Jim Lesniak

 This leads to a question I have for Bryan and then Gary. What do you see as the unmet needs for our patients with advanced thyroid cancer? Where do you see the future going?

 Unmet needs often are related to education. Patients need to be educated, of course, as do their family members. Most of us make strong efforts to do that, but education also needs to be professional education. It’s not uncommon, for example, for an endocrinologist who does mostly diabetes to be caring for patients with advanced thyroid cancer and not necessarily be aware that we have these systemic therapies available, because they went to medical school and did their residency before these drugs ever came on the scene. If they’re not keeping up to speed, they may not be aware, so patients may not get access to the drug.

Education is critically important around understanding what drugs are available, but also how to determine when it’s time for a patient to receive that drug. I can’t count the number of patients I see who have a thyroid cancer that spreads into areas other than the neck, but the only test they’re getting is a neck ultrasound scan. By the time we discover that the cancer has spread to other sites, it’s late in the journey, and we’ve missed many opportunities to treat. Broad professional education is critical. The other unmet needs, of course, are new drugs that will target some of the other genetic drivers of thyroid cancer. We’ve mentioned some mutations and rearrangements, including the 

 mutations. We don’t have any targeted agents for RAS-driven tumors right now. That’s going to be one of the next big things to come along. In the meantime, thank goodness we have lenvatinib and now cabozantinib available to us to extend people’s lives and maintain a high quality of life, until we come up with that next best thing.

 I want to piggyback on that in terms of unmet needs. With some gene-specific therapies, we understand well the reason why those drugs eventually can stop working in some patients. That’s not something we understand at all for this class of multikinase inhibitors, like lenvatinib, sorafenib and cabozantinib, and we definitely need more study in that regard. Gary, from the patient’s and advocate’s points of view, what do you think are areas where there are the greatest unmet need in thyroid cancer?

 It’s definitely what Bryan said, but I’ll add to that. Things that I think of are when is it time for a patient to seek a second opinion or something more drastic than that, like a change in doctor? We’ve talked a lot from the vantage point of two wonderful, expert physicians who work in centers of excellence. But most of our patients with thyroid cancer are seen by community physicians, primarily endocrinologists, who are treating diabetes as a specialty. I’m the last person who’s going to criticize a physician, but sometimes I’ll meet people who have a disease that’s exceeded the contemporary knowledge of their doctor. Does the doctor have enough time to do research that a patient may have been exposed because they’re communicating with other patients? In many cases, unfortunately, the physician is too busy with his or her practice. That’s a time when a patient should be considering if they need to change what they’re doing, if they need to go seek out a physician who’s more knowledgeable of their journey. An unmet need, to me, is about when it’s time to seek a different level of expertise based on the circumstances I’m experiencing.

 From the point of view of someone who has a very large practice of patients with advanced thyroid cancer, not everybody can travel to Boston or Tampa or New York City or Houston for their care. All of us in this field, we’re all in this together. We want what’s best for every patient, and we’re always happy to help with the providers in the community. We have patients’ doctors reaching out to us all the time for advice. I think I speak for all of my colleagues in the field that we’re happy when patients’ physicians do that. For the patients out there, don’t be shy to ask your doctor to reach out and phone a friend.

With that, Jim and Molly, you get the last word. You’ve shared so many words of wisdom. If nothing else, I’m going to figure out a way to bottle your positive attitude and ability to cope with difficult circumstances and make my fortune selling it. I’d love to hear what other advice you have for patients, or for doctors taking care of patients like you, or for Gary who runs ThyCa [Thyroid Cancer Survivors’ Association].

 Have a good sense of humor and keep positive. We were with our surgeon on my second surgery, and I asked her if she could put a spring in my neck so I could be a bobblehead. During the third surgery, Molly said, can you put a zipper in there so you don’t have to keep cutting. We’ve been like that ever since. You have to go with the flow. If you don’t, you’re going to…

 You’re going to sit in a rocking chair and wait to die. A lot depends on your attitude, with positivity to what you’re facing, looking at it from the perspective the glass is half full instead of the glass is half empty. We’re lucky because he has the best care, between Dr Wirth, Karen and Dr Ross, we’re very comfortable, and you have to be comfortable with your physician. Back home, there aren’t a lot of choices for endocrinologists.

 Yeah. We travel three hours, one way, to get to Boston. That’s on a good day. It’s a haul, but we’re both retired, so we can do it. It’s worth it. I’m a firm believer that if I didn’t make it out there, I’d be in the ground.

 We didn’t have a lot of confidence with the care that he would have gotten back home. We were blessed that his sister was able to get us in to see Dr Stevens within two days of his diagnosis. For anybody who’s looking, if you can get to one of the Medicare medical centers, if your insurance covers it, that has a lot to do with it too. We’re lucky that we have good insurance that allows us to go where we need to go. Not everybody is that lucky.

 As I said, keep a good sense of humor, and you’ll get through it.

 Jim and Molly, we’ve been blessed to have you join us. One of the great privileges about taking care of patients with thyroid cancer is that our patients live for a while, and it’s such a pleasure and a real honor to get to know our patients and their family members and for our patients to become our good friends. It’s been special for me to do this with you two. Thank you very much. Thank you, Gary Bloom and Dr Bryan McIver. Thank you for joining us and for sharing your insightful perspectives. To our viewing audience, we hope you found this secure 

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Before closing out their discussion on differentiated thyroid cancer, patients and health care professionals alike consider unmet needs in this space.

Addressing Unmet Needs in Differentiated Thyroid Cancer

 I do want to shift gears, once again, just to touch briefly on what we do when lenvatinib no longer works. For most people, one can have good control of their thyroid cancer over a long period of time with a drug such as lenvatinib [Lenvima], but ultimately, thyroid cancer cells will begin to grow again and become resistant to a first-line therapy such as lenvatinib. Until recently, we didn’t necessarily have great data to guide us, but we do now have data that have recently been published looking at a drug called cabozantinib [Cabometyx] in patients with refractory differentiated thyroid cancer that has progressed after treatment on a multikinase inhibitor. That was the COSMIC-311 trial; that trial randomly assigned patients who had progressed on a drug such as lenvatinib to receive either cabozantinib or placebo. Again, what the COSMIC-311 trial showed was that patients who were randomized to cabozantinib did better and had responses and remained in response longer without disease progression compared with the patients who were randomized to placebo. That randomized, placebo-controlled trial led to FDA approval of cabozantinib in the second-line setting for patients with iodine refractory DTC [differentiated thyroid cancer]. Bryan, have you had the chance to prescribe cabozantinib to any of your patients?

 We have a small number of patients who have clearly progressed on lenvatinib, typically, again, after months or years, but once that progression happens, I think we need to be clear about it and not just pretend that everything’s going well. Again, I come back to that transparency and honesty that we’ve spoken about earlier. Once it does progress then, in the past, what we have done is to seek a clinical trial. I would still encourage everyone to seek out clinical trials of newer agents, but now certainly with cabozantinib being approved, we have two or three patients who’ve transitioned on to cabozantinib after progressing on the lenvatinib. It’s great to have another option. The question, of course, will be how long do they last on the cabozantinib? Of course, cabozantinib also has a side effect profile that overlaps with that of the lenvatinib but is a little bit different. The hand-foot syndrome is perhaps a little bit more common; the blood pressure is a little less of a problem. There are some subtleties there, but these drugs still are going to have side effect profiles that are going to need to be managed through the entire journey. However, if we can get three years out of lenvatinib and another two or three years out of cabozantinib, what we all are optimistic about is that in that five-year window we will have the next best thing coming down the highway toward us, and we’ll be ready for the next step on that journey.

 That is not a pie-in-the-sky idea, right? As you mentioned, 10 years ago we didn’t really have any drugs that had been FDA approved besides just the IV [intravenous] chemotherapy, which we know doesn’t work well. In the past 10 years, we have had seven drugs, I think, that are now FDA approved for iodine refractory differentiated thyroid cancer.

A brief discussion on therapeutic options one may consider after progression on lenvatinib therapy for iodine-refractory DTC.

Treating Radioiodine-Refractory DTC After Progression on Lenvatinib  

 You’re setting us up to talk about second-line therapy, which is great. First, I want to ask Jim and Molly, and then Gary, are there other resources that you found as patients and advocates that are helpful for side effect management? Jim mentioned the dietitian support, which I think can indeed be helpful, but Jim and Molly, do you have any other pearls of wisdom in terms of resources that you found helpful to manage the overall situation?

 Yeah. Invest, but stock up on it, because that gets him through a lot of it. If he’s had a bad day, especially after we did the trip to the emergency department, they said he needs to rehydrate. Some of those drinks have to be Gatorade. He has Gatorade two to three times a day, or at least twice a day.

 Also, we’re walking four to five miles a day and that’s a big plus there, too.

 In what regard? I love to hear you say that, but what does that do for you?

 It keeps your strength up. Your heart and everything else; you feel good.

 I’m away from all my doctors. They’ll do house calls because it’s warmer.

 Gary, do you have any other suggestions on resources available to patients for dealing with side effects?

 I’m a fan of talking to other people, comparing notes because somebody always has another suggestion. I’m sure there are people who don’t care for Gatorade and it’s nice to know that there are alternatives to Gatorade ... Pedialyte, all of a sudden, is making a big comeback. It’s not just for when we were raising our babies; now, it’s for adults too. Be aware that you might not enjoy the taste of something and there might be an alternative or there might be something that works nearly as well. Again, I think it’s good to talk to other patients about that, talk to your physicians, and I like the idea of trying to hook up with a nutritionist who maybe you can just have an email tethered to in case you need a change. As we age, our bodies change and we can’t digest things the same way. There are natural changes happening and then there are drug-induced changes happening. We’re a very dynamic population when we’re going through these kinds of things, so it’s important to just be flexible.

 Lori, the other resources that I would throw into the equation — I mentioned earlier the pharmacists. Typically, any large hospital system is going to have some highly professional, well-educated pharmacists who really understand the drug-drug interactions, if you’re on more than one or two medications, as well as the lenvatinib [Lenvima]. It’s important to understand that those drugs can interact with one another. They also understand the side effect profile of these drugs and can often help us with drug-based alternatives to manage the side effect profile: blood pressure control, nausea, diarrhea control. All of these things also have not just nutritional input but also drug-based input.

Certainly, the nutritionist, as you’ve mentioned already, is central because with the diarrhea comes potential for weight loss and with weight loss comes muscle loss and with muscle loss comes an inability to tolerate some of the drugs, and deconditioning is really bad for people trying to battle cancer. Physical therapy and supportive care type of strategies also help, where we have people learning how best to exercise and manage it. Psychology and psychiatry often play a role because we’re dealing with disease that cannot be cured and that has psychological impact. Beyond the peer support of having a supportive spouse or partner, which Jim and Molly have modeled perfectly today, having access to nonprofessional patient support groups and having a whole array of professionals in the background available and guiding … is tremendously important.

Shared practical advice for patients who may be undergoing treatment for iodine-refractory differentiated thyroid cancer.

Practical Advice and Resources for Patients on Systemic Therapy for DTC

 Gary, what kind of advice do you have as an advocate for patients when they’re working with their physicians to make these kinds of treatment decisions? Do you find that there’s a role for patient-to-patient guidance?

 I still believe that speaking with another patient who may be ahead of you in the journey and on the same medication can be somewhat helpful in terms of explaining in a more candid way than even a doctor may. For example, when you’re talking about diarrhea, in our society, there are certain things that are taboo to discuss. When people bring up diarrhea, there’s always that snickering that happens, but you find out when you have cancer, with people who are going through severe treatments, diarrhea is a very natural discussion to have. What does that mean? To hear Jim say that he felt like he almost needed to live in his bathroom, well, that may be different than the message the doctor gives when they’re rattling off a number of adverse effects and, “Hey, you may have diarrhea.” Well, that’s not what I heard Jim just say. Diarrhea is something that you have for a moment and then you move on, but that’s not what Jim was explaining to us. Having that occasion to have a heart-to-heart with another patient can be very revealing. I’m a big believer that the best thing we can do as patients is be prepared for every meeting that we’re going to have with our doctor. Do we have questions that we want to get clarity on?

To Molly’s point, this includes being very honest about what we’ve been experiencing. I haven’t been on a multikinase inhibitor and I’m not apologizing for that, but I have been on a suppressive dose of levothyroxine, and I do know what that can feel like. I’ve met people who have raced off to the emergency department because they said, “Well, my doctor told me that I might feel like my heart was beating fast, but I wasn’t prepared for my heart trying to break out of my chest.” We have to know what our experiences are so that we can tell them to you. I’m not saying that we should wait until our next appointment in 3 months. If you’re having this uncontrollable diarrhea, you need to talk to your doctor now, so that you can get rushed to the nutritionist to talk about mechanisms to make your life more manageable. To me, it’s all about transparency. How do we communicate with our doctors? It is helpful having someone, like Jim has with Molly, watching us and saying, “Yes, write that down. That’s a problem, and don’t dismiss it.” The ideal scenario, if you’re going to have thyroid cancer—and you don’t necessarily wish that upon people—is to have someone there to remind us, “Pay attention to this, write this down, convey this to your doctor.” A second set of ears and eyes at all times is really helpful. For example, Jim just told us he could dismiss certain things, but Molly doesn’t. I’m watching this and smiling because it’s everything that you, the doctors, experience; patients are not always the best at conveying their symptoms. I will take Jim and myself down a step and say that men are even worse at this.

 I was thinking when you were talking about the thyroid suppression, because they suppress his thyroid, they also raise his level of thyroxin, which also counteracts with how patient I have to be some days, because he isn’t.

 Another aspect of the patient-to-patient support and communication is what Jim has described in terms of some of his adverse effects; they sound really awful and really scary and intolerable. Yet, Jim, you’ve been on 14 mg of lenvatinib for about 2 years now, and you look pretty good. You’ve been doing a lot. You’re down enjoying yourself in South Carolina, whereas up here in the Northeast, we’re cold and just lived through winter. It’s important to know that for most patients, these therapies, when they’re needed, are indeed manageable. There are days that can be quite difficult, but there are also, hopefully for most people, many wonderful days filled with great quality of life, or at least manageable quality of life, given all things considered.

 I agree with what you’re saying there, Lori. I think it’s really important for us to recognize that there is a trade-off when we’re using Lenvima [lenvatinib] and other tyrosine kinase inhibitors and other chemotherapies, but we can usually make that trade-off worthwhile. Drugs like Lenvima do work very effectively. Sometimes their responses are very durable and last for many months and years. They offer the opportunity to sustain a high quality of life, not cure the disease of course, but at least push off the date of our demise by months and years. If we can buy 3 or 4 or 5 years of high-quality life, maybe that bridges us to the next new treatment that comes down the pike toward us through additional clinical trials of novel agents. That’s the way I like to think about this journey. It’s a journey whose end we can’t see, but so long as every step along the way is about living, not just surviving, and managing the adverse effects of the drugs we’re on effectively, then I believe that this trade-off is worthwhile.

Discussion on how best to communicate with care providers while undergoing therapy for iodine-refractory differentiated thyroid cancer.

Jim Lesniak

Addressing Unmet Needs in Differentiated Thyroid Cancer

Treating Radioiodine-Refractory DTC After Progression on Lenvatinib

Practical Advice and Resources for Patients on Systemic Therapy for DTC

Communicating With Care Providers While on Therapy for DTC

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