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PODCAST: CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery

 

Understanding CAR T-cell therapy and recovery is vital for care partners who are caring for a loved one undergoing this treatment approach. Dr. Shambavi Richard explains the CAR T-cell therapy process, potential complications, ongoing research in the field, and discusses how care partners can provide support at each stage of the process.

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

Download Resource Guide

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


Transcript:

Katherine:

Today we’re going to learn about CAR T-cell therapy to help care partners understand how it works, what happens during recovery, and why care partners are so essential throughout the process. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll 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 us is Dr. Shambavi Richard. Dr. Richard, welcome. Will you please introduce yourself? 

Dr. Richard:

Hi. I’m Shambavi Richard. I am in the myeloma faculty at Mount Sinai. I’m Associate Professor of Medicine. And I codirect the CAR T and cellular therapies for myeloma at my institution.    

Katherine:

Well, thank you so much for joining us today. We really appreciate you taking the time.  

Dr. Richard:

Thanks for having me.  

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 advance 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.  

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 transplants. 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.   

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 rates 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.  

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 a 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.  

Katherine:

You mentioned the role of the care partner, and you’ve talked about the recovery process and how involved it is. What do you feel is the care partner’s role in helping a patient through the process? 

Dr. Richard:

I think much of it is emotional and psychological support. I think that is very, very key. But in terms of actually what they do, we do ask that they have a caretaker available 24/7 if possible at least for the first month or so following their CAR T. And this is because they need a lot of support going back and forth from wherever they’re residing whether it’s a hotel or whether it’s their own home because there are a lot of clinic visits during that time.  

We do ask that the patients don’t drive for at least the first month, maybe even the first couple of months following the CAR T because again they can have neurological side effects that may be somewhat subtle. Their judgement may be impaired, but they may not look that different. So, a caretaker who knows them well is very useful in saying, “There’s something weird about how Joe’s acting lately,” or something like that.

So, that’s very important as well to bring them back and forth and to manage all of these. And if there’s a problem in the middle of the night, if they’re having new fevers, they’re suddenly neurologically altered, they do need a person to be able to handle things and bring them in and get the adequate medical support.  

Katherine:

What questions should care partners be asking if they begin the process? 

Dr. Richard:

I think a good understanding of all of those.  

So, whatever that takes for each individual person. We have patients of various different kinds who have come to us, some who have researched it and really know what’s going on out there, and others who are comparatively, “What is this CAR T thing? We have no idea what this is all about.” So, I meet each one where they are. I go over the entire process. I touch on all the different things that we just spoke about. I talk about the logistics of it. I talk about the timing. One of the traffic jams is being able to get that initial fresis slot to be able to even send the cells to the manufacturing.

So, there’s a question of managing the resources and making sure that patients are getting to their CAR T slots in a timely manner. So, a good part of it is an understanding that all of this is not something that happens overnight. There is several moving parts. There is a way, and their system, and a way that all of these have to be aligned.  

So, I pretty much answer whatever they have, but I think questions touching on all of this. And finally, they exact thing that you asked, “How is it that they can help? What are the things that they can do to help?” And I think that is hugely important as well.   

Katherine:

Yeah. Why is it so important that care partners let the care team know about any changes in the patient? 

Dr. Richard:

I think the earlier we know of changes, the better. We can handle these things. There is a time sensitivity to a lot of this. If issues that happen are not addressed right away, they can evolve to more severe condition. And once if they’re more severe, they’re less likely to respond right away to the therapeutic maneuvers that we have. So, I think that’s really important.  

And if they’re outpatient, we do bring them in for hospitalization right away. If there is anything that is – the delayed forms of these side effects can sometimes be also a little bit harder to resolve and turn around. So, it’s important that they come back to the hospital right away, get admitted for the workup, so that we can escalate the speed at which things can be done.  

Katherine:

Being a care partner can be overwhelming at times. Do you have any advice to help care partners as they cope with their role? 

Dr. Richard:

There’s a lot of support groups. I really encourage them to start talking to a social worker right away. So, our social workers really do get engaged in the process pretty early. There are many different kinds of support groups. There are support groups that are myeloma specific, and then support groups within those that are offshoots for CAR T patients, so people either thinking of going through a CAR T or in the middle of it or even post CAR T.  

All the anxiety of the monitoring and, “Is the disease going to come back?” And that can weigh heavily on the caretaker as well. So, an emotionally supported caretaker and patient just makes it a lot easier for everybody including the medical care teams to be able to handle all of this.   

Katherine:

We have a few questions that are community sent in prior to the program. I’d like to start with Melissa’s question. “Do you have any advice for handling the emotional highs and lows as well as personality changes within the relationship?”  

Dr. Richard:

That can be a challenging one. And as medical doctors, we tend to not be the best people to usually – and so what I really draw on is social work and our coordinator’s support for that kind of thing. At our institution we have a affiliate of care of supportive care oncology team who help with a lot of the symptom management or anything like that. 

And if it’s something that actually needs more than just counseling, if they actually need medications, then we have our psychiatric oncology groups who also help with a lot of those. So, I think being prepared for any of these is important, but I think a lot can be handled just by having a good adequate support of care that starts right at the beginning of the process before things start getting overwhelming.  

Katherine:

Yeah. Here’s another question we received: What kind of nutrition does a patient need during this process? And how can the care giver ensure adequate nutritional support? 

Dr. Richard:

So, among our various teams, we have actually a nutritionist who actually meets with the patient about the time of their discharge from the hospital. And they give them a lot of guidelines about how to handle various dietary things.  

In general, going into CAR T, a well-balanced healthy diet is always a good thing. Maintain your diet well as much as possible. Following the CAR T process, we do follow guidelines for what we call a neutropenic diet wherein well-cooked meats are preferable to anything undercooked because that’s where you can have a lot of bacteria. We advise against raw or undercooked meats of all kinds. Pasteurized foods obviously much better than don’t go for the unpasteurized. Don’t go for the soft cheeses which tends to be unpasteurized or typical wherein you can have – and also in terms of nuts, prefer the roasted nuts rather than the raw nuts and things like that. So, any fruits and vegetables, we advise that they should be well washed and cleaned. 

We advise against the thin-skinned ones that are harder to clean. We prefer rather the thick-skinned fruits where you can wash it well and then peel it. So, those have less tendency to spread diseases and bacteria and things like that. So, those are some of the things that we advise. And we do give them a dietary sheet wherein they have the dos and don’ts, but because it’s easy to forget some of these. We prefer don’t go to delis. Don’t get deli meat. So, if you like those kinds of things, get the packaged form where you can control the quality of things like that.  

Katherine:

What about something like raw fish? Is that recommended or not? 

Dr. Richard:

We prefer it not. Raw fish again like smoked fish and things like that, we prefer to avoid those things at least for the first few months after CAR T. We generally make these somewhat straight for the first three months.  

Post CAR T patients are immunosuppressed for a long time. There’s no great science at the three-month mark because I think at three months plus one day you’re probably still at some risk. And everybody’s immune recovery is different. So, patients who are immunosuppressed for a long time, I say, “Just try to stick to these unless it’s something that you really can’t do without.” But it’s much better to try to maintain these guidelines for as long as possible.  

Katherine:

Another audience member wants to know, “What is the difference between CAR T and bispecific antibody treatment?” 

Dr. Richard:

Oh, good one. So, as I mentioned, with the CAR Ts, the T cells that are taken from the patient is actually genetically modified. So, these are kind of souped-up T cells if you want to put it that way because one, they efficiently recognize that myeloma cells, and two, they are efficient killers of the myeloma cells which are the two main jobs of your T cells.  

With a bispecific antibody, this is an off the shelf thing, so this is not manufactured specifically for the patient. And then it’s a drug. And the drug has two receptors. One recognizes the myeloma cell, and the other recognizes the patient’s own T cells. So, these are unmodified T cells that just floating around. And they bring the patient’s T cells to the myeloma cell to kill it. So, that’s the difference. It’s an off the shelf product versus a manufactured. The T cells are your own. They are not manufactured in any way, but otherwise they’re kind of similar in that they’re both T-cell directed killing mechanisms, and they recognize the myeloma cell.  

Katherine:

Okay. Thank you for that. Thoughtful answers, Dr. Richard. We appreicate it. Before we end the program, I’d like to get your final thoughts. What message would you like to leave the audience with? 

Dr. Richard:

I want to leave a message of hope. I want to leave a message that there is so much research going on.  

And we couldn’t do any of these without the involvement of patients and their caregivers. And that’s how we have moved the field forward to this extent. And that’s how we continue to move the field forward. There’s a lot of reason to hope. And the Holy Grail, of course, is cure. And that’s what the entire myeloma community is working toward getting to that goal one day. So, I want to thank the patients and the caregivers for helping to move this, so helping themselves and helping others.  

Katherine:

Well, Dr. Richard, thank you so much for taking the time to join us today.  

Dr. Richard:

Thank you for having me.  

Katherine:

And thank you to all of our partners.  

If you’d like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And 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 care partner, visit powerfulpatients.org.  

I’m Katherine Banwell. Thanks for being with us. 

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

CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery from Patient Empowerment Network on Vimeo.

Understanding CAR T-cell therapy and recovery is vital for care partners who are caring for a loved one undergoing this treatment approach. Dr. Shambavi Richard explains the CAR T-cell therapy process, potential complications, ongoing research in the field, and discusses how care partners can provide support at each stage of the process.

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

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

Related Resources:

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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

Expert Advice for CAR T-Cell Therapy Care Partners

Expert Advice for CAR T-Cell Therapy Care Partners

Transcript:

Katherine:

Today we’re going to learn about CAR T-cell therapy to help care partners understand how it works, what happens during recovery, and why care partners are so essential throughout the process. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll 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 us is Dr. Shambavi Richard. Dr. Richard, welcome. Will you please introduce yourself? 

Dr. Richard:

Hi. I’m Shambavi Richard. I am in the myeloma faculty at Mount Sinai. I’m Associate Professor of Medicine. And I codirect the CAR T and cellular therapies for myeloma at my institution.    

Katherine:

Well, thank you so much for joining us today. We really appreciate you taking the time.  

Dr. Richard:

Thanks for having me.  

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 advance 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.  

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 transplants. 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.   

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 rates 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.  

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 a 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.  

Katherine:

You mentioned the role of the care partner, and you’ve talked about the recovery process and how involved it is. What do you feel is the care partner’s role in helping a patient through the process? 

Dr. Richard:

I think much of it is emotional and psychological support. I think that is very, very key. But in terms of actually what they do, we do ask that they have a caretaker available 24/7 if possible at least for the first month or so following their CAR T. And this is because they need a lot of support going back and forth from wherever they’re residing whether it’s a hotel or whether it’s their own home because there are a lot of clinic visits during that time.  

We do ask that the patients don’t drive for at least the first month, maybe even the first couple of months following the CAR T because again they can have neurological side effects that may be somewhat subtle. Their judgement may be impaired, but they may not look that different. So, a caretaker who knows them well is very useful in saying, “There’s something weird about how Joe’s acting lately,” or something like that.

So, that’s very important as well to bring them back and forth and to manage all of these. And if there’s a problem in the middle of the night, if they’re having new fevers, they’re suddenly neurologically altered, they do need a person to be able to handle things and bring them in and get the adequate medical support.  

Katherine:

What questions should care partners be asking if they begin the process? 

Dr. Richard:

I think a good understanding of all of those.  

So, whatever that takes for each individual person. We have patients of various different kinds who have come to us, some who have researched it and really know what’s going on out there, and others who are comparatively, “What is this CAR T thing? We have no idea what this is all about.” So, I meet each one where they are. I go over the entire process. I touch on all the different things that we just spoke about. I talk about the logistics of it. I talk about the timing. One of the traffic jams is being able to get that initial fresis slot to be able to even send the cells to the manufacturing.

So, there’s a question of managing the resources and making sure that patients are getting to their CAR T slots in a timely manner. So, a good part of it is an understanding that all of this is not something that happens overnight. There is several moving parts. There is a way, and their system, and a way that all of these have to be aligned.  

So, I pretty much answer whatever they have, but I think questions touching on all of this. And finally, they exact thing that you asked, “How is it that they can help? What are the things that they can do to help?” And I think that is hugely important as well.   

Katherine:

Yeah. Why is it so important that care partners let the care team know about any changes in the patient? 

Dr. Richard:

I think the earlier we know of changes, the better. We can handle these things. There is a time sensitivity to a lot of this. If issues that happen are not addressed right away, they can evolve to more severe condition. And once if they’re more severe, they’re less likely to respond right away to the therapeutic maneuvers that we have. So, I think that’s really important.  

And if they’re outpatient, we do bring them in for hospitalization right away. If there is anything that is – the delayed forms of these side effects can sometimes be also a little bit harder to resolve and turn around. So, it’s important that they come back to the hospital right away, get admitted for the workup, so that we can escalate the speed at which things can be done.  

Katherine:

Being a care partner can be overwhelming at times. Do you have any advice to help care partners as they cope with their role? 

Dr. Richard:

There’s a lot of support groups. I really encourage them to start talking to a social worker right away. So, our social workers really do get engaged in the process pretty early. There are many different kinds of support groups. There are support groups that are myeloma specific, and then support groups within those that are offshoots for CAR T patients, so people either thinking of going through a CAR T or in the middle of it or even post CAR T.  

All the anxiety of the monitoring and, “Is the disease going to come back?” And that can weigh heavily on the caretaker as well. So, an emotionally supported caretaker and patient just makes it a lot easier for everybody including the medical care teams to be able to handle all of this.   

Katherine:

We have a few questions that are community sent in prior to the program. I’d like to start with Melissa’s question. “Do you have any advice for handling the emotional highs and lows as well as personality changes within the relationship?”  

Dr. Richard:

That can be a challenging one. And as medical doctors, we tend to not be the best people to usually – and so what I really draw on is social work and our coordinator’s support for that kind of thing. At our institution we have a affiliate of care of supportive care oncology team who help with a lot of the symptom management or anything like that. 

And if it’s something that actually needs more than just counseling, if they actually need medications, then we have our psychiatric oncology groups who also help with a lot of those. So, I think being prepared for any of these is important, but I think a lot can be handled just by having a good adequate support of care that starts right at the beginning of the process before things start getting overwhelming.  

Katherine:

Yeah. Here’s another question we received: What kind of nutrition does a patient need during this process? And how can the care giver ensure adequate nutritional support? 

Dr. Richard:

So, among our various teams, we have actually a nutritionist who actually meets with the patient about the time of their discharge from the hospital. And they give them a lot of guidelines about how to handle various dietary things.  

In general, going into CAR T, a well-balanced healthy diet is always a good thing. Maintain your diet well as much as possible. Following the CAR T process, we do follow guidelines for what we call a neutropenic diet wherein well-cooked meats are preferable to anything undercooked because that’s where you can have a lot of bacteria. We advise against raw or undercooked meats of all kinds. Pasteurized foods obviously much better than don’t go for the unpasteurized. Don’t go for the soft cheeses which tends to be unpasteurized or typical wherein you can have – and also in terms of nuts, prefer the roasted nuts rather than the raw nuts and things like that. So, any fruits and vegetables, we advise that they should be well washed and cleaned. 

We advise against the thin-skinned ones that are harder to clean. We prefer rather the thick-skinned fruits where you can wash it well and then peel it. So, those have less tendency to spread diseases and bacteria and things like that. So, those are some of the things that we advise. And we do give them a dietary sheet wherein they have the dos and don’ts, but because it’s easy to forget some of these. We prefer don’t go to delis. Don’t get deli meat. So, if you like those kinds of things, get the packaged form where you can control the quality of things like that.  

Katherine:

What about something like raw fish? Is that recommended or not? 

Dr. Richard:

We prefer it not. Raw fish again like smoked fish and things like that, we prefer to avoid those things at least for the first few months after CAR T. We generally make these somewhat straight for the first three months.  

Post CAR T patients are immunosuppressed for a long time. There’s no great science at the three-month mark because I think at three months plus one day you’re probably still at some risk. And everybody’s immune recovery is different. So, patients who are immunosuppressed for a long time, I say, “Just try to stick to these unless it’s something that you really can’t do without.” But it’s much better to try to maintain these guidelines for as long as possible.  

Katherine:

Another audience member wants to know, “What is the difference between CAR T and bispecific antibody treatment?” 

Dr. Richard:

Oh, good one. So, as I mentioned, with the CAR Ts, the T cells that are taken from the patient is actually genetically modified. So, these are kind of souped-up T cells if you want to put it that way because one, they efficiently recognize that myeloma cells, and two, they are efficient killers of the myeloma cells which are the two main jobs of your T cells.  

With a bispecific antibody, this is an off the shelf thing, so this is not manufactured specifically for the patient. And then it’s a drug. And the drug has two receptors. One recognizes the myeloma cell, and the other recognizes the patient’s own T cells. So, these are unmodified T cells that just floating around. And they bring the patient’s T cells to the myeloma cell to kill it. So, that’s the difference. It’s an off the shelf product versus a manufactured. The T cells are your own. They are not manufactured in any way, but otherwise they’re kind of similar in that they’re both T-cell directed killing mechanisms, and they recognize the myeloma cell.  

Katherine:

Okay. Thank you for that. Thoughtful answers, Dr. Richard. We appreicate it. Before we end the program, I’d like to get your final thoughts. What message would you like to leave the audience with? 

Dr. Richard:

I want to leave a message of hope. I want to leave a message that there is so much research going on.  

And we couldn’t do any of these without the involvement of patients and their caregivers. And that’s how we have moved the field forward to this extent. And that’s how we continue to move the field forward. There’s a lot of reason to hope. And the Holy Grail, of course, is cure. And that’s what the entire myeloma community is working toward getting to that goal one day. So, I want to thank the patients and the caregivers for helping to move this, so helping themselves and helping others.  

Katherine:

Well, Dr. Richard, thank you so much for taking the time to join us today.  

Dr. Richard:

Thank you for having me.  

Katherine:

And thank you to all of our partners.  

If you’d like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And 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 care partner, visit powerfulpatients.org.  

I’m Katherine Banwell. Thanks for being with us. 

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

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

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

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

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

Download Resource Guide

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.   

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need from Patient Empowerment Network on Vimeo.

 What do care partners need to know to help care for their loved one AND themselves? This animated video reviews the role of a care partner, discusses steps for supporting a loved one and provides tips for maintaining self-care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Living With Prostate Cancer

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Tools for Accessing Quality Prostate Cancer Care

Transcript: 

Anthony: 

Hi! I’m Anthony, and I am living with advanced prostate cancer. This is my nurse, Niki.  

And this is my wife, Jane. She’s not just my wife, she’s also my care partner. From helping with my appointment schedule to communicating with my healthcare team, she works with me to manage my prostate cancer. 

Jane: 

And many of you may be care partners like me. The goal of this video is to help you understand your role and to gain tools to help you support your loved one in their cancer journey. And that includes prioritizing your own self-care.  

Niki, we’ve talked about some of the things I do to help Anthony, but how would you describe the role of a care partner?  

Niki: 

A care partner is someone who works with their loved one on their care every step of the way – from diagnosis to survivorship.  

It’s important to mention that anyone can play this role – friend, family member, or loved one – whomever you trust with supporting your health.  

Jane: 

And there isn’t a single way be a care partner. You can provide support in a way that feels comfortable and natural to you. 

Niki, what are some of the ways a care partner can help?   

Niki: 

Yes – let’s review a few steps. Care partners can assist by: 

  • Learning about your loved one’s prostate cancer, so you can feel confident in participating in conversations and decisions. You can ask their healthcare team for educational resources. 
  • And participating in doctors’ appointments by taking notes and requesting post-visit summaries so that you can review the information presented. 
  • Next, helping your loved one access and use their patient portal and maintaining schedules and organizing medical records. 
  • Listening to your loved one and assist in weighing the pros and cons of care decisions. 
  • And monitoring your loved one’s emotional health. 

Jane: 

That’s a great point, Niki. Sometimes a care partner will notice that their loved one is feeling low or acting differently before they notice anything themselves. Care partners can help communicate these issues to the healthcare team, and can even reach out to a mental health professional or social worker to help.  

Niki: 

And that leads me to the next important step that many care partners often overlook: Taking care of yourself.  

Anthony: 

Right – and as we experienced firsthand, this is essential. Jane struggled with making time for herself after I was diagnosed, and it negatively impacted her health.  

Jane: 

I was totally drained. But adding time for myself on the calendar and keeping up with my self-care appointments made me feel better. What else can you do? 

  • First, prioritize your health by scheduling and keeping your OWN health care appointment. 
  • Continue doing the activities that you enjoy – there are ways to make time in the schedule, even if it doesn’t seem like it.   
  • Find and use strategies that work for you to manage stress, like exercise, reading a book, or anything you find relaxing. Even a short walk with a friend can have a big impact. 
  • And make a list of tasks you can pass off to friends and family members who offer to help.  

Niki: 

That’s great advice, Jane. I’ll also add that caring for a loved one can be challenging – it’s normal to feel a range of emotions. If you’re feeling overwhelmed, talking with someone about how you’re feeling can make a difference. And speaking candidly and openly with other care partners in a support group setting can also provide comfort and peace of mind. 

Just like Anthony sought the advice of a counselor and social worker, it’s important that Jane find that support SHE needs as a care partner. 

Jane: 

We hope this video helped you gain tools and strategies for helping support a loved one – and yourself. 

Anthony: 

Download the guide that goes with this video to review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

Where Can CLL Patients Access Financial Support?

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

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

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

See More from Thrive CLL

Related Resources:

Understanding CLL Treatment Classes

Understanding CLL Treatment Classes

Educational Resources for CLL Patients

Educational Resources for CLL Patients

Emerging CLL Treatment Approaches

Emerging CLL Treatment Approaches

Transcript:

Katherine:  

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

Dr. Bhat:  

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

Katherine:  

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

Dr. Bhat:  

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

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

Katherine:  

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

Dr. Bhat:

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

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

Five Ways the PEN Empowerment Lead Program Can Support Your Cancer Journey

Our Empowerment Lead program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our Empowerment Leads are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Empowerment Leads. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Empowerment Leads will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Empowerment Leads. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Empowerment Leads

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Empowerment Leads. You can easily see the community that each Empowerment Lead serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Empowerment Lead resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions? from Patient Empowerment Network on Vimeo.

Dr. Jorge Castillo discusses the patient’s role in their Waldenström macroglobulinemia (WM) treatment decisions and shares advice encouraging patients to be active participants in their care.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches

When Is It Time to Treat Waldenström Macroglobulinemia?

When Is It Time to Treat Waldenström Macroglobulinemia?

Why Patients Should Speak Up About WM Symptoms and Side Effects

Why Patients Should Speak Up About WM Symptoms and Side Effects


Transcript:

Katherine:                  

What do you feel is the patient’s role in treatment decisions?

Dr. Castillo:               

From my perspective, the patient’s role is very important. I need, as a physician, that the patient feels that it’s part of the team here. So, when patients come to see me, I strongly encourage patients to bring as many people as they want with them. If they want somebody on FaceTime at the same time, I’m happy with that too. And that helps because the amount of data that we provide, the amount of information that we provide, is a lot in terms of quantity. But sometimes, it’s not easy to understand when you just hear it one time, right?

So, having somebody taking notes, having somebody else taking notes, having somebody else listening, somebody else asking questions, and then somebody else explaining back to the patient – the patient is looking for the best for them, but if he’s also affected by the whole process. It would be naïve to feel – or to think – that somebody was told they have an incurable blood cancer, and they are completely paying attention to everything you’re saying, after you said something like that.

So, I think it’s important for patients to be there with family, friends, or whoever wants to be there to help out. I think that’s a really important aspect. Then, number two is you need to know about your own disease. And I am fortunate to work with a group of patients who are highly educated, to the point that they get to know more about their disease than their own doctor. And I think that’s key. I think that’s important. For me, that is not threatening or challenging. I think that is actually a good thing.

And that way, I can have a more direct conversation, meaningful, because I understand that the patient is understanding what I am saying, and we are trying to speak the same language, so I think that is key also. So, bottom line, I think education from the patient perspective, involvement of their care, I think that’s key so they can be their own best advocates.

There is going to be a lot of – since it’s a rare disease, there’s going to be a lot of backs and forths with different physicians. Some physicians are going to be more intensive and trying to treat when the patient doesn’t need to be treated. The opposite is also true in which a patient, they do need treatment, and the physicians are saying, “No, we can wait a little bit longer.” And again, that has nothing to do with the quality of the doctor. It’s just the fact that the disease is rare, and to keep up with it is very difficult. So, the patient being their best advocate is actually a very important role that they should have.

Katherine:                  

Knowledge is power.

Dr. Castillo:               

That’s right.

How Speaking Up Can Positively Impact Your Colon Cancer Care

How Speaking Up Can Positively Impact Your Colon Cancer Care from Patient Empowerment Network on Vimeo.

Why should you advocate for the best care for you? Dr. Smitha Krishnamurthi, a colon cancer specialist from Cleveland Clinic, provides key advice to access better care, including the value of second opinions, and why you should feel empowered to speak up.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

Should Your Family Members Be Screened for Colon Cancer?


Transcript:

Katherine Banwell:

What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or even a second opinion?

Dr. Krishnamurthi:

I would advise patients to not worry about that at all. I think that any one of us diagnosed with colorectal cancer would want a second opinion, would want to make sure that we’re getting an opinion from a high-volume cancer. Working here are Cleveland Clinic, I have the luxury of focusing on treatment of gastrointestinal cancers, whereas my colleagues who are in the community are treating patients with all different types of cancers. They have to be knowledgeable in all different types of cancers.

I think that’s actually much harder. I think that if your oncologist is not a specialist, the oncologist may actually appreciate having an opinion from a specialist, which helps them as well.

I think that if the doctor is going to be offended, then that’s probably not the right doctor to see. I think it’s important to just advocate for oneself and go for it.

Katherine Banwell:

That leads to my next question. What advice do you have about self-advocacy, about speaking up for yourself as a patient?

Dr. Krishnamurthi:

I think that’s very important to feel comfortable with your treatment team, with the doctor, nurse, nurse practitioner. If you have the luxury where you have choices where you live, seek out somebody who you can really connect with. I think it’s very important for the treating team to know what the patient is going through.

We have to know how the treatment is going so that we’re dosing properly, making adjustments. We want to know what our patient’s goals are so that we’re providing the best quality care.

I think it’s helpful to bring somebody to appointments. Or if you can’t bring somebody, you’ll call them on the phone. We’re doing that a lot now. People are joining by video call or even speaker phone. Many offices will have a speakerphone. You can ask to have somebody called on your behalf. Especially with COVID and the restricted visitation. Let’s get people on the phone. Somebody else to listen for you. For the patient, I mean, and to take notes. That really helps

Peer-to-Peer Advice for Newly Diagnosed Myeloma Patients

Peer-to-Peer Advice for Newly Diagnosed Myeloma Patients from Patient Empowerment Network on Vimeo.

Myeloma Network Manager Honora and Myeloma patient Barry stress the importance of finding a myeloma specialist as soon as possible, finding a support group, being comfortable with your healthcare team. Remaining hopeful and positive throughout your diagnosis is key.


Transcript:

Honora Miller

I’d like to point out the importance of finding a myeloma specialist as soon as possible in your myeloma journey. There have been studies done, I can’t point to the specifics of one at this moment, there have been studies done that have shown that myeloma patients who have a myeloma specialist have a better long-term outcomeWhen you get a myeloma specialist, they’re dealing, they’ve dealt with hundreds, perhaps thousands of myeloma patients, and because of the complexity and variation of the myeloma with the disease, really you need to have that level of knowledge. So that would be something that I would encourage somebody newly diagnosed to find, to be referred to a myeloma specialist, possibly not as their primary provider, but as a secondary guider of the process. I do have that. So, I have a second doctor who I meet with quarterly, say, who is at a different institution who guides my myeloma treatment, and he’s a myeloma specialist and he handled my stem cell transplant. 

Barry Marcus

I think it’s very important to have a support group. Somebody who is newly diagnosed, I would counsel them to seek out a support group now it’s hard in the time of COVID, the support group that I was in, quit meeting because of it. I’m right now in the process of trying to find another one that meets virtually, and I would highly recommend that it feels good to connect with people who are going through the same things that you are, and maybe get varied perspectives on different issues around myeloma.  

I really want to emphasize how important it is to get information and to feel comfortable with your health team and the care that you’re getting and pursue that. Don’t feel like you’re worried about offending anybody, because in the first place, probably you’re not. In the second place, it’s your life. If you die, they go on to the next patient. And you’re done. 

 Honora Miller

True enough. True enough. For new patients, and I’ve talked to quite a few, having hope is something that is very important and having a positive outlook, and when you get this sudden diagnosis, it’s very scary and overwhelming. But I want to encourage people to remain hopeful, to stay positive, this is an as yet incurable cancer, but it’s being treated more and more like a chronic disease, and there’s never been a time as good as now in terms of the number of treatment options and new drugs that are coming down the pipeline, so it’s a time of great hope for myeloma, and I want to emphasize that for people because I do think that it’s important for people to hold on to that. 

Barry Marcus

I couldn’t agree more. That’s well said.

Receive Personalized Support Through PEN’s New Text-Line

Now, you can receive personalized support from our Network Managers by texting EMPOWER to +1-833-213-6657. Each of our Network Managers is a compassionate volunteer who can offer you their first-hand experience with specific cancer types. Whether you’re a cancer patient, or caring for someone who is, PEN’s Network Managers will be here for you at every step of your journey. 

To introduce how you can benefit from the PEN Text-Line, we’ve shared the following FAQs, but please let us know if you have feedback or further questions.

What number do I text?

+1-833-213-6657

Who will receive and respond to my text messages?

Your text will be received by PEN’s Network Manager Coordinator, who will then connect you to the Network Manager best-suited to support your needs. Additional Network Managers may also respond, as we know it can be helpful to receive more than one perspective.

Your initial message to the PEN Text-Line will receive an auto-response, but please know that it will soon be read and personally responded to by a member of the PEN team! 

What types of support can I receive from the Network Managers?

Through their personal experiences with cancer, PEN’s Network Managers are here to offer you community and connection. You can ask us anything! For example:

  • Cancer-focused guidance
  • Online and in-person support groups for patients or care partners
  • Financing options for cancer treatment
  • Identifying clinical trials
  • Recommended webinars
  • What questions to ask your healthcare team
  • Methods for managing stress, and for living in the moment
  • How to share the news of your diagnosis with loved ones and colleagues

We also encourage you to reach out even if you don’t have a specific question; you are not in this alone—there will always be someone from the Patient Empowerment Network team here to listen and offer encouragement. 

Are there other reasons to engage with PEN’s Text-Line?

Definitely! 

Send us your suggestions for our online content and services. For example: 

  • What topics would you like us to cover more, or less often?
  • Do you have suggestions for PEN’s future Empowered #PatientChats
  • Would you like to contribute articles to the PEN blog
  • Do you want to inspire others by sharing the story of your own path to patient empowerment?

Be the first to receive the latest PEN news by texting the word EMPOWER to the Text-Line. You will then be prompted to choose what notifications you would like to subscribe to. For example:

  • Upcoming PEN webinars and other events
  • New content releases from the Network Managers
  • Wellness boosts, such as notes of encouragement and health tips

Is my interaction with the PEN Network Managers Text-Line HIPAA compliant?

Your messages will always be kept in strict confidence, however the PEN Text-Line is not HIPAA compliant. Therefore, we encourage you to use discretion when discussing specific information such as your or other individuals’ names, diagnosis details, etc. Please note that any advice provided by the PEN Network Managers is not medical advice. We also recommend patients refrain from giving other patients medical advice.

Who can I contact for more information or to provide feedback?

Feel free to email Nykema Mpama at kema@powerfulpatients.org.

Message and data rates may apply 

 

Advocating for Key AML Testing: Advice From an Expert

Advocating for Key AML Testing: Advice From an Expert from Patient Empowerment Network on Vimeo.

Dr. Hetty Carraway, an AML specialist at Cleveland Clinic, shares advice on advocating for yourself when diagnosed with AML, underscoring the importance of asking questions, and including your caregiver as part of the conversation.

Dr. Hetty Carraway is Director of the Leukemia Program at Cleveland Clinic. Dr. Carraway cares for patients with acute leukemia and bone marrow failure states. Learn more about Dr. Carraway, here.

See More From INSIST! AML

Related Resources:


 Treatment Approaches in AML: Key Testing for Personalized Care

 New AML Therapies vs. Traditional Chemotherapy: What’s the Difference?

 Understanding Risk in AML: How Molecular Testing Affects Treatment Options

Transcript:

Katherine:

What advice do you have for patients when it comes to asking for appropriate testing and speaking up in their own care?

Dr. Carraway:            

This is so important. I think patients are leery to stir the pot or be difficult. I think coming from a place of inquiry, teach me about this, that, or the other thing, help me understand this, that, or the other thing – I would like you to show me why this decision or talk with me about why this decision versus another decision might be better for me compared to somebody else.

I can’t underscore the importance of advocating for yourself and asking questions about why am I getting this drug? What are the side effects to this drug? What is my prognosis? What is different about my case versus somebody else’s situation? How do I best prepare myself in getting ready for the therapy that I’m about to go through?

Those are all important questions that patients should ask. They should certainly have people, if possible in their family be advocates for them. I welcome that, and I think that that’s a really important part of going through this type of therapy for any patient. Your physician should welcome having your involvement in that. Don’t be shy about that. It’s your health, and any investment in that the most important people in that is inclusive of you and your caregivers. They should be a welcome part of the team.

Changing the Caregivers’ Refrain

I’ve spent the past two years since my Mom’s death wondering if I could have — no, I’ll be totally honest with you — wondering if I should have done more. If only I had looked into clinical trials while she still met the inclusion criteria. If only I had sought out and demanded that she see an expert sooner. If only I had been more patient, more present, more supportive. All of this because no matter how much you give of yourself as a caregiver, you’re always left feeling like you could, no, should have done more. Guilt, fear, exhaustion and stress are the refrain we caregivers hear, on continuous repeat, in our heads.

But what if we could change this? What if we, collectively as a community, could provide the support and encouragement that caregivers need? What if we worked together to change the refrain they (we) hear to something more positive?

My Mom, Shirley, was diagnosed with Inclusion Body Myositis (IBM) in 2008.  IBM is a relatively rare inflammatory muscle disease characterized by progressive muscle weakness and wasting. Her diagnosis came after years of our family telling her that the weakness she felt and her frequent falls could easily be solved if she just exercised more often.

Towards the end of her life she was unable to leave the house or even get out of bed. Her muscles had wasted to a point that she couldn’t move her arms or legs. She couldn’t even swallow. My Dad and I took care of her at home until she was admitted to hospice and died shortly thereafter.

The Family Caregiver Alliance reports that 34.2 million Americans have or are providing (unpaid/family) care to an adult aged 50 years or older[1].  48 percent of caregivers are between the ages of 18-49. This means that most caregivers are starting or already have families of their own to care for, careers to build and tend to, and other commitments beyond their role of caregiver.

Being a caregiver was hard. Literally, the hardest thing I’ve ever done. But looking back on it, I realize just how lucky I was. I had a committed co-caregiver in my Dad. I have an incredibly supportive husband who, without hesitation, agreed to move closer to my parents.  I also have a great support system of friends and colleagues. Not all caregivers are as lucky. Caregivers report feelings of isolation, chronic stress, depression and symptoms of declining health. Many caregivers have no one to turn to for support and encouragement. They have no one to “cover” for them when they need a break.  No one to talk to when they feel that they just can’t continue on another day.

This is why my organization, Patient Empowerment Network, is trying to grow the Empowered Patient Facebook Group. We want it to be a safe, supportive place where patients and caregivers can find the help they need, even if it’s just to swap stories or learn a new “caregiver hack” to make life a little easier. We want to work with you and for you to build a community of empowered patients and caregivers.

A dear friend once told me that we do the best we can in the moment we’re in. Maybe that’s a cop out but, having been a caregiver, I believe it’s true. The trick is reminding ourselves and each other that it’s true. I encourage you to use this community to help share that reminder and, hopefully, change the caregivers’ refrain.


[1] [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]

A Person Centered Approach To The Care Of Chronic Illness

The World Health Organization has called chronic conditions ‘the health care challenge of this century’. According to the latest figures released by the Centers For Disease Control and Prevention about half of all adults have one or more chronic health conditions; and one of four adults have two or more chronic health conditions. Long-term diseases, such as heart disease, stroke, cancer, type 2 diabetes, and obesity are the leading cause of mortality worldwide and are estimated to be the leading cause of disability by 2020. A landmark paper, published on 9 July 2016 in Nature Reviews, reports the prevalence of global diabetes has been seriously underestimated by at least 25 per cent.

These figures are alarming, but what is equally alarming is that despite the prevalence and seriousness of the situation, our medical system is not structured to adequately respond to chronic illness. Our current health systems are designed to prevent, diagnose and treat acute medical conditions. The problem is not that people with chronic diseases do not receive care; rather, the acute care model ignores the fundamentally different approach that is needed to care for people with chronic conditions. Furthermore, this model leaves little room for the psycho-social dimensions of chronic illness; it addresses parts of diseases or small sub-parts of the body, but it does not address the person in a holistic way.

How can we begin to address this disconnect in a healthcare system which cares for pieces of people, rather than the whole person?

I believe the answer lies in adopting a person-centered approach to the care of the patient (while you may find the term patient-centered care is more widely-used, I prefer to use the more all-encompassing person-centered care as it focusses on the whole person). Describing the person-centered care approach, Dr Ronald Epstein, MD and Dr Richard Street, PhD characterize it as one in which “patients are known as persons in the context of their own social worlds, listened to, informed, respected, and involved in their care.”

Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions, was recognized as a dimension of high-quality health care in the 2001 Institute of Medicine (IOM) report Crossing The Quality Chasm; An New Health System for The 21st Century as one of six quality aims for improving care. The IOM report drew on research conducted in 1993 by the Picker Institute in conjunction with the Harvard School of Medicine 1 which identified eight dimensions of patient-centered care.

These eight principles provide a roadmap for a person-centered approach to the care of chronic illness.

1. Respect for patients values, preferences and expressed needs

A fundamental tenet of person-centered care concerns putting people and their families at the center of clinical decisions. Each patient brings his/her own unique preferences, concerns and expectations to a clinical encounter and these values should be integrated into decisions if they are to serve the patient. Patients have a right to be part of the decision making process. This is best achieved through the model of shared decision making, the conversation that happens between a patient and their health professional to reach a healthcare choice together. At the very heart of shared decision making is the recognition that healthcare providers and patients bring different but equally important forms of expertise to the decision-making process. Patients and their families will bring their experience of living with a disease, their social circumstances and preferences. This is particularly relevant in chronic health conditions where the patient may have many years of experience of their symptoms and responses to treatments.

2. Co-ordination and integration of care

Research shows that patients highly value coordination of their care, seeing it as an important component of overall quality, especially when they have chronic health problems and complex needs. The reality however, is a patient with a chronic condition often receives care from multiple healthcare providers who may work independently from each other. This fragmented system affects the follow-through and co-ordination of care patients receive.

3. Addressing patients’ information, communication and education needs

Patients differ in their views about how much information they want. In some cases, patients want a lot of information and in other cases patients may delegate decision making entirely to healthcare professionals. The goal of patient-centeredness, according to the IOM report, is to customize information to the specific needs of each individual; that is, to modify the care to respond to the person, not the person to the care. Information needs to be much more easily available and understandable and a concerted effort made to strengthen health literacy for all patients.

4. Physical comfort

Attention to physical comfort implies timely, tailored and expert management of symptoms such as pain or other discomfort. Person-centered pain management takes into account not just the physical aspect of pain, but also the psychological, social, and spiritual aspects of health and disease.

5. Emotional support and alleviation of fear and anxiety

Fear and anxiety associated with illness can be as debilitating as the physical effects. As defined by the Institute of Medicine, patient-centered care attends to the anxiety that accompanies all injury and illness, whether due to uncertainty, fear of pain, disability or disfigurement, loneliness, financial impact, or the effect of illness on one’s family. Chronic illness affects every aspect of our lives and patients face a range of stressors from medical management of our illness, to dealing with changes in family life, work life or student life. The psychological effects of chronic illness can be profound. Individuals with chronic illness are more likely to be depressed, especially those who experience greater levels of pain and disability. In a paper published in the Western Journal of Medicine authors Jane Turner and Brian Kelly examined the emotional dimensions of chronic disease. They concluded that:

  • The emotional dimensions of chronic conditions are often overlooked when medical care is considered
  • Doctors may be well equipped for the biomedical aspects of care but not for the challenges of understanding the psychological, social, and cultural dimensions of illness and health
  • Clinicians can play an important part in helping their patients to maintain healthy coping skills

6. Involvement of family and friends

The sixth dimension of patient-centered care recognizes the key role of families and friends in supporting and caring for a chronically ill person. It focuses on accommodating family and friends on whom patients may rely, involving them as appropriate in decision making, supporting them as caregivers, making them welcome and comfortable in the care delivery setting, and recognizing their needs and contributions.

7. Continuity and transition

Every episode of care involves various individuals and oftentimes multiple transfers between different health care settings. Poor communication during transitions leads to increased rates in hospital readmissions, medical errors, and poor health outcomes. Most patients and family caregivers are not encouraged to play an active role when a transition in their care occurs, even though they are often the only constants in the transition.

8. Access to care

Patients need to know they can access care when it is needed. In interviews conducted by Picker, patients indicated the following areas were of importance:

  • Access to the location of hospitals, clinics and physician offices
  • Availability of transportation
  • Ease of scheduling appointments
  • Availability of appointments when needed
  • Accessibility to specialists or specialty services when a referral is made
  • Clear instructions provided on when and how to get referrals.

Ideally patients should have access to the right service at the right place at the right time. This may take place outside the traditional healthcare setting, as Meredith Dezutter, who applies human-centered design to improve the lives of patients, caregivers and providers through her work at Mayo Clinic’s Center for Innovation, points to: “It may mean making medical knowledge more accessible and supporting local care decisions, offering online support or video appointments or even connecting the patient with resources in his or her community.”

For too long, patients have been grouped into a single homogenized category, and treatment approaches to care generalized. This ignores the reality of chronic illness which presents in different ways. Treatment of chronic conditions requires an individualized, multifaceted approach. Care is enhanced when there is sensitivity for the context of the illness experience. Person-centered care is a method of care that treats the patient as a person within the context of their lives, family and community support, mental and emotional state, beliefs and preferences. It is based on good communication and a partnership approach between clinician and patient with the aim of improving patient self-management, care outcomes and satisfaction. PhD student and health researcher, Doro Bechinger-English, who was diagnosed with breast cancer in 2010, believes that person-centered care facilitates a closer connection between a patient and healthcare provider. “The healthcare professional shows their presence by connecting with me as a patient and a person”, she says. “Person-centered care also means being open to my values, anxieties, concerns and preferences however small or alien they seem to be.”

Redesigning our healthcare systems to adopt a patient-centered perspective is not without its challenges in an acute care system that is primarily reactive, but ultimately doesn’t every patient deserve to be treated in a system in which he or she feels known, respected, involved, engaged, and knowledgeable about their own care?

1 Gerteis M, Edgman-Levitan S, Daley J, Delbanco T. Through the patient’s eyes: understanding and promoting patient-centered care. San Fransisco: Jossey-Bass; 1993