What Are the Steps In the CAR T-Cell Therapy Process?

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What Are the Steps In the CAR T-Cell Therapy Process? from Patient Empowerment Network on Vimeo.

CAR T-cell therapy is a multi-step procedure, but how does it work? Expert Dr. Shambavi Richard walks through each step in the process and explains tests commonly performed to monitor treatment results. 

Dr. Shambavi Richard is Co-Lead Physician for the Myeloma CAR-T Programs at Mount Sinai Tisch Cancer Center. Learn more about Dr. Richard.

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

Related Resources:

Understanding the Basics of CAR T-Cell Therapy

Understanding the Basics of CAR T-Cell Therapy

 CAR T-Cell Therapy | How Can Care Partners Provide Support

CAR T-Cell Therapy | How Can Care Partners Provide Support

 How Has CAR T-Cell Therapy Transformed Myeloma Care?

How Has CAR T-Cell Therapy Transformed Myeloma Care?

Transcript:

Katherine:

Yeah. Well, now that we understand a bit more about what it is, let’s walk through the process. When a patient goes through CAR T, what happens first? 

Dr. Richard:

So, the first step is being referred to a CAR T physician. Right now, CAR T therapies can only be done in certain tertiary care institutions, not even all tertiary care institutions.  

They have to have the ability to manage and process cellular therapies. So, that’s limited right there. So, patients have to be referred to centers, so actually do these CAR T kind of therapies. Once they meet with the myeloma physician who deals with CAR Ts as well, then the way it works in our institution is then we assess them for which is the best kind of CAR T product the patient may be eligible for. Are they eligible for clinical trials? Do they fit the profile for clinical trial? Are the patients willing for clinical trails? If not, are they candidates for one of the commercially approved products? As I said, there is specific criteria. Patients have to have had at least four lines of therapy to be able to receive a commercially approved CAR T product.  

If that is the case, and once the process has been explained to the patient, they have to go through all the financials, the insurance approval. These are very expensive propositions. So, the insurance goes through all of the criteria to make sure that they will approve the product. Once the insurance approves, they also going through the institutional approval process to make sure that these are again being done for the right patient, and that they go through the institutional approval.

There are several patient specific characteristics. For instance, we want a patient who has the support structure to be able to support a therapy like this. They have to have a good performance status. They have to be relatively able to be able to handle these kinds of therapies. I went through all of those side effects that are possible. We look at their cardiac status. We look at the neurological status.  

We look at the pace at which their disease is escalating because these are again advanced patients. So, if somebody is relapsing very quickly, they may not have the time to wait to get to a slot for the apheresis, and then to wait again for the manufacturing to happen. So, we look at all of that. We look at their kidney function. And then finally in terms of their psychosocial, do they have their caretakers, the support system? Where do they live? Are they able to access our center? Are they from out of state?

If so, how are we going to manage during those initial months until they’re able, stable enough to be discharged back to their referring physician? So, we look at several things, so we have multiple teams of people, social work, pharmacy who looks at all of these different – and explains the pharmaceutical aspects of all of this, our finance team, our coordinators who put all of this together.  For the apheresis, we are involved with an apheresis team.  

And then the cell therapy lab that processes the cells, the vascular team to put in the lines required for the apheresis. So, there are several, several groups. And then if we need to get a consultation from our expert cardiologist or neurooncologist, we need to have those teams involved as well.  

Katherine:

How long does it take to know whether the treatment has been successful? 

Dr. Richard:

So, we get a sense depending on what their blood markers look like, we can get a sense within the first month if the patient is actually responding to the treatment or not. I generally wait for the first three months to do a actual formal assessment with their bone marrow and their PET scans and everything else because right around then they’ve gone through the initial acute post CAR T period. And so, at the time of the bone marrow we assess what it looks like, we send for a test called MRD which is minimal residual disease to see where they’re at with that. 

And PET scans to look at any areas of skeletal lesions or even extramedullary disease that they may have. So, I would say within the first month we get a sense, but by three months we do that first formal assessment. 

How Has CAR T-Cell Therapy Transformed Myeloma Care?

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How Has CAR T-Cell Therapy Transformed Myeloma Care? from Patient Empowerment Network on Vimeo.

How has the emergence of CAR T-cell therapy impacted myeloma care? Expert Dr. Shambavi Richard explains which myeloma patient groups could benefit from CAR T-cell therapy and shares research updates from recent clinical studies. 

Dr. Shambavi Richard is Co-Lead Physician for the Myeloma CAR-T Programs at Mount Sinai Tisch Cancer Center. Learn more about Dr. Richard.

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

Related Resources:

CAR T-Cell Therapy | What Are Potential Complications

CAR T-Cell Therapy | What Are Potential Complications?

 CAR T-Cell Therapy | How Can Care Partners Provide Support

CAR T-Cell Therapy | How Can Care Partners Provide Support

 What Are the Steps In the CAR T-Cell Therapy Process?

What Are the Steps In the CAR T-Cell Therapy Process?

Transcript:

Katherine:

Dr. Richard, how is CAR T-cell therapy impacting the landscape of myeloma care? 

Dr. Richard:

So, as I’d hinted or alluded to previously, prior to CAR T cells appearing on the horizon, we had very limited options for patients who had had the first several lines of therapy.  

So, once they had been exposed to two proteasome inhibitors, two iMiDs, and then anti-CD38 antibody which is the three major class of myeloma drugs, they are then called triple class exposed or penta-exposed depending on how many of these drugs they’ve been exposed to.   

We had a study called the MAMMOTH study back – this was published back in 2019 prior to the era of CAR T cells and other T-cell directed therapies. And at the time they had looked at patients who were triple class exposed, and who had been exposed to daratumumab were refractory to daratumumab as their last line of therapy. And what we saw was with their next line of therapy or whatever else was available at the time for patients such as these, their expected response rate was only about 30 percent or so, number one.  

Two, their outlook was very poor with a median progression-free survival which means that the amount of time that patients could go without the disease coming back, and that median progression-free survival was less than six months. And their expected even median overall survival was well under a year. So, that was what the landscape looked like when CAR T cells came onto the scene. For instance, the CART2 trials, which is one of the approved products which is cilta-cel which is what we have now, we actually saw for this same group of patients, the response rate was now 98 percent.  

Deep responses were 83 percent. And we now have the final readout of their median progression-free survival which is almost three years. So, you can see a significant difference.  

Under six months, media progression-free survival to three years. And over 50 percent of the patients were living over three years. So, that’s kind of where we are at. I mean so it was no small improvement. This considerably kind of almost reset the bar and has given a new lease of hope and life to patients who had advance myeloma. And one of the things we say in myeloma is although we don’t, as yet, say that myeloma’s curable, we are working towards that. But we are also giving options for other treatments, other research to be effective in patients just by keeping them around longer.  

Katherine:

Have there been any recent research developments involving CAR T-cell therapy that patients should know about? 

Dr. Richard:

Absolutely. So, much as I have highlighted all the hope and the optimism and the good things about this, the fact is we’re still not curing people with these therapies.  

So, we called this a plateau in the survival curve which means that if we achieve that plateau, that means the disease is probably not coming back, and we have essentially the definition of cured. But we’re not seeing that. We’re still seeing a downslope in the survival curves of myeloma which means that patients are still relapsing in spite of these excellent therapies.

So, there’s a lot of research going on into why are patients still relapsing? Is it because they’re losing the antigen which the CAR T cells are recognizing? Is it because the CAR T cells are no longer effective even though the antigen is still present? Is it because there’s a considerable lag time between the patients being freezed or collected, the cells being collected for the genetic modification in the lab to the time when the patients can actually receive these cells? And that can be anywhere between four to eight weeks.  

So, during this time period, patients with advanced myeloma may not remain static with their disease. The disease is progressing. They’re getting worse. They may not be candidates for these kinds of therapies. So, one of the areas of research is how can we speed up this process, this manufacture process? How can we make it much more available? Because they’re limited by the manufacturing facilities, their abilities to have these viral vectors, to be able to transduce these cells and genetically modify.

So, can we take them off of those kinds of things? Can we automate this? Can we improve these manufacturing platforms? So, a lot of different things are being tested. And then as I’d also mentioned earlier, right now they’re approved for advance myeloma, but what if we can bring them up earlier? Are patients actually going to get cured by that? Are they going to have a much better progression-free survival with that versus waiting until they’re very advanced? So, these are all many, many things that are being looked at.   

In addition, a lot of these CAR T products, these approved products, all them are all recognizing one antigen on the myeloma cell. Now there are products are being looked at that are dual target antigen recognition ability. So, that’s another thing. So, maybe if the CAR T cells are missing one of the antigens, and they’re not able to use that to kill the myeloma cell, maybe the other antigen can pick up the slack. So, these are various things that are being looked at. 

CAR T-Cell Therapy | What Are Potential Complications?

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CAR T-Cell Therapy | What Are Potential Complications? from Patient Empowerment Network on Vimeo.

CAR T-cell therapy may cause complications and side effects that their care partners should be aware of ahead of time. Expert Dr. Shambavi Richard reviews possible side effects, including cytokine release syndrome, and how patients are monitored during their hospital stay post-procedure.

Dr. Shambavi Richard is Co-Lead Physician for the Myeloma CAR-T Programs at Mount Sinai Tisch Cancer Center. Learn more about Dr. Richard.

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

Related Resources:

Understanding the Basics of CAR T-Cell Therapy

Understanding the Basics of CAR T-Cell Therapy

 How Has CAR T-Cell Therapy Transformed Myeloma Care?

How Has CAR T-Cell Therapy Transformed Myeloma Care?

 What Are the Steps In the CAR T-Cell Therapy Process?

What Are the Steps In the CAR T-Cell Therapy Process?

Transcript:

Katherine:

Dr. Richard, what are the potential side effects or complications of CAR T-cell therapy? 

Dr. Richard:

So, there are several possible side effects with CAR T therapy.  

It’s a little different from an autologous transplant. And I bring that up just to say because they are both cellular therapies, so are frequently compared and contrasted with autologous transplants which we have had for about three decades now. So, the main side effect after CAR T therapy is something called CRS or cytokine release syndrome. So, that happens when CAR T cells recognize the myeloma cells and kill them. A host of chemicals called cytokines are released in the body. And this can make a person feel like they have a bad case of the flu. So, it may be things like fevers, chills, body pains, headaches, loss of appetite, nausea, fatigue.

So, these are some common symptoms of cytokine release syndrome. But these are the milder forms, so in more severe cases of cytokine release syndrome, you can have things like drop in blood pressure, drop in oxygen levels, needing supplementation with oxygen.  

Or in terms of drop in pressure, they may need fluid resuscitation or sometimes even pressors, blood pressure medications that help to boost the blood pressure. So, that’s one major side effect. Another is something called neurotoxicity.  

So, you can have neurological side effects from CAR T therapy which when it occurs in the setting of CRS, that’s called ICANS or immune effector cell-associated neurotoxicity syndrome. That’s what that acronym stands for. And it has a constellation of symptoms such as confusion, disorientation, difficulty with some common everyday tasks. The handwriting may go off, attention deficit, things like that. But then in more severe forms of ICANS, you can actually have lethargy, coma, seizures, brain edema, so much more scary things.  

Then there is another form of toxicity called delayed neurotoxicity which looks completely different. Now you have things like Parkinson’s disease or neuropathies. Either cranial nerve neuropathies or peripheral neuropathies, Guillain-Barre which is a kind of ascending paralysis. So, all of these are also possible as neurotoxic side effects from CAR T therapy.

Aside from these, there is another which is called HLH or macrophage activation syndrome or hemophagocytic lymphohistiocytosis syndrome wherein patients can have organ toxicity, a spiking ferritin levels, new fevers, new neurotoxic symptoms, additional lab abnormalities such as liver function test abnormalities. So, these are other forms of just general CAR T-cell toxicity.   

Then in addition to these, you can have infections, prolonged blood count abnormalities, cytopenia as we call it which can affect the white cells or the platelets or anemia and things like that. So, these are also possible. And then finally things like second primary malignancies which can happen, other malignancies that can happen that may be related to CAR T therapy. A lot of these are still being studied. We don’t have a good understanding of how frequently this happens. But these are all possible side effects of CAR T therapy.  

Katherine:

Do any of the complications have to result in hospitalization? Or can patients be treated outside the hospital?  

Dr. Richard:

So, the way things stand now, and this may be slightly different depending on the specific CAR T product.  

But we generally keep patients hospitalized for the first two weeks after the cell infusion. Most of the side effects such as the CRS and the ICANS tends to occur during this hospitalization phase. HLH and delayed neurotoxicities can occur while they’re still in the later phases of the hospitalization, or it can occur late after they get discharged from the hospital. Infections and cytopenias of course can happen for a while following CAR T therapy.

Once they are discharged from the hospital, we ask that they stay close to us, usually within an hour or two of the hospital so that they can quickly come back in if there’s any issues. We see them quite frequently once they get discharged from the hospital. I see them at a minimum of once a week, more frequently at least a couple times a week, or even three times a week depending on what their blood count needs and monitoring needs are.  

So, we have them stay close to the hospital if they are far away. And the sponsor and our social worker, insurance can work together to figure out how to help them with the hotel costs if they have to stay close to us. So, that’s for an additional two weeks after they’ve discharged from the hospital. Following that, patients go back to their homes, but we still follow them quite frequently depending on what their needs are in terms of possible side effects. 

Understanding the Basics of CAR T-Cell Therapy

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Understanding the Basics of CAR T-Cell Therapy from Patient Empowerment Network on Vimeo.

CAR T-cell therapy is an exciting new option to treat multiple myeloma, but what patient type is this therapy right for? Expert Dr. Shambavi Richard defines CAR T-cell therapy and explains the eligibility requirements.

Dr. Shambavi Richard is Co-Lead Physician for the Myeloma CAR-T Programs at Mount Sinai Tisch Cancer Center. Learn more about Dr. Richard.

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

Related Resources:

CAR T-Cell Therapy | What Are Potential Complications

CAR T-Cell Therapy | What Are Potential Complications?

 How Has CAR T-Cell Therapy Transformed Myeloma Care?

How Has CAR T-Cell Therapy Transformed Myeloma Care?

 CAR T-Cell Therapy | How Can Care Partners Provide Support

CAR T-Cell Therapy | How Can Care Partners Provide Support

Transcript:

Katherine:

Let’s begin with the basics of CAR T-cell therapy. What is it? And maybe, actually, we could start with what CAR is short for.  

Dr. Richard:

So, CAR stands for chimeric antigen receptors, so CAR T cell is a chimeric antigen receptor T-cell therapy. What that means is T cells, which is one of the cells for immune system are actually come from the patient. They’re expanded and activated in a manufacturing facility. And there they undergo genetic modification to form the CAR T cells. And what’s special about the CAR T cells is that they have the capacity to recognize myeloma cells and are efficient killers of the myeloma cells.  

Katherine:

Who might this approach be right for? What determines eligibility? 

Dr. Richard:

So, interestingly enough, today as we speak, CAR T cells may be eligible for many, many different kinds of – in the phases, many different phases of the myeloma journey. When they were initially tested, as most new therapies are, they were tested on patients who had very advanced myeloma, really were not candidates or did not have great options for any other kinds of therapy. And when they got tested in these groups of patients, they really had stellar results that far outstripped anything else that we had as options for patients in those advanced stages of myeloma.

So, the approval for CAR T cells as they stand today for myeloma is for advanced myeloma with patients who have had four or more lines of therapy and have had exposure to pretty much the major three classes of therapies for myeloma which includes proteasome inhibitors, imides, and anti-CD38 antibody therapy.  

But having said that, now CAR T cells are being moved into earlier lines of therapy are now being tested in these in various clinical trials. And even for newly diagnosed myeloma patients to see if they are as good as autologous transplants. Are they better than autologous transplants? And so on and so forth. So, really that’s what I mean by saying for now CAR T cells are appropriate for anyone if they are candidates for clinical trials. But in terms of approved indications for CAR T therapy, those are for advanced myeloma patients who have had at least four lines of therapy. 

CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery Resource Guide

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Download Resource Guide

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

How Can CAR T-Cell Therapy Care Partners Find Support?

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How Can CAR T-Cell Therapy Care Partners Find Support? from Patient Empowerment Network on Vimeo.

Where can CAR T-cell therapy care partners access support? Expert Sarah Meissner and Adrienne, a care partner, discuss resources and share self-care advice for those caring for a loved one.

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

Related Resources:

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self Care

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care?

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

How Can a Social Worker Help 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:

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. 

What Are Common Issues That CAR T-Cell Therapy Care Partners Face?

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What Are Common Issues That CAR T-Cell Therapy Care Partners Face? from Patient Empowerment Network on Vimeo.

CAR T-cell therapy is a long process, but what can care partners expect? Expert Sarah Meissner reviews common issues that care partners face, and Adrienne, a care partner, shares the difficulties that she encountered as well as the lessons she learned that might help ease difficulties for other care partners.

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

Related Resources:

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self Care

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care?

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

How Can a Social Worker Help 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:

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. 

A CAR T-Cell Therapy Care Partner Shares Her Story

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A CAR T-Cell Therapy Care Partner Shares Her Story from Patient Empowerment Network on Vimeo.

What can patients and care partners expect when undergoing CAR T-cell therapy? Care partner Adrienne shares her husband’s experience with CAR T-cell therapy and explains her role as his care partner, while expert Sarah Meissner shares insights.

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

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

Expert Advice for CAR T-Cell Therapy Care Partners

 How Does the CAR T-Cell Therapy Process Work?

How Does the CAR T-Cell Therapy Process Work?

 Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

Transcript:

Katherine:

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 get 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. 

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

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CAR T-Cell Therapy Care Partners: Tools for Accessing Support

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CAR T-Cell Therapy Care Partners: Tools for Accessing Support from Patient Empowerment Network on Vimeo.

How can care partners access support during the CAR T-cell therapy process? Expert Dr. Amitkumar Mehta discusses the support patients may need during CAR T and resources for accessing patient and family support.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

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

Related Resources:

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

 What Is CAR T-Cell Therapy for Myeloma?

What Is CAR T-Cell Therapy for Myeloma? 

 How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape? 

Transcript:

Katherine:

What support services or resources are available for care partners of patients who are undergoing CAR T-cell therapy?

Dr. Mehta:

Unfortunately, I have to say that there are not that many support systems existing. It depends on the center most of the time. And, remember, that many of the centers – you know, CAR T is not offered at every community center.

Usually, they are certified centers. So, on an average, patients might have to travel to go to the center, right? So, it’s mainly center dependent. Now – and, you know, like, if I talk about my center, as I was mentioning, that I like to have the caregiver as a part of the process so they are aware what the patient is going through. Second person is – or second team person is our clinic nurse or CAR-T coordinator who actually talks to the patient in depth as well as patient’s caregiver.

Now, if you are living farther away from the center, three hours, four hours, five hours, in that case, where do I lodge myself, whether there is any other support system? We are going to stay here. Where I’m going to eat? Where is the center? Where do I have to them, whether I have to take them daily or not? So, those kinds of information is provided mainly by the center.

And centers also have many other support systems that we can tap in. The most important is to highlight is CAR T is not cheap. It’s very expensive treatment, right? So, there’s an extra step of insurance approval. Well, what is your copay? So, financial toxicity so to speak also come in picture and not only for the patients but their caregiver also.

We need to sit down if they need additional help. What other sources? What are the other agencies or maybe a local church or local community it can help? One other thing that our center has done, which has helped quite a bit, we have a patient ambassador. There was a patient who had gone through CAR T, and he had such an experience that he decided to offer his service to other patients who were going through CAR T. And he is always available.

So, he always – whenever he comes for the clinic visit and says “I’ll be happy to talk to anyone including his family, right, his mother and his father. They’re available that if [they support the patient], the caregiver, we would like to talk to them. And we would like to share our experience. And, if they have any questions, we can share the resources available to go through CAR T because, at the end, it’s a potentially curative option.