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Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

How can you best care for a loved one who is undergoing bispecific antibody therapy? Dr. Craig Cole, a myeloma specialist, provides key advice for care partners emphasizing the necessity of taking notes and for having a solid plan if issues arise, and he shares key questions to ask the doctor about bispecific antibody therapy.

Dr. Craig Cole is a multiple myeloma specialist at Karmanos Cancer Institute in Detroit, MI and in East Lansing, MI. Dr. Cole also serves as an associate professor at Wayne State University and at Michigan State University. Learn more about Dr. Craig Cole

See More from The Care Partner Toolkit: Bispecific Antibodies

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What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

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Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Transcript:

Katherine Banwell:

Dr. Cole, what sort of questions should care partners be asking the care team when a loved one is undergoing bispecific antibody therapy? 

Dr. Craig Cole:

I think one of the big questions and – oh first I would say write everything down. Write everything down and have your care provider write things down or record them. Because I think it’s important to have that – have something written on hand. In our house we put everything on the – instructions on refrigerator with a magnet to make sure everyone sees it. But the one – one big question to ask is, “What are the – with this specific antibody that the patient’s receiving, what is the risk of the of the cytokine release syndrome?  

What’s the risk of the neurotoxicity that we talked about in the timeline?” Because those can be very different. “When should I worry? And how long should I be watching for these side effects?” The other thing is to have a solid plan of what to do if there are – if there’s any side effects. And so frequently that doctors or providers will write a prescription for steroids or Tylenol to take if any of those symptoms happen, but also to have a phone number to call a provider or to call the clinic if something were to change. Because again, these aren’t symptoms that you want to sit on where you say, “Oh, I have a fever, no big deal.” I mean it’s definitely good to call, and so, having a plan set. And I would make sure that you have that written down and then talk back, repeat back to the doctor or the provider that the plan is set.  

It’s not a forever plan. It’s just doing those first few doses of the bispecific. And also knowing sort of – I think a really good question is knowing the long-term efficacy of these. I mean these therapies are – work really, really well, but also knowing what are the chances of this working, of it not working? And I always like to have a plan B. “If this doesn’t work well, what are we going to do next?” And I think that’s a very fair question to providers. 

Katherine Banwell:

Dr. Cole, is there anything else you’d like to add about caring for someone who’s being treated with bispecifics? 

Dr. Craig Cole:

I think that the biggest thing is how incredibly exciting these medications are. I mean, there are – I went through and talked about a lot of the bispecifics for cancer, but there have been revolutionary biospecifics for macular edema, for hemophilia, the bleeding disorder. And these are revolutionary drugs in cancer. And really, it’s incredible that – how well these drugs fight cancer. And the fact that they use your own immune system, not someone else’s immune system, not some chemotherapy, but using your own immune system is incredible. And so, I always tell people to be really encouraged that the technology is this – if you’d have asked me this 10 years ago about a bispecific antibody I would say that’s impossible.  

And now we’re at the cusp of that. And the other thing is to be involved in clinical trials, that all these, a lot of – there are a lot of clinical trials and bispecifics because it is the big, exciting thing. And so, if you have the opportunity to participate in a bispecific clinical trial, I would definitely encourage that because it really is the cutting edge of medicine these days.  

Managing CLL Side Effects | Innovative Strategies and Approaches

Managing CLL Side Effects | Innovative Strategies and Approaches from Patient Empowerment Network on Vimeo.

What can chronic lymphocytic leukemia (CLL) HCPs consider for innovative ways to manage CLL side effects? Experts Dr. Jennifer Brown from Dana-Farber Cancer Institute and Dr. Callie Coombs from the University of California, Irvine discuss strategies for drug interactions, neutropenia, headaches, and other side effects.

Download Resource Guide  | Descargar guía de recursos

See More from EPEP CLL

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Transcript:

Dr. Nicole Rochester:

Along with therapies, of course, come potential side effects. Are there any strategies that you can share with our healthcare provider audience around innovative approaches or protocols that have been implemented to mitigate and manage the CLL side effects from the treatment?

Dr. Callie Coombs:

I think it comes down to your internal resources, but I would say taking care of CLL patients is clearly a team effort. And so it’s not just me, but also a team of additional practitioners that I work with. So I’d like to emphasize how important pharmacists are because I’ve definitely seen some side effects that come about because a patient is now on a medication that interacts with whatever their CLL therapy is, which drives up the levels of the drug and then brings out certain toxicities so they can help us identify these if, perhaps I missed it or didn’t ask the patient about a supplement, et cetera.

Next is nurse practitioners and oncology nurses. And so number one is it’s a team-based approach, and I think it’s certainly very important to have protocols internally. But also to just realize what the common toxicities are and how can we mitigate these.

One of the most common reasons that I’ve seen for patients stopping a drug prematurely actually is venetoclax (Venclexta). It very commonly causes neutropenia. And I’ve seen the drug given up on very early without any growth factor support, and so I think if you become educated and experienced with using drugs, you can realize there’s very clear strategies in improving patients with neutropenia, by supporting them with growth factor and getting them through whatever their defined plan course of venetoclax may be.

And then BTK inhibitors have a whole smattering of side effects as well where perhaps working with cardio oncologists can help in addition to other strategies depending on exactly what side effect the patient may encounter. So in summary, definitely a team-based effort and growing experience with the common side effects helps I think all comers with strategies to help prevent or mitigate such side effects.

Dr. Nicole Rochester:

Thank you so much, Dr. Coombs. Dr. Brown, do you have some additional best practices you’d like to share with regard to the management of treatment side effects?

Dr. Jennifer Brown:

Well, I agree completely with Dr. Coombs. I would just add that I think it helps a lot when you warn the patients ahead of time about things that may happen but that often go away or that you can manage. So, for example, headaches often happen early on when you initiate acalabrutinib (Calquence) but they go away typically very quickly. And so if patients know that, then they’re much less worried, and then you can talk to them about the strategies, because caffeine or acetaminophen (Tylenol) will often help with that. If you warn them that they may have some joint aches or pains, that can also help, since those are often transient.

With venetoclax, warning them about some nausea or diarrhea, and then we often manage that by subsequently moving the drug to the evening after they’re done with their ramp up, or initiating an antiemetic, things like this. And then oftentimes many patients who have that in the beginning, it doesn’t persist throughout the whole time that they’re on the drug. Sometimes the diarrhea may, but many times it doesn’t. So getting the patients through that early phase with the close management, which again, it helps, have your team help with that, the nurse practitioners, et cetera, and then hopefully things settle out and everyone’s happy.

Dr. Nicole Rochester:

Wonderful. I just want to emphasize two things. One that each of you said. One is this idea of a team-based approach, which is important in the treatment of all diseases, but of course very important in the treatment of the cancer. And also this idea of educating our patients so that they know ahead of time what to expect and really involving them as part of the team. So I really appreciate those, both of those points. 


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Is the COVID-19 Vaccination Safe for CLL Patients in Treatment?

Is the COVID-19 Vaccination Safe for CLL Patients in Treatment? from Patient Empowerment Network on Vimeo

Are COVID-19 vaccines safe for chronic lymphocytic leukemia (CLL) patients in treatment? Dr. Lindsey Roeker discusses COVID-19 vaccine safety, common symptoms, and the effectiveness in CLL patients.

Dr. Lyndsey Roeker is a hematologic oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Roeker here.

Download Guide

See More From INSIST! CLL


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Transcript:

Katherine:                  

We have another question from our audience. Eileen is currently in active treatment for her CLL, and she wants to know, “Is the COVID-19 vaccine safe for her?”

Dr. Roeker:                 

Great question. So, here is my take on COVID vaccines. We have great data on the safety of these vaccines, so the risk of a life-threatening allergic reaction is very, very low, less than one in a thousand. We know that it can cause some irritation at the injection site, so pain in your arm. We know that it can cause some kind of flu-like, blah symptoms for a couple of days, totally fine to take ibuprofen and kind of get yourself through that period.

But from a safety perspective, I don’t have concerns about these vaccines. There’s a lot of social media coverage on long-term implications that are either not based on data, at all, and just speculation, and people who are trying to raise alarm, or people who are really bringing up bad things that are happening to people really far out from the vaccine. And I think it’s really hard to attribute that to the vaccine. Obviously, any time there is a new technology, there’s the possibility of things happening, and we’re going to know more with time, but I think, overall, from a scientific perspective, there is no data that makes me worried about the safety of this vaccine.

The efficacy question, I think, is more of an open question, and the reason I say that is two-fold. The first is, we know that patients with CLL who get other vaccines, some get 100 percent coverage, some get zero percent coverage, and some are somewhere in between.

And it’s hard to predict who is going to fall where. So, that’s the first piece. The second piece is, we’ve looked at patients who had CLL and got COVID, and we saw if they made antibodies, which is kind of a marker of an immune response, and it’s not consistent that every patient who got COVID makes antibodies.

So, the combination of those two pieces of data makes me question exactly how well they’re going to work. So, what I’m telling my patients is, “Definitely go ahead and get it. I think it’s safe. And then pretend that you didn’t get it.” So, I know that’s hard advice to hear, but continue wearing a mask, continue social distancing, and continue to wash your hands. And then, every interaction you have is a risk-benefit discussion or decision. So, that’s different for every person, but in general, I recommend that people continue being cautious.

Once the whole population around you is vaccinated and we have less virus circulating in the community, that’s when it’s going to be substantially safer. So, definitely, I recommend that people get it, regardless of whether you are on watch and wait, getting treatment, have just finished treatment, whatever it is, but I do think there’s reason to be cautious even after getting vaccinated.

Katherine:                  

Are there symptoms or issues CLL patients should be looking out for, post-vaccine?

Dr. Roeker:                 

Not particularly, beyond what people are getting in kind of the general population. If you’re having a lot of those kind of flu-like symptoms, just talk to your provider to make sure that ibuprofen (Advil, Motrin) is safe, because if your platelets are really low, that can cause bleeding. But acetaminophen (Tylenol) is typically pretty safe and talk to your doctor about which medicines are kind of best for you to take in that situation, but no particular concerns in patients with CLL.