The CURE Team

 Sometimes we choose therapy based on the life of a patient, the expectations. I may ask you, Donna, do you prefer a more aggressive combination in the vein, but you have to come to see more often? We were talking about an allogeneic transplant, which probably is going to affect your quality of life for a while, versus a more kind of palliative combination given by mouth, not as powerful, with the intent of controlling the symptoms. I think these conversations are changing. The dialogue I’m having with the patient, with you, is different than when we first met, when you were newly diagnosed versus later on. From the patient perspective, how do you see these issues? We have a lot of options, but now your myeloma is becoming more resistant, and what is important? Controlling the myeloma? Coming to the doctor’s office, maintaining quality of life, spending more time with family, less time with us? What do you think about this?

 That’s a tough question. Up until now, it’s always been about getting that time off and getting to live a normal life. I’m going to request that I get therapies that give me as much of a normal life as possible, but at the same time, keep the myeloma at bay. I think over time, based on everything I’ve learned today, that’s going to mean a little more time at the oncology center.

 Sometimes it’s a fine line between, almost stealing away some of your life, because by the time you come to the office, have your blood checked, your infusion, maybe longer or shorter, monitoring and then recheck everything, you spend a lot of time at the doctor’s office. Where I work, we have a phenomenal team that pays attention and is available 24 hours a day for patients, but it’s not easy, right? It’s not easy. You have other things to do in your life besides spending time with us. It’s an important decision that patients may need to make.

 And it’s not just the few hours in the oncology center, it’s that I’m not feeling 100% when I leave.

 You mentioned earlier, you can go back and do your activity on Monday. You receive therapy on Thursday, so for few days you’re paying the price, unfortunately.

 Right, even on the days I only take the dexamethasone, I’m still messed up Thursday, Friday, and Saturday, from feeling like I’ve just had 15 cups of coffee to crashing. So, it’s that.

 I think the conversation has to be had about whatever fits for you might not be what fits for somebody else.

 Asking questions, using your physician as a resource, is important. Also be very honest with your physician about your expectations. “How do I want to spend the rest of my life, receiving chemotherapy, different combinations, versus more palliative treatment?”

 Everybody’s different, I don’t know what I would do for myself, I agree with you. Now you are very strong, and this is what’s fits for you.

We talked earlier about some insurance ordeals and financial resources. Where I work we have a team of financial counselors, a social worker, a lot of partnerships with companies…particularly you were mentioning the copay for the oral drug; we can partner with some of the [insurance] companies.

They offer a lot of resources, support for caregivers and patients, providing even grant support for some of the copays of these drugs. Another important thing we are offering, not with COVID-19, but where I live, we have a support group once a month, led by some patients like yourself, where patients can feel comfortable to discuss their treatment, their experience. There also are a lot of big societies providing help. We had a partnership with the International Myeloma Foundation, and I offered some of these important meetings here in the area to the Multiple Myeloma Research Foundation. They do the same; a lot of reading material.

But at the end of the day, you don’t want to read everything on the internet and believe everything. You need to let us guide you. So find a physician that can guide you properly, particularly a myeloma expert who has access to clinical trials, the newer information, the resources. Also, find a support group, social support, caregivers, friends, a good network. I think those are very important pieces that we don’t stress enough. Make sure you don’t leave and spend the rest of your life just focusing on myeloma; focus on yourself. My take-home advice for today’s conversation is, like Donna, live your life, enjoy. She loves painting, flowers, gardening, running, biking, traveling, right? Your doggies.

 Enjoy your life. Rely on one of us, have a conversation, and be involved in the decision, what is important for your life? What type of therapy? What are your goals of the therapy? What is your last advice?

 You hit on something that I haven’t mentioned. Obviously when I first discovered I had multiple myeloma and subsequently when I found out it had come back, I searched for the best provider I could find. That is the very first thing I tell someone who’s newly diagnosed with cancer. Find an expert because it makes a difference.

 It’s not going to your myeloma specialist and then going to your oncologist anymore; it’s a team effort.

 Absolutely; it is communication between the two physicians, because you may live two, three hours away from me and it’s not convenient for you to come and get treatment where I work. You can continue treatment, but there is communication between the oncologist and the myeloma expert and some guidance, some help. They become your oncologist, they know who you are, and then you rely on the myeloma expert to know what is coming out and other therapies. Like in your situation, the CAR [chimeric antigen receptor]-T cell therapy on a clinical trial, then the selinexor, carfilzomib as part of the clinical trial were very important steps.

 You’re absolutely right, have at least a conversation with the transplant specialist and talk about the immunotherapy and these new agents. That’s my advice too.

Well, I think it was a phenomenal discussion. I’m so glad that you could be here with me today, and hopefully it will be helpful for patients and caregivers going through this journey together. One last message, think about the communication with the physician and the reliability. I know that you read a lot, and you are super smart, but sometimes you have to rely on our recommendation too. We can make the decision together. I have spent half of my life learning about the disease and approaching the disease, so we know what’s going on with that. It’s very important to maintain communication with your physician, with your team.

This transcript has been edited for clarity.

Videos

Donna and Dr Gasparetto close the discussion by highlighting the importance of physicians utilizing their patients, as well as patients being involved with their multiple myeloma treatment.

Taking Control of Multiple Myeloma

 We talked about your quality of life. Sometimes patients, they listen to us as physicians, but they listen to patients more. What type of advice would you want to give to other patients with multiple myeloma in your situation?

 Well, first of all I would tell them to maintain hope, or faith or whatever, because so much is going on in this particular field. When I first was diagnosed, I was told I had one and a half to two and a half years to live, and the treatments I have had, none of them were available when I started.

 So much research has been occurring that there’s always something out there that hasn’t been tried yet, so I think it’s a very positive sign. So at first, just have faith.

 Second, I think it’s really important that patients communicate religiously with their providers, telling them about symptoms, because providers can help them with over-the-counter drugs to minimize the symptoms. But also, I want to make sure that providers have a good understanding of all of the side effects of these drugs, and unless patients communicate, they’re not going to have that information. And the last thing is to keep moving. Whatever you can do at a particular point in time with your therapy, you should be doing it, because if you become sedentary it’s going to become your life. I made up this term, “You should do the Donna cancan.” Do what you can, when you can, so that for the longest time possible you’re mobile and capable of fully enjoying your life. Those are my three things.

 You’re great. You’re amazing, Donna, and I admire you a lot as a patient, as a friend. You’re correct. You are living with this disease, and so the communication with your physician is important. We approach myeloma at different levels; what we call the multidisciplinary management of myeloma is important because we want to maintain a good quality of life. So we work with a spine clinic, the renal clinic, the palliative, the pain control specialists. We all work together to make sure that you maintain a good quality of life. There is no point otherwise. The communication is important because every drug, every combination we choose is different for you. We have the expected side effects, but we can work with you to make it more manageable. I think it’s also very important to have your social network, your support at home. You are doing a phenomenal job, but I’m sure you have your network. Your caregiver, your people, right?

 I think it’s very important for every patient to delegate, to have their own social support. And also for the caregiver, it can be very stressful because sometimes they see you going down, reaching the bottom again. It’s very difficult to see a loved one going through that journey. I think it is very important also for the caregiver to be your cheerleader in a way. Does that make sense?

 My suggestion is, I always tell patients to live their life at full force. Exercise, maintain a good quality of life. Sometimes I adjust therapy based on if they have something to do, a trip or something. Of course we can do that. You need to address life, unless the myeloma is causing a lot of damage, but other than that, we can definitely make some adjustments. I think your quality of life is most important. As a physician, following patients with myeloma now for many years, I notice that patients are able to understand that. They live day-by-day and they enjoy their life, or they want it to be the best it can be.

 They continue to live their life, and myeloma is not dictating; it’s part of their life, but not the driver of their life. You are controlling the myeloma, with our help.

Donna gives advice to other multiple myeloma patients about what she has learned from living with this disease and her various therapies.

Donna’s Advice to Multiple Myeloma Patients

Dr Wirth, I wonder if you can comment about how personalization of care differs from common treatments. Why is that so important? If you can comment about what you think of the guidelines like NCCN [National Comprehensive Cancer Network] and ASCO [American Society of Clinical Oncology] regarding molecular testing, that would be helpful.

Sure. I can make a great argument that thyroid cancer is the poster child for precision medicine in oncology. The identification of 

 in medullary thyroid cancer in familial cases goes back 30 years. Approximately 60% to 70% of all thyroid cancers are going to harbor a potentially actionable alteration. In medullary thyroid cancers, the vast majority of patients who need systemic therapy are going to have

Personalized care in advanced thyroid cancer is exceedingly important. There are several reasons. One is that there are different types of advanced thyroid cancer. But even in the different subtypes, if we’re talking about iodine-refractory differentiated thyroid cancer, iodine-refractory poorly differentiated thyroid cancer, anaplastic thyroid cancer, or medullary thyroid cancer, even within those subtypes, there are vast variations in the natural history. When a patient with iodine-refractory papillary thyroid cancer walks through the door of the clinic, they may have a very different disease from the earlier patient who had the same diagnosis. Personalized therapy is crucial because the disease from patient to patient can differ a lot.

We do have a lot of different treatment options for patients. For patients who have indolent, very slow-growing disease, something like active surveillance may be very appropriate for a period of time, whereas for more rapidly progressive disease, you can’t wait and see how things are going to unfold. You have to start thinking about systemic therapy. We have therapies available that are gene-specific therapies, and then we have therapies that are available that are more multikinase inhibitors. They have great activity, and we have to weigh the risk-benefit ratio as well as what specific genotype is driving that tumor in order to select the best therapy for that particular patient.

 It really does make a huge difference if we can personalize the delivery of care from every perspective.

Lori J. Wirth, MD, of Massachusetts General Hospital, comments on the role of molecular testing to guide treatment decisions in thyroid cancer and explains how personalized medicine differs from standard treatment approaches.

Personalized Medicine in Thyroid Cancer

 video series titled “Educating Patients on Biomarker Testing.” I’m Dr Hossein Borghaei, the chief of thoracic medical oncology at Fox Chase [Cancer Center], part of Temple Health in Philadelphia, Pennsylvania. Joining me in this discussion are my colleagues Dr Lori Wirth, the medical director of the Center for Head and Neck Cancers at Massachusetts General Hospital in Boston; Dr. Benjamin Levy, the clinical director of medical oncology at Johns Hopkins Sidney Kimmel Cancer Center in Washington, D.C.; Andrea Ferris, the president and chief executive officer of LUNGevity; and our guest patients, George Labonte and Deborah Kimmel. Today we’re going to discuss a number of topics pertaining to educating patients on biomarker testing, including the use of biomarker testing to provide an individualized treatment plan.

I’m going to turn to my clinical colleagues Dr Levy and Dr Wirth to start the discussion, asking Dr Levy to start by providing a little historical perspective. I want to get into the evolving landscape involving the field of molecular testing. If you don’t mind going over some of where we’ve been and where we’re going, that would be a nice way to start the discussion.

Thanks, Hoss. I’ve been fortunate to witness these advances in a rapid way in non-small cell lung cancer. When I started, the running joke that I always said, if people asked why did you go into lung cancer, I go, “Well, it was easy.” There were really just three drugs at the time. Of course, I went in for other reasons, but there were three drugs. There was pemetrexed, bevacizumab, and erlotinib, and there really was no biomarker testing done.

Around 2009, we started to learn about potential relative mutations that are targetable in lung cancer with 

. About 15% of all lung adenocarcinomas had this mutation, and the fortunate part of that genetic alteration was that we had targeted therapies that we could leverage potentially for 

 mutations. Excitingly, we’ve learned that 

 is just chapter one of a novel that’s still being written on molecular testing in lung cancer. After 

, we’ve had ALK rearrangements that were identified, that we now have drugs for. Over the past five to 10 years, we’ve learned about more genetic alterations within the tumor that we can identify, that we can wed to targeted therapies. This includes 

. We’re learning more and more about emerging biomarkers like 

[human epidermal growth factor receptor 2] and 

G12C [Kirsten rat sarcoma 2 viral oncogene homolog].

I’ll summarize by saying that we’ve got many actionable mutations that we can test for in lung cancer that can inform treatment decisions, and that every patient who walks through the door should be tested for, for the most part. Lung cancer is on the leading edge. I feel lung cancer is the poster child for precision medicine, and it’s an exciting field.

I absolutely agree with you. There’s a reason most of the national guidelines, even international guidelines, have specific recommendations for molecular testing in lung and, to some extent, thyroid malignancies.

Benjamin Levy, MD, of Johns Hopkins Sidney Kimmel Cancer Center, describes how molecular testing in non–small cell lung cancer has advanced and impacted treatment.

The CURE Team

Taking Control of Multiple Myeloma

Donna’s Advice to Multiple Myeloma Patients

Personalized Medicine in Thyroid Cancer

Molecular Testing for NSCLC: Historical Perspectives

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