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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.