This last month the U.S. House of Representatives passed the National Pain Care Policy Act of 2008 (HR 2994). One aspect is that this legislation authorizes an Institute of Medicine Conference on Pain, with one purpose being an increased awareness of pain as a major health issue in the United States. Additionally it allows that a Pain Consortium be created at the National Institutes of Health, so that more government attention and resources are given to the issue of pain.

Blood cancer patients can appreciate the efforts behind this act. For some patients pain can be a part of the journey, either because of the cancer itself or the treatment for it. Here are a few important reminders if you or someone you know is experiencing pain:

• Pain can be managed, and it should not be ignored.
• When you first start to experience pain, make sure you talk to your doctor now instead of waiting; early treatment can be more effective than when it is more severe.
• Discuss how your pain treatment is working for you with your doctor. Communication is key in making sure that you’re receiving the most effective treatment for your pain.
• Keep track of what makes your pain feel better or worse over several days or weeks in a diary or notebook, and bring it with you when you go to the doctor. Knowing the history of your pain can help your doctor better manage your pain. Using a daily pain diary or pain notebook, such as the American Pain Foundation’s TARGET Chronic Pain Notebook to track your pain over several days or weeks may help you identify what makes it better or worse, whether certain medications or non-drug therapies are effective in controlling your pain, as well as how your pain episodes impact your daily activities and emotional well-being.

This time of year we all seem to have so much more to do. Why not plan some things just for you? If you have myeloma or know someone who does, check out our new fall program at The Leukemia & Lymphoma Society (LLS). We also have several local events (Chapter Education Programs) about all types of blood cancers going on throughout the year. Included below are some offerings you may want consider in the coming weeks and months.

National Education Programs

October 15, 2008 - Understanding Myeloma: From Diagnosis Through Treatment. Register now for this telephone education program which will feature Dr. Asher A. Chanan-Khan. Participants will have a chance to ask Dr. Chanan-Khan questions during this hour and a half program.

Chapter Education Programs

Contact your local chapter about the availability of the following programs in your area:

• Welcome Back: Facilitating the School Experience for Childhood Cancer Survivors - Note that parents are also welcome at this event.
• Getting the Best Cancer Care at Age 55 and Older
• Milestones in Myeloma Therapy: An Overview for Patients and Caregivers
• The Road to Discovery: Emerging Therapies in Blood Cancers

• Family Support Groups - These are regularly scheduled meetings that bring together patients, families and friends.
• First Connection - Be matched with someone who has been through a similar cancer experience. Volunteers are also welcome to join this program.
• Chat Sessions - Every Monday and Wednesday NHL patients are welcome to come online and chat about their cancer experience.

Each year The Leukemia & Lymphoma Society (LLS) awards research grants through the Career Development Program (CDP) to professionals who do important research related to cancer, including blood cancers. This research is critical in improving cancer treatment, and potentially in cancer prevention.

If you are a researcher and would like LLS to fund your research, visit our CDP webpage where you can learn more about what we award, as well as details on what we need from you.

Here are a few details:

• Your letter of intent (required) is due by 3:00pm ET on September 15
• Full applications are due by 3:00pm ET on October 1.
• We will use proposalCentral for both the letter of intent and full application.

Exciting news! On August 7, 2008 The Leukemia & Lymphoma Society (LLS) announced the new TrialCheck® service which was launched collaboratively with the Coalition of Cancer Cooperative Groups.

This is great for a couple of reasons.

First, we support clinical trials as being one of the most viable treatment options for blood cancer patients. Clinical trials have gotten a bad rap, but the truth is that participation in research studies provides patients with access to treatment that is at least as high quality as standard care. Many patients who are involved in clinical trials also say they are glad to have the opportunity to help other cancer patients.

Second, we're doing this because we're interested in making it as easy as possible to find cancer clinical trials near you. Clinical trials aren’t for everyone, but if you are interested in exploring this option it’s literally just a few keystrokes and clicks of the mouse to get to the information you need.

So how does it work?

Once you are on the TrialCheck® website, you will be prompted to fill out a short questionnaire. This will tell the system what clinical trials to display for you in the final search results.

Your results will be displayed after you click the “Show Results” button. If you choose to enter your zip code, the clinical trials that are closest to that zip code will display first, making it easy to find convenient options if distance is a concern for you.

You can also save your search results so you don't have to do the same search again; all you have to do is register. You can also email the results to others.

Not sure what a clinical trial is, or concerned it might not be for you? Visit our Clinical Trial Service webpage to learn more about the ins and outs of clinical trials.

Visit the TrialCheck® website today to find a clinical trial near you.

Have you participated in a clinical trial before? Is it something you would do again if you had to do it all over?

The following is from our Chief Medical Officer, Barton Kamen, M.D., Ph.D.

Cancer … What a frightening word for anyone to hear, especially a parent! There are about 10,000 new cases of cancer in children under age 15 in the United States each year.. This is less then 1% of all cancers diagnosed annually in our country. Even so, that is not a consolation for you as a parent because no child is a statistic. In the more than 30 years that I have been a pediatric oncologist great progress has been made in treating children. In fact, the majority of children can be cured and today some treatment plans are designed to minimize treatment, hopefully without decreasing the cure rate. The goal is to eliminate or at least minimize the long term or late effects of treatment.

When we say cancer, we really mean CANCERS─plural. Unlike adults, in whom the common cancers are of breast, colon, lung and prostate, childhood cancers are predominantly two related diseases, leukemia and lymphoma, followed by brain tumors. In fact approximately 40% of all pediatric cancers are blood and related diseases, and about 20% are brain tumors.

Much of the progress in treating children with cancer is at least in part due to the fact that the pediatric oncology specialists around the world have worked together in cooperative groups so that large clinical trials could be done. Since, fortunately, the total number of patients is relatively small, this cooperation has allowed information about the diseases and the treatments to be collected and then used to formulate better treatment plans.

The majority of pediatric patients in this country are treated in centers that have established teams of professionals: physicians (including hematologists, oncologists, radiotherapists and surgeons), nurses, social workers, psychologists, child life specialists and teachers. This is to insure the best care for the child and family, which means that we are not simply treating a disease. I have always made a point with students and residents that we treat people not diseases, and in our case, we treat children. That means we also have to provide support and guidance to siblings and parents.

Yes, cancer is a horrific, scary word to hear, but I am glad it is 2008 and not decades earlier, when I started. No matter what type of cancer you or your child have─whether it is a disease with an outstanding record of successful treatment, or one of the more difficult to treat types of cancer─I suggest that you have your treatment at a center in which there is a whole team available to assist you on the journey. And that this team is associated with an even larger team. For difficult to treat cancers, there is often a clinical trial that is an option for you or your child. My advice to any parent, even though I do not like to be called a healthcare provider and do not consider my patients to be customers, is: You should be your child’s best advocate and as a consumer, ask questions and get as much information as you want. There is no such question as a bad question. And usually, for most questions about serious illness, your imagination about what is happening is often worse then the reality.

Learn more about childhood leukemia and lymphoma.

On April 29, the band Monty Are I performed at Davisville Middle School in Rhode Island as a reward to the students for raising $4,665.89 for The Leukemia & Lymphoma Society’s Pennies for Patients program. This was $500 more than what they had raised the previous year, and were motivated to increase their fundraising efforts after hearing a talk given by Joyce Muir, mother to two of the band members, Ryan and Justin.

What Joyce told the school about was Ryan’s fight with acute lymphoblastic leukemia (ALL). After being diagnosed at 16 years of age, he underwent 2 ½ years of treatment. As he reflects on having cancer he says it was the hardest time of his life, yet it hasn’t been until more recently that he has been able to understand what he went through and the impact it has had on his life.

"Some things I wish I had taken more time to understand is that it’s ok to be sad and it’s ok to get angry cause this is an awful experience, but you need to take that energy and then turn it into something positive and don’t be afraid to express it to other people.”

Today Ryan is in remission, and he says that he hasn’t really shared this part of his life with his fans yet. He feels that now is the time to let people know what he has gone through so he can positively impact others going through similar experiences.

Watch Monty Are I's performance at Davisville Middle School on YouTube, and learn more about Monty Are I at their website, www.montyarei.com.

Learn more about Pennies for Patients, as well as other school programs on the School and Youth website.

Learn more about ALL by downloading these free resources (PDF) or ordering them through the Free Materials section of our website:

• Understanding Leukemia or download the Spanish-language version, La leucemia
• Acute Lymphocytic Leukemia: A Guide for Patients and Caregivers
• Acute Lymphocytic Leukemia or download the Spanish-language version, Leucemia linfocítica aguda

We have many resources in English, but in case you didn’t know we have resources that can be of help to people whose native language might not be English.

Free Materials
Available in Spanish (Español) and French (Français)

Free materials are available in Spanish (Español) - you can download a PDF or order a printed copy - and French (Français), but you can download a PDF only. When you are on the www.LLS.org website look in the left-hand column and click on Patient Services, then Free Materials, then you will see Spanish Publications (Publicaciones españolas) and French Publications (Editions françaises).



Financial Assistance
Available in Spanish (Español)

Need financial assistance? Spanish-language speakers (las personas que hablan español) can download our Patient Financial Aid application in Spanish (Solicitud de ayuda económica para pacientes) as a PDF. There is also a handy step-by-step guide in Spanish (Cómo solicitar la inscripción en el programa de ayuda económica para pacientes) to help you fill out the application.



Free Newsletters
Available in Spanish (Español)

Visit the following pages in our National Education Programs section for access to our downloadable Spanish newsletters (boletines españoles) available as PDFs.

• Lymphoma News page for NHL Descubrimiento Horizontes
• CML News Links page for Enlaces con información sobre LMC
• Myeloma News page for Noticias sobre el mieloma

The following is an excerpt from the May Research Commentary written by our Vice President of Research, Deborah Banker, Ph.D. You can read her future commentaries by subscribing to our monthly eNewsletters.

The Evolving Big Picture in Cancer Research

I recently attended the 2008 meeting of the American Association for Cancer Research (AACR), where more than 14,000 of the world's top cancer investigators gathered in San Diego, CA to share groundbreaking new findings and ideas.

Many of the research themes that I have brought to your attention in previous commentaries were discussed in the opening plenary session, presented by eight distinguished biomedical researchers.

Carol W. Greider, Ph.D., The Johns Hopkins University, talked about the ends of chromosomes called "telomeres." These protective caps normally get shorter each time a cell divides until they become so short that chromosomes deteriorate and aged cells die. Cancers can occur when the telomerase enzyme that elongates telomeres in young, healthy cells is reactivated in older cells, allowing these cells to divide beyond their normal lifespan. Dr. Greider discussed work showing that short telomeres limit tumor growth, suggesting that telomerase inhibitors might be useful targeted cancer treatments. Continued research in this area may lead to new treatments for blood cancer patients and for patients diagnosed with aplastic anemia and myelodysplastic syndrome.

Brian Druker, M.D., Oregon Health & Science University, finished this exciting session by talking about how to accelerate the pace of cancer drug development. It was Dr. Druker who developed the highly effective and safe targeted drug Gleevec®, for patients newly diagnosed with chronic myelogenous leukemia (CML). LLS was a primary funder of this advance which was built on knowledge of the kinase molecule that causes CML. We now know that other kinases are involved in a wide range of cancers, including blood cancers beyond CML.

Using Gleevec as a paradigm, Dr. Druker talked about target identification (finding the cancer-causing abnormalities) and clinical trials as the two points at which drug development could be streamlined. He and his colleagues are using batteries of gene-inactivating miRNAs to learn which kinase(s) is most involved in particular cancer cases; they have already had some success predicting which kinase-targeting drug will work for an individual leukemia patient. Dr. Druker said that this individualized target information will also allow clinical trials to be done in the "right" patients so that effective drugs can be more readily validated.

LLS is funding research in the laboratories of Drs. Greider and Druker. You can find more details regarding the blood cancer research advances presented at this year's AACR meeting by visiting their Web site and by staying tuned right here.

-Deborah Banker, Ph.D.