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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. 

Thoughts on Survivorship

Wellbeing

When the hotel alarm sounded on July 31, 2023, I woke up, put both feet on the floor, brushed my teeth, laced a pair of work boots, and caught an Uber to a factory in Potrero Hill of San Francisco.  On this work trip, with my team, we operated water treatment equipment that morning and then had lunch at a taco truck. After more work and a team dinner at a Japanese restaurant, another Uber whisked me back to the hotel in time to catch the impressive sunset over the Golden Gate Bridge.

As the sun reflected off San Francisco Bay I reflected on the past 27 years.  You see, July 31 marks my cancerversary, in other words the date that the doctor finally told me, “You no longer have cancer,” and that date marked 27 years since that discussion when I was a college student in the 90’s.

A handful of my friends know the date and sent well wishes, and on that date, old memories of my experience with Hodgkin’s Disease and prior cancerversaries have their way of returning to top of mind. I remember wanting cancer out of my body so badly and the desire to live and healthy and happy life thereafter; today we call this wellbeing.

I thought about those first steps after my doctor’s good news. Walking out of his office as a newly minted survivor felt like heading out on a journey without a map.  He had prescribed a regimen of scans, bloodwork, and follow ups which would gradually lighten as time progressed.

I dutifully followed, attended, and completed these appointments and every time sweated the results of each of them.  The new normal felt a lot more uncertain than it did before cancer. To live a healthy life as a survivor means taking on the hard stuff like waiting on results, but it also provides a level of comfort knowing the course of tests monitored my body very closely. Over time, the intervals between these exams lengthened from three months to six months. Then annually. Then never again after year 10.

Like many survivors, cancer influenced my health decisions, especially diet and exercise, to live a life with wellbeing.  Healthy habits have to underpin decisions. For me this meant getting into running and swimming. I remember running about six months after finishing treatments and could not make it 50 yards.

Sticking with good habits, stacking wins, will help healing and mental wellbeing. Whether you aim for mountain peaks or marathon finish lines, or you start a daily walking habit, movement and mobility will help the body bounce back; this worked for me.  I kept getting out there day-after-day, doing those 50-yard runs which eventually stretched further. Let your body guide you; listen; just move.

Over the years, having met so many other survivors, handling cold and flu season after cancer has some challenges. I remember the Fall after my treatments concluded, I came down with the sniffles and immediately thought cancer had returned.  Taking it a step further, I twisted my ankle on a jog about four months after finishing treatments and thought that my ankle now had cancer. It didn’t.  Relearning and listening to your body take time and those reactions are something I think all survivors experience.

One health dilemma I faced early on after the end of treatment happened in college.  The social scene at my (and many) colleges involved parties and bars. I enjoyed going to these, not so much for the alcohol but for the camaraderie. At the time (the 90’s), you could smoke in bars.  After standing in the smoke- filled college bars a few times and still worried about a relapse, I decided to change my approach. Instead of tolerating the environment, I would arrange meetups with friends earlier and would leave if it got smoky. Though I may have missed out on some late-night revelry, it meant prioritizing health first. Making this and other tradeoffs like it over the years have led to a healthier overall life without the worry of deprioritizing my health.

As the sun went down over the San Francisco Bay and the memories receded for another year, the second lifetime of chances left me with a warm appreciation of life and a gratitude for a second opportunity knowing that when the alarm sounds on the next ordinary day, August 1, I have the chance to keep going.

Good health to you.

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Dr. Idoroenyi Amanam: Why Is It Important for You to Empower MPN Patients?

Dr. Idoroenyi Amanam: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) care providers empower their patients? Hematologist-oncologist Dr. Idoroenyi Amanam from City of Hope shares his perspective of his experience with a family member going through cancer. Dr. Amanam explains how that experience helped mold his approach to informing and empowering patients in their cancer journeys.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Nizar Tannir: Why Is It Important for You to Empower Patients?

Dr. Ebony Hoskins: Why Is It Important for You to Empower Patients?

Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Transcript:

Dr. Indoroenyi Amanam: 

I know from personal experience, I’ve had a family member who had cancer and had to struggle with therapy and some of the complications associated with therapy. And I felt that her doctor was really good with giving a…giving us an understanding of what was up next for us, giving us an understanding of what the disease meant for her, and really just helped us wrap our heads around what was about to happen. And I think that’s tough when you get a diagnosis and things have to happen very fast. I think we…you’re diagnosed by possibly an ER doctor or a general practitioner. Then you’re sent as a referral to an oncologist who has 30 minutes to talk to you about your diagnosis and ready. Then they scheduled possibly for you to get a port and/or you have to get imaging, or you have to go and get another biopsy, or another procedure.

And a lot of the time that you’re spending at the hospital is really by going to these different appointments, but actually not really talking to anyone about what this really means. And so from my own personal experience of going through it with a family member, I think it’s really important to try to help patients understand what’s really going to happen, what this means for them long term, what the treatments…what the complications are associated with that.

And I know that most of our…most of my colleagues, they do that. And I know that we all want to ensure that our patients have great outcomes, but I do think that having that personal experience does give me some type of connection to patients in possibly in a different way. And so I just want to empower them with understanding that this is something that wasn’t expected. There are a lot of things that have to happen. Here’s what we need to do, and I’m there for you, and I’m there to support you in any way possible that I can to help you get through this.

Empowering Patients: The Advantages of Remote Symptom Monitoring – Let’s AceCancer

As we continue to see advancements in telemedicine and virtual care, remote patient symptom monitoring is becoming increasingly crucial.  It is important to highlight the significance of remote patient symptom monitoring and how it can benefit both you and your healthcare team.  

Remote patient symptom monitoring involves using technology such as digital health apps to monitor your health status, symptoms, and medical history remotely. While it’s commonly used for patients with chronic conditions, it’s also been shown to be beneficial for cancer patients receiving active care.  

Remote patient monitoring is important because it allows your medical team to detect and respond to changes in your health status in real-time, which can lead to early intervention and the prevention of complications. This can ultimately lead to improved health outcomes, reduce hospitalizations, lower healthcare costs, and improved quality of life.  

In addition, remote patient monitoring allows you to be more involved in your own care and also enhances your knowledge to make informed decisions about your health. For example, Celeste Jones, a 68-year-old woman, was recently diagnosed with breast cancer. She just finished her first round of chemotherapy and is experiencing side effects such as nausea, fatigue, and difficulty sleeping. Her nurse navigator at her community oncology center recommended a digital health app to help her manage her symptoms. She now uses her app to track her symptoms each day. She can quickly record how she is feeling, capture the severity of her symptoms, and make brief notes about any triggers that may have caused her symptoms.   

Lastly, remote patient monitoring can help you reduce your healthcare costs by preventing costly medical interventions and reducing hospitalizations and emergency room visits. Celeste can now manage her symptoms more effectively so that she doesn’t suffer in silence. She can also communicate with her medical team with better detail which can improve her overall quality of life. After using the app for more than 3 cycles of chemo she feels more empowered and in control of her cancer journey. By utilizing digital health apps, you can enhance communication with your healthcare team and take charge of your well-being. These apps facilitate interactive virtual communication between you and your care team, empowering you to improve your health outcomes.  

At Acellus, we are thrilled to collaborate with the Patient Empowerment Network’s digital sherpa®  program. Through this partnership, we can visit healthcare institutions and provide guided knowledge to older adults regarding the significance of acquiring basic internet, social media, and digital health skills. Acellus Health and Patient Empowerment Network are dedicated to empowering patients and emphasizing the power of knowledge.    

In conclusion, remote patient symptom monitoring is absolutely essential in today’s healthcare environment. With technology continuing to advance, remote monitoring will become even more relevant in healthcare delivery, allowing your healthcare providers to provide you with high-quality care no matter where you are. So, don’t wait any longer—activate it today!  

How to Access Myeloma Financial Resources

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

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

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

See More From Thrive CAR T-Cell Therapy

Related Resources:

360 Myeloma Care: How Can a Social Worker Help

360 Myeloma Care | How Can a Social Worker Help?

The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join

Is There Financial Assistance for Myeloma Patients

Is There Financial Assistance for Myeloma Patients?

Transcript:

Katherine Banwell:

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

Yu Mee Song:

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

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

Katherine Banwell:

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

Yu Mee Song:

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

 Katherine Banwell:

Right. Yeah. That makes sense. 

The Value of Myeloma Support Groups and How to Join

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

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

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

See More From Thrive CAR T-Cell Therapy

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How to Access Myeloma Financial Resources

Transcript:

Katherine Banwell:

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

Yu Mee Song:

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

Katherine Banwell:

Yeah. It’s incredibly valuable.  

Yu Mee Song:

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

Katherine Banwell:

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

Yu Mee Song:

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

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

Advice for Myeloma Patients Undergoing CAR T-Cell Therapy

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

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

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

See More From Thrive CAR T-Cell Therapy

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Transcript:

Katherine Banwell:

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

Yu Mee Song:

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

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

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

Katherine Banwell:

Yeah.  

Yu Mee Song:

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

360 Myeloma Care | How Can a Social Worker Help?

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

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

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

See More From Thrive CAR T-Cell Therapy

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Transcript:

Yu Mee Song:

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

Katherine Banwell:

Excellent.  

Yu Mee Song:

Thank you for having me.  

Katherine Banwell:

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

Yu Mee Song:

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

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

Katherine Banwell:

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

Yu Mee Song:

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

Katherine Banwell:

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

Yu Mee Song:

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

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

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

And that’s so helpful to know that.  

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

Katherine Banwell:

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

Yu Mee Song:

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

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

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

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

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

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

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

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Transcript:

Katherine Banwell:

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

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

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

Sarah Meissner:

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

Katherine:

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

Adrienne:

Thank you for having me. 

Katherine:

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

Sarah Meissner:

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

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

 Katherine:

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

Sarah Meissner:

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

Katherine:

So, how many people could be on a team?  

Sarah Meissner:

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

Katherine:

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

Sarah Meissner:

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

Katherine:

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

Adrienne:

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

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

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

Katherine:

Yeah. It must have been hard.  

Adrienne:

Yeah. It was hard. 

Katherine:

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

Adrienne:

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

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

Katherine:

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

Adrienne:

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

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

Katherine:

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

Adrienne:

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

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

Katherine:

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

Sarah Meissner:

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

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

Katherine:

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

Sarah Meissner:

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

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

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

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

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

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

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

 Katherine:

That’s an odd image. 

Sarah Meissner:

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

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

Katherine:

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

Sarah Meissner:

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

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

Katherine:

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

Adrienne:

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

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

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

Katherine:

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

Adrienne:

Correct. 

Katherine:

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

Sarah Meissner:

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

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

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

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

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

Katherine:

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

Sarah Meissner:

Yeah, definitely. 

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

Katherine:

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

Adrienne:

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

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

Katherine:

Right. 

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

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

Katherine:

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

Sarah Meissner:

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

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

Katherine:

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

Adrienne:

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

Katherine:

It’s a lot of responsibility for you. 

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

Adrienne:

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

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

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

Katherine:

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

Adrienne:

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

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

Katherine:

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

Sarah Meissner:

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

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

Katherine:

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

Sarah Meissner:

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

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

Katherine:

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

Adrienne:

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

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

Katherine:

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

Sarah Meissner:

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

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

Katherine:

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

Adrienne:

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

Katherine:

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

Adrienne:

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

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

Katherine:

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

Sarah Meissner:

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

Katherine:

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

Sarah Meissner:

Thank you.  

Adrienne:

Thank you. 

Katherine:

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

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Myeloma and NHL Patients Discuss Their Go-to Sources of Laughter

Myeloma and NHL Patients Discuss Their Go-to Sources of Laughter from Patient Empowerment Network on Vimeo.

Lisa, Thomas, Donna and Diana all share what keeps them laughing. From TED Talks to TikTok videos—Thomas shares it’s always best to start your day with something positive.  

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Transcript:

Lisa Hatfield:

I wrote down two sources of laughter right now, and just so people are watching this, something that they can look up, or a positivity or something that there’s just like having a low day go onto this activity guide or watch this thing, two sources of positivity or laughter or humor from any one of you want to start with, Diana? 

Diana:

Number one would be my book, no I’m kidding. You know what I have found? Every morning I have since retired. And every morning since I’ve retired, I get on Facebook and TikTok and I look at Penny the talking cat. I love Penny the talking cat videos, it’s just stupid, stupid humor. I also adopted a new kitten and he brings me joy, such joy on the silly stuff that he does, so I think whatever you can find that brings you humor, do it every day. And start your day with it.

Lisa Hatfield:

That’s a good tip. Start your day with it. Yeah, getting off on the right foot. Donna, how about you? 

Donna:

Well, I mentioned it a little bit earlier, one of the comedians that I really love, because he always talks about family issues, Italian Jewish issues all the time, back and forth, back and forth. That’s Sebastian Maniscalo. 

He is so funny, and I watched those videos either on Facebook on TikTok, on YouTube, whatever, and he relates to everything that you could think of, whether it’s growing up in situations that are awkward, whether it’s awkwardness at holidays, whether it’s the awkwardness to going out with his children or his wife or whatever, so it’s all family-related. And it just makes me laugh. It puts me in a different place and I laugh and I find it very relaxing, and I just say, wow, I can relate to that or whatever. But he makes me laugh all the time cause it’s his voice that says mannerism, and the subject matter is always great, and it’s never raunchy actually. Never. 

Lisa Hatfield:

That’s nice. Yeah.

Diana:

This January, I broke my foot. I had a stress factor, my foot, so I had to sit on the couch for six weeks, I couldn’t go to the gym, I couldn’t walk 12000 steps a day, which is what I typically do. I watched all 178 episodes of Seinfeld over those six weeks and it’s what kept me going.

Lisa Hatfield:

Awesome. So, Thomas, what are two sources or Donna were you done? Thomas, a couple of sources of inspiration or humor for you? 

Thomas:

We all have this in common is we all go to TikTok in the morning and just look at something to get our day going. So that’s one of the things that I do. And then the other thing is, I give calls, sometimes I call them or via text to some… My guys that I ride my bike with, one of the guys are so animated with every story that he tells, he makes you laugh even when you don’t even want to laugh because of how he animates the story. So, between him and what I see on TikTok and social media, that really brightens my day up in the morning before I start it. And it has to be something positive, anything negative, I try to scroll past that even so fast that it doesn’t even get into my brain. 

Lisa Hatfield:

That’s awesome. Yeah, avoid the negative. I like to look up every once in a while, when I’m feeling just… I need a good laugh. I look up YouTube videos of babies laughing, for some reason, you see it, there was a video with Dad Laughing, the baby with her sneezing and the baby would have this huge belly laugh that just got me laughing pretty good, and I also like… There’s a podcast just for positivity that I have listened to, the guy’s name is Shawn. I think it’s pronounced Achor, it’s like anchor without the n, but he talked about… He studied happiness, I think he taught at Harvard for a little while, and he does these experiments and I think would be really funny to watch, but when he goes in and talks to groups he tells everybody to pair up two different… Everybody’s in a pair, and then he’s okay, somebody’s number one, and the pair, somebody’s number two, it doesn’t matter who’s which number right now, and then he proceeds to tell people for the next seven seconds, I want you to control your behavior, so I’m going to tell you to do something for seven seconds, you can’t partner with somebody you’re married, you can’t be paired up with somebody that you know really well, so what he does is he says okay, all the number ones… 

I want you to go neutral, go blank. No emotion, nothing. Number two, for seven seconds, I want you to stare deeply and warmly into the eyes of number one, now mind you, these might be complete strangers and both of them are supposed to not… They’re supposed to totally control their behavior, so for seven seconds they do that to stop, and then he reverses it, so number two is now number one, and vice versa is supposed to show no emotion and not smile, not laugh, and he said, Success is by controlling your behavior failure is you did something, usually laughing or smiling when somebody’s gazing deeply in your eyes and you’re supposed to be totally neutral. He does these experiments… He said 85% to 90% of people fail because they cannot control their emotions, they can’t help, but they’ll laugh or they’ll giggle or whatever, and he said it’s universal. It really predicts nothing, but it’s universal, it happens every time, but he talks a lot about the mirror neurons that we have, you know, if somebody’s yawning, we feel like we have to, Jon, but smiling and laughter is sort of contagious because of these mirror neurons. 

So, if one person starts laughing at the partner, the other one does too, and it’s just kind of one of his funny experiments, so that would be… I guess my take away is this podcast by… Or a couple of podcasts by Sean Achor. They’re funny to listen to. He describes him, he’s just super funny to hear talking anyway, he had some TED talks out there. So those are my two go-tos. 

How Have You Maintained Positivity in Uncomfortable Situations?

How Have You Maintained Positivity in Uncomfortable Situations? from Patient Empowerment Network on Vimeo.

Despite feeling down or just not feeling well there are time when you have to show up for others whether it be family or friends. Lisa and Thomas, living with Myeloma along with Donna and Diana living with NHL share times when they’ve had to show up for others even when not feeling like their best selves.   

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Transcript:

Lisa Hatfield:

Have any of you ever felt the need to be positive even when you might feel like crap, just so others don’t feel awkward, just so other people don’t feel uncomfortable? So, we’ll go around we’ll start from… I’ll start from my left, Donna, Diana and then Thomas if you have any of those… Those instances, what do you do about that, Donna? 

Donna:

My situation was, I literally felt like crap, I was sleeping 10, 14 hours a day. My kids came home for Thanksgiving and I’m like, let’s just order from Whole Foods or from Jewel, we’ll get the complete meal, and they were like, No Mom, I really want to cook Thanksgiving will help you, we’ll do everything, and you can just supervise and… So, our meal was set up, we sat down at the table, my children made the stuffing… My son made the mashed potatoes and the stuffing, and my daughter made the gravy, we cooked the turkey, everything was cold… I mean literally cold, but we all sat there with a few friends, and I just wanted to just go in the bedroom and go to sleep. But I put up a good front. I was so happy we did it, they were so proud of themselves to make the meal for me that it brings tears to my eyes now, because they just wanted to have something normal, and for me, it was very difficult, but it was wonderful just to sit there and I kept putting my hand behind my back or maybe sit up straight because I was slumping and I was ready to fall asleep, but I’m telling you that situation for me, I still remember, and we talk about it every Thanksgiving, about what a wonderful meal it was even though it was the coldest Turkey and the coldest mashed potatoes I ever ate. The gravy was already curdling because it was so cold. It was just unbelievable. 

So, it’s a great experience. And it meant a lot to all of us really. 

Lisa Hatfield:

Well, now, it kind of did turn into a positive because you can talk about it with a smile and kind of laugh about it. Yeah. Sometimes we forge ahead. It turns into that sometimes it doesn’t, but thankfully, the cold mashed potatoes turned into a positive or something to laugh about later. Exactly. Yeah. Diana, do you have any thoughts on that? 

Diana:

Honestly, I don’t… I had the opposite situation that Donna did. I felt so bad leading up to my diagnosis, not knowing what was wrong with me, that once I started my treatment, I felt better on chemo. Who does that? I don’t know, but… So, when I took advantage of short-term disability, my immune system was compromised. This was well before covid, so I was in a great place once covid came because I knew exactly what to do and I had enough sanitizer to get through it, but going through treatment, I would always just put on my positive attitude before I left the house, and it just stayed with me and I surrounded myself with positive people, including the people who are treating me. 

Lisa Hatfield:

Yeah, good to hear that. Thomas, you ever feel like I have to put on a happy face even when you don’t feel like it? 

Thomas:

I do… As I mentioned earlier, maybe off-camera, we are always being watched and being a pillar in the community. I know that when I go to the clinic or when I go out in public, I’ll run into somebody that has seen me on an interview or know I have myeloma or maybe a patient that’s going through the exact same thing, and some of those days I am at my worst, I feel bad, but they will never know because they will always see the same happy go lucky Thomas that they see on video in the clinic or on the posts that I post on my social media. Always smiling. So, it’s something that I deal with all the time, but what I do is I do have an outlet. I have you guys… Because I always feel that I can talk to somebody that has been through some of the same things I’ve been through, they get an understanding of what I’m dealing with, instead of getting the generic… I understand answer. It’s something that happens more than a lot of people like to talk about, but it happens all the time. 

Lisa Hatfield:

Would you say sometimes you do go out into the community; I just have to ask… And this is kind of personal. Do you feel like that’s sort of a burden to put on a happy face, or do you just immediately go to your outlet of connecting with others and working out to let it not feel like a burden? 

Thomas:

I won’t look at it as a burden because I know that it’s inspiration to them. You know as long as I can inspire somebody else that’s dealing with their disease, or not even a disease, I hear it all the time, I’m in the gym, and people that’s not even diagnosed with cancer or any other disease, they look at me and say, Man, I know what you’ve been through, and I see you in here smiling and laughing and talking and working out, and I’m complaining that I had to get up and come in the gym this morning. So now that I’m in the gym and I see your exercising, you’ve really changed my day, but unbeknownst them that I’m on dexamethasone, I’m wide open… I have scar tissue from some of the areas, scar tissue pain from some of the areas I’ve had radiation. But no one will ever know that.