excited. In this article the focus is on white blood cells.

10/13/2009 CLL: Does Ethnicity Matter?

The answer in a word is yes. In this article we discuss the relationship between incidence of CLL and ethnicity.

10/10/2009 Cancer causing viruses

It has been known for sometime that several different types of cancer are caused by viral infection – which means down the road they may  be controlled by anti-viral drugs, prevented by vaccinations.  How about CLL? Is there a viral driver for what ails us?

09/27/2009 Sub-Q and Low Dose Campath

We review results of clinical trials for sub-cutaneous administration of Campath in refractory CLL patients, as well as efficacy of lower doses of the drug.

09/19/2009 Pandemic H1N1 Swine Flu: Status Report

I have been waiting for the picture to become a little clearer before giving you an update on what to expect this fall.  Here it is.

09/13/2009 FCR + Mitoxantrone: Clinical Trial Results

Most CLL patients are familiar with the FCR combination.  Does addition of mitoxantrone to FCR combo goose the response rates even higher?  Here are the clinical trial results.

09/08/2009 “Prochymal”: Less Than We Hoped For

Results from two pivotal Phase-III clinical trials of “Prochymal” are out.  It seems I may have jumped the gun after all in my recent enthusiasm for this technology.  Bummer!

08/27/2009 Squamous Cell Carcinoma in CLL Patients

Inadequate and late treatement of squamous cell carcinoma can become very dangerous in CLL patients.  Belt & suspenders approach to therapy seems to be needed to help prevent recurrence of this frequent second cancer in CLL patients. 

08/17/2009 Mini-Allo transplants: Last words

This latest expert review article of the who, when and how of stem cell transplantations validates all the points we made in our earlier three part series on the subject.

08/14/2009 Stem Cell Transplants – Are They Worth It? (Part III)

Taming the killer of graft versus host disease (GVHD) is at the very heart of improving mini-allo SCT.  We badly need breakthroughs in this area.  “Prochymal” is brand new technology for controlling GVHD that has high potential for improving safety of mini-allo protocols.

08/11/2009 Stem Cell Transplants – Are They Worth It? (Part II)

Comparing different therapy options is often a case of comparing apples and oranges. Comparing SCT versus conventional chemo is the hardest of all. Experts from Barcelona take a stab at it.

08/08/2009 Stem Cell Transplants – Are They Worth It? (Part I)

Here is the latest info on stem cell transplants – what is involved, what to expect, risks versus rewards, the whole enchilada.

08/03/2009 Call me a nag…

Or mutter darkly what a pain in the a$$ I am and you would be right – on the subject of CLL patients and risk of pneumonia. It is the single biggest killer of our guys.  Please read and act promptly!

07/29/2009 Chlorambucil vs Fludarabine: Which is Better?

Chlorambucil and fludarabine are two important drugs that are often used as single agent frontline therapy choices. Which is better? Here is the scoop.

07/19/2009 Results: Half-Time Survey

The results of our Half-Time survey are in!

07/17/2009 As I head out the door…

H1N1 is on my mind.  This virus has not gone away and it will be back this fall with renewed vigor. 

07/17/2009 Recent FDA warnings about Treanda (bendamustine)

FDA has announced some additional warnings about bendamustine (trade name “Treanda“) based on post-marketing surveillance.  Something to keep in mind if you are considering this therapy option.

07/15/2009 Green Tea

Sponsoring the green tea extract clinical trial at Mayo Clinic was undertaken by CLL Topics with your hard earned cash / donations.  It took us from 2003 to 2009 to get this far. Here are the results of the trial, now formally published and official.  Was it worth it?

06/30/2009 Half Time

How are we doing?  “Updates” made its debut exactly six months ago, a one year experiment to see if we can continue our education and advocacy efforts on behalf of CLL patients.

06/27/2009 Does Radiation Cause or Make CLL Worse?

Until recently the expert consensus was that there is no connection between CLL and exposure to radiation. Now that answer is a bit more murky. In the absence of a slam-dunk free pass for radiation, should you worry about getting CT scans?

06/11/2009 Pandemic 6 Declared: What it Means to CLL Patients

Today the WHO declared swine flu (H1N1) has reached Pandemic Level 6, stating the obvious. I would like to put this in context to CLL patients and the people who love them.

06/04/2009 An Interesting Vaccine Trial for CLL

Are you feeling lucky?  If you are recently diagnosed CLL patient and you have not yet been around the chemo circuit for too long, here is a very interesting vaccine trial – funded by CLL Topics and our member donations.

06/01/2009 One step closer

The FDA-ODAC meeting went well.  Ten votes for and three against approval of Humax-CD20 (ofatumumab, trade name Arzerra). Next step, we hope the FDA will accept the majority verdict of their advisor committee and formally approve this drug for use in CLL.

05/26/2009 Why Humax-CD20 must be approved

As you know, I will be schlepping to Orlando FL to appear before the FDA panel (May 29th) and plead for approval of ofatumumab (Humax-CD20).  Here is the draft of my comments. 

05/16/2009 Lessons from history

You know what they say, you either learn from history or you are doomed to repeat the same mistakes over and over.  There is much we can learn from past flu pandemics.

05/09/2009 Other Illness May Cause Worst Cases of Swine Flu

Are we there yet?  Can we forget about the H1N1 (also known as “Swine Flu”)?

05/06/2009 Should the FDA approve Humax-CD20?

Ok folks.  Time to put up or shut up.  Humax-CD20 (also known as ofatumumab and trade name Arzerra) is up for review in front of the FDA. I am planning to attend and speak on your behalf. I need your help.

05/05/2009 Niagara Falls CLL Conference

As promised, here are the slides and text of my speech at the CLL patient conference at Niagara Falls.

04/27/2009 Swine Flu

For a while there a couple of years ago, “bird flu” was in the news just about every day.  Frankly, there may still be occasion to worry again about bird flu down the road.  But for now, it is the turn of “Swine flu”.

04/17/2009 The Lance Armstrong Effect

Hyperthermia – the deliberate increase in temperature of a part of the body or the whole body as a therapeutic measure – has been around for a while.  This article discusses how hyperthermia may be of relevance to CLL patients. 

04/15/2009 Susan Boyle

In the interest of full disclosure, this post has nothing to do with CLL.

04/12/2009 Enlarged spleen

One of the many complications of CLL is an enlarged spleen; the technical word for it is “splenomegaly”. If drug therapy is not sufficient, it may become necessary to remove the spleen surgically. I know, it sounds a terrible thing to do, but it is not as bad you think it is. And often this necessary surgery gives patients a new lease on life.

03/25/2009 When platelet counts start dropping

Platelets are necessary for proper clotting of blood.  People with decreased platelet counts can have uncontrolled bleeding. Conventional Rai staging takes patients to a scary Stage IV if they have sub-normal platelet counts. But there is much more to this story than just looking at one number on your CBC report!

03/22/2009 Richter’s Syndrome

Richter’s transformation is said to have occured when patients’ indolent CLL morphs into a much more aggressive B-cell lymphoma. Incidence of Richter’s appears to have been increasing over the past decade or so. Richter’s syndrome carries much worse prognosis than CLL and it is important for us to learn about it.

03/15/2009 Opinions of a physician – patient

“11qRick” is a user ID many of you have seen on this and other patient forums. Here is a guest article from this articulate CLL patient who is also a practicing physician. CLL is a confusing disease, I believe it helps to get different perspectives on it.

03/14/2009 It will be nice to meet some of you

 I am looking forward to seeing some of you face-to-face for the first time. I will be one of the speakers at the Second Trends in Treating CLL Conference, April 24-26 at Niagara Falls, Ontario, Canada.

03/12/2009 Rituxan in the news – again

Recently we discussed the potential for JC virus reactivation in immune compromised patients treated with Rituxan.  This review discusses a very recent “Blood” article that suggests we may have seen only the tip of the iceberg, viral reactivation and deadly PML may have more relevance for us than we thought.

03/09/2009 A clinical trial perfect for our times

Here is a terrific ‘soup-to-nuts’ clinical trial conducted by the Nation Cancer Institute that I can recommend without any reservations.  If you have CLL/SLL or even MBL and have not yet been treated, you should check this one out.

02/21/2009 Fatal Viral Reactivation in the News

Recently three patients taking an immunosuppressive monoclonal antibody “Raptiva” for psoriasis died due to progressive multifocal leukoencephalopathy (PML), an infection of the brain associated with reactivation of the JC virus.  Did you know Rituxan too was cited for PML in a small percentage of patients taking it for arthritis?

02/18/2009 How to make an effective roach killer

Killing roaches is not all that hard, if you are willing to ‘go postal’  and nuke them. Putting it into CLL terms, killing CLL cells at the expense of massive damage to the patient’s body is easy but not a very smart approach. How does one go about killing CLL cells without harming the body?  Here is how…

02/14/2009 MBL Detection Does Not Mean CLL Down the Road

A very recent article in the prestigious New England Journal of Medicine reports that patients with CLL had tell-tale signs of the disease in their blood years earlier. What are the implications of this research for our patient community?

02/09/2009 CLL Complications – an expert overview

I am pleased to bring to your attention a very nice and useful overview of the many complicatins faced by CLL patients.  This one is worth reading and filing away in your CLL folder.

01/31/2009 Life after FCR

FCR is a very powerful chemo-immunotherapy combination that yields high percentage of “CR” (complete responses).  But it has become clear that majority of patients will relapse, sooner or later.  How do “salvage” therapy options stack up for patients relapsing after FCR remission?

01/28/2009 A precious source of stem cells

Stem cell transplants using umbilical cord blood as the source of stem cells can make the difference between life and death.  Many CLL patients cannot find suitably matched adult donors.  For these folks cord blood is a precious resource.

01/24/2009 Protecting Against Tumor Lysis Syndrome

“Tumor lysis syndrome” (TLS) is a potentially life-threatening complication.  Besides staying well hydrated, the only drug known to protect against was allopurinol.  Now a new drug “rasburicase” has made its debut. The good news is that rasburicase seems to be more effective, with fewer adverse effects.

01/17/2009 Three Important Blood Tests

Reading lab reports is not easy if you are doing it for the first time. Way too much jargon and no one around to help you sort it all out, get a handle on what it means to you as the patient.  Well, here is my attempt at explaining in plain English three important lab tests: flow cytometry, pcr testing and FISH.

01/10/2009 Coping with Grief

We each grieve in our own way.  Coping with CLL is also learning how to cope with grief – grief at loss of robust good health once taken for granted, loss of unlimited time and wide open possibilities, and for some of us, the ultimate loss of a special some one that is / was our compass in this world. Here is one CLL spouse’s experience coping with grief.

01/07/2009 To Wait, or Not to Wait

Watch & Wait is the standard approach recommended to newly diagnosed CLL patients.  It is an approach that can drive patients with type A personalities crazy.  How long should we wait?  We know we should not jump the gun, but is there such a thing as waiting too long?

01/04/2009 PCR versus FCR

Which of the chemo-immunotherapy combinations out there today is the undisputed “gold standard” for chemo-naïve CLL patients? A recent large scale, double arm study comparing PCR versus FCR reports surprising (and somewhat disappointing) results.

01/01/2009 Does Humax-CD20 Work?

Humax-CD20 is the next generation Rituxan competitor that has been in clinical trials for several years. We review crucial results that will determine whether this new monoclonal will get FDA approval in the near future.