The Leukemia & Lymphoma Society - Fighting Blood Cancers

The Leukemia & Lymphoma Society Blog : May 2008

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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).

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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?

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The following is an excerpt from the May Research Commentary written by our Vice President of Research, Deborah Banker, Ph.D. You can read her future commentaries by subscribing to our monthly eNewsletters.

The Evolving Big Picture in Cancer Research

I recently attended the 2008 meeting of the American Association for Cancer Research (AACR), where more than 14,000 of the world's top cancer investigators gathered in San Diego, CA to share groundbreaking new findings and ideas.

Many of the research themes that I have brought to your attention in previous commentaries were discussed in the opening plenary session, presented by eight distinguished biomedical researchers.

Carol W. Greider, Ph.D., The Johns Hopkins University, talked about the ends of chromosomes called "telomeres." These protective caps normally get shorter each time a cell divides until they become so short that chromosomes deteriorate and aged cells die. Cancers can occur when the telomerase enzyme that elongates telomeres in young, healthy cells is reactivated in older cells, allowing these cells to divide beyond their normal lifespan. Dr. Greider discussed work showing that short telomeres limit tumor growth, suggesting that telomerase inhibitors might be useful targeted cancer treatments. Continued research in this area may lead to new treatments for blood cancer patients and for patients diagnosed with aplastic anemia and myelodysplastic syndrome.

Brian Druker, M.D., Oregon Health & Science University, finished this exciting session by talking about how to accelerate the pace of cancer drug development. It was Dr. Druker who developed the highly effective and safe targeted drug Gleevec®, for patients newly diagnosed with chronic myelogenous leukemia (CML). LLS was a primary funder of this advance which was built on knowledge of the kinase molecule that causes CML. We now know that other kinases are involved in a wide range of cancers, including blood cancers beyond CML.

Using Gleevec as a paradigm, Dr. Druker talked about target identification (finding the cancer-causing abnormalities) and clinical trials as the two points at which drug development could be streamlined. He and his colleagues are using batteries of gene-inactivating miRNAs to learn which kinase(s) is most involved in particular cancer cases; they have already had some success predicting which kinase-targeting drug will work for an individual leukemia patient. Dr. Druker said that this individualized target information will also allow clinical trials to be done in the "right" patients so that effective drugs can be more readily validated.

LLS is funding research in the laboratories of Drs. Greider and Druker. You can find more details regarding the blood cancer research advances presented at this year's AACR meeting by visiting their Web site and by staying tuned right here.

-Deborah Banker, Ph.D.

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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?

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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.

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Tell Us Your Story!

Posted by millss May 9, 2008

First things first - we have a favor to ask of you! Consider sharing your story with us via our Tell Us Your Story contact form that we recently added to the website.

We have a lot of ways that we can keep in touch with our web visitors.

  • There is a great network of websites, including our main one, www.LLS.org.
  • There is this blog, The Leukemia & Lymphoma Society Blog.
  • We have regularly scheduled telephone education programs.
  • We also provide several e-newsletters that our visitors can subscribe to.

These are just a few ways that we can keep you informed online.

On top of the above communication channels, we recently decided that our online contacts need to read about the people who have been positively affected by The Leukemia & Lymphoma Society (LLS). Right now we have elements of this, but we decided to devote some of our emails with real stories of people who have been helped in some way by our work. These are people who are battling blood cancer, may be in remission, or caregivers taking care of someone with blood cancer. We haven’t sent any messages out yet, but if you are an opt-in contact* you should receive our first story soon.

What we’d really like is to hear from you so we can tell our contacts your story. Have you utilized any of our resources during or after diagnosis? Do you volunteer with us in any capacity? Do you participate in any of our events? If the answer is yes to any of these questions, please go to our Tell Us Your Story contact form and let us know your story.

If you don’t have a story you’d like to share, but you still want to contact us, I’d suggest using our main contact form so your question or comment can be routed to the appropriate staff person more quickly.

*An opt-in contact is someone who has agreed to be contacted via email by The Leukemia & Lymphoma Society. This type of agreement can take place while you’re signing up for an e-newsletter or by filling out one of our online contact forms.

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Lymphoma in the Blogosphere*

Posted by millss May 5, 2008

You may remember that a few weeks ago we looked at a couple of personal leukemia blogs. This week I thought I’d take a look at lymphoma in the blogosphere.

I just went to Google Blog Search and typed in “lymphoma” – results are well over one million (1,165,066 at the moment) for all time. I then clicked on “last day” in the left column and 190 results were pulled up. A lot of people are talking about lymphoma – and their experiences are very diverse.

Bill, a.k.a. Billy Bird on his blog, recently started to write Lymph Notes. He was diagnosed with lymphoma on December 24, 2007. Recently someone asked him what having cancer has taught him, and he provided his answer on his blog:

I hope that the biggest lesson I have learned is to continue to think positively. Without doubt, I have created a new future committed to allowing myself to love and to accept love, or at least to work on developing such an outcome. That pledge, combined with an ability to think positively, will be the lesson I hope I never forget.
Another blog, A Pastor's Cancer Diary, is written by Carl. He was diagnosed with non-Hodgkin lymphoma in 2005. His posts are filled with anecdotes and spiritual advice for every day life. Earlier this month Carl reflected on the challenges of cancer:
I realize that, in the cancer world, there are far more serious pains, far more grueling challenges than those I’ve had to undergo. Each fresh obstacle presents its own level of difficulty. Yet, I’m coming to realize this same principle holds true, at every level. God is right there with us. The sound of sheer silence speaks. Together we travel, one step at a time.
Do you write a blog? If so, we’d love to take a look!

Learn more about the lymphomas:


*From Wikipedia.org: Blogosphere is a collective term encompassing all blogs and their interconnections. It is the perception that blogs exist together as a connected community (or as a collection of connected communities) or as a social network.

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