Denise Gerberich, Caregiver

One last question for you. This is a one-time treatment and you’re done. I know it’s early in this course, but I am very optimistic that you’re cured and you can now move on and face other challenges with life. But what are your thoughts about that? Is it too soon to consider that, or are you optimistic?

 We’re cautiously optimistic, I would say. We’ve been down this path where we get such great news and we’re so excited, we call everybody, and then a few months or a year later, it’s back. We are cautiously optimistic. We know that there are so many things out there that are coming down the pike. If diffuse large B-cell lymphoma does happen to come back, we’re not going to give up hope.

I would say the same thing. We often use the term cautiously hopeful. I think we’re still processing and working through; we want to grab onto that assurance that he is cured, and we are finished with that process. It still is a process to work through, I think, because having had the relapse three times, it is a process. But we’re so grateful.

And we have great hope and encouragement now that this one is going to stick and that this is the answer for us.

 Well, I sure appreciate your time, and I appreciate your trust in us in giving up a minimum of four weeks of your life. I know it was much longer than that in the grand scheme of things. And I appreciate you sharing your story for other patients to potentially learn from your experience.

 We are so grateful, and thank you so much for your part in giving him the gift of life, truly. Thank you.

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A Journey Through DLBCL: Cautiously Hopeful

 Brian was diagnosed and treated near his hometown, and I was contacted after he had failed what we consider standard therapy. He had failed the bendamustine rituximab and R-CHOP [rituximab, cyclophosphamide, doxorubicin, vincristine, prednisone] and even stem cell transplant. At that point, the next step in the management of his care was either consideration of a clinical trial or CAR [chimeric antigen receptor]-T cell therapy.

There are a number of other agents that have recently been FDA [Food and Drug Administration] approved for the management of large cell lymphoma. But at the time of Brian’s relapse, these were not readily available.

I was contacted by his local oncologist who specifically was interested in consideration of CAR-T cell therapy for Brian. CAR-T cell therapy is something that is administered at a referral or tertiary center, and most of the centers that are administering CAR-T right now are the same centers that administer stem cell transplants, so most of them are FACT [Foundation for the Accreditation of Cellular Therapy] accredited.

There are two FDA-approved products; they differ in terms of their construct, so how they’re stimulated once they engage their target. There’s a third that’s anticipated to be FDA approved, maybe as soon as this month. That one probably has the most favorable safety profile. There are some discussions about whether that construct could move out of the transplant centers and potentially even into community centers, including one where Brian was treated.

But as of right now, most of our patients who are considered for CAR-T, there is a working relationship between the primary oncologist and the referral or tertiary center, such as myself. We generally will identify patients as to whether they’re candidates for CAR-T, request insurance approval, and get them through the collection, manufacturing, cell infusion in the first 30 days.

Once they hit that 30-day mark, unless there is ongoing toxicity, my general practice is to refer them the patients back to their local oncologist, mostly for the convenience of the patient, and also to facilitate a relationship with those primary oncologists who are on the front line seeing all cancer types, and are important to foster that relationship since they’re the ones who are potentially identifying patients who might be referred to us.

Brian is now back under the care of his local or primary oncologist, though we stay in close communication, and he and his local oncologist both know that if there is ever any sign of either lymphoma or toxicity, I’ll be the first phone call. Brian, do you think that’s a fair summary?

 It is. It really is. I’m back with our primary oncologist, and he is doing a great job of keeping track of blood work and laboratory tests and watching me very closely, and he is very encouraging.

Managing DLBCL: A Team Effort

 Denise, do you have any advice for caregivers of someone who is about to head down the path of CAR-T [chimeric antigen receptor-T cell therapy] or considering it?

 I would say take one day at a time. It’s very easy to jump ahead, especially in the beginning, and you start with all the what ifs. It’s scary, we have three sons, and the youngest was still in high school and the others were in college. You have a lot of fears, fear of the unknown. And then sometimes the fear of the known.

I would say take it a day at a time. Have that support group to help you through and to help encourage you. Also, we were very reliant on our faith to get us through, and I think it’s very important to have the family and friend support to help you through the challenging times and the whole journey.

Hang in there and take it a day at a time. Sometimes maybe a few hours at a time. Don’t be too hard on yourself. Realize that your feelings of being overwhelmed and scared and anxious are all normal feelings. But you can do it, and just do the best you can to take care of yourself and stay positive. Stay on the mission to get healthy and to go through the process of seeking and obtaining remission.

 Brian, you brought up also some good points about staying active and maintaining your physical strength. Any other insights you can share for other patients who are headed down this path or at least considering it?

 Yes, I probably could write a book. But the big thing is you’ve got to be your own advocate with this process. It’s so easy to fall through the cracks. We both tend to be laid back and wait for things to happen, but Denise is constantly calling, saying, “We’ve got to make this appointment, we’ve got to get this ball rolling, we need answers.” Don’t hesitate to be your own advocate. That’s the big one.

It’s true, sometimes it was just taking it a minute at a time. You felt so bad that you thought, “Oh, boy. I’m not sure I can get through this.” Just take it a step, a minute, a day at a time. There’s a lot of hope out there, there are a lot of new treatments. It’s mind-boggling, really, what’s out there. Don’t give up, keep going, and if you get a diagnosis that sounds pretty bleak, find those doctors who know what’s coming, what options you have, and don’t lose hope.

 I can say that both of you are very kind human beings, so it’s not that you’re laid back, you’re just very kind and very easy to work with.

CAR-T for Relapsed DLBCL: Advice for Patients & Caregivers

We generally follow patients a couple times a week, sometimes once a week, depending on laboratory test results or symptoms up until day 30, and that’s an average. Some patients will be seen on day 28, some patients on day 35. But right around day 30, that’s when we have our first response assessment. We also want to see patients to make sure that the acute toxicity has fully resolved or is quite close to resolving, and we don’t have any late problems arising. What was that visit like?

 We did a PET [positron emission tomography] scan, and it was dramatic. Looking at the PET scan was amazing to see how things prior to the CAR-T [chimeric antigen receptor-T cell therapy] really lit up and then just a few weeks later, it was a dramatic change. We were astounded. We didn’t have any idea it would be that dramatic.

 You’re right, you had a complete response on that day 30 PET, which is what we’re all hoping for and super excited to see. And then we let you go home at that point. And what has it been like since you were discharged from our care?

 Great, really great. Again, I feel like I’m almost back to normal as far as energy and strength. My job entails a lot of energy spent during the day. I’m back to normal as far as work goes, and no side effects that I can feel or notice.

 Moving forward, what we counsel patients about is the late toxicity of CAR-T. Essentially we’re going to wipe out all your mature B cells, and that is true for about six to 18 months. That can vary from one person to the next. That can lead to something called hypogammaglobulinemia.

When B cells are performing normally, they make antibodies, so when we wipe out B cells for a temporary period, antibody levels plummet. I’ve had patients who are susceptible to viral infections, including having recurrent viral infections because they don’t build that antibody response.

Outside of COVID-19 [coronavirus disease 2019] times, it’s probably been most notable in my patients who have young children who are generally bringing home viruses. But I would say most patients do very well. It’s particularly nerve wracking in the setting of a viral pandemic. What has that been like for you in the era of COVID-19?

 I’m hypersensitive. I’m very careful about my environment and making sure I’m washing my hands. It’s in the forefront of my mind, really, to be careful and cautious the best that we can. Denise is a teacher, she’s with a lot of “germy” kids, and so we try to be as cautious as we can, but so far so good.

 In addition to things like COVID-19, we advise patients to stay on prophylactic antibiotics and antivirals, so prophylaxis for PJP [pneumocystis jiroveci pneumonia], pneumonia or bronchitis, and then prophylaxis against shingles reactivation. And so that we advise patients to stay on for a minimum of a year, sometimes longer depending on how long it takes for those counts to recover.

We’ve seen some late infections, including infections that happen beyond the first few months, and that can linger for several months into this.

The other thing we’re watching for, and not necessarily at this point in time but over the next few years, is the development of second cancers. That’s a challenging discussion to have. But patients with lymphoma are more susceptible to second cancers.

Fortunately, they’re most commonly basal cell or squamous cell cancers of the skin, so those are the nonmelanoma skin cancers. But we have seen patients who also have melanoma skin cancers. Any solid tumor is a possibility, and then what we worry the most about are treatment-related changes to the bone marrow, something called myelodysplastic syndrome, or even acute leukemia.

These are things that we feel particularly bad about, because we think that you’re on the path to cure, and so we’ll be mindful and watching for second cancers for the rest of your life. But I’m very optimistic that you’re going to do very well.

Denise Gerberich, Caregiver

A Journey Through DLBCL: Cautiously Hopeful

Managing DLBCL: A Team Effort

CAR-T for Relapsed DLBCL: Advice for Patients & Caregivers

Relapsed DLBCL: Assessing Response to CAR-T

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