The Leukemia & Lymphoma Society Blog

2008 at The Leukemia & Lymphoma Society

millss — Fri, 12 Dec 2008 20:43:44 GMT

As with every year at The Leukemia & Lymphoma Society (LLS), our staff and volunteers work hard to provide the highest quality services and events as possible, as well as to advocate on behalf of blood cancer patients and fund critical research.

Here are some interesting highlights from 2008 to remind you of what we've worked to accomplish:

Our Patient Services group did it again by offering more than 20 free telephone education programs to patients, caregivers, and medical professionals around the globe. These programs featured expert speakers who talked about topics ranging from Advocating for Your Child's Learning Needs: Through Treatment and Beyond to Tomorrow's Therapies Today: Clinical Trials for Leukemia, Lymphoma & Myeloma. Find out what free programs are available for registration now by going to the National Education Programs web page now.
Speaking of clinical trials, LLS now supports a free clinical trial service that enables blood cancer patients to find clinical trials more easily. Patients can also call the Information Resource Center at (800) 955-4572 if they need assistance while using the system. Learn more about TrialCheck® at our website today.
Our local chapters have been hard at work in the communities they serve. The Chapter Education Programs reached 48,000 patients and caregivers in 2008. Our Family Support Groups, also a community-based program, reached 12,000 participants in 2008. Find out more about this program.
Aside from launching The Leukemia & Lymphoma Society Blog (this blog that you're reading right now), we also launched The Light The Night Walk Blog. Read about inspiring people and fundraising successes there.
LLS now offers more than 50 different up-to-date free booklets, fact sheets and brochures on blood cancer, treatment and support topics. Most are available in Spanish, as well. Browse our Free Materials section and download or order your free copies today.
LLS awarded a new Marshall A. Lichtman Specialized Center of Research (SCOR) grant to Beverly Mitchell, M.D., George E. Becker Professor of Medicine at Stanford University. She and her team will receive $1.25 million a year for five years, for a total of $6.25 million. Learn more about this award, and what Dr. Mitchell and her team are researching.

There's so much more that we've done over the last year (lots of events, new booklets and fact sheets, not to mention, introduce our new president and CEO, John Walter), and we're still going strong even as the year is coming to a close.

As we look to 2009, we realize that there's so much that we still need to be doing in the fight against blood cancers, but we can't do it without the support of our donors. We know that so many of you receive countless requests from other charities and non-profits at this time of year, but if you have been personally affected by a blood cancer then you understand the value of what The Leukemia & Lymphoma Society offers. Your secure tax-deductible online donation will help us to be able to continue to offer the services and events that are critically needed by patients, caregivers and survivors in 2009.

Every little bit helps. Donate to LLS today.

Reminder – We may be able to provide you with financial assistance

millss — Fri, 31 Oct 2008 18:42:13 GMT

We've talked about our financial aid programs here before, but it’s good to get a reminder every now and then – especially now that we’re all feeling the crunch a little more with the slowing economy.

First, a few items to keep in mind:

Not all patients will qualify for financial assistance, but the surest way to find out is to contact us for eligibility information.
We receive quite a few applications on a regular basis and process them in the order that they are received, so be assured that we are working very hard to process your application if you have already submitted one.
If you are confused about something on the application, contact us and we’ll explain.

Here is our list of financial aid programs for patients that you may be able to use:

Co-Pay Assistance Program – This program offers financial support for eligible patients towards the cost of insurance co-payments and/or insurance premium costs for prescription drugs. If you have questions about this program call the Co-Pay Assistance Program at (877) 557-2672 or email copay@lls.org and a specialist will assist you.
Patient Financial Aid Program – This program offers financial reimbursement for some medications, transportation and procedures. You can also contact your local chapter, and they will be able to assist you.

Here are a few other educational resources which you may find helpful as you try to figure out how best to manage your finances in relation to health care costs:

Cancer Survivorship: Practical Tips for Managing Your Financial and Insurance Issues – Part 1 | Part 2 – These are .mp3 files, so you’ll need an audio player like Windows Media Player or Real Player – both free - on your computer to listen to them. You may also download the .pdf transcript of this program or access other survivorship-themed audio programs here.
Financial Health Matters – You may download the free .pdf or go through our online order form to receive a printed copy in the mail. This booklet has many helpful financial tips when dealing with health care costs.
Financial Support – You can find more helpful information about finances and health care issues in our Financial Support section on www.LLS.org.

As always, if you have any questions please feel free to contact our Information Resource Center by sending a message via our Contact Us form or call us at (800) 955-4572. Our specialists will be happy to assist you.

Pain management and blood cancer

millss — Mon, 06 Oct 2008 15:41:43 GMT

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?

Rock band Monty Are I performs at Pennies for Patients event

millss — Wed, 25 Jun 2008 14:04:51 GMT

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

Can you relate to Ryan’s experience?

Blood cancer resources for Spanish (Español) and French (Français) populations

millss — Thu, 05 Jun 2008 14:24:04 GMT

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.

Have you just been diagnosed with cancer?

millss — Tue, 18 Mar 2008 16:40:04 GMT

I’ve been spending a little time today reading the Patient Services Discussion Boards, specifically the Newly Diagnosed board. It’s heartbreaking to read some of these posts. A lot of these new cancer patients and their caregivers are scared, feel helpless, and alone. Participating in our online community allows them to find the immediate emotional support they need.

These people are also looking for resources – many of which The Leukemia & Lymphoma Society (LLS) provides.

In just got the dx dkvpv looks for questions to ask her doctor:

“…my Dr. said we would sit down and talk. I'm very scared and numb. What should I expect, what should I ask?”

The LLS website has a page called, What to Ask After Diagnosis. It has a variety of printable question guides which can be of help during different conversations a cancer patient may have while sitting down with their oncologist.

In NH folicular lymphoma Me2RN looks for peer support:

“At times I feel set apart from others and would like to just talk about it with people who feel like I do or have the same experience. I have a great support group around me but they do not have cancer.”

LLS offers First Connection, which is a peer-to-peer support program. You can sign up to receive a call from a trained volunteer who has been through it, just like you. Both patients and caregivers can utilize this helpful program.

In New dx of CML-scared to death!! LauraB523 wants to know how to cope:

“So, does anyone have any advice or coping skills to pass along? I have some good days but also some bad. Just a lot to deal with right now!!”

Along with many other free materials, LLS offers the Coping support booklet (.pdf) which can either be downloaded or received by mail. It’s geared towards people living with leukemia, lymphoma and myeloma.

There are many other online resources available to people who have been newly diagnosed with one of the blood cancers. It’s not easy to find out that you or a loved one has cancer, but it can be easy to find the help and support you need on our website. Can’t find what you’re looking for? Give us a call or send us an email.