The Leukemia & Lymphoma Society Blog

Thanks to you, Congress overrode the presidential veto of Medicare bill, sparing patient access to RITs

millss — Thu, 17 Jul 2008 18:14:48 GMT

Tuesday, July 15, President Bush vetoed The Medicare Improvements for Patients and Providers Act of 2008 (H.R. 6331). However, Congress acted quickly to override the veto – the House voted 383-41 and the Senate voted 70-26 – that would have, among other things, cut Medicare reimbursement rates to doctors by nearly 11 percent.

The bill was of particular concern to blood cancer patients as the bill included a provision to extend the “freeze” on the Medicare reimbursement formula for radioimmunotherapies (RITs), Bexxar and Zevalin, which are used to treat non-Hodgkin lymphoma, by 18 months. Without such a freeze, RIT reimbursement rates would be drastically reduced and access to this valuable therapy would be threatened for many lymphoma patients.

Advocates from The Leukemia & Lymphoma Society and other organizations promptly contacted their elected officials and urged them to override the veto. Thank you to all of the advocates that took a moment to ensure that lymphoma patients have access to these potentially life-saving treatments.

Not sure what "RITs" are? Download our PDF on Radioimmunotherapy as a Treatment for Lymphoma or read about it online.

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?

Chapter Education Resources: Attend a local information session on blood cancer

millss — Tue, 10 Jun 2008 14:32:44 GMT

If you’re the type of person that likes to have face-to-face interaction you may enjoy our local Chapter Education Programs. We have several types of local events, but if you or someone you know has been diagnosed with a blood cancer you may appreciate the disease and support information you can gather at our Chapter Education Programs. You can go to our Chapter Education Programs page for details about the following free local programs:

Getting the Best Cancer Care at Any Age
This program is focused on cancer treatment for older adults.

New Directions in Myeloma Therapy
Learn more about the latest medical directions in the treatment of myeloma and drug therapies, then ask questions during the Q&A session.

The Path to Progress: Clinical Trials in Blood Cancers
This program is great for anyone dealing with any of the blood cancers, and who may be interested in learning more about what it means to participate in clinical trials.

Fill out the form at the bottom of the page to be kept in the loop about schedules for the programs of interest to you.

You can also go to our Chapter Finder page to access information on other local chapter events or resources that are close to you.

Have you ever attended any of our local programs? If so, what did you think?

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.

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?

May Research Commentary on Blood Cancer Research

millss — Wed, 21 May 2008 18:28:12 GMT

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.

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.

Tell Us Your Story!

millss — Fri, 09 May 2008 15:32:29 GMT

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.

Lymphoma in the Blogosphere*

millss — Mon, 05 May 2008 18:15:29 GMT

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:

Read more on our Lymphoma section on lls.org.
Download the free The Lymphomas booklet (.pdf).
Listen to past audio teleconferences accessible via our Lymphoma Education Series section on www.LLS.org.

*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.

Taxes and Medical Expenses – What you need to know

millss — Fri, 11 Apr 2008 19:37:01 GMT

April 15 is fast approaching. For those of us who haven’t submitted our tax returns to the Internal Revenue Service (IRS), here’s some information about deductible medical expenses that may make tax time less stressful. There’s a whole list of possible deductions from acupuncture to transportation on the IRS website.

Here are a few things that you may be able to deduct if you or certain family members have medical expenses related to a blood cancer or other medical conditions:

Capital Expenses – These would include special equipment that you’ve installed in your home, or actual renovations to your home that is in direct relation to your condition (for example, widening doorways for wheelchair access).
Hospital Services – This would include inpatient care at a medical facility (for example, meals and lodging related to medical care).
Medical Conferences – Being able to deduct this would require that you have attended the conference in direct relation to the patient’s illness, but note that meals and lodging cannot be included.
Nursing Services – These services can be in home or in another care facility.
Wig – In general, you can deduct the cost of a wig purchased with a physician’s advice for a patient who has hair loss that is disease-related.

A few things to keep in mind:

Use Section A, Form 1040 to report medical deductions. Learn more about how to fill out this form.
To submit medical deductions, you need deductible expenses that equal more than 7.5% of your adjusted gross income. Let’s say your adjusted gross income is $50,000. You would need to have at least $3,750 in medical expenses to be eligible for a deduction.
You can only deduct medical expenses that were paid this year. In other words, what matters is when you or your dependents paid for medical procedures or devices, not when you received them.
A list of things that you will not be able to deduct can be found on the same page as the list of expenses you can deduct.

Even if you have already submitted your tax return to the IRS for 2007 this is information that can be of help for next year. If you expect to continue to pay for medical expenses this year, make sure you keep your records handy for when you meet with your accountant or when you fill out your taxes.

Find more information about your finances and health matters.

Have you already turned in your tax return? Do you have ideas to share about organizing your tax receipts, especially medical expenses?

Sexuality, Cancer and Quality of Life

millss — Mon, 07 Apr 2008 20:17:48 GMT

Spring finally arrived a couple of weeks ago. The weather is still a little chilly here in New York, but the temperatures are definitely trending upward. Before you know it the flowers and trees will start blooming all over again, and I’ll want to write blog posts from the shade of a tree instead!

Spring can be invigorating after a long, cold winter. But for couples who are dealing with the effects of cancer and its treatment, the arrival of spring may not feel the same. This may have been a season you've associated with spending more time with your partner--taking walks, holding hands and showing affection. It's natural to want to relate to your partner in intimate ways...to touch, hug and kiss, to give and receive love. But people with cancer sometimes feel removed from sexual and intimate experiences for any number of reasons.

Some patients or their partners may feel that

These are not life or death issues and don't deserve their attention.
Sex should be the last thing on one's mind.
They are being selfish for being concerned about sex.

Sexuality is not just about physical needs, but also about psychological, social, emotional and spiritual factors. It includes self image, body image, reproductive ability, emotional intimacy, sensual feelings and sexual functioning. Discussing sexuality-related concerns may be important to your quality of life in areas that are not limited to sexual functioning, such as, feeling comfortable with yourself and enjoying close communication with loved ones.

Learn more about how can you cope when your cancer has affected your sexual and intimate relationships by downloading our Sexuality and Intimacy fact sheet.

Also take some time to listen to our recent teleconference, Sexuality and Intimacy After Cancer, a telephone education event that featured Sage Bolte, MSW, LCSW, OSW-C.

Consider sharing your experiences here. Has cancer affected your relationship with your partner? How have you and your partner handled this?

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.

The costs of cancer

millss — Fri, 21 Mar 2008 13:41:33 GMT

Unless you’ve been hiding somewhere, you’ll know that the economy is having a little bit of a tough time right now. The headlines I’m seeing as I’m typing this are:

“Cash strapped, and driving less”
“The next shoe to drop in housing”
"Financial markets looking for bottom”
“A slice of pizza gets pricier” (And yes, that’s a real headline – and a real shame for pizza lovers.)

It’s not easy dealing with a strapped economy when you’re well, let alone when you have a disease like cancer. You might already be feeling uneasy about your job, retirement income, and assets. On top of everything else you now have medical bills. It’s crazy, and it’s making you crazy (I would be anyway).

The Leukemia & Lymphoma Society (LLS) can’t solve all of your financial woes, but we have a few resources that may be able to help you find some relief.

Patient Financial Aid – This program reimburses for some medications, transportation costs, and procedures.
Co-Pay Assistance Program – This program helps with co-pay and prescription medication costs.

There is also a wealth of advice about your employment rights as a cancer survivor, issues with insurance, and other programs that help with prescription drug coverage.

Finally, there is an archived teleconference in the Survivorship Education Series section of the LLS website called, “Cancer Survivorship: Practical Tips for Managing Your Financial and Insurance Issues.”

What do you do when your medical bills become too high? Are you going through this now?

If you think someone you know would benefit from this information share this blog post with them.

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.