The Leukemia & Lymphoma Society Blog

At February’s third annual Texas Forum on Blood Cancers, Louis J. DeGennaro, PhD and chief scientific officer for The Leukemia & Lymphoma Society (LLS), stressed the need for more clinical trials for blood cancer patients.

 

“Companies may have drugs on the shelf that are approved for other cancers and may work in blood cancers, but haven’t been tested because of lack of money and lack of enough patients,” said DeGennaro at the opening session, “Accelerating the Development of New Blood Cancer Therapies.”

 

In case you didn’t know, LLS is working hard on making sure that more clinical trials are available to blood cancer patients by way of the Therapy Acceleration Program, otherwise known as TAP. The goal of the program is to bypass some of the hurdles that have typically been in place, and to make sure that patients have access to the therapies they need sooner rather than later. The patient can still expect to receive high quality treatment – it’s just going to be there sooner, which can be critical for those who are living with fast-acting cancers.


Learn more about the LLS Therapy Acceleration Program on www.LLS.org and find out more about clinical trials at www.LLS.org/clinicaltrials. Read more about the Forum in Dallas at www.curetoday.com.

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his last week we sat down with Liz, one of our Information Specialists in the Information Resource Center (IRC). Liz has worked at The Leukemia & Lymphoma Society (LLS) for nearly two years interacting directly with patients, caregivers, medical professionals, and anyone else that contacts us with questions about blood cancer.

 

What made you interested in working at LLS?

Previously I worked at a hospital with a variety of patients, but I found that I was interested in working more closely with cancer patients. The IRC is a great environment for this because I am able to work with blood cancer patients and their families on a daily basis.

 

Can you describe what the IRC is and how it benefits people?

It’s a call center where people can call for information about blood cancers, resources on the local and national level, support services and education materials. It empowers patients and family members with information about their diagnosis or other needs when they don’t know where else to turn.

 

What is an Information Specialist, and what do you do in that role?

Our Information Specialists come from backgrounds of social work and public health, and we all have Masters degrees. We provide not only practical resources to the patient or caregiver, but we also provide emotional support because of our one-on-one interaction. We also guide callers through concerns they are having with doctors, treatments, symptoms and side effects.

 

If someone is considering calling the IRC, but isn’t sure what to expect, can you share what usually happens?

Well, first we ask a few questions in order to better assist the caller. We start our by asking for our caller’s phone number in case the phone call is disconnected. We then find out if there is a diagnosis, and when that diagnosis was first made. At that point, we are ready to find out more of what our caller needs from us. Once we have a better understanding of our caller’s situation, we can provide support and resources or help brainstorm the next steps to help them focus on finding a solution. Usually we will provide them with a local LLS chapter contact and the number in case there are resources in their area that they can use.

 

Do many people who call or email have similar concerns?

Yes. A lot of problems that patients face are universal – concerns about insurance coverage (How am I going to pay for this? I don’t have insurance, so how do I get treatment?), financial questions, concerns about their treatment (ranging from doctor-patient relationship issues to getting to treatment), or when it’s appropriate to get a second opinion. We also get emails or phone calls about things in the news, but those questions are not as frequent.

 

If someone asks you what you think about the diagnosis or treatment they are receiving, how do you respond?

I will tell them that treatment is very individualized. There are a variety of drugs and therapies for blood cancers, and no one treatment is the same. A patient’s individual health issues can also have an impact on what kind of treatment they receive. For example, if they have a heart problem they will have a different treatment plan than someone without heart problems. I always share standard treatment information, and if it’s needed I’ll suggest that they get a second opinion from a doctor other than their own.

 

If someone doesn’t speak English or doesn’t live in the United States or Canada, can they still contact the IRC and get help that is relevant to their needs?

Any language is supported with a translation service, and we do have specialists that speak Spanish and French. We also will refer people to other U.S. based organizations that deal with patients and families internationally.

 

How quickly can someone expect to hear back from the IRC if they have to leave a message?

If they call and leave a message, they can expect to hear back from us by the end of the next business day and it’s the same with email. We’re here Monday through Friday, so if they leave a message on Friday then they will get a response from us on Monday. Mail will be responded to promptly, so they should see something in the mail in three to five days.

 

Would you recommend any other ways for people to learn about the IRC?

If you have a question about a blood cancer, the Information Resource Center is available to speak with callers Monday through Friday from 9am to 6pm EST, and 10am to 5pm ET the same days for live online chat. You can reach the IRC at (800) 955-4572 or by email. Learn more about some of our other IRC staff and how they handle patient and caregiver questions on My Clinical Trials Journey, an interactive website.

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Good news for iPhone users – you can now download an application that allows you to get information from The Leukemia & Lymphoma Society (LLS) whenever and wherever you want! That’s right – we’ve teamed up with MedicinePhone.com as one of the organizations that supplies cancer news and information via the TouchOut™ Cancer application.

 

All you need to do is download the application (it’s free for a limited time) and then enter in your profile information. Every day that you use TouchOut™ Cancer you’ll get new cancer news and information. If you find the information relevant or helpful you can tap “TouchOut Up” – if not, then tap “TouchOut Down”. If you’ve added friends to the app all articles you found relevant by tapping “TouchOut Up” will be sent to them once a month (they can opt out of getting these articles from you if they don’t like receiving them).

 

 

We at LLS believe that it’s critical that patients, caregivers and medical professionals have easy access to the most up-to-date news and information about blood cancer. If you have an iPhone or iPod touch this can be another great way for you to stay plugged in with LLS and blood cancer news. We’re working closely with the team at MedicinePhone.com, so stay on the lookout for new features and capabilities.

 

Download the TouchOut™ Cancer application via the iTunes Store. Remember, it’s free for a limited time, so grab the application now!

 

Have you downloaded it and want to share your feedback? Email info@medicinephone.com with your comments.

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