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

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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.

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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.   

The Value of Myeloma Support Groups and How to Join

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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

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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?

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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

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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

Related Resources:

Considering CAR T-Cell Therapy for Myeloma_ Key Questions to Ask Your Doctor

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

 The Value of Myeloma Support Groups and How to Join

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 How to Access Myeloma Financial Resources

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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?

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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

Related Resources:

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

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

 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?

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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

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

Expert Advice for CAR T-Cell Therapy Care Partners

 What Resources Are Available for CAR T-Cell Therapy Care Partners

What Resources Are Available for CAR T-Cell Therapy Care Partners?

 Are You a CAR T-Cell Therapy Care Partner_ Why You Should Ask for Help

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.   

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

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Relationships and Chronic Lymphocytic Leukemia: Navigating CLL Together

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CLL Patient Café®

CLL Patient Cafe® – Relationships and Navigating CLL Together from Patient Empowerment Network on Vimeo.

A panel of Chronic Lymphocytic Leukemia (CLL) patients and their care partners discuss navigating CLL together.

See More From the CLL Patient Cafe®

Transcript:

Andrew:

Hello, and welcome to this Patient Empowerment Network program: Relationships and Chronic Lymphocytic Leukemia, Navigating CLL Together. I’m your host, Andrew Schorr from Patient Power, been living with CLL 23 years; we’re gonna talk about that. And we have some great guests. I wanna thank our financial supporters for this program who have supported this program with educational grants to the Patient Empowerment Network—that’s AbbVie Incorporated and Pharmacyclics—they have no editorial control over what we’re discussing today.

Okay, let’s meet our guests as we talk about relationships. So, first I gotta start with my daughter: Ruthie Clara Schorr, 25 years-old, in Miami Beach, Florida. Ruthie, you’ve grown up with my CLL, right?

 

Ruthie:

Yep, that’s right.

 

Andrew:

And you’re doing okay with it?

 

Ruthie:

Doing okay!

 

Andrew:

We should mention that Ruthie is our chronic lymphocytic leukemia manager for our CLL programs, so she kinda lives with it in her work, and knows her dad has it; we’re gonna talk about that.

Let’s go to Vancouver Island, British Columbia, just north of Victoria to Shawnigan Lake and a famous boarding school there, where Jay and Maureen Connolly join us; Jay is the patient. So, welcome to our program. And Jay, you were diagnosed with CLL in 2011, right?

 

Jay:

2011, that’s right. And treated early with F and R in –

 

Andrew:

F and R—fludarabine and rituximab—but no treatment since then?

 

Jay:

No treatment since then.

 

Andrew:

But some anxiety highs and lows, right?

 

Jay:

Absolutely. Yeah, with reactions to blood tests, or just state of well-being.

 

Andrew:

Right, and Maureen, you’re his partner through all this. Do you worry about him sometimes?

 

Maureen:

I do, and especially on the blood test days. I always feel a great deal of anxiety when he – he never tells me ahead of time; he just will say, “At 7:45, I’m going to get my blood done,” and I – it puts quite a lot of anxiety over that.

 

Andrew:

Right. Right. And you have two grown children, 30 and 34, but everybody knows about it?

 

Maureen:

Yes.

 

Andrew:

Okay. And you’ve been learning about it?

 

Maureen:

Yes.

 

Andrew:

Okay, well, knowledge is power. Okay, let’s go over to Connecticut to a man who’s known in some circles as “Dr. Pickleball,” okay? But that’s Allan Rosenthal; Ridgefield, Connecticut. Why is he Dr. Pickleball? First of all, he’s a Doctor of Podiatry. He’s really into sports. He’s super-active. But yet, last year—Allan Rosenthal in Ridgefield, Connecticut—when you were not feeling well, your energy went pah-choo, right?

 

Allan:

I would be in a regular tennis doubles game playing with the younger guys, and I just couldn’t keep up. It was disheartening.

 

Andrew:

And you went to visit grandkids and family, and normally, you’d be doing all kinds of stuff with them, and you couldn’t keep up with family, right?

 

Allan:

I was in San Francisco trying to take a hike at Lands’ End with my grandson, and I just couldn’t handle the hills, I had to sit down in the park and just wait, I was very disheartened. In fact, I was gonna take the medication beforehand, but being frightened of taking a medication, I delayed it until after the trip.

 

Andrew:

Hmm, and the medication became Ibrutinib—or trade name Imbruvica—how’re you doing?

 

Allan:

I’m doing great! I just came off the pickleball court this morning. My blood counts are back to normal. I have the energy. I can’t wait to see my grandson in September again.

 

Andrew:

Mm-hmm, okay. And your wife is a nurse practitioner, so you’re –

 

Allan:

Yes, she is.

 

Andrew:

– you’re in the health field; she’s in the health field, has that helped you?

 

Allan:

I think it has. It’s helped because we’re pretty connected in the medical community in my local area. And my wife is pretty connected to Yale because she was formerly working at Yale.

 

Andrew:

Okay, so you’ve –

 

Allan:

And the oncologist I see happens to be – was a patient of mine, and it’s been good.

 

Andrew:

Okay. So, everything is – knowledge is power.

 

Allan:

Right.

 

Andrew:

For Jay and Maureen, is knowledge power for you too? I mean, do you try to research things, or do you just talk to your doctor and say, “What is this blood test mean now?” How do you do it, Jay?

 

Jay:

Well, when I was diagnosed, my oncologist did not seem particularly optimistic. I had CD38 marker and Zap-70, and so, people weren’t specific, but I kind of reading-between-the-lines thought that this was kinda gonna be a four or five-year journey. And at first, I was terrified of knowledge, in a way. I looked in the corner of my medical test—the one on which the diagnosis was based—and I saw this ZAP-70, and it said: indicative of a poor prognosis. And so, I wanted to find out more about ZAP-70, but I was terrified of the Internet because I thought I was gonna open some article, and it was gonna say, “You’ll live six years. There’s no chance you’ll have more than six years,” or three years, or what have you. And it was three weeks or a month before I had the courage, I suppose, to begin researching the condition.

And so, I kept hearing things like “we treat the patient, not the numbers,” and this sort of thing. And I kept realizing that I would be hypersensitive to people with the same markers. So, I’d read something by somebody on the list who would say that 15 years ago, they were diagnosed, and they were ZAP-70 and CD38, so that would be reassuring.

 

Andrew:

Yeah, 15 years ago, right.

 

Jay:

Yeah, and then I would also hear from people like Chris O’Dwyer and –

 

Andrew:

Who’s in Canada, mm-hmm.

 

Jay:

– who were so – and Wayne Wells, and people whose understanding of the technical aspects of the – the biology of the disease, were far superior to mine but had an ability to distill a great deal of information into laymen’s terms. And the more information that I read, the more hopeful I became. And I get scared now and again for a variety of reasons, but I also – I hope to take Ibrutinib next.

 

Andrew:

Whatever is right for you, yeah. Whatever’s right for you. Okay, so this program is about relationships, we’re gonna take with Ruthie in just a second. But Maureen, so your husband’s doing this research, was he sharing any of this with you? Because he’s trying to get smart and trying to calm himself down, so did you talk about it?

 

Maureen:

Yes. So, he did share everything with me, and he even shared the videos. And I didn’t totally understand it, but he seemed very confident, and that helped me through. I mean, as the spouse, I think you’re feeling things quite differently. And there are a couple of different kinds of fear that you have that is different than what your spouse has and tend to keep that to myself because you don’t wanna exasperate what he’s going through. So, it’s a little bit tricky.

 

Andrew:

Now, do you, Maureen, talk to your children separately from Jay? Like do they say, “Hey, Mom, what’s really going on?” and you have like a backchannel? Or do everybody speak openly?

 

Maureen:

Yes, I do. And my – what I try to do is just give them some of the information that Jay has given me, and tell them that hope is there, and that’s what we need to continue to do, and that they should not concentrate on his illness but on his good health.

 

Andrew:

Okay. Ruthie’s our middle child; Ruthie is 25, I’ve been living with CLL 23 years. Ruthie’s got an older brother who’s 29, a younger brother who’s 22. So, Ruthie, why don’t you talk about that, do you kids – I mean, I’ve never really asked you directly: do you talk about it? Like, I had a check-up yesterday, and your older brother sent me a text early this morning, “How’d it go?” But do you guys talk?

 

Ruthie:

Yeah, I think what’s been interesting for me is from when you were first diagnosed, I was so young, it’s really kind of a blur, I don’t remember a lot of the details of your diagnosis because I was so young. And then, when you came out of watch-and-wait, and you first went into treatment, it’s pieces that I remember rather than actually facing the condition. So, you were going to Houston and then coming back, and there were days where you were lying in bed, or sick, or at the hospital. And so, I remember pieces of that, but I think it really wasn’t until your relapse when I was in college that –

 

Andrew:

About a year-and-a-half ago, two years ago.

 

Ruthie:

– right, right, that I started to just really have more of an understanding of how tuned-in that I wanted to be to your condition. And I think the biggest thing has been – CLL has always been a part of our life, but you’ve always had this positive outlook of hope. Like Jay and Maureen mentioned, is really you kinda just have to be thankful in the moment that you’re feeling good. And I think like Allan stated before, he kinda saw this change that happened, he started to get back his energy. And I think for me, when you had started to feel not so well again, and then, you relapsed, and you went back into treatment, although I had concern and worry about, I almost just had this hopefulness that it was like: maybe we can get 17 more years of remission, maybe we can get 17 more years of health.

And so, even though it was stressful at the time, and it continues to somewhat be a stress, and Ari and Aton—my brothers—we discuss it sometimes, I really attribute a lot of the hope and the positivity I have towards it, towards the fact we can hold to this that you feel good today, and hopefully you’ll feel good tomorrow. And if the day comes where you don’t feel good, we’ll deal with it, and we’ll deal with it as a family.

 

Andrew:

Hmm, I wanna go back to Dr. Pickleball for a minute, who played pickleball today and he keeps saying that. But Allan, your family, your level of activity is such that in a way, it’s a measure of how you’re doing. So, in other words, your wife knows you played pickleball today; when if you talk to your kids or grandkids, “Hey. What’d you do today?” “Oh, I played pickleball,” that’s an affirmation that you’re doing well.

 

Allan:

Definitely. I’m listening to that, and I had two daughters, and I guess the biggest stress for me when I came off of watch-and-wait, was really the financial aspect. When I called up with my prescription, I was blown-away with the cost of the medication.

 

Andrew:

The co-pay, yeah, mm-hmm.

 

Allan:

Yeah, I have good health insurance, and I make a good living. But it was outrageous, but there is help out there. And I was talking to my older daughter, this is kinda my retirement, you know.

 

Andrew:

Right.

 

Allan:

Where it’s gonna be.

 

Andrew:

Right, well, I think that important to know. And I think for you in Canada too, Jay and Maureen, the policies are different. We’re in the US, you’re in Canada, there may be people watching worldwide, so there are kind of different issues. First of all, what can you get access to? And second, well, what treatment is right for you? And then, what insurance or policies in Canada, quite frankly, it varies by province what’s available to you. And in different countries, it could be that way as well. And then, based on your income, what is your co-pay; are you on Medicare in the US, what’s your co-pay; do you have commercial insurance? So, you’re right, there are – thank you for bringing that up, Allan, there can be financial questions for a family. And cancer treatment is expensive, for sure is certainly something to be wise about. So, Jay, you have these blood tests, and it sounds like your emotions sometimes go up and down. Have your doctors tried to tell you to, I don’t know, for lack of a better term, “chill-out” a little?

 

Jay:

Oh, absolutely. And I’ve just finally – after eight years I’ve gained some ability to do that. But it just – it was a function of education, of learning not to overreact to the blood numbers. And to look – because I’ve had times when getting my blood count—my white count right now is around 34,000; my last test it was 28, I think. And so, even a year ago I would’ve overreacted to that, I would’ve thought, “It’s gone up 6,000, that’s horrible!” but the fact is that the test before that it had gone down by kinda 4,000.

So, it tends to jump around, and one oncologist took the time to take me through the machine counting, the process of machine counting, and explained that it was dangerous to get too excited about one blood test. And so, that was probably a couple of years ago that he gave me that explanation, and it’s really now that I’ve had another half dozen tests, including one—and this was instructive—I think it was six months ago, my GP phoned me because my neutrophils were at 0.8, or something.

And he said, “Have you seen your – “he said, “How do you feel?” and I said, “Great,” and he said, “Do you have a cold or anything?” I said, “No,” and he said, “Well, I phoned the oncologist because I don’t like the look of the neutrophils,” and the oncologist said, “Well, have him go back in 10 days for another test.” When I went back, my neutrophils were 3.9.

 

Andrew:

Totally different.

 

Jay:

It went from the lowest rest I’d ever seen to the highest test I’d ever seen. So, either somebody in the lab didn’t know how to operate the machine quite as well they should, or there’s that swing in the quality of the machine counting; so that actually helped me relax.

 

Maureen:

Yeah, one of the really important things that the doctor said to us a couple of years ago was, “Jay, maybe don’t pay as much attention to the numbers, just how are you feeling. Make sure that that is at the top of your mind, not the numbers: how are you feeling?” Because through it all, Jay’s felt quite well, and we’ve done some amazing bike trips, and we’ve had some great adventures, and he’s felt good, so.

 

Andrew:

So, Maureen, there in that beautiful British Columbia and you’re around all these kids at a boarding school, can you just go live your life and say, “Yeah, he’s got this chronic condition, and he may need treatment again, and he gets occasional – but let’s just like put it aside,” can you just go, Maureen?

 

Maureen:

Yeah, we pretty much have to because it’s kind of overwhelming and there are always lots going on, and so many people to look after, that I think – we do struggle a bit with that. I think that sometimes Jay wishes there was more attention paid to him. But for me, it’s good to have lots going on. And we look forward to – because we’re at a boarding school, we get lovely long breaks together, and we’re just about to start six – eight weeks together now. And we’re really looking forward to that, and just spending the time on each other and, yeah.

 

Andrew:

Oh, nice. Nice. So, Ruthie, so, unfortunately, you work with CLLs, so it’s kind part of your work life. I’m not saying “unfortunately” because you help a lot of people, but does it get you down sometimes? Or you’re way past that?

 

Ruthie:

I mean, I think – like with anything like this in life, there are days – there have definitely been days since I’ve been working with Patient Power where you – where I talk to somebody who maybe has a completely different story than you do, maybe that’s tried 10 different treatments, or five or 10 different treatments that haven’t worked for them. And that’s kind of a snap to reality of just that it’s a serious chronic condition, and I’m thankful for the positive experience with the different medicines that you’ve had, and the long remission that you’ve gotten from that.

But it definitely – yeah, it definitely sometimes gets me down, and I think I’d be lying if I said sometimes it wasn’t a little exhausting to have it as such a present part in my life all the time. But I think that those days genuinely – they just give me a lot of fire to move forward to try and get people this information. Because if we can help somebody else in that way, hopefully, to not feel the way that I felt when I didn’t maybe fully understand it, or I wasn’t as clued-in, of course you want to do that. But absolutely, I mean, I think it’s natural for it to be stressful, or for it to be upsetting sometimes. But kind of like what Maureen was saying, is like: if you keep busy, and you keep moving, it’s really the only option. And I think with a serious condition like this, you can either let it really just impede your opportunity to function as a whole, or you can move forward and deal with it as it comes, and take things on face value, and do what you can with the situation at hand, so.

 

Andrew:

Well said. I’m just gonna make one comment about Ruthie’s mom, Esther. So, I had my CLL four-month check-up in San Diego yesterday. So, maybe it’s the same for you, but the way they do it at my clinic is: you go to the lab, and you get your blood test, and then, an hour later, you see the doc—in my case a world-famous specialist, Dr. Kipps. And then, he does his physical exam, and you chat for a little bit about your kids and stuff, and then, you go over the blood tests, okay. And you’re right, Jay, about: we look at the trends.

So, my platelets are a little down; lymphocytes are a little caca, but nothing terrible, and he felt it was a very – feels my lymph nodes. But Esther comes with me; Esther comes with me. And I really encourage her to do that, and I think she want to do that because she wants to hear it from him. Is the doctor smiling? Is the doctor relaxed? And I remember vividly he said, “This was a very impressive visit, I’m very impressed with how you’re remaining stable,” and that’s what Esther hears, right? And so, then, we go home, or we have lunch, and we’re good.

So, Allan: so your wife couldn’t be with us today—and she’s in the healthcare field—so, since you’re doing well on an oral therapy and very active, do you think about this much?

 

Allan:

It’s been in the back of my mind; it was at the very beginning. And the first thing – I took Cheryl, my wife, to the oncologist, we know him both personally. And the first thing he says to me, “You’re not die of this,” you know? That put me at ease. And then, talking about children, both my daughters were concerned about—they’re not in the medical field—whether or not it’s inherited. And my wife and I said, “No, it’s not,” so.

 

Andrew:

Right, yeah. To be fair, there’s a very – like a little blip of a – there are some families where they had two people with CLL, but it’s very rare; so, the “likely” to that is definitely very rare. And the other thing that I think—and again, Ruthie and I get to deal with this all the time, and you all have watched videos and been learning—is there’s been tremendous progress. I mean, so what I try to tell my kids is: of all the different cancers—I mean, brain cancer, not so much; pancreatic cancer, not so much; there’s some really terrible diagnoses, but we’re fortunate that the researchers have been able to get all these blood samples from all of us and do the research and develop products. And there seems to be a succession of products; I’ve seen it in the last six, seven years, tremendous change where, Jay, you got kind of the standard therapy in 2011—F and R—and done world-wide.

But what’s lined-up for you next will be whether it’s what Allan has, or I had a whole different—Ruthie mentioned that I came out of remission—I had a whole different treatment. I had an infused treatment of obinutuzumab, or GAZYVA, and that worked for me, and I’ve been in remission going on two years from that. So, it’s very individualized, and I think, Jay, you picked up on that in what you’ve been reading. So, you can drive yourself crazy with where somebody else’s story you assume is yours, even if it’s ZAP-70 positive, or whatever, you know? It could be good, bad, or indifferent, but it’s individualized to you. I’ve learned that.

I mean, Allan, you’re in the healthcare field, you see patients with the same situation, but yet, they’re very different, right?

 

Allan:

Yes. Definitely. I’ve seen some very sick patients; they’ve shared their, quote, “cancer stories,” and my wife even more so. I don’t have it so bad; there’s a lot of hope. There’s a lot of research; I’ve been fortunate so far.

 

Andrew:

So, let’s stay with you for a minute, Allan, how do you and the family look about your future? You got a couple of grandkids, right? I don’t know if you’ll have more. And wouldn’t it be great years from now to dance at their weddings? I mean, how do you view the future? And how do you generally all plan for the future?

 

Allan:

I take it one day at a time, but I’m enjoying life as it is. I’m working, I’m having actually the best time in my practice I’ve ever had because I’m doing what I like to do. I live in a very nice place. I get to do the activities I want; besides pickleball I play golf still, and I still ski. I’m fine. One of the things that was strange that happened to me: I went to two meetings with other podiatrists, and I was really feeling pretty bad about it at the time. I wasn’t on any treatment, and I said, “You know, I have this thing called CLL,” and my friend turns around to me, and says, “My father and uncle have it, and if you start complaining about it, I’m gonna wring your neck!” so to speak. Thank God there’s research out there, continued strives, and medication. And again, I’m grateful for this Patient Power.

 

Andrew:

Thank you.

 

Allan:

And all of the other – the charitable contributions as far as the finances are concerned for patients too.

 

Andrew:

Right. So, do you make plans for the future? You and your family?

 

Allan:

Yes. Yeah.

 

Andrew:

Okay, you just keep on keepin’ on. So, we have to mention just about future plans—Ruthie I want a big smile on your face—Ruthie about a week ago got engaged, so somewhere down the line is a wedding, and I’m gonna dance with that young lady at her wedding, and Daddy’s gonna be right there. And I have full expectations to do that, I don’t know whether it’s next year, or the year after. Her boyfriend’s in med school, so you know, Allan, it’s a long, long haul. But at any rate, we’re making plans. We’re doing stuff.

And you, in Canada, you guys have the summer off, or some of the summer off, and you’re gonna spend time together. So, do you make plans? I mean, how do you see the future, Jay and Maureen? How do you see the future, even while you’ve got this in your blood?

 

Jay:

Well, absolutely we make plans. And you know, your relationship to the time and the way the disease plays out is a big deal. When I was diagnosed, a week later, there was an article in Canada’s largest newspaper about CAR-T therapy.

 

Andrew:

Right.

 

Jay:

And I said to my oncologist, I said, “Well, that seems pretty good, can I get that?” and he said, “Well, maybe eventually; probably not,” and then yet, look at how far that therapy has come. I haven’t followed it extremely closely, but it’s my understanding that they’re trying to develop some more cost-friendly options for that, and whatnot. Ibrutinib was just on the horizon at the time; it was in early trials, I believe. And so, when I think of all the medications that I’ve read about over the years, and then I watch in Canada the approval process: Ibrutinib is approved, and [inaudible] [00:31:21] is in the process, and will probably be approved, and so forth. So, there are options, and so, I try to look at the next 20 years. And we – it’s changed our relationship to retirement, we kind of think, “Well, we’ll work another three years, and when I’m about 60, we’ll retire.” We should be okay, it’ll be a modest retirement, but it’ll be an opportunity to go and do some things that we would love to do in a healthy state. We make short-term plans in terms of: we’ve done a lot of bicycle touring, we rode 2,000 miles from Canada down to Denver four years ago on our bicycles, all self-contained; we rode from Ottawa to the Maritime Provinces the year before that.

So, I try to push myself physically because it’s that measure, and it’s a daily measure. I go out for a 20-mile bike ride, and that tells me how I’m feeling.

 

Andrew:

Right, me too. And it’s pickleball in Connecticut and bike riding there, and then I go jogging; right, that’s our barometer. So, Maureen, do you expect to have this guy around for a long time?

 

Maureen:

Yes, I do, and I’m counting on it.

 

Andrew:

Okay.

 

Maureen:

But that’s the difficult thing about being the partner in this: you don’t want to imagine a future alone. So, there’s no point in thinking about it; we’re just planning for a future together.

 

Andrew:

Mm-hmm, amen. And let me just talk to you – we talked about the kids for a minute, but do you have girlfriends, if you will, and they know that Jay has a cancer, and they’re worried about you.  And you have to sometimes set – I don’t want to say “set them straight,” but you have to let people who maybe don’t understand this whacky illness, and help them “get it” that he’s going on, and you’re going on bike rides, and you’re making plans, you know? Put it in perspective.

 

Maureen:

It doesn’t come up very often because Jay and I both work at the same place, and basically have the same friends. They see how healthy he looks and I don’t think very many people think about it. But when it does come up, I just – you know, I think when it first happened, I didn’t think I could manage. I didn’t think I should have to work or do anything except immerse myself in the grief of this terrible thing that had happened to us. But as the years have gone by, it just makes me realize how many people live with some kind of chronic illness, and you just do it. And that’s what I say to my friends, is, “You know, this is bad, but it’s not – but we’re just living with it, and we’re gonna be fine. You have to find hope in all the little things.”

 

Jay:

But one thing, Andrew, we work in a high school boarding school. And when kids are adolescents, they’re so self-absorbed, it’s really good for – it’s a really good place to work. Because they go – I could say to a class, “Well, I have cancer, you know,” and they’ll forget about that in two or three minutes because they just – you know, life is all about them. And I don’t say that cynically in any way; it’s just the stage of life. And that’s been really healthy because teaching courses, you need to concentrate on other people.

And I have my own profound capacity for self-absorption, so it’s a good thing to be in an environment where I’m sort of guided away from that, and away from the worry by my relationships with people. And I find that those—although I’m a bit of an introvert— those lift me up during my working day. And so, that’s been very positive, it’s a busy place, and we’re really forced—if we wanna be part of the community—to get on with life.

 

Andrew:

Get on with it. Ruthie, so you have lots of friends, and when they meet you—and maybe somehow maybe because I do a lot on the Internet—somehow they hear, “Oh, your dad has cancer.” Does everybody just move on, it’s not a big deal? Or do you have to sometimes sort of school people, “Hey, he’s been living with this a long time, he’s a busy boy,”?

 

Ruthie:

Yeah, I mean, I think the initial reaction when people hear the word “cancer” is people get very concerned, and people get very worked up. And then, when I say, “Oh, well, he has had since I was two years old,” they say, “Oh, well, you’re a lot older than two now, so I guess that’s a good thing.” And it’s – you know, I’ve been very fortunate to have lots of friends, and obviously my partner, who are really supportive and tuned-in to this stuff. And I think because I’m so educated on it, it is easier for me to be able to speak with my friends about it and feel confident in the way that I speak about it, and the way that I’m hopeful about it.

I think the other thing that’s really interesting is just with the way that the Internet is now and everyone being so connected, and knowing a lot of intimate details about people’s lives, is that a lot of people are affected by cancer, you know? Whether it’s them directly, or their parent, or their grandmother, or grandfather, or a friend, and I think there’s almost some kind of camaraderie in that. They said, “You know, we all are impacted by this in some way, and if we can keep moving forward, and being hopeful for each other, and kind of willing it into the universe that hopefully, as long as people can get the right care for them, that they’ll live a long life.” I think that’s kind of been settling, for me and for the people that I surround myself with. And I think it’s been really positive, even though the root of being connected by something like cancer is something you never hope that someone can relate to you on.

 

Andrew:

We don’t choose it.

 

Ruthie:

It’s almost – right, but it brings some kind of peace in the fact that you say, “Hey, I know what you’re going through,” or “I know somebody who went through what you’re going through.” And I feel that I’ve been able to hopefully, give some of that insight to some of my friends who have with their parent, or with someone else in their family, been able to face it and say, “Hey, you know, I’ve been around this for my entire life. And I really don’t remember a world where it wasn’t a part of my life.”

And it helps when they see all of your adventures on Facebook, and all of the wonderful travels that you do, that you’re like, “You know, Andrew’s just out there and just doing it,” and it’s not letting it limit you. And I think that that brings a lot of peace to the topic.

 

Andrew:

Amen. So, we do home exchanges, and so, we’re going to Sweden shortly. And so, at that conversation with the oncologist yesterday, I said, “There’s a big CLL cancer institute in Stockholm,” Karolinska it’s called. And I said, “Could you make an introduction to the CLL specialist there, just in case something went south, or whatever. He said, “Sure,” so that gives me confidence, so now I’m a little less worried, I’ll take my little antibiotics with me, but we’re going. We’re going, okay? And I think that’s what any of us – for any of us about going – I wanted to just share one little story I’ve shared before about communication with children.

Now, many of us as we are diagnosed with CLL are older, but actually, I was diagnosed when I was 45, which is young for CLL. Allan, you were – you got some white hair, so you were a little older. But, so Ruthie’s older brother, Ari, was just like, what? Six, or something like that, and he knew there’d been a lot of whispering in the house, and something’s going on with Dad, and there are doctor visits, he knew something was going on. You know, a lot of hushed tones. And so, I was talking to him at bedtime one night, and he was just six, and he said – I said—Ari is his name—I said, “Ari, Dad has a sickness in his blood,” and I’ll never forget this question—our family’s Jewish—he said, “Well, will you be at my bar mitzvah at age 13?” which to him was like forever, you know, in the future.

 

Ruthie:

It was, yeah.

 

Andrew:

Yeah, and I said, “Yes.” Now, at that time—and this was, what, 2000 or 1999, whatever it was—I didn’t know. I really didn’t— 1998—I didn’t know. And the treatments weren’t so good; there was a lot of question. So, flash forward years later—at a bar mitzvah often the parents give a little talk, and there’s a blessing of your kid, and all that—and so, I gave a little speech. And everybody in our community knew what was going on with me. And I told the story of telling Arian that I didn’t really know whether I’d be standing there that day, and here I am, and everybody was crying and stuff like that. But my point is, I’ll never forget talking to the kid, but I’m so glad I did.

And one last thing is: the other day I had coffee with a guy here in California; he’s in his mid-50s, diagnosed with CLL; has started treatment like you, Allan, but he hadn’t told his kids, teenagers. And he was struggling with whether he was gonna do it, and he was waiting for them to finish school in June. And I said, “Do it,” and his wife has eight siblings, all living in the area, and they hadn’t told anybody. And he hadn’t told his parents. And they’re all talking all the time, it was like the elephant in the room. And I said, “You will feel such a load coming off you,” so I have to check back with him; so now the kids are out of school, hopefully, he’s told them.

So, Allan, would you agree openness puts it in perspective for people?

 

Allan:

Yeah, I hear a lot in my own practice, a lot more horror stories. And yes, I’m a person who shares also like you, and I hope I have the same story with my grandsons for their bat mitzvahs – bar mitzvah.

 

Andrew:

Yeah, yeah, they will. You will. So, I think, again, I get to hear – talk to all the doctors, and Ruthie does research, and we get to meet everybody, and I would just say for our audience and for you guys: it’s a really, really positive time. It doesn’t vary by people. Jay mentioned CAR-T; there are some CLL patients who’ve had CAR-T. I was following a woman on Facebook who had CAR-T at MD Anderson in Houston just last week, and then, she was happy to be walking out of the hospital and at last check was doing well. Do we know how this experimental approach is gonna work, or for how long for the sickest people with CLL, the very sickest people? But Jay, we didn’t – going back to when you saw that article, that was like pie-in-the-sky, and now there are people benefiting from it.

So, I think we should – in our conversations, I believe in open conversations with people. They can see us play pickleball, they can see us go on 20-mile bike rides, they can see us dance at our kid’s wedding—Ruthie—and to say: well, you would rather not have it, for sure; you’d rather be cured, for sure; but short of that, if you can live well…right? Right? So, Maureen, can you put your arm around this guy, he’s gonna be okay?

 

Maureen:

Yeah, absolutely!

 

Jay:

Andrew, just on the openness issue, because I teach English and I’m accustomed to talking about all kinds of human elements, I decided early on just to be completely open with people. And they’re often far more uncomfortable than I am because the “C-word” is being used, and they are – it makes them immediately anxious. Because I think some people – you know, you have a lot of acquaintances and a few friends, and the acquaintances think, “Oh, well, he was treated in 2012, he must be cured.” And so, they won’t necessarily even have an awareness that it’s an ongoing condition.

But I just have always from the beginning—after a few months, after I grew accustomed to the diagnosis—tried to be just very straightforward with people about options. And that’s really what I always think of, that’s the way I think of it; I think I’m fine now. This could go another five years before I need treatment, and it could be a year. It’s impossible to know. But I can immediately identify the likely next treatment; and failing that, I know there’ll be other options. And then, I’m starting to be able to see beyond that treatment to the treatment after that. So, God willing and the creek don’t rise, I could be around for quite a while.

 

Andrew:

We’re gonna do this again in like 20 years, okay? We’ll do it like through holograms or something. Okay, well we’ve had a great discussion. I wanna thank Jay and Maureen for joining us from Canada; I wish you happy bike rides in Canada. Dr. Pickleball Allan, you with grandkids and everything, have a great time. And if I ever need a sports medicine podiatrist, I’m gonna come over to Connecticut and have you look at my feet, okay? And then we’ll go – we’ll play pickleball, okay?

 

Allan:

Sounds good.

 

Andrew:

And Ruthie Clara Schorr, I’m gonna be dancing at your wedding. Thank you for sharing your story, and thanks for your dedication to people in the CLL community. And again, relationships are important, open communication— we’re all believers in it—and go live our lives. Thanks to the Patient Empowerment Network for pulling this all together. Thanks to their funders, AbbVie and Pharmacyclics, and let’s keep that research going, and let’s go live our lives.

In California, with my friends in Miami, and Canada, and Connecticut, I’m Andrew Schorr. Remember: knowledge can be the best medicine of all. Thanks for watching.

Helping Seniors With Long Term Recovery: Tips For Carers To Make The Process Easier

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Every year over 525,000 Americans experiences their first heart attack while around 795,000 people experience strokes. Of that number, 75 percent of them are aged 65 and over. Recovering from medical conditions such as these can be a long road for older people. As we age, so does our bodies and immune system and recovery can take a longer time. The process of healing and returning to optimal health can be a stressful and trying time for both seniors and their caregivers, whether they are patients that are newly diagnosed or living with it for years. By implementing simple changes, you can ensure the process is a smooth and easy one for either yourself or a loved one.

Arrange For Help Sooner Rather Than Later – Both Personal And Infrastructural

The days immediately after medical events such as strokes, cardiac episodes, and even falls can find older Americans feeling frail and with limited movement. Small adjustments to both their living environment and making help available can help them in those initial times. Standard additions such as the placement of bath rails and reorganization of items to a more accessible level can help them maintain some level of independence and prevent further harm. Slips and falls are one of the most commonly reported incidents amongst seniors in America. Around1 in 4 older Americans experience falls each year and in those times where they are in long term recovery, these chances increase sizably.

In addition to making your home accessible, be sure to plan with other family members or carers a timetable to be present and help, particularly in the early days after being released from the hospital or care facilities. This is also the point where you will need to consider whether you can provide the level of long term care that person may need and do so comfortably at home.

Weigh Their Rehabilitation Options- Care Facilities Vs Recovering At Home

Speaking of providing long term care, considering the best rehabilitation option is one of the most important decisions in the recovery process of an older loved one. While most of us prefer to age at home, in a place surrounded by family and comfort there are cases where care facilities may prove to be better medically and financially. Some stroke patients can suffer long term loss of their motor skills and require round the clock care and physical rehabilitation. This can prove to be along, tough road and requires much commitment from both the caregivers and the patient. One of the most cited reasons for families not choosing assisted living is its costs. Take the time to inquire whether their state health insurance covers senior facilities and the extent of its coverage. Only then can you align your budgetary reach and make a decision on what you can afford.

Don’t Forget Their Mental Health

Our physical and mental health are strongly linked; a decline in one can impact the other. In long term recovery for seniors, this is particularly prevalent. Approximately 15 percent of adults 60 and older deal with mental illness including clinical depression. According to the Center For Disease Control and Prevention, 1-5 percent of the senior population are affected by depression. This can be further broken down into 13.5 percent of those that require home healthcare and 11.5 percent of those in hospitals. In addition, certain illnesses can trigger or worsen these symptoms including dementia, strokes and multiple sclerosis.

For those recovering, this can stem from long hospital stays or even PTSD from the actual event such as a stroke or fall. In long term recovery, there can also be a loss of motivation and sometimes, poor mental health can be influenced by a drastic change in their lifestyle such as regularly being active outdoors. It is important that we pay attention to both mental and physical recovery as they interrelate with each other. Think of ways to keep your older loved ones recovering (or in some cases, yourself) motivated. Account for small progress and celebrate them as targets. In addition, speaking to a professional or even confiding in a family member can be beneficial to them getting their thoughts out. While the way life may look may have changed, its new routine does not necessarily have to be viewed through a bad light. Establishing hobbies and a strong support network for senior citizens can prove invaluable during this time.