Tag Archive for: CLL Society

Educational Resources for CLL Patients

Educational Resources for CLL Patients from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients learn more about their disease? Dr. Seema Bhat recommends resources and online communities for CLL patients looking for more information. 

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

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Transcript:

Katherine:

Many CLL community members are interested in learning more about their disease. So, for newly diagnosed patients, what are a few educational resources you recommend to help them learn more about their condition? 

Dr. Bhat:

There are a number of well-established support groups or educational resources for our patients. These include the CLL Society, The Leukemia & Lymphoma Society, Lymphoma Research Foundation, and then we have Patient Empowerment Network, and we have Patient Power. All these resources provide support groups, organize webinars, and have educational material for our patients. 

Katherine:

What about patients who have been living with CLL for many years, or are quite knowledgeable about their disease? Are there more advanced resources for patients to stay up to date on the latest research and treatment? 

Dr. Bhat:

So, for patients who want to search for additional resources, especially looking for clinical trials, going on this website called clinicaltrials.gov, they can first search for CLL-related clinical trials. Also, NCCN, or “National Comprehensive Cancer Network,” has patient resources for each disease, and then they can find information on CLL there, also. I would also like to say that Google is a good resource, as long as you know where it is taking you. 

Katherine:

Exactly. You may not be able to rely on everything you find. 

Dr. Bhat:

Right. 

Addressing Racial Disparities in CLL Care

Addressing Racial Disparities in CLL Care from Patient Empowerment Network on Vimeo.

How are CLL racial disparities being addressed? Dr. Adam Kittai explains abstracts presented at the American Society of Clinical Oncology (ASCO) 2022 conference that examined CLL disparities and shares resources for patients who feel they’re struggling to receive equitable care. 

Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.

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Transcript:

Katherine:

We touched on research at the top of the program, but are there other areas of research that you’re excited about and that patients should know about? 

Dr. Kittai:

Yeah, so one of the things that I think is being really talked about in cancer care – and medical care in general – is if disparities exist between minority patients and white patients. And I think this is a really, really important topic.   

So, the American Society of Clinical Oncology, which had the conference recently, really made this a mainstay point of the conference this year and there were a lot of abstracts that were defining whether disparities exist and hopefully, by defining whether disparities exist, we’re able to target those disparities in order to make outcomes equal for all of our patients.  

So, in the CLL world, one of the things that I alluded to is a lot of our therapies can be really expensive. So, these new therapies are really expensive, they really widen the disparity gap for patients who are minorities, as well as patients who come from socioeconomic status.  

Katherine:

Absolutely. 

Dr. Kittai:

And so, there were two abstracts. One was an oral presentation that looked at the National Cancer Database in ASCO that showed that Black patients do have worse overall survival than white patients. And then, I actually did my own study looking at the SEER database, which also showed the same exact thing. Even when controlling for socioeconomic status.  

So, I think addressing these disparities, making sure that there’s equity amongst our patients, that everyone has access to these drugs and can afford them, especially when they make our patients live longer and are safer than chemoimmunotherapy in CLL is very, very important.  

Katherine:

Dr. Kittai, if a patient feels like they’re not getting equitable care, are there resources available for them?  

Dr. Kittai:

Yeah, so one of the things that I love about the CLL society, is that they have a section called Access an Expert, I believe. So, look on the website, I’m not sure it’s actually called Access an Expert, but it’s a way for all patients to get a second opinion from one of the CLL experts listed on the website. And so, if somebody is feeling like they’re not getting access to the most beneficial treatment, for whatever reason, seeking a second opinion and using the CLL Society’s website to find that second opinion, I think would be a great way for someone who feels that way to get access to the care that they deserve.  

I believe there are other ways to do this through the Lymphoma Research Foundation, as well as LLS. But I know for sure on the CLL Society, there is a link that you can click that you can get access to a second opinion.  

How Can CLL Patients Find Clinical Trials?

How Can CLL Patients Find Clinical Trials? from Patient Empowerment Network on Vimeo.

Finding a CLL clinical trial can feel overwhelming for some patients, so where can they start? CLL expert Dr. Adam Kittai shares advice, credible resources, and provides key questions to ask about trial participation.

Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.

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Transcript:

Katherine:

Now that we know what trials are and how they work, how can people find out what trials are available to them? 

Dr. Kittai:

Yeah. So, I’ll come back to this, but once again, talk to your physician. They’ll know what clinical trials are available at whatever site you are seeing them in. If there’s a local academic sector, the academic sector typically has clinical trials available there as well. So, it’s always good to get a second opinion in that regard.  

But one of the open access places that you can find all clinical trials is clinicaltrials.gov. This has all active running clinical trials listed out and anyone can access it. There are other societies out there that often post about clinical trials. So, there’s the CLL Society. It’s a website that you can check out that has a lot of information on there about active clinical trials in CLL. There’s also The Leukemia & Lymphoma Society, the Lymphoma Research Foundation, they all have websites available that have a lot of clinical trials listed and how to access them.  

Katherine:

Are there key questions that you think patients should ask their health care team about participating in a trial?  

Dr. Kittai:

Yeah, for sure. I think one of the key questions to ask is, is the control arm appropriate. So, what do I mean by that? Sometimes people who design a clinical trial will design a trial where the control arm is an easy control arm to beat, meaning that it’s a treatment that we wouldn’t necessarily put you on as standard of care.  

And so, I think this is a real question and an honest question that you should ask your physician prior to enrolling on a trial is, is the control arm something you would give me as standard of care. And if the answer is no, you should really consider not going on that trial or talking about why you would want to go on that trial if the control arm is not something they would put you put you on as standard of care.  

Katherine:

Right. 

Dr. Kittai:

That’s, I think, a key question to ask. And again, asking what phase it is and understanding where we are in the development.  

Why You Need a CLL Specialist

vWhy You Need a CLL Specialist from Patient Empowerment Network on Vimeo

Why should you seek care with a CLL specialist? Dr. Brian Hill outlines the benefits of seeing a CLL expert and advice for approaching a second opinion. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert

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Transcript:

Dr. Brian Hill:

Patients should consider seeing a CLL specialist because oncology is a very complicated field. There are many different types of cancers that oncologists treat. And particularly in smaller hospitals, maybe with general oncologists who see lung cancer, colon cancer, breast cancer and CLL as well as many other types of – patients with many other types of problems. It’s very difficult to stay 100% up to date on all those fields. All of oncology is very rapidly evolving.

And the progress that’s being made in all the diseases I mentioned is very fast paced. And so, things change. And there’s new data emerging all the time. And CLL specialists or lymphoma specialists are able to stay more up to date on these topics. And usually that can result in maybe better options for patients.

So, we often get second opinions or third opinions for patients with CLL.

And one of things patients are understandably concerned about sometimes is the impact this will have on their primary oncologist. Maybe they are from a smaller town or have a smaller hospital. They have an oncologist, hematologist, gynecologist who they like, and they trust, and they don’t want to hurt their feelings or damage the relationship because they may need their primary or local hematologist, oncologist to help them if they are sick or something goes wrong.

So, I think that most oncologists recognize that – again, the field is very complicated. And it’s common for people to seek opinions from referral centers. So, I would say the best thing is to be up front about it. And explain to their primary that it’s not that they don’t like them or don’t trust them.

But it’s important – it’s their health. And they really want to make sure they have another set of eyes. And I even sometimes encourage my own patients that if they have questions about what I’m talking to them, to welcome another opinion. And if there’s good communication about it, I don’t think that you should be concerned about the sort of hurt feelings aspect of it.

How Can The CLL Society Help You?

How Can The CLL Society Help You? from Patient Empowerment Network on Vimeo.

Dr. Brian Koffman, co-founder of The CLL Society, explains its mission and goals. Dr. Koffman reviews programs and services that assist chronic lymphocytic leukemia (CLL) patients and their loved ones.

Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.

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Transcript:

Dr. Koffman:              

Hi, I’m Dr. Brian Koffman. I’m a retired family doctor, and I’m the cofounder, chief medical officer, and executive vice president of the CLL Society. And, what, you ask, is the CLL Society? Well, the CLL Society is a 501(c)3 not-profit that focuses on the unmet needs of the CLL community in terms of supporting, educating, advocating on behalf of, and researching what needs to be done in the CLL community.

The CLL Society is very proud of the programs that we offer. So, among the programs that we offer, the backbone is a website that covers everything from the very basic kind of information – frequently asked questions – to really the latest research that’s coming out.

Also, on the website, CLLSociety.org, we have a whole toolbox, and in that toolbox, there are lists of acronyms. There are links to other CLL resources. There are links to CLL experts around the country. There are spreadsheets to help you with your lab sheet – lab results so you can follow them and mark the trans-Excel spreadsheet. We also do trial educational forums across the country with places like MD Anderson, Dana-Farber, or the National Institutes of Health.

And, we have 30-plus support groups in Canada and the USA that meet generally on a monthly basis, so there’s a peer-to-peer interaction, and we provide education to all of those. And, one of the programs that I’m most proud of is for patients who don’t have access to an expert. We provide free virtual consultations with CLL experts from the top institutions through a Zoom-type platform that’s HIPAA-compliant so patients can ask their questions to a remote expert, that expert reviews their medical records, and then to their local hematologist so they get the benefit of a consult that they wouldn’t otherwise.