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.

^{Lonny & Holly}

Like many brides, Holly Jukiewicz is looking forward to her wedding this June where she will marry the love of her life, Lonny Warner. They met online just over two years ago, and decided to meet in person just a month later. That same week they both realized that this was the relationship that they had been looking for, and decided that they were not interested in dating anyone else. That September, Holly accepted Lonny’s proposal through happy tears.

A few months ago, Holly received an email from a co-worker asking for support for her daughter’s participation in The Leukemia & Lymphoma Society’s (LLS) Light The Night Walk. Holly didn’t hesitate to donate because she was touched by the young girl’s involvement in Light The Night.

There's another reason Holly was moved to donate. When her fiancé Lonny was just a few months old he was diagnosed with leukemia and he was is treatment for the next several years. His entire family was affected. His brothers often had to stay with other family members while their parents and Lonny were away at the hospital. And Lonny has memories of the dreaded trip over the George Washington Bridge into New York City -- that was the route they took when he had to go for treatment. The family was determined to get Lonny into remission, and he beat the leukemia.

Holly has supported Light The Night in the past. But this time she and Lonny decided that it would be fitting to share their gift with their wedding guests by having LLS-themed place cards. Holly told her co-worker, “If this can help any other person or little kid avoid going through what Lonny and his family went through --and still have memories of --then it is time and money well spent.”

It’s clear that Holly has nothing but praise and love for her future husband and his family. “I thank God every day that he and his family were so strong to get through this illness when he was so very young. I am so blessed to be part of his family and my family feels the same way about all of them as I do.”

Learn more about Light The Night by visiting www.lightthenight.org or reading @LLS.

Find out more about childhood blood cancers by visiting the main LLS website or by calling our Information Resource Center at (800) 955-4572.

Show your Valentine you have heart - make a donation to LLS in Honor of your sweetheart and support life-saving cancer research.

We’re excited to share with you another guest blog post from another cancer blogger. Ronni Gordon writes “Running for My Life: Fighting Cancer One Step at a Time” where she shares her ups and downs with leukemia. Here, in this guest post, she points out the value of the Internet when you’re on your cancer journey.

^{Cancer Blogger Ronni Gordon}

I started my blog on April 1, 2008, with these words: “I’m like Lance Armstrong.”

“Just kidding,” I continued. “Since its April Fool’s Day, I thought it was a good time to get that out of my system. I do have some things in common with him, though. We both ride a bike and we both fought cancer. Sports helped pull us both through. Running and tennis are closest to my heart, and it was after struggling through a road race at just about this time five years ago that I learned I had leukemia.”

Not too long before starting my blog, “Running for My Life: Fighting Cancer One Step at a Time,” (runnerwrites.blogspot.com), I didn’t even know what a blog was. I came across them more and more when doing research on the Internet for my job as a reporter at a regional daily newspaper in Western Massachusetts. I didn’t think blogging was for me, until I relapsed in 2007 and found myself with time on my hands – and in need of a creative outlet -- as I recuperated from an allogenic transplant that I received at the Dana-Farber Cancer Institute on Oct. 15, 2007.

I thought it would be fun to start out with a joke on April Fool’s Day.

I had fun putting it together and writing it, but, thinking that nobody was reading it, I stopped posting.

Then I got an e-mail from PJ, whose blog, called The Plog, is about her double cord blood transplant. Except for the differences in transplant, she wrote, we seemed to be doppelgangers; we’re both runners who relapsed with AML, we both have three children, we both go to Dana-Farber, we’re both journalists, and we both, thankfully, were in remission again. I wrote back asking her how she found me, and she said it was just through browsing the Internet.

PJ told me about a support system she had developed through reading other leukemia survivors’ blogs and forming friendships that went beyond the Internet. She also told me about the LLS Discussion Boards, especially the section on Bone Marrow Transplant.

I have a huge support system, but I didn’t know anyone who had leukemia. I am very good friends with a breast cancer survivor, and we had our own informal support group for two. But when you start talking about blood counts going up and down or about bone marrow biopsies, nobody can relate like a blood cancer survivor. I mentioned to my friend that there were many support groups for breast cancer survivors but none that I could find for leukemia survivors, and she said, “I know. Who gets leukemia?”

Recently I was pleased to see that LLS is, in fact, sponsoring a blood cancer support group at the Cancer House of Hope in Springfield. I will try to check it out, but right now I am can’t go in public places; my October transplant failed to engraft and I am now home recuperating from my second allo on June 10.

Which brings me back to the Internet, which is especially alluring when you can’t get out as much as you want. Following PJ’s lead, I began to connect with other survivors who really knew what I was going  through. I also jumped into the Discussion Boards and found many kindred, and incredibly supportive, people. I feel like I know many of these bloggers and contributors, even though I’ve never met them.

There is, of course, an upside and a downside.

The upside, I think, is stronger. There is so much comfort in knowing you’re not the only one, and in hearing all those success stories. People who’ve been there have provided advice on problems large and small. For example, I wrote that I was afraid to make plans. Someone answered, “You have to live your life. Start by making short-term plans that you can handle.”

I wrote of some of my successes, such as getting back to tennis, and I felt that my friends in the blogosphere were cheering me on. I, in turn, was able to provide advice to people who were scared about some things that I had already been through. That made me feel good.

And I discovered other resources for support, through following links on other blogs.

Finally, writing a blog helps me frame situations in a productive way. When I encounter a bump in the road, I often switch gears into thinking about how I will write about this or that problem. It helps to remove the rawness of the situation, and sometimes to even find the silver lining.

The downside is easy to imagine. You connect with some people who get very sick or who don’t make it. You read about someone else’s problem and think that suddenly you’re going to develop it too. You put a question out there – either on the blog or discussion board – and if nobody answers on the discussion board or posts a comment on the blog, you feel neglected.

You have to put up your boundaries, get your head out of your computer, take a walk, live your life. You have to remember to read about other things, to finish the newspaper and keep up with the books you’re reading. You need to think about something totally different, or else the Internet experience will be more draining than rewarding.

It’s a fine line, and I’m still working on it.

And of course, I blog on.

-

Learn more about leukemia, blood and stem cell transplantation, as well as other treatment options.

If you haven’t already, join The Leukemia & Lymphoma Society’s online patient community, the Patient Services Discussion Boards. You can also find in-person, face-to-face support groups near you.

As always, feel free to contact us with questions about any of the blood cancers or our programs at (800) 955-4572.

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.

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

Can’t find what you need? Let us know here by leaving a comment or by contacting our Information Resource Center by calling (800) 955-4572 or filling out our online form.

Take a few minutes and go to a website like Technorati. Type in the search bar “leukemia” and see how many blog posts come up. I just did a search and as of right now it says that 677 posts are tagged “leukemia” and there are 152 blogs about leukemia. There are also quite a few videos and photos.

It’s inspiring to read some of these blogs. It’s clear that writing about their experiences with cancer, whether they are a patient, caregiver or family member, is therapeutic and relieving. Not only are they helping themselves, the people who run across their blogs are finding hope and encouragement.

Take a look at How's Dave Doing?, a blog written by Anna about her husband Dave’s battle with leukemia. It’s both touching and informational. Read her recent post reviewing our very own Emerging Therapies for Blood Cancer Patients seminar held in San Francisco.

It was a strange feeling to sit in a huge ballroom, filled with hundreds of people, and think, "Most of these people have Leukemia or Lymphoma." You'd see a couple, and try to guess which one was the patient and which one was the caregiver, and it wasn't possible.

Another blog, The Plog, written by PJ, is about a woman’s experience as a leukemia patient and cord blood transplant recipient. She writes both about normal day to day experiences and surviving cancer. In January she celebrated her birthday with a morning run:

What made me go out for a run this morning at 7:30 when the temperature flirted with thirty? The flip answer is: because I could. The real reason I braved black ice was that today marks the completion of 54 years of living. There were moments over the past 22 months when I didn't think I'd survive to celebrate this day, let alone run two miles. My mother died of cancer when she was 53, and ever since I received my leukemia diagnosis at 52, it's been impossible for me not to dwell on her untimely death. Those were footsteps I did not want to follow.

Do you have any favorite personal cancer blogs that you follow? Do you write one?

*From Wikipedia.org: Blogosphere is a collective term encompassing all blogs and their interconnections. It is the perception that blogs exist together as a connected community (or as a collection of connected communities) or as a social network.