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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.

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.

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.

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

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

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.

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?

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

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.

“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.

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

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.

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.

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.

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.

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.

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.

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.

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?

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.

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.

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.

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.

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?

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

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! 

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.

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.

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?

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.

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!

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.

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.

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.

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.

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.

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?

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.

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!

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.

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.

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 patient‘s ability to tolerate therapy:  treatment focused more on the patient and less on his disease.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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?

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.

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.

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.

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.

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.

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.

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?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?

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.

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.

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! 

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.

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.

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.

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.

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.

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?

On August 14^th 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.

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

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.

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.

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.

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.

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.

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.

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. 

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.

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.

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.

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.

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.

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?

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?

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..

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.

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.

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.

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.

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.

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?

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.

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.

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?

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.

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.

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.

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. 

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.

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

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.

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.

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.

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.

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!

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

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. 

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.

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.

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.

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.

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

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?

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.

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.

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.

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. 

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.

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.

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.

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

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!

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

The results of our Half-Time survey are in!

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

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.

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?

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.

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?

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.

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.

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.

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. 

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.

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

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.

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

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”.

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. 

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

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.

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!

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.

“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.

 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.

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.

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.

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?

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…

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?

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.

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?

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.

“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.

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.

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.

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?

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.

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.