Tag Archive for: treatment

How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources from Patient Empowerment Network on Vimeo.

If you need help paying for myeloma care, where do you start? Yu Mee Song, an oncology social worker, reviews several resources, including copay assistance programs and advocacy groups.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

Related Resources:

360 Myeloma Care: How Can a Social Worker Help

360 Myeloma Care | How Can a Social Worker Help?

The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join

Is There Financial Assistance for Myeloma Patients

Is There Financial Assistance for Myeloma Patients?

Transcript:

Katherine Banwell:

Yu Mee, many of the newer myeloma therapies can be quite costly. If a patient is seeking financial support, where would you suggest they start? 

Yu Mee Song:

Many of the pharmaceutical companies provide financial assistance  if you meet their eligibility criteria.   

So, you can start there with – with the help of your oncology social worker. There are other great organizations that provide a significant  copay assistance and also  reimbursement with your insurance premiums and coinsurance. Some of the ones that we use often are, Leukemia & Lymphoma Society, HealthWell Foundation is another great organization, PAN F is another organization that provide copay assistance, and P-A-F Copay Relief Foundation.  

Katherine Banwell:

Okay. And, uh – uh, you as a social worker would have that information for a patient to – to direct them in the – the right path. 

Yu Mee Song:

Yes. Yeah. Because they would also need assistance from us and the physician, verifying certain – that they’re in treatment.  

 Katherine Banwell:

Right. Yeah. That makes sense. 

The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join from Patient Empowerment Network on Vimeo.

How might joining a support group benefit you when coping with a myeloma diagnosis? Yu Mee Song, an oncology social worker, discusses the value in peer-to-peer connection and shares tips and resources for finding a support group.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

Related Resources:

360 Myeloma Care: How Can a Social Worker Help

360 Myeloma Care | How Can a Social Worker Help?

How Can Myeloma Patients Cope With Fatigue

How Can Myeloma Patients Cope with Fatigue?

How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources

Transcript:

Katherine Banwell:

Yu Mee, what is the value of myeloma support groups? And how would you encourage someone to join if they’re hesitant? 

Yu Mee Song:

So, it’s – it’s – it’s not for everyone. And you may need to try more than one support group to find the one that’s a good fit for you. But it does provide a sense of belonging and the decreased feeling of isolation, like you’re going through this alone, to be in a group with others who – who kind of – who get you. And I’ve had a lot of people say, you know, it’s really , really hard to talk about this – what I’m going through – with my friends or family they just don’t get it. And it’s so good to see – and  we facilitate some groups here for newcomers to join. And as soon as they, you know, speak about something and the whole group chimes in and, yes, we know what you’re going through and give their – share their story and their experience. And it’s so inspiring and encouraging for them. 

Katherine Banwell:

Yeah. It’s incredibly valuable.  

Yu Mee Song:

They share all sorts of tips on things like side effects and – or how to – how to talk to your doctor about something if you’re uncomfortable bringing it up or, um, even asking for help about, um, you know, for counseling or more emotional support that you may be embarrassed to ask about.  

Katherine Banwell:

How would a newly diagnosed myeloma patient find out about something like a peer-group session or peer support? 

Yu Mee Song:

There may be some local. But now there are many national organizations that you can tap into. I would start, again, like, ask – speaking with your oncology social worker. But I would start with some of the national organizations like Multiple Myeloma Research Foundation, International Myeloma Foundation, The Leukemia & Lymphoma Society, platforms like this the Patient Empowerment Network, or HealthTree.  

So, if you start with any of the big myeloma organizations, they can help guide you. There are patient navigators that can kind of guide to your – provide guidance to what you’re looking for, whether it’s peer-to-peer support, support group, or other resources.  

Advice for Myeloma Patients Undergoing CAR T-Cell Therapy

Advice for Myeloma Patients Undergoing CAR T-Cell Therapy from Patient Empowerment Network on Vimeo.

How can patients undergoing CAR T-cell therapy be prepared? Yu Mee Song, an oncology social worker, shares three key pieces of advice for patients and care partners getting ready for CAR T-cell therapy.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

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Considering CAR T-Cell Therapy For Myeloma? Key Questions to Ask Your Doctor.

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The Value of Myeloma Support Groups and How to Join

How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources

Transcript:

Katherine Banwell:

For patients who are considering CAR T-cell therapy, what three key pieces of advice would you have for them?  

Yu Mee Song:

I think it’s really important to have someone accompany you to maybe the initial consultation.  

Or if they can’t physically be with you to have them available by phone or to listen in on a conference call because there’s so much information that’s provided. It’s – it’s a multi-step, complicated process, so it’s good to have a – another set of ears helping you to stay organized, take notes maybe, keep a calendar.  

Another thing is to plan ahead. Plan for time away from work. You may need to apply for FMLA. If you are a caregiver of young children or older parents, make arrangements for that. Especially if you live a distance from the treatment center, you may need to stay  close to the hospital for a couple of weeks after your discharge for your CAR T-cell infusion.  

Katherine Banwell:

Yeah.  

Yu Mee Song:

And then I would say another tip is to stay connected to home, so there are many online forums that you can use to – for – for your friends and family to provide support in that way and for you to share information. And maybe bring pictures or something cozy from home to remind you of home because you will be – be away for some time.  

360 Myeloma Care | How Can a Social Worker Help?

360 Myeloma Care | How Can a Social Worker Help? from Patient Empowerment Network on Vimeo.

When coping with a myeloma diagnosis, how can a social worker support you in your care? Yu Mee Song provides an overview of the role of a social worker in myeloma care and discusses the importance of speaking up about emotional issues and beyond.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

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How Can a Social Worker Help CAR T-Cell Therapy Care Partners

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The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join

How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources

Transcript:

Yu Mee Song:

My name is Yu Mee Song. I am, a social work program coordinator in the Multiple Myeloma Program at Mount Sinai Hospital.  

Katherine Banwell:

Excellent.  

Yu Mee Song:

Thank you for having me.  

Katherine Banwell:

Thank you for joining us. Can you tell us more about the role of a social worker as it relates to myeloma care?  

Yu Mee Song:

First of all, I feel very, very fortunate to be working in the myeloma program amongst world-renowned myeloma specialists with a team of nurse practitioners, nurses, transplant and CAR T coordinators, patient navigators.  

And our social work team is a team of five. And we can receive referrals from any of these team members at any point in a patient’s journey, from the moment of diagnosis throughout their treatment trajectory in both the inpatient and the outpatient settings for emotional needs and support to practical needs. 

Katherine Banwell:

Yu Mee, when a myeloma patient comes to see you for the first time, what are some common concerns they might be having? 

Yu Mee Song:

That really depends on the – on the patient and – and where they are in their life situation when they’re diagnosed. You know, if they’re working, they may have considerations about reducing work or not working or not being able to. A lot of practical concerns, maybe the first issue that they have to deal with such as transportation and getting to and from the cancer center now three times a week, or navigating the healthcare system for the first time in their life, and insurance or just coping with the fact that you’re now dealing with the diagnosis of myeloma and what does that mean and how are you adjusting to this? So, it really varies.  

Katherine Banwell:

If patients are facing emotional issues, why is important for them to speak about it? And – and what support is available for them? 

Yu Mee Song:

That’s – that’s a great question that I always like to stress the importance of to the patients and also the caregivers because they’re usually the ones that first notice any changes, maybe in their mood or the emotional state.  

If you’re holding things in, you’re, you know, feeling like you’re alone in this fight or your fears of what might happen, that can increase your anxiety, it might lead to depression.  

So, it’s really important to speak about it, ask your care team about it. It may be as simple as, you know, that’s a side effect of a medication that you’re on, and maybe we can reduce the dose or maybe we can tell you to take it at a different time of day. 

And that’s so helpful to know that.  

There may be help for you. You may be referred to a mental health professional, support groups, and would also improve your – your relationships within your family because obviously your emotional state it’s – it, you know, myeloma is just not impacting you but all of the loved – people around you.  

Katherine Banwell:

That leads us into the next question. Some patients don’t have a partner to help them go through this – this journey with their myeloma. So, do you have any suggestions for how myeloma patients can find support and where? 

Yu Mee Song:

I would say, first start with asking your care team or ask – speaking with an oncology social worker. Support doesn’t necessarily mean your – your partner. It can be in the form of support groups that are either in-person, there are many groups online.  

It could be a peer – one-on-one peer support. Someone who’s gone through what you’ve gone through.   

CAR T-Cell Therapy Care Partners | What Do You Need to Know About the Process?

CAR T-Cell Therapy Care Partners | What Do You Need to Know About the Process? from Patient Empowerment Network on Vimeo.

What is the role of the care partner when a loved one is undergoing CAR T-cell therapy? Registered nurse and transplant coordinator Sarah Meissner is joined by Adrienne, a care partner, as they discuss the importance of care partners in the CAR T-cell therapy process. They review key questions to ask the healthcare team, explain patient side effects to monitor for, and share resources that can help support care partners throughout their loved one’s recovery period.

Sarah Meissner, RN, BSN, BMTCN, is a Blood and Marrow Transplant and Related Donor Search Coordinator at the Colorado Blood Cancer Institute. Adrienne is a Care Partner to her husband, who underwent CAR T-cell therapy.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Download Resource Guide

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Are You A CAR T-Cell Therapy Care Partner? Why You Should Ask for Help.

Transcript:

Katherine Banwell:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’re going to discuss the role that care partners play in supporting their loved ones who are going through CAR T-cell therapy. Before we meet our guest, let’s review a few important details. The reminder email you received about this webinar contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the program. At the end of this webinar, you will receive a link to a program survey. This will allow you to provide feedback about your experience today and it will help us plan future webinars. 

Finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. 

Well, let’s meet our guest today. Joining me is Sarah Meissner. Sarah, welcome. Would you please introduce yourself? 

Sarah Meissner:

Hi. My name is Sarah Meissner. I am a transplant and CAR T coordinator at the Colorado Blood Cancer Institute in Denver. And I have been working with blood cancer patients for 13 years and in my current role for 8. 

Katherine:

Excellent. Thank you so much for being with us today. And here to share the care partner perspective is Adrienne. Adrienne, welcome to the program. 

Adrienne:

Thank you for having me. 

Katherine:

So, let’s begin by learning more about Sarah’s role. Sarah, can you explain what you do as a transplant coordinator at CBCI? 

Sarah Meissner:

Of course. So, I like to say that as a coordinator, I am kind of the travel agent of the CAR T process. So, I meet with the patients when they are determined to be a candidate for CAR T-cell therapy.  

And I act as kind of the intermediary between the patient and the care team. I help them get set up for all of their appointments as well as provide education for what’s going to be occurring. 

 Katherine:

Okay. So, when someone is undergoing CAR T-cell therapy, who are the essential members on their healthcare team besides you?  

Sarah Meissner:

We have a pretty big care team. So, of course, we have the physician who is kind of at the helm for determining the care plan. We also have financial coordinators, social workers, dieticians, as well as the nursing team who will be providing the care to the patient. 

Katherine:

So, how many people could be on a team?  

Sarah Meissner:

It could be as many as 10. It just depends on the individual patient’s needs and how different people can help. 

Katherine:

How do you, specifically, work with CAR T-cell patients and care partners? 

Sarah Meissner:

So, I am their main contact during the process. So, any questions that come up that I can help with, I’m there via phone, email, in person meetings. I also am big in education. So, sitting with the patient when they’re in clinic and helping them understand what this treatment is, why we’re doing it, what they can expect and just helping them through the process. 

Katherine:

Great. Adrienne, I’d like to turn to now to you and find out more about your experience. How did all of this begin for you and your husband? 

Adrienne:

This all began with my husband and I, we both are very active, and we work out a lot. And he had some pain in his lower back and his groin area. 

And we started going to physical therapy and a chiropractor. And the chiropractor was doing besides just chiropractic, he also did physical therapy stuff, too. His pain wasn’t getting any better. And after a few months, he called to get an MRI and that’s when they found his myeloma was in the MRI. Because of his age, he was diagnosed in 2018 at I’m trying to think how old he was. He was around 37. So, it was a very early diagnosis maybe but he definitely was on the young side of having this kind of cancer. So, that’s how we found out.  

And then after that, it was just kind of a whirlwind on how we would care for him and what we needed to do to get him better. 

Katherine:

Yeah. It must have been hard.  

Adrienne:

Yeah. It was hard. 

Katherine:

What was the process like for you as his main care partner?  

Adrienne:

My role once he was diagnosed was just to do everything I could to find out. We didn’t really know about the disease before. So, to find out what the best care for him was. We did a lot of research. We ended up going to several doctors before deciding what treatment plan we were going to go with. 

And then, he had some ups and downs, some failed treatments. And that’s where we went into CAR T, because we had so many failed treatments before.  

Katherine:

Did you feel like you were doing a lot of research? Were you doing a lot of homework Googling stuff? 

Adrienne:

Well, kind of trying to but we were also told not to do that too much, because it’s always the worst-case scenario online. But we did that somewhat and we got as much information from each institute we went to. And we went to, like I said, we went through three, and then we ended up at CBCI at the end where we are now.   

So, we started to discover that the first few lines of treatment were pretty standard. When you’re put into a situation where you find out your spouse has cancer, all you want to do is you want to find the magic miracle that’s going to cure them. And we did have to just go through the steps of standard care first. And we’re hoping that this CAR T-cell works. It’s working really well right now.  

Katherine:

I was just going to ask you, how are you and your husband doing now? 

Adrienne:

We’re doing pretty good. He’s still very tired. He’s, actually, taking a nap right now. And he has ups and downs. He definitely feels a lot better overall. He is getting back to normal life. But there are times where he just doesn’t feel quite right and has some physical pain and some cognitive issues. 

And we don’t really know if that’s from CAR T alone or if it’s also just from the last five years of having chemo and bone marrow transplant and all of the care before the CAR T-cell. 

Katherine:

Sarah, can you answer that question about cognitive difficulties that Adrienne’s husband is having? 

Sarah Meissner:

Yeah. So, it is pretty common to have what we call chemo brain after any treatment really. And in the case of Adrienne’s husband, he’s had several rounds of chemotherapy going into the CAR T treatment. So, it can be kind of an accumulative effect of all of that. And it is something that people struggle with post-treatment. 

It’s kind of a brain fog, not remembering things. So, working with the team and neurologists can be helpful in some cases. So, that is something that we see. 

Katherine:

Well, let’s shift the conversation a bit to learn more about how the CAR T-cell therapy process works. Sarah, would you walk us through the typical path? 

Sarah Meissner:

Of course. So, it is a pretty protracted treatment. It starts off when the patient is determined to be a CAR T-cell candidate. 

At that point, we are looking at getting testing to confirm that eligibility so based off of disease process as well as performance status and organ function. So, there are a series of tests that are done, and then those are sent to the insurance company in order to obtain authorization for treatment. After we have received the authorization, then the patient consents for treatment with their physician where we review the plan of care, side effects, risks, benefits, all of that. And then the T-cell collection takes place. So, this is a one day, outpatient procedure. We put a temporary catheter into the patient that goes into their neck and we use this to collect the T cells. 

So, the patient gets hooked up to an apheresis machine, which kind of looks like a dialysis machine. And it filters the patient’s blood.  

It takes blood out of the patient’s body, goes into the machine into a giant centrifuge where the blood is separated into different densities. And then, the T-cells are extracted from the density of the blood where it is and then, taken out and collected in a bag. This is a three- to four-hour process usually and then, when we are finished, we are left with a bag of T cells. Those T cells are then shipped off to a manufacturing site for the specific pharmaceutical company that is going to be manufacturing the patient’s T-cells. And that can take anywhere from three to eight weeks depending on the product.  

During this time period, most patients have an active blood cancer that is going to need some treatment while we’re waiting for those cells. So, it is something we call bridging therapy. They may or may not receive that depending on what’s going on in their case.  

After the T cells are manufactured, they get shipped back to our center as a frozen block. And we have the patient come back in. They get a few days of chemotherapy. We call this lymphodepleting chemotherapy. So, this isn’t chemo that’s meant to treat the patient’s disease but to suppress their immune system so that when we put these CAR T cells back into their body, the patient’s immune system doesn’t fight them off before they can do their job. So, that’s typically two or three days depending on which products the patient is getting and which disease is being treated.  

Then, they get a few days off and then, that frozen block of cells is brought out of the freezer, brought to the patient, thawed in a water bath that looks kind of like a hot dog cooker. 

 Katherine:

That’s an odd image. 

Sarah Meissner:

There is water in there that’s heated to body temperature and the frozen block of cells is thawed.  

And then, those cells are infused into the patient’s body and go to work to fight the patient’s cancer. 

Katherine:

What is the care partner’s role in helping the patient through this process? And why are care partners so critical for a patient’s recovery? 

Sarah Meissner:

So, the care partner is a huge part of this process. After the cells are infused, there is a 30-day close monitoring period. And it’s a requirement for our center that the patient have a 24/7 caregiver during that time. There are a lot of side effects that can happen, and the patient is not going to be able to drive for two months. 

So, they need somebody with them at all times to be monitoring for these symptoms as well as bringing them to their appointments, helping them with their medications, day-to-day stuff at home as well. 

Katherine:

Adrienne, if you don’t mind, what sort of side effects did your husband have?   

Adrienne:

He had from the immunosuppressing chemotherapy, he had really low numbers for a while and that just made him feel pretty bad. And he didn’t have any really bad side effects where we had to go to the hospital. Well, I guess we did a few times. He had just a little bit of fever, which you have to report and make sure that it’s okay. 

So, we did have to go twice. But it really didn’t end up being anything too bad. He did have a fall down the stairs at our house. So, if we did it different, I think because we had to be there every day for two weeks and the monitoring, I think that we would probably have rented a hotel that didn’t have these stairs just because he’s used to going up and down the stairs, but I don’t know if he just lost his footing. But it was extremely scary with everything else that he was going through. And that might have been part of the cognitive thing. I feel like most of his side effects, actually, started hitting months after the cognitive things. 

But the stress was more on just caring for him and making sure that he was okay and just being ready just in case something happened. 

Katherine:

Yeah. It’s like being on high alert 24/7. 

Adrienne:

Correct. 

Katherine:

Sarah, could you describe some of the common side effects? 

Sarah Meissner:

Yeah. So, there are two main sets of side effects that we’re looking for with CAR T therapy. The first is something called cytokine release syndrome. So, this happens when the CAR T cells latch onto those cancer cells and kill them and stuff gets put out into the patient’s blood stream. That can cause what’s called a cytokine response. And it’s, basically, proteins that cause inflammation. So, common side effects that we see with that are fever, low blood pressure, high heart rate. 

Some people need some oxygen. It looks very similar to what we would see in sepsis or a severe infection. The good news about that is there is a medication that’s very effective in treating cytokine release syndrome. And so, that’s why it’s important for the caregiver to notice these things and bring them into the hospital so they can get that treatment right away. The other set of side effects is something called neurotoxicity. So, if you think of the brain as a group of wires that is sending signals throughout the body, with neurotoxicity, those wires can kind of get jumbled. They’re not necessarily cut. This isn’t an irreversible thing. 

They get jumbled and can kind of mix up those signals. So, we can see patients that are confused. Patients can have seizures. We start everybody on anti-seizure medication as a prevention method. They can get a tremor and we can see changes in their handwriting. 

So, we assess for this twice a day during those first 14 days by asking them a simple set of five questions. To name certain objects, to count back from 100 by 10, ask them what day it is, that kind of stuff and then, to write out a sentence. And we can see subtle changes in that functioning in the handwriting. So, this like the cytokine release syndrome, if we start to see it, there are medications that we can use to treat it. We usually put people in the hospital for a little closer monitoring. But these are things that the caregiver usually will catch onto before the care team because they know them best.  

And they can catch onto those subtle changes maybe in their personality or little confusion or stuff like that.  

Katherine:

Well, that leads me to the next question, which is what sorts of questions should care partners be asking their team? 

Sarah Meissner:

Yeah, definitely. 

So, they should be asking what they should be looking for, what side effects would constitute something that they need to report. They should be asking, “Who are we reporting to, what phone number or who are we reporting these things to?” Those are the main things to be looking for. We use a home monitoring system at our center. So, maybe some specific questions about monitoring dependent on your center and how they’re having the caregiver look for these side effects. 

Katherine:

Adrienne, based on your experience, are there any questions that you would recommend care partners ask their healthcare team?  

Adrienne:

I think that it’s kind of one of those things where you have to experience it. I feel like I did have all of my questions answered. 

But at the same time, you don’t really know what you’re getting into until it’s actually happening. 

Katherine:

Right. 

Adrienne: But back to the cytokine syndrome, my husband did have this effect where he had the high fever, and that’s why we went in. And we did get the Toci dose [tocilizumab], which is a special medicine that kind of calms the inflammation down. So, I think that some of the questions that I would have pretty much are what to expect but I was given that. And I think maybe it would be good to meet other people that had gone through this before you’re actually going through it.  

I didn’t have that luxury, because my husband was only the second person in our hospital to do it. But to know what’s going on from another caregiver’s perspective would be nice. 

Katherine:

Yeah. We’re going to talk about resources in a moment. But, Sarah, I wanted to ask you, “What are some of the common issues that care partners face?” 

Sarah Meissner:

I think this is a very stressful time here. Your loved one is not feeling well, and there are these potential side effects. And so, that can cause a lot of stress on caregivers that they’re kind of the one in charge. They’re looking for these things. Of course, they want the best for their loved one. So, it can be a very stressful time.  

Frequent appointments. Here in Denver, we have terrible traffic. So, if people live far away from the center, it’s fighting rush hour every morning to get here. That can add a lot of stress as well as if you have other things going on at home, too, other family members who need you, it’s a lot to take on. 

Katherine:

Adrienne, what experiences or issues did you have in taking care of your husband? 

Adrienne:

Well, we do have a child. She was 2 at the time. So, I did have to plan childcare pretty much every day for two weeks, which I am fortunate to have lots of friends and family here in Denver, so I was able to get that covered. 

Katherine:

It’s a lot of responsibility for you. 

It’s a higher level of responsibility, I guess, right, because you’re taking care of your child and now, your husband is very sick. And you want to make sure that everyone’s needs are being met. 

Adrienne:

Right. And driving, like Sarah had said, the driving was an issue, because it was so far for us. There are potholes and with the little bit of change in mood and not feeling well, it was hard for him to be in the car so long and not getting to drive himself. So, I think that was not the best experience. I think if we did it next time, we would try and just be closer to the hospital.   

And for me to take care of everybody else, I did make sure that I would try and work out and not being able to leave the house with him. So I work out in the living room just to get some of my own stress out, or I would have somebody come and watch him if I really wanted to go to a class to work out. And like I said before, we were very lucky to have his parents that live in town and then my mother and my sister. So, that’s something that is important to have a network of people to help you because I don’t know, depending on what you have on your plate. I think it would be almost impossible to do it all by yourself, especially if you have to work or you have children to take care of.  

So, that’s some advice or what I’ve learned from this experience. 

Katherine:

Yeah. Was it hard for you to take time for yourself? Did you feel guilty? I know a lot of people think “Oh, I need to focus all of my attention on my child or my sick spouse.” It can be difficult to say to yourself, “I really need to take half an hour or an hour,” and then, find somebody to help you out with the caregiving.   

Adrienne:

Yes. I did find it difficult. And you just know that there is going to be an end in sight. You think,”If I can just last through the month so I did sacrifice.” But at the same time, my main concern was that my husband would get through this. So, I did feel a little guilty. And I would get a little bit of time.  

But me, personally, I just wanted to push through that month and especially that first two weeks. And then, I knew that I would be back to doing the things I love.  

Katherine:

Yes. Rather than looking too far forward, I guess it’s trying to get through every day each day. Yeah. I’m going to switch back to ask Sarah a question. Sarah, why is it so important that care partners communicate any issues with their healthcare team? 

Sarah Meissner:

So, those side effects that we talked about, there are drugs that we can use to treat them, but they work best when we can get those drugs in as soon as possible. So, if we’re starting to see signs of cytokine release syndrome, we want to get that tocilizumab (Actemra) infused in the patient within two hours.  

So, it’s really important that we know that these side effects are popping up so that we can treat it appropriately. 

Katherine:

All right. We spoke about support a few moments ago. Sarah, this is, obviously, a very taxing experience for everyone, the patient and care partner. Where can care partners find support during this time looking outside family members and relatives nearby? What other resources are available? 

Sarah Meissner:

Absolutely. I would encourage people to work with their local psychosocial team first. There may be support groups within the program that they’re receiving treatment at that could be helpful or, like Adrienne talked about, other patients or caregivers who have gone through this that they can be connected with.  

There is also some great support resources through The Leukemia & Lymphoma Society. They do have caregiver support. They have patient support, connections with patients, and that kind of stuff. So, that is another good place to look as well as the different manufacturing groups that make these CAR T cells do have patient support groups as well. So, maybe some more information, maybe some caregiver resources. They’re all a little bit different but that would be another good place to look.  

Katherine:

Adrienne, did you find any resources that you would recommend?  

Adrienne:

Well, I used, and not on particularly CAR T cell but I do have one in there, but Facebook does have closed groups that you can join. 

I did this for his bone marrow transplant. And I do get a lot of support on that particular one. It’s for spouses and caregivers in particular. So, look for that and there is one on CAR T cell but for multiple myeloma. But at the time, it was very new so there wasn’t a lot of back and forth on there. But you can really connect with people, and, of course, it’s not a substitute for any kind of medical advice. But it is nice to talk to people that are going through the same thing, especially with his bone marrow transplant. There were other caregivers that were, actually, doing it at the same time. So, that was kind of like a reassuring thing to have this little group of people that we knew were all doing it at the same time.  

Katherine:

Yeah. That’s great support. Sarah, how can care partners make sure they’re taking care of themselves? What can they be doing? 

Sarah Meissner:

I think it’s hard going through this process. The focus is so much on the patient and what they’re going through. And caregivers often forget that they have needs, too. So, taking the time to look within and recognize when you’re feeling stressed and maybe you need some support. Reaching out to friends and family is a great thing if you have that option. If you have the option to have somebody come in and hang out with the patient for a period of time, so you can go to a work out class or you can just go grab some groceries or go do something for yourself and have a few minutes that you’re not having to worry about watching the patient can be really a great thing for people. 

Sometimes, if patients don’t have other support, caregivers will take the time that the patient is in clinic and being watched by the care team to maybe go run a quick errand or do something. And that’s definitely an option as well.  

Katherine:

Adrienne, we talked about this, but do you have any advice for care partners as they begin the process? 

Adrienne:

Yes. I would just say that it’s only temporary and that the first two weeks is really intense, but it definitely gets better. And just to keep your eyes peeled on all of those little things that might not be right, because it’s really important to get them back into clinic if they need it and to take a little time for yourself.  

Katherine:

Yeah. Well, before we end the program, I’d like to get final thoughts from both of you. What message do you want to leave care partners with? Adrienne, let’s start with you. You may have already answered this question just a moment ago. 

Adrienne:

The message that I think that we would like to give, my husband, too, is that this is a lot of work, but he has had a very successful remission. And it’s very promising, and we’re excited to have a long future with this. It’s much better than having chemo every week.  

And it’s improved his quality of life. So, I think that as a caregiver, it’s a lot of work, but it’s definitely worth the work, because the end result, hopefully, will be life-changing. 

Katherine:

Yeah. Sarah, do you have anything to add? What information would you like to leave care partners with? 

Sarah Meissner:

Yeah. The care partners are such a crucial part of this process. Without them, we can’t provide this treatment. So, it’s a very important role, and we are very thankful that you are willing to do this for your loved one so that we can give them this treatment and, hopefully, get them into remission and have great results from that. So, make sure that you take the time that you need to be able to be there for your loved one and, again, just thank you for being willing to do this.  

Katherine:

Well, Sarah and Adrienne, thank you so much for joining us today. This has been really great to talk to you both.

Sarah Meissner:

Thank you.  

Adrienne:

Thank you. 

Katherine:

And thank you to all of our partners. If you’d like to watch this webinar again, there will be replay available soon. You’ll receive an email when it’s ready. Also, don’t forget to take the survey immediately following this webinar. It will help us as we plan programs in the future. To access tools to help you become a proactive patient, visit Powerfulpatients.org. I’m Katherine Banwell.   

What Are the Latest Acute Myeloid Leukemia Therapies?

What Are the Latest Acute Myeloid Leukemia Therapies? from Patient Empowerment Network on Vimeo.

What are the latest treatments in acute myeloid leukemia (AML)? Dr. Catherine Lai from Penn Medicine discusses the increase in available AML treatments. Learn about combination therapies and treatment options for patients with IDH1, IDH2, and FLT3 mutations.

[ACT]IVATION TIP from Dr. Lai: “Ask your physician and your oncologist when you’re talking with them about what all the newest therapies are and what would be specifically the best treatment for their specific leukemia with respect to the different mutations.”

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Transcript: 

Art:

Dr. Lai, for newly diagnosed AML patients, what are the latest available therapies?

Dr. Catherine Lai:

That’s a great question. The last, I would say, a handful of years have really seen a dramatic increase in the number of new treatment options for AML patients, specifically since 2017, the FDA has approved 10 new drugs for AML, that’s both for patients who are newly diagnosed and in the relapsed refractory setting.

And so what I would say is that we break our patients into two different categories in terms of being able to tolerate intensive chemotherapy versus non-intensive chemotherapy, and as well as looking at specifically targeted mutations that patients may have so that we can better understand the disease but also treat these patients more specifically to try to maximize efficacy while minimizing toxicity. 

And so specifically, I would say for patients who have FLT3 mutations, there are drugs such as midostaurin (Rydapt) and gilteritinib (Xospata), there are drugs for mutations in IDH1 and IDH2, enasidenib (Idhifa) and ivosidenib (Tibsovo) and recently, or in December of  2022, olutasidenib (Rezlidhia) was also approved for IDH1-mutated patients as well.

We have a general targeted agent that’s an oral chemotherapy that probably has made the biggest difference in how we treat patients called venetoclax (Venclexta), and that’s used in combination with azacitidine (Onureg) or decitabine (Dacogen), or low dose cytarabine (Cytosar).

Although most commonly in the United States, we use azacitidine or decitabine in combination with the venetoclax, and that I think is really what I’d say has been practice changing for the most part, in terms of both increasing the complete remission rates as well as the overall survival for these patients. So I would say there are a lot of new drugs. It is all very exciting.

The biggest activation tip in terms of takeaways is to ask your physician and your oncologist when you’re talking with them about what all the newest therapies are and what would be specifically the best treatment for their specific leukemia with respect to the different mutations.

Art:

Okay. Dr. Lai, what are the latest approaches to combination chemotherapy to treat AML?

Dr. Catherine Lai:

So, the latest approaches for combination chemotherapy would be in the combination of a hypomethylating agent, azacitidine or decitabine in combination with venetoclax. This is the most practice-changing combination that has been approved since 2017 to 2018, and now more recently, what’s been happening is now looking, so we call that a doublet, and now it’s been looking at…what we’ve been studying is now whether or not triplets are more effective, when we do have triple combinations, we do see an increase in toxicity and so on, we haven’t come up with the right algorithm in terms of what that exact formula should be, but often I think about it in kind of a three-fold in terms of wins the right time, what’s the right combination, and how do we see in the drugs, and I think the sequencing is the biggest thing that we don’t yet know, and how do we combine the two different..two different drugs in a way, and how do we give them in a way that will maximize efficacy, will minimize the toxicity, so as an example is, Do we give two drugs for a specific period of time, and then after some determined time point, do we…

And change it to a different set of combination of drugs to make sure that patients are getting the most benefit of the drugs, and we don’t know that yet, but I think that that’s where the general direction…where the landscape is heading, so the activation tip I would take home from this is just to have a conversation with your physician about potential clinical trials and how combination therapies are being used. 

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How Does CLL Affect the Immune System?

How Does CLL Affect the Immune System? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat explains how a patient’s immunity is affected by the disease and strategies for management.  

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:

Finally, our last question. One audience member would like to know more about how CLL affects the immune system, including wound healing, and how does CLL impact this? 

Dr. Bhat:

So, patients with CLL usually have a weaker immune system. The lymphocyte, which is the white cell, which is affected in CLL, is an important part for an immune system, and due to the presence of disease, these lymphocytes – although there are lots of them in patients with CLL, they tend to be non-functional. 

“Functionally incompetent,” that’s what they’re called. And it leaves the patient’s immune deficient and susceptible to a variety of infections. Also, the lymphocyte is component – the B lymphocyte is one component of immune system. There are other components like T lymphocyte, antibody, NK cells. There’s cross-dock between the B cells and what we call, the “microenvironment,” which is made of the T cells. This cross-dock is deficient in patients with CLL, again making them immune-deficient and susceptible to infection. So, that’s one impact on their immune system. 

Sometimes, there’s something else happening in the immune system where the immune system can go crazy, or wacky, and start attacking the patient’s own blood cells leading to, for example, decrease of hemoglobin or platelets, because these are immune complications. And also, due to a weak immune system, patients with CLL can have delayed wound healing, which also predisposes them to infection. 

So, being aware of these complications is important and using appropriate precautions can be very helpful. Again, because they have a weakened immune system, vaccines are very important. Using all measures to avoid infection, hand washing, staying away from patients, from people who are obviously sick, is very important. Sometimes, patients where we see they’re’ getting frequent infections, we can use what’s called, “IVIG,” intravenous immunoglobulin. These are pre-farmed antibodies which are injected into or infused into the patient at regular intervals every 4 to six weeks, which reduce the chance of these infections. 

How Do Genetic Mutations Impact a CLL Patient’s Prognosis?

How Do Genetic Mutations Impact a CLL Patient’s Prognosis? from Patient Empowerment Network on Vimeo.

What is the best approach for chronic lymphocytic leukemia (CLL) patients with genetic mutations? CLL expert Dr. Seema Bhat shares how mutations impact prognosis and treatment.

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:

Okay, that’s great. Here’s one from Phil, “How do mutations affect longevity when surviving CLL? What new treatments help with P53 mutation?”  

Dr. Bhat:

So, there are certain prognostic markers for CLL, meaning certain tests that can tell us how a particular patient is expected to do. Some of these tests detect presence or absence of mutations in certain genes. For example, the IGHV gene can be mutated or unmutated. 

In patients with mutated IGHV, they do well, and patients with unmutated IGHV tend to have a more aggressive disease and may require treatment sooner. Similarly, TP53 mutations also tend to require treatment sooner, and more of these mutations do not respond well to conventional chemotherapy. However, targeted therapy has changed the outlook for these mutations, and it works very well for both these mutations. 

Are There CLL Clinical Trials Studying Richter’s Transformation?

Are There CLL Clinical Trials Studying Richter’s Transformation? from Patient Empowerment Network on Vimeo.

Have there been any advances in treating Richter’s transformation in chronic lymphocytic leukemia (CLL) patients? Dr. Seema Bhat discusses emerging approaches. 

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

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What Does Minimal Residual Disease (MRD) Mean for CLL Patients

What Does Minimal Residual Disease (MRD) Mean for CLL Patients?

Transcript:

Katherine:

Sophia wants to know, “Are there any clinical trials regarding Richter’s, or DLBCL, transformation?” 

Dr. Bhat:

So, Richter’s transformation means when CLL, which is a low-grade disease, changes into high-grade lymphoma, and most commonly it’s “diffuse large B-cell lymphoma,” or DLBCL. Currently available treatments for Richter’s transformation are, unfortunately, sub-optimal. So, clinical trials to find better treatments are critical for this division, and there are a number of these currently going on. For example, some trials add targeted agents to the backbone of standard chemotherapy called, “R-CHOP.” 

So, we have one trial where acalabrutinib is being added. There’s another clinical trial where venetoclax is being combined with R-CHOP. One of the problems with Richter’s transformation is that it tends to be refractory to treatment, and it tends to come back or relapse. So, there are studies ongoing for relapse treatment as well, with combination of targeted agents. And CAR-T therapy, we just talked about that, is also being studied in Richter’s transformation. So, there’s a lot going on to improve the outcome for this. 

What Does Minimal Residual Disease (MRD) Mean for CLL Patients?

What Does Minimal Residual Disease (MRD) Mean for CLL Patients? from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about minimal residual disease (MRD)? Dr. Seema Bhat explains what it is, how it’s checked, and what it means for patients.

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Transcript:

Katherine:  

Here’s another question from Anna. She asks, “What is MRD, and does that mean that the disease is cured?” 

Dr. Bhat:

So, MRD is minimal residual disease, and in CLL is defined as the number of leukemic cells that can be detected in the blood or bone marrow following treatment, meaning how many cancer cells are remaining after treatment? This can be checked by a couple of tests. Most commonly, we use flow cytometry. Undetectable MRD is currently defined as the presence of less than one cell – one CLL cell in 10,000 white cells. 

It’s emerging as an endpoint in a number of clinical trials, and presence of no MRD, also called, “MRD-negative status,” although not considered a cure, predicts better outcomes with longer remission. This is being done in combination treatment, and although it’s part of clinical trials currently, with more data available, we may start using this in clinical practice in the next coming years. 

Managing CLL Symptoms and Treatment Side Effects

Managing CLL Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat reviews common CLL symptoms and treatment side effects and approaches for managing them. Dr. Bhat stresses the importance of sharing any issues they may be having with their healthcare teams.

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:

Can you please talk about common side effects of CLL – which, of course, we’ve covered already, but both the ones from the disease itself and then ones related to treatment, and what can be done about these? 

Dr. Bhat:

So, disease-related side effects, or we call them disease-related symptoms, include fatigue as a common symptom. Unintentional weight loss can happen. Fevers, chills, or drenching night sweats can happen. We call them, “B symptoms.” Spleen can enlarge, and the enlargement can cause belly pain or feeling of fullness quickly after a meal since spleen is close to our stomach, and as it enlarges, it limits the space stomach can take up in the belly. Lymph nodes can enlarge and can get uncomfortable. So, if any of these symptoms happen, then we have to treat the CLL, and once we start treating the CLL these symptoms should go away. 

As far as treatment-related side effects are concerned, for example, BTK inhibitors are associated with a certain set of side effects. For example, patients can have muscle cramping, muscle pain, joint pain. Patients can have diarrhea. Some of the side effects that we worry about is change in heart rhythm, for example, atrial fibrillation. We talked about that, or increased risk of bleeding.  

Those are some of the side effects we worry about, and if those were to develop, then, of course – for example, a patient has atrial fibrillation, and if it’s symptomatic, we hold the medication. We take care of the atrial fibrillation, usually in collaboration with cardiologists, and once that’s under control, then we have to decide what to do with the treatment. If the atrial fibrillation is under control, we can re-initiate the treatment, or we can go to one of the next-generation BTK inhibitors – the acalabrutinib (Calquence), the pirtobrutinib (LOXO-305), which have less of those side effects. 

Bleeding tends to be a concern, but anything that reduces the risk of bleeding like other medications, aspirin, clopidogrel (Plavix), other blood thinners, we can avoid them, monitor these patients very closely for any of these side effects, so that’s critical. With venetoclax, it’s usually very well-controlled. It’s the initial part of treatment that tends to be a little bit intensive because of the specific side effect called, “tumor lysis syndrome,” which means that the drug works very quickly, and cells die off quickly, they can release stuff in the blood, and things can collect in the blood. 

Uric acid can go up, electrolytes can be up, any number can go up. So, we are aware of this side effect, and we actually pre-emptively have things in place that can prevent this from happening, or if it happens, we manage it right away. For example, venetoclax has a specific dose initiation. For example, it’s called, “dose ramp-up.” We start it at a lower dose, 20 milligrams, for one week. Escalate it to 50 the next week, 100 the third week, 200 fourth week, and 400 the last week, which is the standard dose. They continue on 400 from there onward. 

And even with the slow dose escalation, in the early couple of weeks, we monitor them very closely. Once we initiate a dose, we bring them back to the clinic to recheck their blood work to see if there are any changes. If any changes have happened, we hydrate them, initiate medication for their tumor lysis syndrome. 

If the risk of tumor lysis is very high, then we monitor then admit them to the hospital. Otherwise, long-term side effects of venetoclax, what we have noticed mostly is gastritis, most side effects – mostly diarrhea. But that’s usually well-controlled. We can manage it well with supportive care. 

Where Can CLL Patients Access Financial Support?

Where Can CLL Patients Access Financial Support? from Patient Empowerment Network on Vimeo.

Is there patient financial assistance for chronic lymphocytic leukemia (CLL) treatments? CLL expert Dr. Seema Bhat shares resources and advice for accessing support.

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:  

Financial concerns can be another source of stress for people with CLL. Obviously, everyone’s situation is different, of course, but what resources are available for patients who need financial support? 

Dr. Bhat:  

So, financial barriers can be a real concern for our patients. Targeted therapies are very expensive, and although insurances do cover them, the approved FDA drugs, copays can be very high, and this adds on because our patients with – our treatments with CLL, some of them tend to be indefinite. That means patients have to take those medications on an ongoing basis, and when they face such situations, high copays, we look into financial assistance. We look for funding for copay assistance, and funding can be provided by pharmaceutical companies. We can also apply for grants through The Leukemia & Lymphoma Society and other resources to help out our patients with these financial concerns.  

Katherine:  

So, does the patient work with the healthcare team to find financial support? 

Dr. Bhat:  

Absolutely. We at our institution have what is called, “MAP,” or Medication Assistance Program. 

And when we see that – we run the medications through the insurance, then we see the copay is high, we refer our patients to the MAP program, and then they take over. They find them grants, they find them assistance through be it pharmaceuticals, copay assistance programs. So, invariably, almost all patients who come and see us are helped through that program.  

Katherine:  

What about a nurse navigator or patient navigator? What do they do? How can they help?  

Dr. Bhat:

Well, so yes. Nurse navigators and patient navigators are also very important for caring for our patients. So, patients can have, besides our care for our patients which includes caring for their disease, caring for their symptoms, caring for their reduced hemoglobin and reduced platelets, our symptom management, they have psychological needs, they have functional needs, they have needs like family support. 

So, these are all the things that patient navigators can help patients set that up based on their – we have patients who travel from out of state, are from two or three hours away. So, these patient navigators look into what resources they should have available locally. Sometimes, patient navigators help us – some patients cannot do frequent travels back and forth, so we get them connected to local oncologists, also. So, patient navigators look into those appointments, look into those offices, so they provide a lot of help to us manage our patients. So, they provide more of a holistic management, rather than just treatment of CLL. 

Addressing Anxiety About CLL and COVID

Addressing Anxiety About CLL and COVID from Patient Empowerment Network on Vimeo.

Many patients with chronic lymphocytic leukemia (CLL) worry about how they may be impacted by COVID. Dr. Seema Bhat shares advice for CLL patients who are anxious about being immunocompromised and what they can do to protect themselves

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:

What about worry and anxiety related to COVID and compromised immunity? What would you like patients to know? 

Dr. Bhat:

So, COVID has become another source of anxiety, unfortunately, for many of our patients, and rightly so. Our patients with CLL are considered immunocompromised, meaning that their immune systems do not work that well, which makes these patients very susceptible to different kinds of infections, COVID being one of them. And this was actually shown by some of the early COVID-related studies that showed a very high mortality in patients with CLL. 

This has improved now, mostly because now we are better equipped to handle COVID. We have COVID-directed medications available, but the major impact has been made by the vaccines. So, we highly encourage our patients to get vaccinated against COVID and keep up to date with the latest CDC guidelines. Also, we have Evusheld available, which is under emergency use authorization, and our patients with CLL, due to their weaker immune system, are eligible to get this, which adds an extra layer of protection for our patients. 

Also, it’s important to know that our test – if our patients test do test positive for COVID, they should let their team of doctors know immediately, since now we have monoclonal antibodies and pills that can be used to treat symptomatic COVID. 

Katherine:

That’s great information, thank you.  

CLL and Anxiety: How Your Healthcare Team Can Help

CLL and Anxiety: How Your Healthcare Team Can Help from Patient Empowerment Network on Vimeo.

Many people with chronic lymphocytic leukemia (CLL) experience fear and anxiety after a diagnosis. Dr. Seema Bhat explains why it’s important for patients to share how they are feeling with their healthcare team.

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 people with CLL will experience fear and anxiety, whether it’s the stress of being in “watch and wait” or worrying about regression. Why do you feel it’s important for patients to share how they’re feeling with their healthcare team? 

Dr. Bhat:

So, one of the important things to know about CLL is that CLL, at this point of time, it’s not a curable disease. It is a lifelong disease. Patients will have to deal with CLL for the rest of their life in some form or other, either on watchful waiting, or on active treatment, or if they’ll complete a treatment, they’ll have this lurking fear of relapse at any time. A large part of what I do is to help my patients understand what it means to live with CLL. And, of course, anxiety is a big part of that living with CLL. 

Although at this time, we’re unable to cure our patients with CLL, I want my patients to understand that it’s very treatable, treatments are very well-tolerated with low toxicity, and patients live a long life. They can have good, productive, and active life. They should ask their care team about resources for social, emotional, and physical support. They should let them know about their concerns, talk about their feelings.  

Katherine:

How can a social worker provide support, and are there other healthcare team members who might be able to help? 

Dr. Bhat:

So, yes, patients are on a rollercoaster – emotional rollercoaster with this diagnosis. With this diagnosis come lots of unknowns. Worries about possible shortened life span, anxiety over treatment, and effects of treatment. So, there’s lots to deal with, and lot of uncertainty, which causes a feeling of hopelessness for these patients. So, psychological support is very important. That’s where the role of social worker comes in. 

We get them involved to help patients deal with the diagnosis, and social workers – they can provide patients with tools to cope with this life-changing event. They use life tools like encouraging positive thinking, mindfulness, being aware of what the patient can control involving faith and family, and also involving self-care. 

That’s where we see the role of the whole team as such. If patients are having more difficulties, we can have other members of a team, like a mental health provider, connect with our patients. Social workers and other members of the team can help our patients get connected to support groups, or even to other patients who have had similar experiences. 

Emerging CLL Treatment Approaches

Emerging CLL Treatment Approaches from Patient Empowerment Network on Vimeo.

Are there emerging CLL treatments that are showing promise? Dr. Seema Bhat provides an overview of ongoing research and discusses when CLL patients should consider clinical trials. 

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

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Transcript:

Katherine:  

Dr. Bhat, where do clinical trials fit into treatment? 

Dr. Bhat:  

So, clinical trials play a very important role to advance treatments. Clinical trials for CLL are done to test new treatments, new combinations of treatments, compare different treatments to each other. The goal of these clinical trials is to continue to do better than what we currently have available. This is how treatments improve. Despite all the advancements that we have had in CLL, in the recent years, it continues to be an incurable disease, even today. Our goal as researchers is never to stop until we get to that cure, and clinical trial is that pathway to that cure.

Katherine:

Are there emerging therapies that are showing promise? 

Dr. Bhat:

Yes, of course. There are a number of emerging therapies that are showing promise. So, we all know about ibrutinib and other BTK inhibitors. These work very well, but sometimes the disease can get resistant to these medications, meaning that it stops responding to these treatments. We are excited about this new kind of BTK inhibitor called, “pirtobrutinib,” which has shown great promise in these resistance cases, and we are hopeful that it’ll be approved soon. 

Katherine:

Are there other options that patients have? 

Dr. Bhat:

So, we all hear about what is called, “chimeric antigen receptor T-cell therapy,” or CAR-T therapy. This is studied under clinical investigation for CLL and looks very promising. The therapy uses the person’s own immune cell called, “T cell” to identify and attack cancer cells. 

T cells are taken from the patient’s blood and sent to a specific lab. There, the cells are modified so that they can better find and attack cancer cells. These modified T cells are then re-injected back into the patient to find and fight that cancer, to eradicate the disease. So, this looks very promising.