Tag Archive for: CAR T-cell therapy recovery

Recovering From CAR T-Cell Therapy | What Can Myeloma Patients Expect?

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Recovering From CAR T-Cell Therapy | What Can Myeloma Patients Expect? from Patient Empowerment Network on Vimeo.

What can myeloma patients expect after undergoing CAR T-cell therapy? Myeloma expert and researcher Dr. Beth Faiman discusses returning to life after the CAR T process, advice for physical activity, and immune system concerns during recovery.

Dr. Beth Faiman is an Adult Nurse Practitioner in the department of Hematologic Oncology and Blood Disorders at the Cleveland Clinic. Learn more about Dr. Faiman.

See More From Thrive CAR T-Cell Therapy

Related Resources:

Advice for Myeloma Patients Undergoing CAR T-Cell Therapy

Advice for Myeloma Patients Undergoing CAR T-Cell Therapy

 What Side Effects Are Possible Following CAR T-Cell Therapy?

What Side Effects Are Possible Following CAR T-Cell Therapy?

 CAR T-Cell Therapy | Care and Monitoring Post-Treatment

CAR T-Cell Therapy | Care and Monitoring Post-Treatment

Transcript:

Katherine Banwell:

Beyond monitoring of any issues, what can someone expect related to returning to life as they knew it before the diagnosis? Is there a timeline for resuming lifestyle and activity?   

Dr. Beth Faiman:

Yeah. So, I should say I because it’s from my perspective. I am a real strong advocate. I tell people to do what you feel like you can physically do. We know that myeloma can affect the bones and put your bones at risk for breaking and so we give you medicines to protect it. So, I do put some restrictions however on physical activity in terms of, “I don’t want you to bench press 40 pounds or 20 pounds,” in most cases. And depending on what the bones look like on x-ray, I’ll even restrict it to about five to 10 pounds.  

If you think about it, that’s a bag of potatoes. So, you don’t want to put too many restrictions on for everybody. But talk to your healthcare provider about what your specific restrictions are with physical activity. Because I don’t really put any restrictions on but I encourage things like riding a bike, especially a stationary bike in your own home, so that if you fall off – hopefully, you won’t fall off a stationary bike. But if you injure yourself, then you’re able to be in a place that somebody can help you.   

But riding a bike. Also, exercising in water. Water therapy is a great weight bearing exercise and there are times of day where you can go when the YMCAs or YWCAs aren’t as busy – or community centers. So, you’re less at risk for bacterial or other illnesses. But during that first month, I try to limit their exposure to people because you’re at risk for the different viruses that are all over the place, the bacterial infections.  

So, that first month is the critical period where I try to say, “Okay, try to lay low. Let’s get you through this period. Your immune system will start getting stronger on its own after this period.” And then, that month two you start feeling like doing more. You go to the grocery store. You maybe go to eat out at a restaurant but pick a time of day that’s less busy. So, go for an early dinner. There’s no shame in eating at 5:00 p.m. if you want to go out. And then, get a table in the corner with your own wipes. And so, that’s where your immune system is getting stronger. 

And then, by month three, I think most people will feel much, much better and much, much stronger. And if you can keep moving throughout this whole time, then you’ll be stronger on the way out.  

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

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

Care partners are essential members of the CAR T-cell therapy team. Expert Dr. Shambavi Richard explains some specific ways that care partners can support their loved ones during the treatment and recovery processes.

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

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

Related Resources:

How Has CAR T-Cell Therapy Transformed Myeloma Care?

How Has CAR T-Cell Therapy Transformed Myeloma Care?

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

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

 Understanding the Basics of CAR T-Cell Therapy

Understanding the Basics of CAR T-Cell Therapy

Transcript:

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.