The Leukemia & Lymphoma Society Blog

Unassuming Woman Turns Force to Be Reckoned With

communityreply@lls.org — Tue, 16 Mar 2010 19:03:41 GMT

Karrie Munkittrick was, in her own words, reserved and unassuming - an artist, wife and mother of two healthy daughters. Then a single event turned her into a one-woman army. Her enemy? Leukemia. Not just any leukemia, but leukemia that attacked her tiny, two-month old nephew, Austin. The entire, extended family pitched in to support Austin, doing whatever they could, and sometimes just being there with him and giving his parents breathing room and time to spend with his big brother, Hunter. But when she wasn't helping in that way, Karrie started thinking about ways to help find cures.

She found a way - Light The Night Walk. Her initial Walk reinforced her belief that Light The Night Walk was a great way to support LLS in the search for cures. The following year, Karrie became a team captain, getting people to join the "Austin's Warriors" Light The Night team. She explains that asking people to donate money would normally have been difficult for her; but knowing that the money raised would help find cures for leukemia she became a dynamic fundraiser. As a team captain, she raised funds herself and acted as a rallying force, urging on her team, which raised more than $6,300 in 2009!

This year, she found another way to help. As her husband Michael explains, "She's been a light to so many people and it has changed her. Now she wants to go where few people would ever consider going." Karrie is very pretty, both inside and out, and has long, beautiful hair. She decided to shave her head as a participant in LLS's Totally Baldacious campaign, in which people raise funds by shaving their heads to show support and solidarity for patients who lose their hair during cancer treatments.

If you or a loved one has been diagnosed with a blood cancer, LLS is here for you:
To speak to an information specialist, call (800) 955-4572, chat online at www.lls.org, or email infocenter@LLS.org.
Find peer support on the Blood Cancer Discussion Boards.
Support the fight against blood cancers with a gift to LLS.

Let’s Speak With One Voice to Increase Research Funding

communityreply@lls.org — Wed, 24 Feb 2010 14:48:03 GMT

Thanks to cancer research efforts to date, 60 percent of all cancer deaths are now preventable. But today cancer still costs our nation 560,000 in lives lost and more than $228 billion in healthcare costs a year. And for many types of cancer, there are still no effective treatments.

Clearly, reducing cancer research funding for prevention and effective, less toxic treatments is unthinkable. At The Leukemia & Lymphoma Society (LLS), cancer research has been the top priority since our founding in 1949. That’s why LLS is a long-standing a member of One Voice Against Cancer (OVAC).

OVAC is a coalition of national nonprofit organizations representing millions of people in the United States who have this message for Congress and the White House: Increase cancer research funding NOW. We all know there is strength in numbers. Won’t you add your voice?

Join LLS and OVAC in making sure your elected officials hear and heed this critical message. What are we asking?

We are asking Congress to increase the 2011 budgets of the National Institutes of Health’s (NIH) by $4.2 billion (13.5 percent) and the National Cancer Institute’s (NCI) by $691 million (13.5 percent).

And we are asking you to advocate with us. Please visit LLS’s Legislative Action Center and urge your representatives to increase cancer research funding by sending the drafted email.

LLS and the other OVAC members have developed an ad that shows how more money for cancer research will benefit US health, not only physically but also economically. The ad is appearing in Capital area newspapers this week. You can download the ad from LLS’s website, then email or print and mail it to your representative’s office. You use LLS’s Legislative Search tool to find the office address.

Let’s speak with one voice now and give our legislators the clear message: Increase cancer research funding and save lives.

Should patients participate in disease registries?

communityreply@lls.org — Tue, 09 Feb 2010 20:31:54 GMT

The Leukemia & Lymphoma Society (LLS) advocates for patients to participate in life-saving research in clinical trials. Clinical trials provide important data about carefully selected patient groups under controlled conditions. Another important way that patients can help the medical community to unlock causes, familial patterns and treatment trends is to take part in disease registries. These are comprehensive databases of disease and treatment information, for specific time periods and populations.

The databases are often used to analyze and interpret data about a common diagnosis. For example, when a person who has chronic lymphocytic leukemia (CLL) provides his or her health information to a disease registry, comparisons can be made with other CLL patients. The intent might be to discover genetic patterns, learn about the effectiveness of specific treatments or track the ages at which CLL patients are diagnosed.  Before you agree to participate in a disease registry, you will receive written assurance about your privacy and other rights. Patient information is usually encoded so that your identity is concealed and your confidentiality is ensured. You can decide to stop participating at any time by notifying the disease registry.

LLS encourages people who have a blood cancer diagnosis to consider taking part in a disease registry. Since blood cancers are not common diseases, registries need to enroll as many patients as possible. It’s also important that disease registries include patients from all regions of the U.S. and from all walks of life. You and others living with a blood cancer can make a difference that will help the medical community better understand and treat blood cancers, giving patients hope now and in the future.

Learn more about disease registries, or find a disease registry with which you can share your health history. Rather talk with someone about disease registries on the phone? Give us a call at 1-800-955-4572.

Inspirational childhood leukemia patient dies

communityreply@lls.org — Wed, 03 Feb 2010 14:56:27 GMT

We at The Leukemia & Lymphoma Society (LLS) were saddened to learn that 6-year-old Jasmina Anema lost her battle with leukemia last week. She had been diagnosed with a rare and aggressive form of cancer called natural killer (NK) cell leukemia. This disease is difficult to treat. NK cell leukemia is usually treated with high-dose chemotherapy and a stem cell transplant using donor stem cells.   Jasmina’s need for a stem cell transplant donor with a tissue type that matched her own stem cells resulted in a fervent public campaign. It included a plea from Rihanna, one of Jasmina’s favorite celebrities. She did receive a transplant, and although it appeared to be successful, her leukemia returned. While she was well enough, Jasmina traveled to Washington, D.C. to visit President Barack Obama in the White House. You can read more about her courageous journey at the New York Daily News website.

Jasmina’s story reminds us of the importance of finding cures for all children who have leukemia. LLS is proud to support the critical research conducted on a daily basis so that one day every patient diagnosed with a blood cancer can expect to be cured.

This research depends heavily upon clinical trials, which requires the participation of patients who can help researchers as they work to bring breakthrough therapies to the public. Patients who are considering participating in clinical trials should be confident that they are receiving safe and high quality treatment and are helping to pave the way for future cancer patients to receive life-saving drugs and therapies. If you have been diagnosed with leukemia, lymphoma, myeloma or another blood cancer we encourage you to visit TrialCheck® to see if there is a clinical trial in which you can participate.

Have questions about NK cell leukemia, stem cell transplant or clinical trials? Call 1-800-955-4572 and our staff will be happy to talk with you.

Important Update for Myeloma and Waldenstrom Macroglobulinemia Patients

peter.pugliese@lls.org — Mon, 01 Feb 2010 15:38:16 GMT

Effective February 1, 2010, eligible myeloma and Waldenström macroglobulinemia patients will now be able to receive up to $10,000 in support to help offset the costs of prescription drug co-pays and other insurance related expenses. This increase is retroactive for expenses incurred from July 1, 2009 through June 30, 2010 and is available to new and currently approved patients.

Patients, caregivers and healthcare professionals may submit patient applications easily online through the established link on the Co-Pay webpage www.lls.org/copay. Applications can also be submitted on the toll-free line with a Co-Pay specialist. Eligibility will be determined by medical and financial need.

For more information on this and other LLS Co-Pay Assistance Program disease funds, please call 877-557-2672 or visit www.lls.org/copay.

Thank You for Your Support of LLS’s Mission

communityreply@lls.org — Thu, 28 Jan 2010 20:55:35 GMT

Dear Friend,

In December we told you about a challenge grant that The Leukemia & Lymphoma Society (LLS) received to support an important research focus – to reduce the long-term and late effects of some of today’s intensive treatments. This work is so very important because by better understanding the biology of these effects, scientists can work to better manage these conditions or predict and prevent them. For example, by identifying biological risk factors for heart damage that some standard chemotherapy agents can cause, researchers may be able to develop new treatments to prevent such damage.

Your response to the challenge grant was enthusiastic and generous – the very sort of giving spirit that so many have demonstrated in responding to the recent earthquake devastation in Haiti.

Thank you for your incredible support! You are not just making a donation. You are making a difference for people touched by blood cancers.

Best of health,

John E. Walter
President & CEO

Find the support you need online

communityreply@lls.org — Tue, 26 Jan 2010 21:26:30 GMT

Sometimes the most important thing is to know that you’re not alone. The overwhelming burden of receiving a diagnosis and undergoing treatment can be made easier when a patient can connect to other people who have similar feelings and experiences to share.

Carolyn is one patient who found this to be true. She had always been healthy and no one in her family had ever been diagnosed with cancer, so getting the news that she had chronic lymphocytic leukemia (CLL) was a shock. Trying to educate herself about CLL was daunting because there was so much new information to take in all at once. Undergoing treatment was draining and isolating, too; Carolyn just wasn’t able to go out and connect with other people.

One day, Carolyn was checking her emails and saw an article about online support groups in an eNewsletter from The Leukemia & Lymphoma Society (LLS). She felt that this was exactly what she needed and as soon as she joined a group she found empathetic friends.

“Suddenly dealing with the diagnosis of cancer and chemotherapy, being isolated in my fears and physical fight, and dealing with a huge medical system was overwhelming. I could not go to public places, I did not feel like going out, but online, I could connect to a world of people who knew exactly how I felt and who cared so much. It strengthened me as well, in that I could be supportive of others.”

The online support group that Carolyn has been involved with is provided through a partnership between LLS and The Wellness Community. The groups are private, password-protected and are led by professionals. There is a weekly lymphoma group held on Mondays at 8:00 PM ET, and a weekly general blood cancer group that meets on Tuesdays at 8:00 PM ET. And there are other groups that deal with more general topics, including bereavement, caregiving and living with multiple diagnoses.

To learn more or to join for free, visit http://lls.thewellnesscommunity.org.

LLS-funded Researcher Publishes Breakthrough Article on AML

communityreply@lls.org — Wed, 13 Jan 2010 15:23:56 GMT

The Leukemia & Lymphoma Society (LLS) is always excited to learn about the new discoveries our funded researchers are making. Ari Melnick, M.D., of Cornell Weill Medical College, has been working on ways to test thousands of genes at the same time for a recently recognized type of abnormality called methylation. He has been able to apply these state-of-the-art tests towards understanding the causes and better predicting the treatment-sensitivity of leukemias and lymphomas. Dr. Melnick is the senior author of a report published this month in the prestigious scientific journal, Cancer Cell and highlighted in the research commentaries in January issues of the LLS e-newsletters. Here is the summary of that article, entitled “DNA Methylation Signatures Identify Biologically Distinct Subtypes in Acute Myeloid Leukemia”:

We hypothesized that DNA methylation distributes into specific patterns in cancer cells, which reflect critical biological differences. We therefore examined the methylation profiles of 344 patients with acute myeloid leukemia (AML). Clustering of these patients by methylation data segregated patients into 16 groups. Five of these groups defined new AML subtypes that shared no other known feature. In addition, DNA methylation profiles segregated patients with CEBPA aberrations from other subtypes of leukemia, defined four epigenetically distinct forms of AML with NPM1 mutations, and showed that established AML1-ETO, CBFb-MYH11, and PML-RARA leukemia entities are associated with specific methylation profiles. We report a 15-gene methylation classifier predictive of overall survival in an independent patient cohort (p < 0.001, adjusted for known covariates).

Quest Diagnostics’ sponsorship and fundraising work on behalf of LLS has enabled us to support Dr. Melnick’s breakthrough work. We appreciate the time and energy their employees have given to help make this important research happen.

Learn more about this and other research by reading the January 2010 Commentary, written by Deborah Banker, Vice President, Research Communications, and learn more about acute myelogenous leukemia (also known as acute myeloid leukemia).

Have questions about blood cancer or LLS-funded research? Talk to one of our information specialists at 1-800-955-4572.

Your donation dollars at work

communityreply@lls.org — Tue, 05 Jan 2010 15:37:22 GMT

The following shares some highlights from last month’s commentary written by Deborah Banker, Vice President, Research Communications. She recently returned from the American Society of Hematology (ASH) Annual Meeting where she heard presentations by researchers who are funded by The Leukemia & Lymphoma Society (LLS). The information she brings us from ASH is a reminder that your donation dollars can and do go far in the fight against blood cancers. Start 2010 with a donation to LLS so that patients can have a brighter future.

I just got back from this year's meeting of the American Society of Hematology. As always, there was lots of research progress reported and researchers funded by The Leukemia & Lymphoma Society (LLS) were well-represented. It was an opportunity to learn more about the biology of various forms of lymphoma and about evolving treatments for patients with Hodgkin and non-Hodgkin lymphomas (NHL).

LLS-funded Steven Bernstein, M.D., of the University of Rochester discussed the transformation of some cases of relatively indolent follicular lymphoma into aggressive cancers, including diffuse large B-cell lymphoma (DLBCL) and Burkitt lymphoma. It seems that transformation risk may be increased by treatments with high doses of alkylator or purine analog drugs. Rituxan® apparently does not affect the risk of transformation and importantly the Rituxan-containing combination therapy known as R-CHOP seems to be effective for many patients even after transformation.
In a subsequent session. LLS-funded Jonathan Friedberg, M.D., of University of Rochester was the senior author of a report regarding a Phase 3 clinical trial that compared three possible treatments for patients with Mantle Cell Lymphoma (MCL). This was a multi-center clinical study that also involved LLS-funded Andrew Zelenetz, M.D., at the Memorial Sloan Kettering Cancer Center.
LLS-funded Irene Ghobrial, M.D. of the Dana-Farber Cancer Institute presented results of a Phase 2 trial testing one such novel drug for patients with Waldenström macroglobulinemia (WM), a rare blood cancer that has features in common with lymphoma and myeloma. She and her Dana Farber and Mayo Clinic colleagues tested an oral drug that inhibits the mTOR molecule which controls cell proliferation and survival and is involved in many cancers including lymphomas.

Read Dr. Banker's full December Commentary on www.LLS.org.

Double the impact of your year-end gift to fight blood cancers

todd.whitley@lls.org — Tue, 29 Dec 2009 20:42:07 GMT

Matching Gift Offer ends December 31st

You still have time to make your gift go twice as far in the effort to help patients live better, longer lives.

Please remember that an anonymous friend of LLS will match your gift, dollar for dollar, up to $100,000 if made by December 31st. Act now and your donation of $25 will become $50, your gift of $50 will become $100.

Time is almost up! Don't miss this chance to make a gift that will have twice the impact. If we meet this matching challenge, today's patients will benefit sooner from treatments that let them live better, longer lives.

Please make your gift go twice as far by responding today.

Your gift can go twice as far

communityreply@lls.org — Wed, 16 Dec 2009 20:31:50 GMT

Dear Friend of LLS,

I write today with the good news that The Leukemia & Lymphoma Society (LLS) has received a research challenge grant.

An anonymous friend of LLS will match $100,000 in donations made by December 31st to support an important research focus—to reduce the long-term and late effects of some intensive cancer treatments.

Cures for some blood cancer patients have increased dramatically in past decades. But treatments that save lives often come with a cost. Too many cancer survivors experience long-term and late effects from their treatments. Some of these effects have an impact on quality of life. Others can be life threatening.

Research for cures for all blood cancer patients must continue. And patients also need therapies that are less harmful but at least as effective as the best therapies we have today. This matching challenge will help move us in that direction.

Please take advantage of this challenge and double the impact of your gift by December 31st. Your donation of $25 will become $50; your gift of $50 will become $100. Whatever you give will go twice as far. Please take advantage of this challenge.

Thank you again for your valued support.

Best of health,

John E. Walter
President & CEO

Take our Stupid Cancer survey

communityreply@lls.org — Tue, 15 Dec 2009 15:19:14 GMT

For young adults, life with and beyond cancer presents specific physical, emotional, social and financial burdens. The Leukemia & Lymphoma Society (LLS) and I'm Too Young For This! Cancer Foundation (i[2]y) want to better serve the needs of young adult cancer survivors.

LLS and i[2]y need feedback from cancer survivors who are between the ages of 18 and 39 for our Stupid Cancer Survey. This is an ongoing research study to help young adults affected by cancer. The goal is to learn more about the ways that they distinguish themselves from young adults who have not been affected by cancer.

If you are a young adult cancer survivor please take the survey now at http://survey.i2y.com. You’ll help us better serve young adult cancer survivors and young adults who are still battling cancer.

Thank you in advance for your help!

The initial results of this report are available upon request.

BTW, if you take this survey, you have a 1 in 8 chance of receiving a $50 iTunes Gift Card!

A Story of Hope and Persistence

communityreply@lls.org — Mon, 16 Nov 2009 17:40:54 GMT

John Haluck became part of the LLS family almost a decade ago. He is now a trustee of the Greater Sacramento Area chapter and is not only a survivor but is a huge supporter of LLS.

When I was diagnosed with chronic lymphocytic leukemia (CLL) in 2000, I was no stranger to leukemia, having lost a good friend to the disease. Still, going in for a routine physical and finding out I had an "incurable" form of cancer was a massive shock to both me and my family. I looked at my three kids and I wondered if I would be around to see any of them graduate from college or get married. It was the worst weekend of my life.

My doctor recommended a "watch and wait" approach, since my form of leukemia was chronic, not acute, and some people have lived twenty years with CLL.

However, my cancer progressed much faster than my hematologist could foresee. By 2004, he recommended that I start chemotherapy soon, as the cancerous lymphocytes were increasing in number and could cause a stroke. He told me that there was no hope for a cure and advised me against looking for a clinical trial.

By this time, I was volunteering with my local chapter of The Leukemia & Lymphoma Society, chairing and helping organize the annual Light The Night Walk. I also learned about a doctor who has been funded by LLS and does leading edge research in CLL - Michael Keating, MD, at the MD Anderson Cancer Center in Houston. I contacted him and heard back immediately - he would see me as soon as I was ready.

The morning after the Light The Night Walk, I boarded a Southwest flight for Houston. After a battery of tests, I waited to see Dr. Keating. In walked this big, burly man (a rugby player, no less) who grabbed my hand and then gave me a big bear-hug. To my surprise, he said, "John, I think that we have a very promising treatment for you!"

I called my wife, who flew in, and I started a clinical trial the next day of a new targeted drug, Rituxan®, which was developed with the help of funding from LLS. The rest is history. After four days of therapy, my white cell count had dropped to normal! A week later, the lumpy cancerous lymphocytes had disappeared from my lymph nodes. It was happening just as Dr. Keating had described.

Now I've had 53 months in complete remission. I feel a debt of gratitude to Dr. Keating and LLS, whose funding helped make Rituxan a reality. I have my life, and am able to enjoy it. And I have hope!

-- John Haluck

You can also listen to a short audio clip of John sharing his support of LLS.

If you've been diagnosed with a blood cancer, LLS is here for you:
To speak to an information specialist, call (800) 955-4572, chat online at www.lls.org, or email infocenter@LLS.org.
Find peer support on the Blood Cancer Discussion Boards.
Support the fight against blood cancers with a tax-deductibe year-end gift to LLS.

Basketball Legend Kareem Abdul-Jabar Diagnosed with CML

todd.whitley@lls.org — Thu, 12 Nov 2009 22:51:21 GMT

This week the public was shocked to learn that one of basketball’s most famous players had been diagnosed with early stage chronic myelogenous leukemia (CML). Kareem Abdul-Jabar, NBA hall of famer and a former player with the Los Angeles Lakers, was diagnosed with CML last December. Abdul-Jabar is known for being an intensely private person, but he decided recently to go public with the disease to shine a spotlight on CML. In an interview with CBS News (see: http://www.cbsnews.com/stories/2009/11/10/eveningnews/main5605532.shtml) he shared that his intention for sharing his diagnosis with the public was to give a message of hope and that he intends on continuing to live a normal life.

A key reason why he can live a normal life is because he takes daily oral medication for his CML. While he has not revealed what drug he is taking, most people diagnosed with CML are started on Gleevec®, a drug that was developed several years ago through LLS-funded research by Dr. Brian Druker (as you may recall, Dr. Druker and two colleagues were recently awarded the prestigious Lasker~DeBakey Clinical Medical Research Award for their work on Gleevec). Gleevec was a big breakthrough in treatment for CML, and now there are two other oral medications that are also approved to treat CML. Today many people who have early-stage CML are doing great -- thanks to staying in treatment -- and seeing their doctors regularly to make sure their medication and dosage are still the best choices for them.

What is CML?

There are four different types of leukemia, which means that receiving a leukemia diagnosis does not mean that every patient’s experience will be the same. Chronic myelogenous (or myeloid) leukemia is a slow-growing blood cancer that is more commonly diagnosed in adults, although some children do get CML. There are several different signs and symptoms of CML include a high white blood count, tiring more easily and having night sweats. However these signs and symptoms do not mean that a person has CML since they can be associated with other more common conditions. We always recommend that if you suspect that your health is not what it should be that you talk with your doctor. Learn more about CML on www.lls.org.

If you or someone you know has been diagnosed with CML and you are looking for information and support, you may access several of our free resources listed below.

Download or order any of the following free education materials

Chronic Myelogenous Leukemia (CML)

The CML Guide: Information for Patients and Caregivers

My CML Tracker (An online tool)

Find Support from LLS or those living with CML

Information Resource Center – Call 1-800-955-4572 or ask us a question online

Co-Pay Assistance Program

Family Support Groups

LLS Blood Cancer Discussion Boards – Living with CML

As Abdul-Jabar says, there is hope for those who have received a CML diagnosis. If you have a positive story to share about your experience with CML we encourage you to post it on The Leukemia & Lymphoma Society Community in the Tell Us Your Story section as inspiration to others.

Clinical Trials and Transportation Barriers

communityreply@lls.org — Mon, 19 Oct 2009 18:00:39 GMT

The following post is from our Public Policy department.

Currently, only 3 to 5 percent of adult cancer patients participate in clinical trials. The leading reason for the low participation is barriers that hinder access to clinical trials. The Leukemia & Lymphoma Society (LLS) is pursuing several avenues to increase patient access to clinical trials so that blood cancer patients can have access to all of the treatment options available to combat their disease.

In February, patients were asked in this forum to share their personal stories about one of the potential barriers to enrolling in clinical trials: health insurance coverage. Specifically, we asked if, and how, insurance company denial of coverage for enrollment in a clinical trial might have influenced their decision whether to participate in a trial. Now, LLS is searching for personal anecdotes about how patients have been affected by other hurdles to patient participation in clinical trials: transportation and communication.

Some clinical trials are only conducted at one institution, or at locations that require travel on the part of the patient, making transportation to that location for treatment and follow-up care a major concern, and a barrier for participation, for a number of patients.

In New York, LLS is pushing legislation that would break down these barriers to clinical trials access. Bills introduced in Albany by Assembly member Dick Gottfried (A. 1805) and Sen. Tom Duane (S. 4492) would create a state grant program to cover costs associated with clinical trials education and transportation, and patient navigation to find out about available clinical trials. Organizations such as LLS would then apply for these funds to provide financial assistance to patients in need.

LLS would also like to address this issue nationally. To do this we need your help in gaining a better understanding of how many blood cancer patients are being affected by transportation and communication issues. How many more patients would be willing to enter a clinical trial if they simply knew they were being offered? How many know about a clinical trial that would help their disease, but cannot afford to travel to the center where it is being conducted? Would patients be able to participate in a trial if LLS gave financial assistance to help cover these transportation costs that can sometimes be crippling? Please share your experience and thoughts with us.