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.

It’s that time of year again – weather increasingly warming up, beckoning people to get out and enjoy themselves. It can be a very satisfying time of the year, but for people who have sensitive skin as a result of chemotherapy treatment it can be a time when extra precautions are needed. Skin-related side effects of treatment may include dryness, redness, rash or itchiness.

Here are a few ideas of what cancer patients can do to make sure they can still enjoy the last days of Spring and early days of Summer.

Wear:

• At least SPF 30 sunscreen – double-check that all exposed skin is covered
  
• A wide-brimmed hat or scarf on your head
• Clothing that protects against UV rays or long-sleeved shirts and trousers when in the sun

Plan to:

• Check the weather and choose less intense days to sit outside  
• Plan outdoor activities for early morning or late afternoon
• Find shady areas to sit in, so you are not in direct sun
• Bring an umbrella with you in case there isn’t shade

Ask:

• Your doctor about specific sun-related effects of your therapy 
• About topical solutions (creams, lotions or gels) to soothe, soften or moisturize skin and to prevent itching.
• Your friends and family to bring extra sunscreen or umbrellas
• Your peers how they cope with the sun

Learn more about chemotherapy on www.LLS.org or call our Information Resource Center with any blood cancer questions you may have at (800) 955-4572.

How do you protect your sensitive skin on sunny days?

Hearing the words, “You have cancer” can make you feel like your life has changed in an instant. You may feel worried about making treatment decisions and handling money matters.  Many people with cancer say they wish they had more information right from the start. Over time they found that taking an active role in choosing doctors and making other treatment decisions had a positive effect on their health and quality of life.

But it can take a while to get your thoughts together. So we offer printable healthcare question guides on many topics (in .pdf format). These will help you get the information you need to be involved in your treatment to look forward to recovery. You can select the topics you want and have these with you when you talk to your doctor and other members of your medical team. 

Choosing a Specialist

• Questions to ask when you are in a discovery consultation session with a specialist.

Treatment

• Questions to ask when discussing lab and/or imaging tests.

• Questions to ask when discussing treatment options.

• Questions to ask when discussing treatment side effects.

• Questions to ask when discussing at-home medications.

Clinical Trials

• Questions to ask when discussing clinical trials with your oncologist.

Complementary and Alternative (CAM) Therapies

• Questions to ask when discussing CAM therapies.

Second Opinion Consultations

• Questions to ask during a second opinion consultation.

• Questions to ask when discussing second opinion consultations health insurance coverage.

Learn more about the issues surrounding these topics by visiting www.lls.org/whattoask.

Have questions for us? Contact our Information Resource Center at (800) 955-4572 or via our Contact Us form.

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.

Read more about pain management facts and tips on www.LLS.org, or take a look at our newly updated fact sheet on this important topic for blood cancer patients.

Have questions that you can’t seem to find the answers to? Contact the Information Resource Center online, or speak directly with a specialist who can assist or point you in the right direction at (800) 955-4572.

Are you a patient that has experienced pain in relation to your blood cancer? Do you have tips you can share for communicating with doctors, family members or friends about your pain?

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?

When we recently posted our Cancer Centers page it made me realize that some people may have to travel quite a distance to get cancer treatment. Some may only have to travel a short distance, but others may require longer time on the road or in the air.

Certainly there are many more places to get cancer care other than the centers we have listed, but there may still be barriers for some who are not already located near one.

The Leukemia & Lymphoma Society (LLS) may be able to help you with treatment-related travel for eligible blood cancer patients. LLS has a program that can provide reimbursements for private and public transportation, air travel tickets, tolls, and parking fees. Your medical provider needs to sign off on your request, though, to make sure that we are reimbursing you for your medically-related travel expenses.

Contact your local LLS chapter to find out if you are eligible to participate in this program. It can help make those trips a little easier.

Have questions about our other financial support programs? Contact the Information Resource Center (IRC), and someone will be able to help you find the answers you need.