The Leukemia & Lymphoma Society Blog

LLSpotlight: New video series about LLS

millss — Mon, 01 Dec 2008 19:26:53 GMT

The Leukemia & Lymphoma Society (LLS) has created a new video series called LLSpotlight, which features a panel of LLS leaders being interviewed by correspondent Bill McGowan. The first video is now posted on our LLS channel on YouTube.

We created LLSpotlight to talk to you about how our organization has been able to move blood cancer research forward, and to tell you about our current efforts in the fight against blood cancers. Our first video, Why LLS? conveys an important message for everyone who has been touched by a blood cancer and any of you who are considering donating your valuable time or hard-earned money to LLS.

We plan on adding more videos in the coming months. If you have a Google or YouTube account you can subscribe to our channel and be notified when we’ve posted another video.

Why LLS?, and let us know what you think in the comments here or on YouTube.

As we near the end of this year, consider making a year-end donation to The Leukemia & Lymphoma Society online. It’s secure and tax-deductible.

Healthcare questions to ask if you have been diagnosed with a blood cancer

millss — Mon, 17 Nov 2008 17:55:55 GMT

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

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

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.

Guest Post from Mike Hamel, Lymphoma Patient, Cancer Blogger and Author

millss — Mon, 18 Aug 2008 18:33:23 GMT

I really enjoy reading (and writing!) blogs. A blog provides a less formal environment to share information than other forms of writing, and it enables regular people to have their voice be heard by potentially anyone and everyone. I feel pretty privileged to be able to read people’s personal cancer experiences through their blogs, and was delighted to be introduced to Mike Hamel’s blog, Cells Behaving Badly.

Mike was diagnosed with lymphoma in early July of this year, and is taking the time to document his experience. He writes regularly and with a wonderful sense of humor that makes the experience sound less daunting.

Mike has graciously given us permission to share one of his blog posts with you, so without further ado, read on!

A Client, Not a Patient

^{Mike Hamel, client, and Nurse Sharon}

I won’t be able to change the nomenclature of the medical profession but I refer to myself as a client, not a patient. By definition, a patient is “One who receives medical attention or treatment.” The archaic meaning was “One who suffers,” from the Latin verb meaning “to endure.” A client on the other hand is “The party for which professional services are rendered.”

Catch the nuance? A patient is the object of medical care, a client is the subject of medical services. In language as in life, an object is passive, a subject is active.

A patient complies with the experts. A client consults the experts, then follows what seems the best advice.

A patient might complain but would never contradict an authority. A client will ask questions and weigh alternatives before deciding.

A patient goes where sent and doesn’t change doctors or clinics. A client tries to find the best physicians and facilities realistically available.

A patient asks “What?” A client asks “Why?”

Being a client takes a lot more work. I have to educate myself about my condition and treatment options. It’s a daunting but doable task thanks to the Internet. There are plenty of reputable sites with reliable information the average person can understand. (See the LYMPHOMA INFO box in my sidebar for a start.)

Oncologists know a shipload more about lymphoma than do its sufferers, but they don’t know everything. It’s impossible to keep up with the ocean of new information. A dialogue with a well-informed client could suggest new possibilities to a thoughtful physician.

When I see Dr. Kurbegov in two weeks, I’ll ask if radioimmunotherapy is an option for my type of lymphoma based on an article I read in the New York Times. I’ll ask about any clinical trials for which I might be a candidate, especially those sponsored by the MD Anderson Cancer Center where Dr. Kurbegov was a Chief Fellow.

I’m not trying to play doctor or impress anyone with my research skills. I’m just trying to understand my cancer and to be proactive in eradicating it. After all, it’s my life.

Learn more about Mike by visiting his blog. It’s possible you may already be acquainted with his books which include the Matterhorn the Brave series, as well as The Entrepreneur’s Creed.

Consider these "client" resources as you manage your diagnosis and treatment:

Five ways to cope with a blood cancer diagnosis

millss — Fri, 30 May 2008 14:14:06 GMT

No one response to a blood cancer diagnosis is universal, but for many people the time of diagnosis may be a challenging and confusing time. Here are a few ideas on ways to cope, based on tips in our online Coping booklet (downloadable as a .pdf).

Consider sharing your diagnosis. If you have been newly diagnosed with cancer, you may wonder if you should share this diagnosis with others. It’s possible that you may encounter some people that will have a hard time showing support, but more often than not you may find that many will give you the support you need. If you do share, make sure you are ready and comfortable.
Talk about it. As the patient, you may want to talk about your diagnosis and treatment. It is important that the family member or friend you want to talk to is ready to discuss this, as they are likely feeling stressed about your diagnosis as well. Ask them directly if this is a good time to talk, and respect the answer given.
Ask questions. Newly diagnosed patients benefit from asking their doctor(s) questions about their cancer and treatment. If you have several questions, you may want to write them down prior to your appointment to make sure you don’t forget any of them. You can also print out some of our question guides which cover different aspects of diagnosis and treatment.
Coping with side effects. Cancer treatment can be unpleasant, but remember that most side effects are temporary and that the goal is to destroy the cancer. Ask your medical team if there are medications you can take or things you can do to deal with the various side effects like nausea or hair loss. You may also want to warn your family or friends of potential moodiness, which can be a side effect of treatment. Giving them a heads up on this can help to avoid misunderstandings or conflicts.
Understand your health insurance coverage. It is important to know what treatment is covered by your health insurance. Coverage can vary depending on what plan you have, and it is a good idea to keep track of what medical fees the insurance company is responsible for paying.

Download the Coping booklet which has many more beneficial tips for patients, caregivers, family members, and friends affected by a blood cancer diagnosis. You can also download the Spanish-language version of Coping, Lidiando con la Supervivencia: Apoyo para personas que padecen de leukemia en adultos, el linfoma y el myeloma. You may want to download another booklet as well, Each New Day, which also has suggestions on how to cope with leukemia, lymphoma, or myeloma.

What are some ways you have been able to cope with a blood cancer diagnosis?