The Leukemia & Lymphoma Society Blog

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.

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Christen Reilert was diagnosed with non-Hodgkin lymphoma (NHL) when she was just 27-years-old. She took some time out to answer our questions on what it meant for her to be diagnosed with cancer as a young adult, as well as the fertility issues she faced.

 

LLS: How did you find out that you had NHL?

Christen: I found out I had NHL when I started having trouble taking deep breaths. Every time I took a deep breath it hurt which prompted me to go to my doctor. Twice I was misdiagnosed with walking pneumonia, given antibiotics and sent on my way. Two months later the symptoms returned and I ended up going to the hospital where they did a chest x-ray and found a large mass in my chest. That was the 4th of July in 2002 when I was diagnosed with NHL.

 

LLS: That sounds frustrating. Can you describe how you handled the diagnosis, as well as how it affected your day to day life?

Christen: The news was a total shock, being 27-years-old and a two-year newlywed with my husband, Josh. I was devastated. After the shock, I decided I was going to do whatever it took to survive. At the time, I didn't want to know anything about the cancer, I just wanted to fight it. Every day I went in for my chemo treatments I had a smile on my face and I knew at that moment, I was a survivor. I went through six chemo treatments over an 18-week period and 18 days of radiation. I lost all of my hair on my body, got severe thrush*, became extremely fatigued and was out of work for seven months. Since that dreadful day of diagnosis, I look at every day as a gift. Every day I wake up, I thank God for letting me enjoy another day of life. There is nothing in life that be that bad. In my life, there are no bad hair days, no feeling sorry for myself, just living everyday as it comes.

 

LLS: Do you mind sharing if and how your diagnosis affected your plans to have children?

Christen: Just two months prior to my diagnosis, we had just started trying to have a family. I had always dreamed of becoming a mother and when I was told I had cancer, my dreams were shattered and put on hold. There was no definite answer if I'd ever be able to have children. I sought out professional advice from an infertility specialist in Manhattan. Josh and I traveled there by car and she told me I could freeze embryos but I'd have to wait until my next cycle when I ovulated again. Unfortunately my tumor was so aggressive I couldn't postpone chemotherapy and I was not able to freeze any embryos to preserve my fertility. Needless to say, I cried all the way home.

 

LLS: Was there anything you could try at that point?

Christen: My chances of becoming a mother were slim. I took a chance and the doctor put me on a birth control pill to suppress my period for the duration of chemo (which was 18 weeks as well as 18 days of radiation) in hopes the chemo would bypass my reproductive system. The chemo I endured was very aggressive and harsh, and basically prayer and hope was all that was going to ensure any sort of fertility.

 

I was very ecstatic when I found out I was pregnant in April of 2008. When I took that pregnancy test, I literally did a double take. All the prior tests were always negative and to get a positive result was just shocking. When the doctor confirmed my pregnancy with a blood test I didn't waste any time breaking the news to family and friends!

 

LLS: Congratulations!

Christen: Yes, on December 23rd, 2008, our miracle baby born. Our son, Jaden was born! My motto which I've been saying since I found out I was pregnant has been "CANCER SURVIVOR'S HAVE MIRACLES TOO". We are so blessed to have him. What more could a cancer survivor ask for?

 

LLS: How is your health now?

Christen: I am currently in remission and have been cancer free for the last seven years now.

 

LLS: We hear that you’re actively involved with The Leukemia & Lymphoma Society (LLS).

Christen: After I completed radiation in early 2003, I ended up calling LLS to become involved in fundraising because felt like I owed the world a big fat thanks! For everyone who helped me beat this disease, I felt like I had to give something back. So in 2003 I started doing the Light The Night Walk and formed my own team, Christy's "Cure"ators. I have been the team captain for the last six years and an honored patient hero for the last five years. Everyone who walks with Light The Night Walk has been following my story. Last year at Citibank Park I was speaking (as I do every year) and was able to announce my pregnancy. I unveiled my seven month pregnant belly in front of hundreds of people with a zip of my jacket and the crowd roared for me. It was so exhilarating. This year, I get to introduce my son Jaden to everyone at Citibank Park, I can't wait.

 

In addition to being a team captain and honored patient hero I also volunteer my time anywhere I can. I am also a First Connection Volunteer for those who are diagnosed with similar diagnosis and who are around my age - I am like a mentor to them.

 

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* ”Some people may develop a white, shiny coating or white patches on their tongue, inside of the cheeks or on the floor of the mouth. This symptom may indicate a yeast infection, also called ‘thrush’ or ‘oral candidiasis.’” From the free booklet, Understanding Drug Therapy and Managing Side Effects.

 

If you’re a young adult who has been diagnosed with blood cancer, you can give our Information Resource Center a call at (800) 955-4572 and someone will be able to help you or point you in the right direction.

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The Leukemia & Lymphoma Society (LLS) is proud to offer telephone education programs for blood cancer patients and their caregivers. These programs, which require free registration, are both informative and interactive for those dealing with specific types of blood cancer or certain treatment topics.

 

Free registration is now available for these upcoming October programs.

 

October 14, 2009 - Treating Uncommon Lymphomas: Dialogue with an Expert on T-Cell, Malt, and Waldenström Macroglobulinemia

October 29, 2009 – Managing Myeloma: An Expert’s Update

 

Check the National Education Programs page often to see what is available, or visit any of the archive pages to listen to past programs, download transcripts or to access highlights from many of the past programs (archive pages can be found in each disease education series section – for example, there is a link to the archived programs on the Myeloma Education Series page).

 

Need assistance? Call the Information Resource Center at (800) 955-4572 and someone will be able to answer your question or steer you in the right direction.

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It was probably the last thing you expected, but here you are, a young adult with a cancer diagnosis that has taken center stage.

 

The Leukemia & Lymphoma Society (LLS) wants to help you deal with the challenges you face and has many resources  for you. Here are just a few:

 

Audio and Web Programs

 

 

Free Materials (Download or Order)

 

 

Additionally, young adults are welcome to join and participate in the LLS Blood Cancer Discussion Boards where there is a section specifically devoted to the young adult cancer community.

 

As always, young adults are encouraged to bring their questions to our Information Resource Center by calling (800) 955-4572 or contacting us online.

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The Leukemia & Lymphoma Society (LLS) is proud to congratulate Dr. Brian Druker for receiving the prestigious 2009 Lasker~DeBakey Clinical Medical Research Award. Dr. Druker, along with Dr. Nicholas Lydon and Dr. Charles Sawyers, is receiving the award because of their discovery of and successful clinical trials with Gleevec®, a drug that benefits chronic myelogenous leukemia (CML) patients.

 

Dr. Druker received critical funding from LLS in 1995 for his research on the tyrosine kinase inhibitor, STI-571, later named Gleevec, through the Translational Research Program. He discovered that CML cells that had been taken from patients were killed by this inhibitor. In 1998, Dr. Druker was able to test Gleevec in clinical trials and 53 of the 54 patients who participated achieved normal blood counts.

 

Dr. Druker continued to receive funding, and in 2000 was awarded additional funds through LLS’s Specialized Center of Research (SCOR) program. In 2001, Gleevec was approved by the FDA.

 

Many CML patients, who once may have considered their diagnosis terminal, are now leading normal and healthy lives because of Dr. Brian Druker’s breakthrough research. LLS is proud to have funded this innovative research, and appreciates the valuable work that Dr. Druker continues to provide to our patients and their families.

 

Visit the Lasker Foundation website to learn more about the Lasker~DeBakey Clinical Medial Research Award, and watch this eight-minute video that highlights the important research of these three doctors.

 

Have a question about CML or Gleevec? Call the Information Resource Center at 1-800-955-4572 or send us an email.

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Get Well Mike!

Posted by Samantha Mills Sep 1, 2009

We just learned that Mike Hamel was in a car accident last week and broke his back. As you all recall Mike is the one who did a superb job interviewing his oncologist, as well as lending us one of his blog posts last year. As always, his humor has stayed intact and he is still actively writing updates on his blog, Open Mike.

 

One of his recent posts asks readers to share suggestions for superhero names since he’s now wearing some heavy duty armor to protect his back. Why don’t you head on over there and share some ideas as well as your own good wishes?

 

Feel better Mike!  And thank you for keeping everyone in the loop on your blog!

 

-Your friends at The Leukemia & Lymphoma Society

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The Leukemia & Lymphoma Society (LLS) is proud to now offer live online chat for chronic myelogenous leukemia (CML) patients, which launches its first session this Tuesday, August 25. This live chat, called Living with CML, runs for two hours every Tuesday evening from 8:00 p.m. to 10:00 p.m. ET. Living with CML joins the long-running Living with NHL: Gaining a Sense of Balance chat, which runs every Monday and Wednesday evening from 8:00 p.m. to 10:00 p.m. ET.

 

Each chat session is hosted and run by an IRC Moderator, who is responsible for making sure that chat participants stay on topic and are respectful of each other and differing opinions. The purpose of each chat is to provide patients a safe place to discuss their stresses and triumphs through any aspect of their experience with CML or NHL.

 

Learn more about live online chat, and visit the registration page to sign up for either chat.

 

Not sure online chat is for you, but you still want to connect with other patients? Try out the LLS Blood Cancer Discussion Boards, an online forum devoted to the blood cancer patient and caregiver community.

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If you are a regular reader of The Leukemia & Lymphoma Society Blog you will remember a blog post that was shared by non-Hodgkin lymphoma patient Mike Hamel from his blog, Cells Behaving Badly. In that post, Mike talked about the value of approaching cancer treatment with the mindset of a client rather than a patient.

 

Since that time, Mike has gone into remission once, had a return of his cancer and has been undergoing treatment during most of that time. The entire time, he has still managed to provide frequent updates and thought-provoking posts through his blog, renamed OPEN Mike.

 

In a recent post Mike shared a video interview he did with his oncologist, Dr. Dax Kurbegov, Director of the Memorial Cancer Clinic in Colorado Springs, CO. It’s an informative look into the patient/doctor relationship, and it’s clear that Dr. Kurbegov loves both his job and patients. Take a look.

 

 

Just diagnosed with cancer? Download these question guides to take with you to your medical appointments, and learn how to make the most out of your doctor’s visits by reviewing Communicating with a Blood Cancer Specialist.

 

If you have a question about leukemia, lymphoma or myeloma give us a call at 1-800-955-4572 or contact us online. We’re available Monday through Friday from 9am to 6pm EST.

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The Leukemia & Lymphoma Society (LLS) and The Wellness Community (TWC) have teamed up again to bring blood cancer patients and caregivers online support groups. These groups are unique in that they are designed for participants to come together at pre-determined times online and be led by trained professionals.

 

Currently the LLS-specific groups available to patients are the LLS Lymphoma Group, which meets on Monday evenings online, and LLS All Blood Cancers, which meets on Tuesday evenings. TWC provides other groups which are more general in nature, but still provide a safe and welcoming online space for those dealing with any of the blood cancers.

 

To learn more or to join these groups, visit The Wellness Community.

 

We also encourage you to participate in the LLS Blood Cancer Discussion Boards, an online community devoted to all those touched by blood cancer.

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A report in the news this week suggests that 9/11 responders to the World Trade Center may be at an increased risk for myeloma. The report’s authors caution that their findings are very preliminary, however so far eight responders have been diagnosed with myeloma, four of whom are men who were diagnosed when they were younger than 45 years. Myeloma typically is diagnosed in persons who are aged 50 years or older.

 

While some say that it is possible for these myeloma cases to be linked to these patients’ time at Ground Zero, there is also admission that it could just be a coincidence. "In all fairness, it is unusual for this patient population to have multiple myeloma but it's not unheard of," explains Dr. Denise Pereira, assistant professor of clinical medicine at the University of Miami Miller School of Medicine. "But a lot of the things they were exposed to, such as benzene, have in the past possibly been implicated with an increased incidence in the cancer. It does make theoretical sense."

 

This report appears in the August issue of the Journal of Occupational and Environmental Medicine; to read the full news article visit HealthDay.

 

If you’d like to learn more about myeloma, here are some myeloma resources you can find on The Leukemia & Lymphoma Society (LLS) website.

 


As always, our Information Resource Center specialists are available to take your questions Monday through Friday, 9 a.m. to 6 p.m. EST at (800) 955-4572. You may also contact them online.

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Critical research is being done on a daily basis by tireless blood cancer researchers to find out more about blood cancers and how they work. Most research cannot be completed without necessary funds, and The Leukemia & Lymphoma Society (LLS) has devoted more than $600 million to blood cancer research since the first funding in 1954

 

LLS allows blood cancer researchers to apply for funding for their research projects through the Career Development Program (CDP). This program supports blood cancer researchers early in their careers to ensure that they have the opportunity to work on innovative life-saving research as well as the ability to learn more about blood cancers and the diseases’ challenges.

 

In order to qualify, research projects must be relevant to LLS’s mission: cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. Examples of relevant research areas are experimental therapeutics, cell growth regulation and DNA damage and repair.

 

If you are a researcher or know a researcher that could benefit from LLS funding, please visit the Career Development Program page on www.LLS.org for deadlines, detailed guidelines and a link to proposalCENTRAL.

 

Learn more about our research initiatives, and discover how LLS has been an innovative non-profit organization for 60 years.

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June 26th marked the release of the new film “My Sister’s Keeper.” This fictional story, starring Cameron Diaz and directed by Nick Cassevetes, is about a girl conceived to donate her bone marrow to her leukemia-stricken sister. The real life version of that story can be seen in the Ayala sisters of Orange County.

 

At age 16, Anissa Ayala was diagnosed with leukemia. A bone marrow transplant was given as her only option for survival. Since no bone marrow donor match was available, her parents chose to conceive a child in the hopes that he or she would be a matching donor. Born in 1991, Anissa’s sister, Marissa-Eve was a perfect match. At 14 months of age, Marissa-Eve provided her sister with a life-saving bone marrow donation, making Anissa cancer-free for the last 18 years.

 

As “My Sister’s Keeper” gains more and more media attention, so does the Ayala sister’s story. You can read a piece in the June 22 issue of People Magazine and this article from Inside Edition. Anissa, who currently works as the director of business development for The Orange County/Inland Empire Chapter of The Leukemia & Lymphoma Society, is happy to be sharing their story.

 

The Ayala sisters have started a fund to fight blood cancers locally in the Orange County/Inland Empire region of California. To date, the fund has raised nearly $1,000 to help fight blood cancers. Join the fight and donate in honor of their brave, true story.

 

Learn more about leukemia, treatment options and how to participate in ground breaking research.

 

Related Resources:
Blood & Marrow Stem Cell Transplantation (PDF)
Understanding Leukemia (PDF)

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A few weeks ago we shared a post on financial insecurity and blood cancer treatment, sharing with you some helpful links to information and programs provided by The Leukemia & Lymphoma Society (LLS). In this post, we wanted to highlight the personal side of our Co-Pay Assistance Program and share with you a couple of stories about myeloma patients who have benefited from this program.

 

Kalimah Jenkins, a 44-year-old African American from Atlanta, GA, was stunned to find out that her bone pain and fatigue were symptoms of myeloma, a difficult blood cancer. She was equally as shocked when she found out how expensive her treatment would be, and wasn’t sure how she would be able to pay for the drugs she needed. It was in her favor that her doctors knew about LLS’s Co-Pay Assistance Program, which helped her pay for her critical treatment.

 

Cislyn Blackwood, a 60-year-old from Fresno, CA, also a myeloma patient, has also benefited from the Co-Pay Assistance Program. Her treatment was already very expensive, but after being laid off from her job and her COBRA benefits running out, her financial situation became ever more challenging. She received the funds she needed through LLS's Co-Pay Assistance Program and was able to pay for her medication.

 

Both women say that LLS’s program has been a tremendous help, and are grateful that they found out about it; unfortunately, some myeloma patients who can’t afford it wind up going off of life-saving treatment.

 

If you or a loved one has been diagnosed with myeloma, visit www.lls.org/copay or call (877) LLS-COPAY to find out if you or they qualify for assistance. Note that other blood cancer patients may quality for assistance as well.

 

If you are a doctor, visit www.lls.org/copayproviders to find out how you can apply for the Co-Pay Assistance Program on behalf of your patients.

 

Learn more about Kalimah’s and Cislyn’s stories.

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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?

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Like many people around the world, you may be concerned about the current state of the economy and how that affects your family’s finances. If you are struggling financially and have bills for for blood cancer treatment we have some resources that may help you.


Health Insurance – Learn about your rights, COBRA and other helpful information.


Patient Financial Aid – The Leukemia & Lymphoma Society (LLS) provides a small amount of financial assistance to patients in financial need. Application also available in Spanish.


Co-Pay Assistance Program – This program offers help with the cost of insurance co-payments and/or insurance premium costs for prescription drugs for certain blood cancer diagnosis, depending on the availability of funds. Patients must qualify both medically and financially for this program. Also in Spanish.


Financial Health Matters – Download or order this free, informative booklet about how to deal more effectively with some of the financial challenges you may face as a blood cancer patient or caregiver. Also in Spanish.


Cancer Survivorship: Practical Tips for Managing Your Financial and Insurance Issues – Listen to the audio or download the transcript for this teleconference.


If you haven’t already, you may also want to register for The Leukemia & Lymphoma Society Community where you can participate in peer to peer discussions about financial and insurance issues.


We also encourage you to call our Information Resource Center at (800) 955-4572 and talk to one of our information specialists about other potential resources that may be available to you.

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