The Leukemia & Lymphoma Society Blog

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:

It’s easier to find clinical trials for blood cancer patients with TrialCheck®

millss — Tue, 12 Aug 2008 20:19:45 GMT

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?

Warning: Watch out for this email hoax

millss — Fri, 16 May 2008 18:56:13 GMT

Earlier this week I saw that The Stupid Cancer Blog had a post regarding an email hoax that has been floating around people's inboxes. This email, which is attributed to Johns Hopkins Hospital, has been getting passed around since at least March 2007 (according to the Johns Hopkins website), but we feel that this is still important enough to bring to your attention.

What’s in the email? This email describes properties of cancer cells and how to prevent cancer, which can be misleading to the cancer community since there are currently no known preventative measures. As explained on the Johns Hopkins Hospital site, this email is a hoax and was not sent by Johns Hopkins.

If you ever get a suspicious email, or one that has information that sounds just too good to be true, delete it. If the email appears to come from a reputable group like Johns Hopkins or us, then contact that organization so they can take appropriate action.

Have any of you received this email? If so, what did you do?

Get help with cancer treatment travel costs

millss — Thu, 15 May 2008 13:56:18 GMT

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.

Visit our Cancer Centers webpage on LLS.org

millss — Wed, 02 Apr 2008 19:59:30 GMT

Good quality healthcare is important at any time in life. When you or someone you care about has cancer, finding quality care by may be especially time-sensitive. Visit our webpage Choosing a Treatment Center to learn about types of cancer care facilities, including National Cancer Institute (NCI)-designated Comprehensive Cancer Centers.

LLS also has a Web page that lists these NCI-designated Comprehensive Cancer Centers. You can find the centers by either clicking on the map on the page or by scrolling down and looking through the list of centers. The list is organized by state in alphabetical order, so it's easy to find out if a center is located near you.

You might be interested in our Co-Pay Assistance Program, too. This year-old program helps qualified blood cancer patients with some costs including health insurance premiums, co-pay obligations and Medicare fees. Find out if you're eligible.

You can find out about other ways to get help with health care costs by visiting the Financial Support section on our Web site.

Already involved? Let us know about your experience with our programs by commenting on this blog post.