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If you have recently been diagnosed with CLL, you probably have questions. 


Information about CLL


What we are doing to defeat CLL


List of CLL specialists around the world

(Provided by ACOR) 



Immunosuppression and Skin Cancer

Watch these videos for an overview of skin cancer and different types of skin cancer


Sunscreen 101

Sun Safety Tips from the Environmental Working Group (EWG)

Sunscreen Q&A with the FDA
Buying new sunscreen? There's an app for that!




Bill and Lindsey Callahan
Bill and Lindsey Callahan after running the Vermont City Marathon

We want to give a special shout-out to Team Chief, a.k.a. Bill and Lindsey Callahan, who completed the Vermont City Marathon on May 27, 2012. They were not just running for their health. They ran to honor the late Chief Robert Callahan who unfortunately succumbed to CLL just over a year ago. Soon after the Chief's passing, Bill knew he wanted to do something to honor his father and to spread awareness of the disease. He set up a Wish via Causes and started raising money for CLL Global and spreading the word. His original goal was set at $750, but was easily surpassed. So he set a new goal of $1,200 and, well, he surpassed that too.


Thanks for the support and


Go Team Chief!


From Molecule to Medicine
From Molecule to Medicine
Watch this video to learn how an idea becomes a treatment.


Research Momentum
Click here to read the latest issue of the CLL Research Momentum (2012- Issue 1).

This issue features an interview with Dr. Stephan Stilgenbauer, a CLL geneticist from Germany. We could not include the whole interview in the newsletter, so we have posted an extended version on our website. Click here  to read the extended interview.
Dr. Stephan Stilgenbauer
Dr. Stephan Stilgenbauer



 Click on the links below to learn more about new therapies and how they might affect the future of CLL treatment.  

targeting cancer 


 Targeting ROR1 



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July 2012 



Sun protection is important during the summer months, but CLL patients need to be diligent year-round. Read more below. Also in this issue, we bring you highlights from the summer Alliance meeting and discuss Phase IV clinical trials.


Skin Cancer as a Second Malignancy


Approximately 15% of CLL patients will develop skin cancer as a secondary malignancy. CLL negatively affects the immune system, and based on some evidence, is associated with deficient DNA repair. This DNA damage may lead to a higher susceptibility of developing skin cancer. The skin cancer is often more aggressive in CLL patients compared with people

Image provided by webmd.com 

who have never had cancer, and CLL patients are at a higher

risk of developing recurrent skin cancer. Patients who need treatment for their CLL are at an even greater risk because their immune system is further compromised. Hopefully this paragraph has not increased your anxiety. Below we discuss what you can do to reduce your risk.


PROTECT YOUR SKIN. Avoiding the sun is ideal, but you cannot hide inside all of the time. Protective clothing is the best option for when you play outdoors. Sunscreen is important. Be smart about which one you choose and know what you are being protected from and what you are not. Wide brimmed hats are fashionable and functional. Sit in the shade when possible, and of course, avoid tanning and tanning booths.  


BE ON THE LOOKOUT. Check for changes to your skin regularly. Here is a brief overview of what you should be looking for.


Squamous cell carcinoma is the most frequently reported skin cancer in CLL patients. Squamous cell can metastasize to other areas of the body. So if you see early signs, it is important to let your doctor know right away. Signs: rough, scaly patches that look like warts or open sores with a raised border.


Basal cell carcinoma is the most common skin cancer in general. It is commonly known as a rodent ulcer which burrows into the skin but does not spread. There are several different signs: A scar-like or irritated patch of skin that is white, yellow or reddish; a pink colored growth; a shiny, mole-like growth; an open sore that does not heal.


Merkel-cell carcinoma is very rare, as there are only 1,500 new cases in the US each year (less than 1% of the population). It is aggressive and tends to occur most frequently in people that are immune deficient. This means that there is an increased presence in the CLL population, although the odds are still very low. Signs: firm, reddish-pink nodule.


Melanoma is the most dangerous, but if it is detected early enough it is almost always curable. The problem is that melanoma often starts off looking like a regular mole. Know your moles and the ABCDEs of melanoma (as adapted from skincancer.org).   


A is for Asymmetry. Noncancerous moles are usually symmetrical.


B is for Border. The border of moles should be clearly defined and even.


C is for Color. Moles with more than one color or an odd color should be looked at by a professional.


D is for Diameter. Larger moles, greater than 6 millimeters or inch are a warning sign.


E is for Evolution. Changes in size, shape, color, texture indicate something may be brewing.skin cells


TAKE CARE OF YOUR BODY. The immune system of CLL patients is already defunct. Keep yourself as healthy as possible by eating right and staying active. You will look and feel better too!


TALK TO YOUR DOCTOR. Keep your physician apprised of any changes or developments with your skin. Diligence is a good thing.



Phase IV Clinical Trials


New drugs usually require three phases of testing before receiving Food and Drug Administration (FDA) approval, or approval from a comparable international agency. However, the testing of new drugs does not end at approval. Post-marketing or Phase IV studies are the first opportunity to test a drug in the "real world" as opposed to the strict clinical trial setting.


Treatments tested in Phase I through Phase III trials are given to very specific groups of patients who are closely monitored and whose medical history and conditions are known and documented. Also, the number of participants in clinical trials is small compared to the general population. After FDA approval, new products are available to a broader population, and there is always a potential for different side effects to emerge or unknown long-term effects to surface. Phase IV studies provide an opportunity to optimize the use of a new drug.


Once a product is FDA stampapproved and marketed it is continuously monitored as long as it is available to the public. Often this is done via surveillance only. Information regarding serious reactions, adverse events and product inefficiencies is reported to the FDA. This can be done voluntarily by consumers and physicians through the FDA's MedWatch Program.


Physicians and pharmaceutical companies are sometimes required to conduct a type of Phase IV trial known as Post- Marketing Surveillance. The FDA can mandate Phase IV studies in order to provide accelerated approval for new drugs. The accelerated approval process can be used for products which treat life-threatening illnesses and show significant benefit over existing therapies. This process allows drugs to come to market sooner based on less complete clinical data. The Phase IV studies provide the FDA a more complete picture of the efficacy of the drug.


Whether a product requires mandatory Post-Marketing Surveillance or is part of a voluntary Phase IV study, any and all significant events reported to the FDA are compiled into a database. Newly identified risks can be used to update drug labels, to enact new restrictions of a product or, in rare instances, to remove a product from the market.


Clinical trials are the only real way to test and to understand new drugs. It may seem like it takes a considerable amount of time for a drug to go through the first three phases of the clinical trial process. However, the monitoring of the safety of new products is a continual process. FDA scrutiny does not end at approval. The process continues through Phase IV trials and Post-Marketing Surveillance to ensure the public has the most up to date information on drug products in order to use them optimally.



Summer Alliance Meeting 


Committed CLL experts recently gathered in a quiet country environment to discuss their research. The semiannual meeting of the Alliance was held in the Netherlands last month following the annual EuropeanNetherlands hotel Hematology Association meeting. The Alliance consists of researchers from the US and Europe with a concordance for CLL research.


A major aspect of the Alliance is to keep things fresh. Thoughts and opinions from Alliance members are always encouraged, and for this meeting, there was an overwhelming request for in-depth discussion on the biology of the B-cell receptor. While new drugs like CAL-101 and ibrutinib (formerly PCI-32765) have increased interest on the B-cell receptor (BCR) pathway, scientists have been working in this area for many years. Dr. Freda Stevenson from the University of Southampton, UK, was invited to share her expertise in the area of B-cell biology and the BCR. Her insights contributed to the Alliance members' discussion on the mechanisms of BCR and its exploitation for therapeutic purposes.


This Alliance session was coupled with discussion of the need for better options for patients with loss of part of chromosome 17p or mutation of the p53 gene. This is one of the most challenging genetic abnormalities related to CLL and has been a major topic of discussion at many Alliance meetings. The intention going forward from this meeting is to put a clinical trial in place specifically designed for patients with the 17p/p53 abnormality or mutation. A protocol will hopefully be in place within several months.


Presently a treatment is considered successful when very low levels or no CLL is detectible in a patient. The question now is how to offer long term control or a cure for everyone. One approach researchers are excited about is chimeric antigen receptors (CARs). CARs teach immune cells to recognize and attack specific targets found on CLL cells. (Learn more in the left sidebar.) Current molecular targets for CARs are CD19 and a gene called ROR1.


Professor Hakan Mellstedt (University of Karolinska) presented a range of possibilities to target ROR1. He referred to ROR1 as an Achilles heel of CLL. The options include a ROR1-specific CAR, monoclonal antibodies and small molecules which block the signaling pathway of ROR1.


The meeting spanned the course of two days and was full of thought provoking presentations - too many to discuss in one short article. Of course, there were updates on the tyrosine kinase inhibitors and lenalidomide, much discussion on CARs, and a significant amount of genetics data. We will share more in an upcoming issue of the CLL Research Momentum.


Thanks for joining us for another issue of Tidbits. Be happy and well.


CLL Global Research Foundation