How Should a Patient With Multiple Myeloma Manage Talquetamab’s Toxicity?

It is not uncommon for a layperson to not be familiar with multiple myeloma. It was only after months of back pain, a seizure, several hospital visits, and a diagnosis that Alan Pliskin and Mary Kay Yamamoto, his wife and caregiver, became all too familiar with the disease. Now married for 37 years, Pliskin and Yamamoto spoke with Samantha Shenoy, NP, who works in the Hematology and Cellular Therapy programs at University of California, San Francisco (UCSF) Health, about their experience navigating Pliskin’s cancer treatment.

This conversation took place during a CancerNetwork®-hosted From All Angles program and mostly focused on how the couple adjusted to treatment with talquetamab-tgvs (Talvey). They covered everything from dealing with the diagnosis, managing their expectations, how their expectations have shifted between different lines of therapy, how they deal with the toxicity of talquetamab, and advice for other patients receiving the agent.

Diagnosis

Shenoy: Alan, when were you first diagnosed with multiple myeloma, what symptoms were you experiencing?

Pliskin: I had severe back and hip pain for months before I found out I had multiple myeloma, and I couldn’t get rid of it, no matter what I did. Finally, my wife insisted I go see my internal medicine [doctor], and he suspected multiple myeloma—he didn’t tell me that, but I found out later that that’s what he suspected. He ordered a bunch of tests, and a couple of days later, I had a seizure. Fortunately, my wife [was] home, and she called an ambulance, and I was rushed to Marin General Hospital [in Kentfield, CA]. I was intubated, and they [gave me] intravenous RVd [lenalidomide (Revlimid), bortezomib (Velcade), and dexamethasone], and then I was in the [intensive care unit; ICU]. After about 2 weeks there, they released me to a skilled nursing facility. Two days later, on Mother’s Day—May 13, 2018—I started sweating profusely. We were celebrating Mother’s Day at the facility, and I started sweating profusely and couldn’t breathe. The nurses said, “Oh, he’s fine. His oxygen saturation is 98%” and my wife said, “No, call an ambulance,” which they did. On the way to the hospital, I had a near-death experience, and when we got to the hospital, they told me that if I had been 10 minutes later, I would have died. They put me in the ICU, where they intubated me again, and the next day, they extubated me. I still was having trouble breathing, so they called in an [otolaryngologist] who stuck a camera down my nose and saw that my vocal cords had frozen and that the opening for air was only the size of a straw, so they then sent me in for a tracheotomy. While I was in the hospital, I had X-rays, an MRI, and PET scans, where they discovered that I had so many lytic lesions in some places that they couldn’t even count them. At Marin General, I had the highest level of calcium in my blood that they’d ever seen.

Shenoy: Wow, thank you for sharing that. Mary Kay, what was your initial reaction upon hearing that Alan had multiple myeloma?

Yamamoto: I’d never heard of multiple myeloma, so it was something that I had to do quite a lot of research on to even figure out exactly what was happening. My biggest concern was whether he’d survive long enough to be able to receive treatment. I did seek some information online, but I only went to reliable sites like Mayo Clinic or UCSF—sites that I thought were reliable, but there’s also information provided by multiple myeloma-specific websites. I quickly went to those, as well as finding booklets that give you information.

Expectations

Shenoy: Before Alan received talquetamab, he had 5 prior lines of therapy, and that included CAR T-cell with [idecabtagene vicleucel (Abecma)] and an autologous stem cell transplant. He’d had those 5 prior lines, and then he received talquetamab. You’ve both been through a lot. Since you’ve been through all these treatments, how have your expectations changed over time?

Pliskin: I’ve become more positive. Given how successful all the prior treatments have been, I’ve kept up to date with all the clinical trials and the new drugs and new treatments, and especially the potential [adverse] effects from those drugs.

Yamamoto: My expectations have gotten to be more positive as time goes on, and that has to do with a lot of things. It’s not as much of an unknown as it was in the very beginning. I’m not as afraid, and I feel that it’s best to be armed with knowledge, rather than stick your head in the sand. Since he’s been diagnosed, and it’s been over 7 years now, there have been a lot of advancements, as far as potential treatments, considerations, and choices that doctors have in selecting a treatment plan. I have a more positive attitude now than I did in the very beginning.

Shenoy: When you were considering your most recent treatment with talquetamab that you’re currently on, what factors were most important when you were considering treatment with talquetamab? For example, some of my patients tell me that it’s important that they have a good quality of life so that they don’t have to come into the infusion center all the time. Or, some patients say, “I’d like something that’s tolerable so I can live my life and feel good and do the things that I love to do.”

Pliskin: Both of those that you just mentioned were very important, and I consider the quality of life probably one of the most important things, as well as holding the multiple myeloma in check. I didn’t have too many options at this point. It was either talquetamab or clinical trials. [My doctor] felt that talquetamab had good results, with fewer [adverse] effects than the other bispecific that was approved, so we went that route. Quality of life is super important, and it’s been good with this drug.

Shenoy: What were you told about what to expect when starting treatment with talquetamab?

Pliskin: They gave us a list of documents that explained all the [adverse] effects, along with how to mitigate those, and even what products to consider. That was given to us and prepared by you at UCSF. I got this packet from the manufacturer. It has everything you need to know about talquetamab. Between those 2 packets of information, it made it way more viable to deal with all this.

Managing Talquetamab

Shenoy: I started seeing patients receiving talquetamab about 5 years ago on clinical trials. When I first started seeing the patients, and they started telling me about the taste changes—the dysgeusia, the dry mouth, the skin changes, and the nail changes—I started doing a lot of my own research. I consulted dermatologists and dietitians at UCSF, other colleagues at other institutions, just to ask them about how they were mitigating some of these adverse effects. I talked to my patients to see what was working and what wasn’t working. I put together this handout that is now 3 or 4 pages long, and it’s all the information together that I learned over the years. I’ve put together a comprehensive list of some of the different suggestions for ways to prepare for receiving talquetamab.

It’s important to have those tools so that, as a patient, you feel empowered to be able to manage some of the adverse effects that you may experience. For providers, just having something like this handout makes it much easier because it helps patients prepare. Alan, what strategies were you given to help prevent or mitigate some of the more common adverse effects, such as dysgeusia or nail changes?

Pliskin: For the nail changes, they talked about doing a nail hardener, and I found that helpful. For the skin peeling, there were multiple skin products on the list. For the dry mouth, I started using a tough one to pronounce, XyliMelts. That’s about it for now.

Yamamoto: We got gloves for him to wear at night, and for his skin, we apply the skin product and then put the gloves on. We also got some socks for him to wear at night for the skin on his feet. There are a lot of things that you can do to ease the adverse effects; you can’t prevent them.

Shenoy: How do you manage the potential weight loss that might occur during treatment with talquetamab?

Pliskin: I’ve gained weight in the last couple of months, like 15 pounds. Weight loss hasn’t been an issue for me. We eat healthy.

Shenoy: I have had patients lose weight, and, in my opinion, not every single patient receiving talquetamab needs to be referred to a dietitian. If you, as a patient, have good tips, and then as a provider, if I’m providing good tips to manage weight loss, it’s not too much of an issue for most patients. Some things to think about are things like Ensure® or other shakes that you get a good bang for your buck, so high-calorie. If you’re going to eat soup or salad, add something like avocado or healthy oils to get more bang for your buck.

The most important thing that I tell my patients is that this is not permanent; the weight [loss], the taste change, and the dry mouth will get better over time, so just hang in there. And I think that you know, as providers, for me, it’s also important to educate my patients about that, because in the first few weeks, for several weeks, it can be a little challenging. It’s important to remember that these adverse effects will get better and they’ll improve over time.

Pliskin: One of the things I’ve had a lot of, of the adverse effects that we talk about, is that my hands peeled and the bottom of my feet peeled. I lost all my fingernails and a couple of toenails, but neither of these involved any pain. It was amazing. The loss of taste lasted for about 2 months. Dry mouth lasted for about 6 months, and I get occasional fevers after the shots. I’m told this is a rare adverse effect, but I’m lucky enough to have it.

Yamamoto: Once the adverse effects start kicking in, they come pretty much all at once, but remember that it’s only a shot every 2 weeks. Then, eventually, you get to once a month, and the initial adverse effects and symptoms are gone within the first few months. It’s a matter of making it through that initial wave of adverse effects. Once that’s over, it’s smooth sailing from there. It’s not like those adverse effects are something that you continue to experience. Once you’ve gone through the peeling of the skin, the loss of the nails, and the dry mouth, et cetera, then everything just moves back to normal. You have to remember that you just have to make it through that period, and when you come out on the other side, things are going to be a whole lot better.

Pliskin: The quality of life after the adverse effects is excellent. You feel like a normal person, whatever that is.

Advice

Shenoy: What advice would you give to a patient starting treatment with talquetamab?

Pliskin: Keeping a positive attitude is crucial. Your cells know when you have a negative or a positive attitude; they work better when you have a positive attitude. Things get easier and better over time. You just have to get through it and know that it will be better.

Yamamoto: The best thing to do is to be prepared and ask questions. Make sure that you pay attention to the patient and notice any changes, but the best thing to do is to be knowledgeable. It’s a lot easier when you know what to expect, rather than thinking suddenly, “Oh my God, my skin’s peeling off in sheets!” If you know that’s going to happen and you’re prepared, then it makes it easier to go through that process.