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CURE’s thyroid cancer page is an extensive resource of cancer information featuring the latest thyroid cancer news, expert oncologist insights on the latest cancer treatments, oncology research, advocacy efforts, and medical data on thyroid cancer.

After many years of an extensive and fascinating career in pediatric oncology, cancer followed Dr. Michael Weiner to his own home: his daughter was diagnosed with thyroid cancer in her early 20s, and he himself received a diagnosis of follicular lymphoma.

” podcast, Weiner, who is the former chief of the division of pediatric oncology at Columbia University Irving Medical Center in New York, discusses the details of his cancer journey, how he was able to support his daughter through hers, and more.

“We tried very hard, my daughter and I, to have a daughter-father relationship, not a daughter-doctor relationship,” Weiner said. “Fortunately, there are many excellent, superb physicians at Columbia, which is where I've worked for so many years. And I knew that she was going to get excellent care, but she only had one father. And I wanted to be that person and to be there for her.”

For more news on cancer updates, research and education, don’t forget to 

“We tried very hard, my daughter and I, to have a daughter-father relationship, not a daughter-doctor relationship,” said Dr. Michael Weiner on this episode of the “CURE® Talks Cancer” podcast, in which he discussed his career, his own cancer journey and his daughter’s diagnosis.

When the Daughter of a Pediatric Oncologist Receives a Cancer Diagnosis

Usually, sitting down to watch tv for most is considered one’s down time. But when Dr. Erich Voigt was watching “Beach Front Bargain Hunt” on HGTV, he put his expertise to use and ended up saving a woman’s life.

 Talks Cancer, we spoke with Voigt about how he noticed a lump in a woman’s neck while watching tv and utilized the power of social media to find her — which ultimately led to a thyroid cancer diagnosis.

In this week’s episode of CURE Talks Cancer, we spoke with Voigt about how he noticed a lump in a woman’s neck while watching tv and utilized the power of social media to find her – which ultimately led to a thyroid cancer diagnosis.

Saved by the TV Screen

From the reveal of NBA star Dwyane Wade’s cancer surgery to a Bachelorette star on her husband’s cancer diagnosis, here is this week’s top cancer news. 

Dwyane Wade Talks Tumor Removal, Bachelorette Star’s Husband Cancer Diagnosis and More

Singer-songwriter Danielia Cotton, a thyroid cancer survivor and marathon runner shared how her experiences impact her art.

How a Singer-Songwriter’s Cancer History Can Be Heard in Her Music

Throughout September, the FDA approved drugs for the treatment of diseases including lung cancer, multiple myeloma, thyroid cancer and breast cancer.

Oncology Drugs Approved by the FDA in September 2024

The approval of Retevmo is for the treatment of adults and children aged 2 years and older with advanced or metastatic medullary thyroid cancer.

FDA Approves Retevmo for Some With Medullary Thyroid Cancer

First-time treatment with Lenvima continues to outperform other treatments for thyroid cancer. 

Study Confirms Lenvima’s Benefits in Thyroid Cancer

Interventions, such as speech therapy, after receiving radioactive iodine treatment for thyroid cancer may help manage quality of life. 

Managing Quality of Life After Iodine Treatment for Thyroid Cancer

After receiving radioactive iodine treatment for thyroid cancer, it’s important for patients to utilize the resources that are available, such as fertility preservation and speech therapy, an expert told CURE®.

Managing quality of life during and after treatment for thyroid cancer may be challenging, especially because of the radioactive iodine needed during treatment. However, there are things doctors can do to help patients retain the best quality of life possible, as Dr. Noah S. Kalman, a radiation oncologist at Miami Cancer Institute at Baptist Health South Florida said during an interview.

He noted that even patients’ diets have to temporarily change, in which they need to maintain a low-salt diet.

“That is probably the most difficult part about the treatment itself and having to follow that diet for a number of weeks,” he told Targeted Oncology®, a sister brand of CURE®. “That’s what we get the most complaints about from patients, as it can be very disruptive.”

Because quality of life is altered after treatment, Kalman emphasized that utilizing available resources is crucial. 

, he said, is something patients may be interested in, which foundations and advocacy groups can help with regarding costs.

Resources are also available to help patients with some of the side effects experienced after treatment, such as dry mouth and difficulty swallowing. From medications to help with dry mouth to speech therapy, there are effective strategies to help patients’ symptoms, Kalman said.

He sat down to discuss what patients can do after receiving radioactive iodine treatment for thyroid cancer and examples of resources that are available.

Things like [patients’] diet that they need to pursue with they're getting radioactive iodine treatment, and just resources that they can have available for after treatment and for patients that are interested in fertility preservation, there are some foundations that try to help cover some of the cost of doing that. That’s really a big help for our patients.

Generally, when patients are diagnosed with any kind of cancer, it’s an exceptionally stressful [and] anxiety-inducing moment. I think we try to impart to patients that for a lot of these differentiated thyroid cancers, papillary thyroid cancer, follicular [thyroid cancer], we expect them to have really excellent outcomes. We want them to continue all their plans for their lives and continue to live their lives as normally as possible.

If patients do have some issues with treatment, whether it’s dry mouth from the radioactive iodine, some patients can have occasionally some swallowing issues after their thyroid surgery, [but] there are some resources available. There are speech therapies, there are medications to help with dry mouth — there are things we can do to help manage some of these patients’ symptoms going forward.

subscribe to CURE®’s newsletters here.

Side Effect Management

Ryan McDonald: [00:00:00] Hello, everyone, and welcome to today's live broadcast, a CURE Educated Patient webinar, Treatment and Care for Thyroid Cancer. I'm Ryan McDonald, associate editorial director of CURE Magazine. We are pleased to bring you this web cast presented by CURE and in partnership with Eisai. There are just a few important announcements before we begin. We encourage you to ask questions during the event, which you can submit by typing them in the Q&A box you see on your screen. You will be receiving a survey via email tomorrow, and as a thank-you for watching the full webinar and completing the survey you will be entered to win a Visa gift card valued at $200. And now I would like to introduce you to those who will be leading today's discussion. We are pleased to be joined today by our moderator, Dr. Lori Wirth, medical director of the Center for Head and Neck Cancers at Mass General Cancer Center, and an associate professor in medicine at Harvard Medical School. Joining Dr. Wirth will be Gary Bloom, executive director of ThyCa, Michelle and Greg Perkins, a patient and caregiver, and joining us momentarily will be Karen Quinn, a nurse practitioner at Massachusetts General Hospital. Thank you for joining us today, and I will now pass this off to our moderator to begin the discussion.

Dr. Lori Wirth: Ryan, thank you for that nice introduction, and thank you to CURE Magazine and Eisai for sponsoring tonight's event. And it's so nice to have so many people joining us in the audience. Please use the Q&A, send in questions or comments that you'd like to share with us, and we will address as many of the questions and comments as we can in the Q&A section. But so I wanted to start out our discussion tonight talking about the general aspects of thyroid cancer and making decisions about thyroid cancer treatment. And I think that one of the things that's common in many thyroid cancer cases is that people often have a period of disease where we know that the cancer is there, it has spread or it has come back, yet we're not sure whether we should start therapy or not. So we often call this period, where we haven't yet initiated anti-cancer therapy for thyroid cancer, even though that we know that it's there as active surveillance. And I think it's tricky to know, when should we stop that time of active surveillance and start therapy? Now, the reason that we don't always initiate therapy as soon as the patient walks in the clinic door is that the therapies that we have for advanced thyroid cancer unfortunately aren't curative in general. So because the therapies don't necessarily cure the cancer, but they can control the cancer, shrink the tumors up, make them smaller, help people live longer, [00:03:00] but if we can't cure the cancer then starting treatment immediately may not be necessary in terms of achieving the other goals. And the therapies that we have don't work forever. There is a time period that they can work quite well, and that time period can be quite long, but the drugs don't work forever. So sometimes it seems to make sense to kick the can down the road a little bit and hold off to wait to start therapy for when patients need it a little bit more. And then lastly a reason that we think about active surveillance is because the therapies that we have all have some side effects. Different patients experience different side effects, and different drugs have different side effect profiles, but there is a trade-off in terms of initiating therapy and initiating the period that patients are going to have to have side effects from their treatment. So sometimes, again, active surveillance seems to make sense for a period of time in order to hold off on when patients are going to start therapy and then experience side effects from their therapy. So as I said, it can be a tricky decision knowing when the time is to shift from active surveillance to treatment. And maybe I can ask Michelle what her experience is. Michelle is a patient with thyroid cancer and did have a long period where there was thyroid cancer that was present and it was known – Michelle certainly knew about it, as did her doctors – but therapy wasn't initiated right away. And then being Michelle's doctor, I know that she's on treatment, and we did make that decision ultimately to shift away from active surveillance to actually starting treatment.

Michelle Perkins: I am very grateful for all the medical advances that have happened in the past – 28 years ago when I was initially diagnosed, and what was known then to be able to help was surgeries and radiation and what was known then. And then a few years ago when I got hooked up with Dr. Wirth and the clinical trial that has helped me to feel so much better. But those 28 years of not having treatment, watching, waiting, the active surveillance of knowing cancer was there but it was – And just waiting and watching, and doing blood work and scans, and waiting and watching.

Dr. Lori Wirth: Michelle, do you think – One of the reasons that I think we decided it was time to start treatment is because you were having symptoms related to your cancer. So was that an easy call for you once there was the clinical trial available?

Michelle Perkins: Yeah. Greg and I, [00:06:00] when we talked with you we did the whole pros and cons. I knew I was not feeling well. I knew I wanted to feel better, and other things I tried had not helped, and so was searching for that answer after 28 years.

Dr. Lori Wirth: Well, that's a long period of active surveillance. But here you are now on a good drug and feeling better, so things have worked out. I think that for me, when patients have symptoms related to their cancer, if we have an effective therapy to try, that decision is a no-brainer. So I think that in terms of my list of when to shift from active surveillance to treatment, symptoms certainly I think makes the decision a pretty easy one. I think we also now have data from several studies looking at VEGFR multikinase inhibitors, and it looks like the data really favored a bigger therapeutic benefit when the treatment is started earlier in the course of disease rather than later in the course of disease when people have more bulky disease and have just more advanced disease, and again, symptoms from their disease. And so I think that in thinking about using these drugs that cause side effects that we have to manage, and that can impact on how people feel on a regular basis, we have to now balance that against knowing that earlier initiation of therapy does seem to lead to more – A greater therapeutic benefit. So I think that we really need to individualize our conversations with our patients and talk with each individual patient about what is most important to him or her. Is the idea of putting up with some side effects from therapy a totally doable thing for the potential benefit for a longer duration of treatment benefit? Or is the idea of having any side effects related to therapy really an intolerable idea for the individual patients? And so I think that this idea of shifting over to active therapy really does need to be individualized. Gary, do you as an advocate for patients with thyroid cancer and running an advocacy organization, do you find that this is something that you hear patients talking about a lot and patients struggling with?

Gary Bloom: Yes. And I think one of the great things that happens is that patients are talking to each other more. They're trading stories back and forth [00:09:00] about when they started their therapy maybe a handful of years earlier, and where they felt they were in their disease journey versus where people are starting their journeys today. Also, I think that patients are more aware of the drugs that are available, and that some of these drugs will benefit them if they have a certain cancer profile. And so I know we're going to talk about that a little bit as well, but the conversation really is raising up the people who do connect. And I think it just makes it a more beneficial journey from start to finish. They are able to exchange ideas about side effect management as well.

Dr. Lori Wirth: So it's really, it's programs like this and organizations like ThyCa that really do make it more possible. And then Facebook, of course, and the Facebook groups that are out there that make it so much more possible for patients to communicate with each other and learn from each other. So Michelle, have you found that – Are you involved in Facebook groups about thyroid cancer? And what have you found helpful in your interaction there?

Michelle Perkins: Sure. Yes, I'm on a couple of Facebook groups, one specifically for medullary thyroid cancer survivors, one for – A couple for the rare genetic disorder that I have, the multiple endocrine neoplasia type 2B. And I've learned a lot and I've been able to share with others what has helped me with the symptoms, with procedures, with symptoms, all of it. It's been very helpful to be able to connect with people from around the world, because I've not met anyone else with the disorder that I have. So it's a great way to connect and share stories.

Dr. Lori Wirth: I think one of the things about having a rare disease is feeling like you're the only one who has this disease and knowing that there are other people out there who share in the diagnosis really can make a big difference. Everyone that has advanced thyroid cancer in need of treatment beyond surgery or radioactive iodine really does have a rare disease. It's just a small number of patients. And I think that goes to one of the challenges as well, in that in our larger community most medical oncologists haven't taken care of too many people with advanced thyroid cancer, and there are great resources for medical oncologists to learn quickly about [00:12:00] rare diseases that they will maybe only encounter once or twice in a several-year period of time. And that offers an additional challenge, I think, to optimizing care for patients with these rare diseases. Gary, you mentioned specific tumor types with specific drugs, and Michelle mentioned her MEN2B that is a condition that carries a germline RET mutation. What do you think, Gary, patients need to know about tumor genotyping in the advanced thyroid cancer setting?

Gary Bloom: So from my vantage point, I think it's important that we try to remember that each of us’ patients are different, meaning not just our journey but also our ability to understand. And so it's not so much that we as patients have to know everything. I know a lot more as a 25-year post-diagnosis patient than I did when I started, and I'm sure Michelle would say the same thing. But we grow in our experience and we learn, and one of the first things we have to learn is questions to ask. Not to in effect understand everything, but what questions can we ask our doctors to get them to help us understand what this journey is that we're going through? And so now one of the things that we're all talking about is understanding, what is my papillary thyroid cancer? What is my medullary thyroid cancer? And do I have a RET fusion, or do I have an NTRK, or whatever other underlying diagnosis that is important to you, Dr. Wirth? But if we know to ask our doctor if he or she knows about these things, if they don't, we're hoping to encourage them to go out and do some research, to reach out to someone like you, to make our experience much more positive. Because, as you said, these are rare patients, and so the odds are severely against the doctor treating many people. So we can't expect every doctor's going to be expert in every type of cancer, but they can become part of a network to learn more, whether it's by reaching out to a peer or by finding places to do their research. So that's where I feel like that's what we're encouraging, is to empower patients to raise up their doctors. And that's not a negative, it's actually [00:15:00] a positive.

Dr. Lori Wirth: I was thinking the same thing, to think of yourself as a partner with your doctor in coming up with the best treatment plan is I think a great way of thinking about it. Michelle, any advice that you have along those lines?

Michelle Perkins: So my initial diagnosis was, I was 15 and my parents were very involved in decisions and treatments at that time. My local endocrinologist had met Dr. Wirth at a conference, and when things were progressing beyond his knowledge sent me to Mass General to meet Dr. Wirth. And lots of discussions, and feeling comfortable asking the questions, and so glad we made that decision.

Gary Bloom: Can I ask, when did – Michelle, when did you make that crossover from your local doctor to Dr. Wirth as your primary, I guess?

Gary Bloom: And was there any particular reason at that point?

Michelle Perkins: Symptoms, and I had had a surgery that – Cancer had metsed, and was found on my liver, and so things were just progressing to a point where that doctor – my local doctor thought, "This needs to go where-" And I think he had maybe heard of some of the clinical trials that she was aware of and wanted that as a possibility for me as well.

Dr. Lori Wirth: I think that that's another aspect of sort of the tricky art of the science of taking care of people with thyroid cancer. Often there's early involvement in the disease journey with an endocrinologist, and in the US, at least in most centers, the drugs that we have available for advanced thyroid cancer generally are given by medical oncologists. And there's often a period of handing off a patient from an endocrinologist to a medical oncologist, or jointly sharing or bringing a medical oncologist on board to the team. And I think from speaking as a medical oncologist, we're always very happy to be brought into the team, and not steal the patient from the endocrinologist that has known and loved the patient for a long time. And again, a way that we form partnerships with our patients. So let's talk a little bit about the treatment options that are [00:18:00] available to patients, another area where there's a lot of complexity because thyroid cancer is not a one-size-fits-all operation, and we do have a number of therapies now that are available that are FDA-approved for the treatment of advanced thyroid cancer. So for patients with radioactive iodine refractory differentiated thyroid cancer such as papillary thyroid cancer or follicular thyroid cancer, or Hurthle cell thyroid cancer, or even poorly differentiated thyroid cancer, we now have lenvatinib as an approved agent for the first-line therapy of patients with that diagnosis when they have disease progression. We also have sorafenib as an approved first-line therapy for those patients. So there are two drugs that are FDA-approved in the first-line setting for those patients, for all comers with progressive disease. Just the other day the FDA approved a new drug – Well, or a new approval for a drug called cabozantinib in the second-line setting for patients with iodine refractory DTC who have progressed on first-line therapy. That was based on a randomized trial showing a progression-free survival benefit with cabozantinib that was quite significant. So we now have three drugs that are FDA-approved for those patients that are not genotype-specific. So they can be used regardless of what genotype is driving the tumor. And with lenvatinib, a majority of patients who are treated with lenvatinib will respond to lenvatinib, with their cancer deposits shrinking up and staying at bay for quite some time. The median duration of response with lenvatinib is about three years, so you can get a lot of mileage in terms of the activity of lenvatinib. Patients can often remain in response longer than three years as well; three years is just the median. The knowing which treatment is the best treatment for an individual patient can be tricky. There are some slightly different side effects that you see for example with lenvatinib versus sorafenib. With sorafenib, that there is a little bit more hand-foot syndrome that's seen than seen with lenvatinib, whereas with lenvatinib there's a little bit more high blood pressure seen. So in patients who might work with their hands I might not want to use sorafenib, in [00:21:00] those patients. Whereas sometimes patients have refractory hypertension and are already on three or four blood pressure medicines and still don't have good blood pressure control. An alternative to Lenvatinib might be a good choice in that patient population. And then we talked a little bit about tumor genotyping. So, we now know that a subset of advanced thyroid cancers, whether it's differentiated thyroid cancer, medullary thyroid cancer, or even anaplastic thyroid cancer can harbor gene mutations that we know are drivers of those cancers. And some of these gene mutations are now targetable with gene-specific therapy. We've talked a little bit about RET mutations in medullary thyroid cancer. We see RET fusions in about 10% of people with papillary thyroid cancer. And then there are NTRK fusions as well seen in a very small subset of patients with papillary thyroid cancer. We know that when these alterations are found, we now have first-line FDA-approved therapies, namely Selpercatinib and Pralsetinib that can work well for patients who have progressive disease. Now, we might want to use those gene-specific therapies if a patient hasiodine refractory papillary thyroid cancer with a RET fusion before using a drug like Lenvatinib because of the very high response rates and good side effect profile, and long duration of response with Selpercatinib or Pralsetinib. However, I'd say that the majority of the most frequent mutation, that's a driver alteration that we see in advanced thyroid cancer is the BRAF mutation. That's the most common mutation that's seen in papillary thyroid cancer and papillary thyroid cancer is the most common advanced thyroid cancer that we see in clinics. We've studied BRAF inhibitors in papillary thyroid cancer with BRAF mutations. And unfortunately, those drugs don't look quite as active as Lenvatinib in the first-line setting. I think generally in the field, we don't go straight to a gene-specific therapy if a patient has BRAF mutant iodine refractory papillary thyroid cancer because we have a better first-line drug I think, in which is Lenvatinib. Let's see what Gary and Michelle, any thoughts about the difficulty in sorting through all of these treatment options that are out there for patients? Are there good resources that you might suggest that are available to patients to help them formulate those really good questions to ask their doctors? [00:24:00]

Gary Bloom: Michelle, do you want to go first?

Gary Bloom: Thank you. I think that there – Some of the Facebook groups have become very helpful in terms of discussing these very many – Suddenly, we have a lot of drug options. And this is very – It's difficult to say, but this is exciting when we think back again, Michelle and I to 20 years ago as patients when there were really no options. And so, the idea that you can have a discussion with your doctor, whereas you said you can discuss which is a better drug. In my particular case, would it be Lenvatinib or Sorafenib? Because of what I do for a living. Because with this drug, I will actually be able to have some work-life balance and actually continue working ideally if I'm able to tolerate the drug. I've seen people have these discussions on the different Facebook discussion boards. And also, in our support group meetings, we’ll have those kinds of discussions. Again, people don't have to come prepared to lead the discussion as an expert because we have doctors to do that. We have to come armed with, I don't really understand, but I can ask you questions to draw out of Michelle, who is – unfortunately, she has become a patient expert because necessity brought it her to that point. But to draw out of someone like Michelle answers, which will help inform me in my specific journey. And there are a lot of Michelle's out there who want to share their experience. And I think Michelle, I'm going to speak for you. I’ll probably tell you that she can learn as much from sharing with me as a novice patient as I'm going to benefit from talking to her. To ultimately answer your question, I think trying to in any way come to connection with another patient who has proceeded them in their journey will enrich the newer patient greatly, but also benefit the trailblazer, if you will. And so, I know ThyCa has lots of pathways to help connect people, whether it's individually or in group settings. And again, there are the Facebook groups as well, which are part of our services. OK, Michelle, now it's your turn.

Michelle Perkins: I definitely agree with all you said. It's knowing your symptoms; it's knowing what's going on with your body and being able to express that to the doctor so that they know what you need and the severity of things. I think [00:27:00] as being chronically ill, we get used to how things are with our bodies and it might not be something that we feel is that big a deal, but it might be something the doctor needs to know in order to best help us. So, definitely reaching out to others, as you said, who've been on the journey before you. Facebook groups and groups like ThyCa who have those past that already in place for you it's great.

Dr. Lori Wirth: Another thing that I think works very well is when patients keep a notebook and jot down stuff while we're in clinic chatting away and then also jot down their questions and so forth before coming to clinic so that they make sure that the things that they've been worrying about for the last month that they have a chance to ask. And Greg, can I ask you as a caregiver? I think of the caregiver often as the notetaker. What advice do you have as a caregiver for helping patients navigate this complex world of advanced thyroid cancer?

Greg Perkins: Just be supportive and be ready to take care of the kids in a moment's notice. With Michelle's treatment, she's had to go to Boston two days a month for the last three years. And I've done my part to make sure that she's able to go as best I can and deal with the fact that the meds she's on does have some side effects and to help her navigate through. One of the side effects is it makes her tired, which is the side effect of most medicines I've seen. So, to help her deal with that.

Michelle Perkins: Just being a listening ear, just someone to run things by is huge as a patient.

Gary Bloom: But that's also not just at home; also, in the doctor's office. It's a great benefit to have that second set of ears there. Sometimes patients get a little too emotional in checkups and we can really rely on that second person that we hopefully have judiciously identified to bring with us to really help make sure that we hear things that we need to hear, not just what we want to hear.

Dr. Lori Wirth: Yep. That's a great point.

Greg Perkins: And sometimes I do ask questions that she doesn't ask because she's a social worker and I'm an electrical engineer, so I tend to see [00:30:00] things from a totally different perspective. Sometimes I ask questions that she may never have thought to ask that sometimes bring light to things that she hadn't considered.

Dr. Lori Wirth: Greg, that's an excellent point. And I wanted to say I know that you've done a great job as being a supportive caregiver because Michelle is always in clinic for her two days in Boston with a huge smile on her face and with not being all stressed out about what's happening with the kids at home. I appreciate your role as a caregiver as well, so we can focus on Michelle's care. Let's talk about those side effects. Fatigue is definitely across the board a side effect that we have to deal with all of the drugs that we use in treating advanced thyroid cancer. Michelle and Greg, I'd love to hear what some of your strategies have been to counteract that side effect that nobody wants to have for sure.

Michelle Perkins: Naps. We have three boys, so sleep isn't always our friend but grabbing sleep where you can when you can. Caffeine has been a good friend. But no, just taking care of yourself, listening to your body, and reaching out and saying I need to go take a nap. Can you take it from here? Is what we've done.

Greg Perkins: Yeah. And we've worked out our – We've worked hard to make it so that she only works three days a week. She has two days off. The kids are in school all week, so she can come – She's able to just take a couple of days and just not have to worry about work and kids and whatever else has to have to happen around here. I work from home seven days or five days a week, and often when she's off, I'll notice the house is unusually quiet. I'll go out and she's out cold in the bedroom. She’ll be like, “I just meant to lay down for five minutes,” and it's been like two hours. She gets a chance to rest and recharge her batteries. And that helps her a lot.

Dr. Lori Wirth: Setting expectations on what you can do and what you can't do it's too much. I think this is important and it's hard to be – because you have to be disciplined. Because hopefully, the drugs that are started that our patients will be on for a long time. And so, you have to be able to manage the side effects for the duration. [00:33:00] It's easy to be tired and worn out for one or two weekends. But to have to deal with fatigue related to therapy on an everyday basis for a long time is a different order of magnitude. And I think it requires giving yourself permission to take care of yourself and also acknowledging that you need help and that you can't do everything on your own like you used to be able to.

Gary Bloom: And Dr. Wirth, when do you start to think that a patient might need a holiday from their drug or need a dose adjustment to try to balance the benefits of the drug versus the heavy toll that it may place for an individual patient?

Dr. Lori Wirth: Gary, that's a great question. And again, this is individualized for patients. Some patients will have some diarrheas and other common side effect. Some people will have some diarrhea and they manage. And they're able to do most of their usual activities without worrying too much about having accident and they can deal with it. Whereas other patients might have the same number of bowel movements in a day. But the diarrhea is intolerable for whatever reason. And so, you really have to talk to your individual patients and find out how the side effects are impacting them. There's some other side effects where we don't have wiggle room, so we have to monitor the liver function with all of our therapies. Occasionally, we can encounter inflammation in the liver and if it's beyond a certain level that we can monitor in blood tests, then the drugs have to be held and then resume at a lower dose. The same is true for hypertension, which is a common adverse event with this entire class of therapies. We have to monitor the blood pressure and we don't ask people whether it's bothering them or not. We treat it when we see it. The side effects that are treatable rather than holding the drug and lowering the dose, I think we try to treat and maintain the dose as much as possible. Again, we have data from the clinical trials that show that you get more treatment of a better profound – more profound treatment effect with a higher dose in general, with these cancer drugs. And so, if a patient has started on Lenvatinib at the full dose, and the only big problem is hypertension, we want to treat the hypertension maximally with antihypertensive therapies, rather than holding the Lenvatinib and lowering the dose. There is, however, a role for holding the treatment, and then lowering the dose. [00:36:00] And that’s part and parcel of using these drugs, these oncology drugs that cause side effects. Again, it's not a one dose fits all operation. And so, if a patient is having intolerable side effects and needs a break, you take a break. In general, we want to keep the break shorter rather than longer, because we want to get as much benefit from the therapy. And a half-life of the drugs that we've mentioned for the most part is relatively short, so many side effects get better really quickly. And often it does make sense when a drug has been held for an intolerable side effect to lower the dose to the next lower dose level. And if patients tolerate that next lower dose level very well, and they're responding, they can perhaps stay on that lower dose level, or sometimes you can bump it back up and see if you can get away with a higher dose, again, at some point down the road. Michelle, what would you say are other recommendations that you have for patients in terms of dealing with side effects with therapy?

Michelle Perkins: Some of the other symptoms have been, when I had radiation, it impacted my salivary gland from 20 years ago. And then with this drug, part of a – one of the side effects is dry mouth. Just making sure I have water with me at all times. I work through that. There's been some swallowing issues from the surgeries in the past. So, working – to have some speech therapies actually to help with that. And with the clinical trial I was on, it actually had helped some of my other symptoms and was helpful. And so, I have not had huge side effects, very thankful with this medication that I'm on right now.

Dr. Lori Wirth: That's really great. Before we wrap up on managing with side effects, I do want to point out that first of all, patients on cancer drugs should never be shy about problems that they're experiencing. We have multiple ways to reach our clinicians now taking care of us, their patient gateways, electronic messaging, and so forth. Telephones still work in some places as well. But you don't want to be shy. But it is important to know that there are some potentially serious potential side effects that you want to bring to your provider's attention right away. And these things are pretty obvious. If you're having [00:39:00] trouble with your breathing, if you're having trouble with chest pain or bleeding or side effects that could represent a stroke or the blood pressure is 200 over 110, you want to reach out and reach your doctor's office right away with potentially serious side effects that are encountered. And we still all have pagers. So, if nothing less, page your doctor. Can we talk very briefly about any issues that patients might experience with adherence to therapy? Especially when patients are on treatments now for a number of years, it can be difficult to stick with the same medication for such a long period of time and not skip doses. And Michelle or Gary, do you have thoughts on, is there a temptation to just not stick with taking that medication every single day? And how have you thought about that? Michelle?

Michelle Perkins: I've taken medications my whole life, so it's part of what I do, but for this treatment, knowing that it's helping, knowing that it is making me feel better spurs me to want to keep taking it. So, that's been helpful, very helpful.

Dr. Lori Wirth: I have to say, I don't encounter too many patients who don't take their therapy. And when in general I found that when patients do need a break that they ask about if it's a good idea, if it's possible to take a break. I think that when the idea of not sticking with the therapy creeps in, which is totally fine, talk to your treating team about it. I want to make sure that we have time for Q and A. Just to wrap things up really quickly, we've talked to Greg about your role as a caregiver and how huge of support you've been to Michelle. And we've also talked about the kinds of resources that are available for patients, but I wanted to give Greg another opportunity to speak from the caregiver’s perspective about what you think is important for other caregivers to know.

Greg Perkins: Well, I guess the big thing I can take away from all this is just remember why you're doing it. I do this because [00:42:00] I love my wife and I want to see her healthy, and I want her to be here with me for a long time. I will say that my motivations are somewhat selfish. And it can be grueling. Her treatment for her cancer has been relatively simple, though. The case of the treatment she's been on has been relatively straightforward. But there have been several instances with her health where it's been very difficult. We've had several hospitalizations due to emergency surgeries, and random unknown medical issues that just crop up like that, and we just kind of muscle through it. But it's all – I keep doing it because she's my wife and I love her dearly, and I keep that in mind when the doctors are sitting there saying, "Gosh, Mr. Perkins, we just don't know what the problem is." And that's happened a few times.

Michelle Perkins: We have great family and friends, too, that help out in any way.

Greg Perkins: And so it's – I just have to keep in mind that she's worth the effort, she's worth the hardship that it takes sometimes to get her down to Boston or having to watch the boys myself for a couple of days. It's worth it to make her – To know that even though she's tired a lot, all of the cancer there inside of her is slowly receding, she's getting better. Instead of wondering is there a stamp on the bottom of her foot saying she's going to not be with me very long, that there's no date. I look down the road a lot further than I might have, so that's kind of a nice feeling.

Dr. Lori Wirth: I think that's put in such a lovely way. And I think also acknowledging that this is not easy, so there could be good days but there can be a lot of hard days, too. And then you've got to be in it for the long haul. Listen, there are – So we do have some questions coming in for the Q&A, and so I did want to save time to address the questions. So one of the questions is about active surveillance, what constitutes active surveillance. So there is a role for active surveillance for people with advanced thyroid cancer when [00:45:00] their disease is not causing symptoms and is relatively low disease burden and growing slowly. So if there are large amounts of lung metastases, and you know that further growth is going to begin to impact on the respiratory status, you don't want to wait around to see what happens. That's a reason to initiate therapy. Whereas if there are small, little lung nodules, and there's a handful of them and they're growing very slowly, then active surveillance can be an important part of the whole treatment journey. So we follow patients with tumor markets as well as CT scans in general when we're carrying out active surveillance. And if a patient is new to us, and they're newly discovered to have active advanced thyroid cancer, generally people will have a repeat CT scan and repeat set of blood tests with tumor markers in three months at the most so that not too much time goes by in order to establish what the pace of disease is. If there's a low volume of disease and at three months there's really no change in the tumor markers and CT scans, then another period of active surveillance can be quite reasonable. So another round of imaging and tumor markers might be appropriate to do again in three months, or it may be appropriate to stretch that interval out a little bit longer to do four months or even six months. So that's in general what constitutes active surveillance. And so we have another question here. So the point is that the care team did not really have a discussion about treatments, other than thyroidectomy, whereas some other patients are sometimes given a choice of having a total thyroidectomy or less than a total thyroidectomy. And how can patients know if surgery is the only option, and what is the best surgical option if surgery is the best option? And I think that that's a great question. It's a difficult question to answer, though, because there are many nuances that go into the decision for what the best thyroid cancer surgery is. There are some thyroid cancers that are small and [00:48:00] limited to just the thyroid gland, and sometimes patients can just have half of the thyroid removed as an adequate treatment approach for an early-stage thyroid cancer such as a papillary thyroid cancer. Whereas with medullary thyroid cancer that is spread to multiple lymph nodes in the neck, generally a much more extensive thyroid cancer surgery is appropriate. So I think that the best answer to the question is to really get back to the idea of, you want to ask your doctor probing questions about just the basic recommendations of your care. Ask, "Is this the only surgical option that you're recommending? Or are there other surgical options that we might want to consider together? And if this is the only surgical option, why is a less invasive surgery not a good option in your mind?" The other thing that I would say is that whenever there's a cancer diagnosis it's never wrong to get a second opinion, and there are often subtle differences in different teams' approaches to taking care of different cancers, including thyroid cancer. And often when a patient gets a second opinion they've had a chance to read a little bit more, think a little bit more, and really get a lot out of that visit beyond just seeing another doctor and hearing what another doctor has to say. So don't be shy about seeking second opinions. One other question from the Q&A is, how does hormone therapy play a role in treating thyroid cancer? What should patients know about this as a recommended option? So that's an excellent question. So thyroid hormone replacement is part of the treatment for most people with thyroid cancer. In addition to the fact that most people have had thyroidectomies, or at least part of their thyroid removed, for thyroid cancers that – excuse me – are differentiated thyroid cancers, using the thyroid hormone replacement, or levothyroxine, in most cases but not all, to not just replace the normal level of thyroid hormone but make the patient a little bit hyperthyroid, is actually part of the thyroid cancer treatment. So the pituitary gland makes a thyroid-stimulating hormone. The thyroid-stimulating hormone then tells the thyroid gland to make [00:51:00] more thyroid hormone. When patients are – when your thyroid hormone in your blood is low, the TSH goes up to tell your thyroid gland to make more thyroid hormone. Now, TSH can also stimulate differentiated thyroid cancer cells to grow, so part of our treatment for differentiated thyroid cancer is to replace the thyroid hormone with levothyroxine or another one of the thyroid hormone medicines, to not just make the patient have normal thyroid levels, but a little bit excess in thyroid levels so that the pituitary gland will think, "Well, there's plenty of thyroid hormone on board, so I don't need to put out any TSH. So we use thyroid hormone replacement to suppress the TSH to keep the TSH level nice and low so that the TSH is not stimulating the thyroid cancer cells to grow. And that is actually part of the treatment for during the active surveillance period for patients who have iodine refractory DTC, and as long as people are tolerating the suppressed TSH we usually continue TSH suppression as part of the active treatment for patients with iodine refractory DTC, even when we're starting therapies like lenvatinib. And just a little pearl about lenvatinib and the other TKIs that we use to treat thyroid cancer, they often will interfere with the amount of thyroid hormone replacement that patients need, and so the TSH and free T4 levels should be monitored when on therapy because we often need to make adjustments in the levels of thyroid hormone. Michelle, we have a question for you. Two questions for you about the difficulty swallowing and dry mouth. What are some tips that you have for diet changes and other strategies to deal with both dry mouth and swallowing problems?

Michelle Perkins: With the swallowing issues I have had to go to the extent of having my throat stretched. I also – For liquids, I have found that if I use a straw actually that it helps with the swallowing and choking issues. I have found some products that help with dry mouth in the stores, and utilizing those during drier times, overnight and such. And the diet piece is just, it's figuring out if it's softer foods, what types of liquid, if it's liquids. And like I said, [00:54:00] I have gone to a speech therapist to get some guidance with that as well.

Dr. Lori Wirth: There are speech and language pathologists who have a real interest in swallowing problems, and especially at larger medical centers. So I think, Michelle, the idea of seeing a speech and language pathologist to help along these lines can be really helpful. Gary, I want to toss a question to you. Thank you, Michelle, for answering that, by the way. Gary, what are some things that ThyCa could offer protections and their caregivers along their journey?

Gary Bloom: We can provide educational materials for both the physicians to hand out to their patients, and for the patients to download for free. Or we are willing to do – Or willing and able to mail materials to patients all over the world. We have support groups which, during COVID our support groups have gone to a Zoom environment, so if you go to our support tabs on our website you can join a support group that meets anywhere in the United States. You don't have to meet with the people who get together in your neighborhood. That's a nice benefit of the pandemic, if you will. Every fall, and coming up in a few weeks October 22nd through 24th, ThyCa will put on a thyroid cancer survivors' conference, which I'm very proud to say Dr. Wirth will be participating in, along with quite a number of her peers from all over the US, and actually many from around the world. And it's a way to expose us as patients to different doctors' thinking about different topics, and so it's just the idea of empowering patients again.

Dr. Lori Wirth: That was a great answer to the question, and I would like to encourage everyone to check out the ThyCa website. And thank Gary on behalf of all of the patients out there for leading that incredibly wonderful organization for all of these years. And unfortunately we are out of time, and I really do want to thank Michelle and Greg and Gary for joining me today and thank CURE Magazine and Eisai for hosting this program. If you'd like to watch this webinar again, it will be available on the Webinars on Demand page of curetoday.com within the coming days. Thanks again to the panelists and thank you especially to the audience for joining us and participating in today's event. You can always count on thyroid cancer patients to participate in the Q&A, [00:57:00] and I love that about our patients. I'd also like to think CURE and our partner Eisai for making today's educational web cast possible. Don't forget to check your email tomorrow for the survey to be entered to win a gift card, which I believe is a Visa gift card. And thanks to everyone for joining us. We'll see you next time.

View the full CURE® Educated Patient® Webinar: Treatment and Care for Thyroid Cancer on demand.

Webinars On Demand

Educated Patient® Webinar: Treatment and Care for Thyroid Cancer

 As we’re coming close to the end of the program, I want to ask questions related to after getting the biomarker results, from the patient point of view. Let’s say the testing was done, what are the options that I have at this point? What are the drugs that are available to me? As part of that discussion, Ms. Ferris, maybe I can start with you. What are some of the good resources that patients can go to and get some of this information? For instance, where do we go if we have an ALK alteration, a possible RET fusion, and are looking for a clinical trial, what are some of the resources that are available for patients?

 I think talking to your doctor is the first step. I think in lung cancer, it’s somewhat unique because there are so many clinical trials that are now the first therapy that a patient will get. For us, clinical trials are really a form of treatment and they’re one of the treatment modalities and options that are available for patients. We like to emphasize that part of it. But, there are patient advocacy groups. There’s LUNGevity, there’s GO2 Foundation, there are others out there too that have resources for people to learn more about what a clinical trial is.

For clinical trial matching, we have a clinical trial finder app on our website, a clinical trial ambassador program for patients to talk to other patients who have been in a clinical trial, to understand what it is and what kind of questions to ask. I think the best places to start is within your own disease space to find the advocacy groups that their clinicians trust or others do, and to also to find patient groups. There are Facebook groups now, and I think George, you referred to those and Deborah as well, that have communities that are big and continually growing, and they’re will be more, as we get better and better therapies, people are living longer and longer. Patients are able to develop these communities and share information and resources to then go talk to their doctor. Those three elements are good places to start.

Online resources available to patients with lung or thyroid cancer who are considering participation in a clinical trial after undergoing comprehensive genomic profiling.

Thyroid Cancer

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