On October 16th, 2023, my husband Dan was diagnosed with pancreatic cancer. At that moment, life became blurry, and all I could hear was a whooshing in my ears. I have fuzzy memories of follow-up medical appointments and phone calls to loved ones for what felt like years, though it was only a couple days, and I was beginning to believe that I would be on my own to figure out the next steps. It was then that I heard the voice of Jill May, B.S.N., RN, OCN.

She was on the phone with my husband as I returned home from picking up our daughter, and just the sound of her voice triggered my tears. She heard my pain and immediately offered me grace and kindness. She knew that though Dan was in for the battle of his life, his path would be dictated by the professionals and my path would be all but forgotten by most.

She came to my aid by telling me that she knew how I felt and that it would all be OK, but that is not what she said. In fact, she has never uttered those platitudes. Instead, she told me that she knew it felt like a five-alarm fire, and yet all the helpers were just standing in the parking lot and watching. She calmly explained that the urgency I felt wasn’t being disregarded, but rather the precision of the diagnosis and treatment plan needed to take priority.

She walked Dan and I through staging and creating our care team. She then said something that has stuck with me and will remain with me throughout this entire journey. She said, “I know right now that this feels like taking a drink from the fire hose, but I promise you things will start to calm down and make sense.” In that moment, I didn’t believe her. Now I know that she spoke the truth, and that sentence has become my mantra.

Since that first phone call, Jill has been walking with us, side by side. She checks on all of Dan’s needs, asks about my wellbeing and checks in on our daughter. She is able to make us feel seen, heard and honored while maintaining a full caseload. I have never been so impressed as I was when I saw her with a room full of patients, and they all felt as honored and seen as we do. She shows up for us all during our hardest moments, as if we are the only people on earth.

As I count my blessings during this terrible journey, I know that what I am most thankful for is Jill’s guidance and warmth.

I have had the privilege of working closely with Jill May, B.S.N., RN, OCN, care coordinator for our liver and hepatobiliary cancer program at Abbott Northwestern in Minneapolis. I have been consistently impressed with her exceptional skills, dedication and compassion. Jill takes the time to know not only the medical aspects of each patient’s case but also their personal lives, including their caretakers, hobbies and stressors. This holistic approach to patient care has undoubtedly contributed to the positive outcomes and enhanced quality of life for those under her care.

One of Jill’s standout qualities is her remarkable ability to act as a liaison between patients with cancer and their entire medical team. She has cultivated strong relationships with professionals in interventional radiology, oncology, surgery and various other specialties. Her extensive network and open lines of communication ensure that every aspect of a patient’s care is seamlessly coordinated. Jill has all key personnel on speed dial, facilitating quick and efficient collaboration, which is essential in the complex landscape of cancer treatment.

In addition to her exceptional organizational and communication skills, Jill consistently demonstrates a genuine and heartfelt concern for the well-being of her patients. Her caring and thoughtful approach create a sense of trust and comfort, helping patients navigate the challenging journey of cancer treatment.

In conclusion, I wholeheartedly recommend Jill for this award. Her skills, dedication and compassionate approach make her an invaluable asset to our team.

As a registered nurse new to oncology, I could not have asked for a better role model than Jill May, B.S.N., RN, OCN. Jill has been with the Liver, Pancreas and Bile Duct Program at Allina Health Cancer Institute for 15 years and was in oncology nursing for 18 years before that.

Her role here has been the surgical HPB Oncology Nurse Navigator. She has led numerous support groups, given many educational presentations on her specialty and cared for countless patients. Jill exemplifies what it means to be an oncology nurse. With her patients, she is never afraid to have difficult conversations. She has mastered the ability to be both stern yet humble, and direct yet kind. She helps patients open their perspectives again to see themselves as more than just their cancer diagnosis and instead as a whole person — something that is important yet challenging.

She is often the first person patients and clinicians alike turn to for resources, as her depth of knowledge and years of experience are unmatched and invaluable. She is the powerhouse of our program, and the reason many patients are sent our way. As a nurse new to the program, I have gotten used to walking into clinic rooms and facing looks of disappointment from my patients, who inevitably ask, “Where is Jill?”

I believe she is the reason that many of our patients not only are compliant but have the strength to carry on. Many of our patients have challenging treatment plans with poor prognoses, and yet so many do well. She motivates patients by believing in them, meeting them where they are at and helping them navigate the course when obstacles come up. She is the kind of caregiver any facility would be proud to have, and any nurse would be proud to be.

I met Jill May, B.S.N., RN, OCN, when I was diagnosed with stage 1B pancreatic cancer in 2019. After receiving a confirmed biopsy, I was told that a surgical consult was my next step. Within hours, I was contacted by Jill, who explained the journey I was starting and set me up with a top-notch surgeon. Learning I had pancreatic cancer was daunting to say the least, but Jill's compassionate and thorough approach gave me great comfort. In fact, after my first call with her I nicknamed her "Jill the Hug."

Over the past five years, I have experienced her exceptional follow-through, and I know I can count on her to ensure that I get the care I need. For example, after Whipple surgery, I had lost 30 pounds in a matter of weeks (I am 5’ 2”), and I called Jill. She immediately set me up to meet with my surgeon the next morning, which was followed by exploratory surgery with a gastroenterologist.

There are so many moving parts when dealing with cancer, and I’m so fortunate to have had Jill to keep me organized, moving forward and healing. She is adamant that patients get the best possible care and doggedly tracks down whoever is needed to solve an issue.

She has played a critical role in both my physical and mental state. She was there whenever I’ve been admitted to the hospital. This was especially important to me when I my cancer reappeared, and surgery was needed to remove the rest of my pancreas and spleen in 2021. COVID-19 was very active, and the hospital was not allowing any visitors. I was nervous and sad to be there without my family, but Jill was there when I checked in with a pair of socks with tigers on them and again after surgery. I’ve continued to get the value of her time and insight when I join in a survivors’ meeting every month that Jill co-chairs.

All of her effort, skill and caring have been so important to me as I’ve journeyed through chemo, radiation and surgeries and the resulting “chemo brain.” In my heart, I know that Jill has been key to my survival.

Jill May, B.S.N., RN, OCN, is an exemplary oncology nurse at Abbott Northwestern Hospital. She epitomizes dedication and compassion in her profession. Her life’s work revolves around going beyond the conventional boundaries of nursing care to ensure the well-being of her patients.

Jill’s commitment not only extends to the patients themselves but also encompasses a genuine concern for the families affected by the challenging journey of illness. What sets Jill apart is her unwavering focus on both the quality of life and quality of care for her patients. She approaches her role with a holistic perspective, recognizing that the emotional and psychological aspects are as crucial as the physical ones.

For patients facing terminal illnesses, Jill possesses a unique ability to navigate the delicate terrain of preparing them for everything that lies ahead. In these instances, Jill’s approach is marked by empathy and a deep understanding of the profound emotional challenges associated with end-of-life care. She engages with her patients and their families with sensitivity, providing not just medical support but also emotional support during these difficult times. Jill becomes a beacon of comfort, guiding her patients through the uncharted territory with abundant grace and compassion.

Her impact extends far beyond the hospital walls, leaving an indelible mark on all of the lives that she touches. Jill stands as a testament to the profound difference that a healthcare professional with genuine empathy and dedication can make in the lives of those facing the formidable challenges of illness and the prospect of saying goodbye.

For over a decade now, Jill May, B.S.N., RN, OCN, has provided unrelenting care as a hepatobiliary oncology nurse to patients with some of the worst diagnoses you can get in the cancer world.

Even though we work for separate health systems, I have been lucky to share many patients with her as I work as a RN liver transplant coordinator. We have shared many wins and unfortunately many loses together over the last decade. During this time, I have witnesses firsthand her extraordinary organizational and execution skills, her compassionate caring and expert communication with patients, and her no holds barred advocacy to ensure each and every patient get the care and treatment they deserve. All this has been done despite the reality that patients with hepatobiliary cancer can and do provide a major mental burden on their caregivers. It is common to review imaging in the morning that shows progression of disease in one patient, and then an hour later, you celebrate a disease-free report with another patient.

The mental health challenges presented by patients isn’t the only issue that Jill — and nurses in general — routinely deal with. All the above, and more, is done, even though she must do more, with fewer resources. Lay-offs, nursing strikes and a decreasing budget has provided its own issues. These have all happened, sometimes multiple times, over the last decade. This leads to the difficult decision of working overtime without getting paid overtime or allowing patients to suffer as a result.

I can attest that she has never taken the easy path. Most weeks she will work overtime, while knowing she won’t get paid more, to ensure patients get the care and information they deserve. Given my role as a liver transplant coordinator, and sharing many patients with hepatocellular carcinoma with her, I have heard directly from mutual patients the benefits Jill provides to them.

However, I have also seen and heard this on a personal level. A friend I play hockey with was taken too soon by pancreatic cancer. I have been told numerous times by his brother (who I still play hockey with), his family and from other friends the extraordinary care and treatment he received from Jill.

Jill simply is everything you would want in a care provider. She is extremely knowledgeable in her field, she is compassionate and caring to no end, and it is an absolute guarantee that she will never allow anything but the best to happen to her patients. She will fight right alongside each one until the end. She is the first person I would call if any one of my family members needed help.

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Jill May, B.S.N., RN, OCN, is a highly respected oncology nurse known for her exceptional dedication, compassion, and holistic approach to patient care. Her role as a care coordinator involves seamless collaboration with multidisciplinary teams, ensuring comprehensive care for patients with complex cancer diagnoses. Jill's ability to connect with patients and their families on both medical and personal levels fosters trust and comfort. Her unwavering commitment extends beyond clinical duties, providing emotional support and advocacy, even amidst challenging healthcare environments and resource constraints.

Several colleagues, patients and caregivers nominated Jill May, B.S.N., RN, OCN, for the 2024 Extraordinary Healer Award for her dedicating to caring for those with gastrointestinal cancers.

Taking a Drink From the Fire Hose

Dr. Elizabeth Aby

I have recently published my memoir, “Coloring Outside the Lines, Surviving and Thriving with Cancer for 30+ Years.” The first paragraph of the introduction reads:

This is a cancer memoir, but it’s not a story of how I became cancer free, because I didn’t. My first cancer diagnosis was in 1989. I’ve had three primary cancers—breast cancer in both breasts and ocular melanoma—and more recurrences than I can count. I’ve had breast cancer metastasized to my lungs since 2011. Essentially, cancer has been a chronic illness for me for over thirty years. My story is about living fully and thriving with cancer.

In 1989 I was working in the furniture store my husband and I owned. It was his dream, not mine. I wanted to use my talents and gifts in a way that would benefit others. A diagnosis of cancer woke me up. It brought me back to my center and to the importance of belonging to something larger than myself. I feel that my cancer diagnosis was an answer to my prayer, “Lord make me an instrument.” I needed that wake-up call to get back on my true path and experience a meaningful purpose in life.

Before I joined my husband in the furniture business, I was the director of the Center for Health Awareness and was teaching mind-body health seminars to nurses. I knew there was more to healing than chemotherapy, radiation and surgery. These treatments apply only to the physical body and I knew I was more than a body.

When I was diagnosed with cancer, I looked for resources to heal the whole person. When I couldn’t find them, I created them. I designed a conference called “Cancer as a Turning Point, From Surviving to Thriving “™ and formed a non-profit, Healing Journeys, as a vehicle to produce it.

My ongoing cancer experience kept me always looking for new treatments, both conventional and integrative. The conference gave me a platform to present these resources to thousands of people, many of whom have told me the conference saved their lives.

Over a 25 year period, we offered that conference 37 times around the country, benefitting more than 25,000 people. It was the most satisfying career I could imagine, and I was definitely an instrument used to benefit others. It wouldn’t have happened without my cancer diagnosis.

Having such a strong purpose for living, and experiencing all the synchronicities supporting this purpose, reminded me I belong to something larger than myself. I think this is the key to my being mostly calm and accepting during my years of living with cancer.

Spirituality and my connection to the Divine has been a driving force in enabling me to thrive with cancer for over thirty years. A way of explaining this that resonates with me is that I have a finite self and an Infinite Self. My Infinite self is the individual called Jan who functions in daily life. My Infinite Self is my connection to something larger than myself. It is my spiritual Self. When the finite and the Infinite selves are in alignment, this is my superpower. The Infinite me has all knowingness, is not afraid and is at peace. The Infinite me isn’t anxious waiting for test results. The Infinite me doesn’t panic when cancer marker numbers go up.

The trick is not to let finite events eclipse the Infinite. I’m not saying this is easy to do. The world around us addresses only the finite self, and reminds us constantly of all the bad things that can happen and how much we need to be afraid. I have to consciously make an effort to stay in the peace of the Infinite Self. There are many tools that help me—deep breathing, meditation, prayer, nature, laughter, music, quiet and remembering my purpose in life.

I can stay in an attitude of gratitude if I believe anything that washes up on my beach (even cancer) is for my good. Things don’t happen 

 me. I may not immediately see the goodness in an event or a diagnosis, but I know my finite viewpoint is limited. I trust that the goodness is there and I look for it.

My spiritual life is an essential part of what has allowed me to live with cancer for over thirty years. Prayer, meditation and daily reading of spiritual texts, along with a connection to a spiritual community, are all crucial components of keeping my spirit enlivened, my attitude optimistic and my body healthy.

This post was written and submitted by a CURE reader. The article reflects the views the author and not of CURE®. This is also not supposed to be intended as medical advice.

Coping With Mental Health During a Cancer Diagnosis

Jan Adrian

As a sarcoma medical oncologist, the No. 1 question I am asked by my patients pertain to whether drugs indicated for other cancer types would be beneficial to them. For many years, I have been asked about what impact immunotherapy would have on sarcomas, especially more recently, as significant progress on this front has been made in other malignancies. This progress is highly publicized and often makes its way into popular media outlets. On June 23, 2022, 

 published “PD-1 Blockade in Mismatch Repair–Deficient, Locally Advanced Rectal Cancer.” In this study, 12 patients with mismatch repair–deficient stage 2 or 3 adenocarcinoma completed treatment with Jemperli (dostarlimab) and have undergone at least six months of follow-up. All 12 patients had a clinical complete response, with no evidence of tumor on MRI, PET, endoscopic evaluation, digital rectal examination or biopsy. Naturally, patients with sarcoma who see these articles would ask why these immunotherapy treatments cannot be applied to their tumors.

Sarcoma is the general term for a broad group of cancers that begin in the bones and in the soft (also called connective) tissues (soft tissue sarcoma). Sarcomas are a rare cancer accounting for 1% of adult malignancies, with the average patient being 61 years of age. For those patients with tumors that are not surgically resectable or who have metastatic disease, drug therapy tends to be the only choice of treatment. Historically, we relied on chemotherapeutic agents with varying degrees of toxicities and had varying, often unpredictable, degrees of patient response — both with respect to tumor shrinkage and to the toxic side effects.

For many years we have used drugs such as doxorubicin, gemcitabine, docetaxel, ifosfamide and dacarbazine. In the last decade, we started to incorporate Yondelis (trabectedin), Halaven (eribulin) and the first tyrosine kinase inhibitor to be approved for a wide variety of soft tissue sarcomas called Votrient (pazopanib).

As patients with melanoma, lung cancer, head and neck cancers, gastrointestinal cancers and other malignancies were receiving immunotherapy, our patients remained on chemotherapy and targeted therapies, with few patients receiving immunotherapy on or off clinical trials.

Over the last several years, our approach to patients with sarcomas have dramatically changed. We have now incorporated the use of next-generation sequencing to assist with our understanding of the genetic makeup of tumors to discern their biology as well as treatment options. For many patients with soft tissue sarcomas, we have integrated the role for immunotherapy. Currently, the National Comprehensive Cancer Network guidelines has incorporated immunotherapy for the care of certain patients with a sarcoma diagnosis. These guidelines are the recognized standard for clinical direction and policy in cancer care, and are the most thorough and frequently updated clinical practice guidelines available in any area of medicine. Currently patients with myxofibrosarcoma, undifferentiated pleomorphic sarcomas, cutaneous angiosarcomas and undifferentiated sarcomas can be treated with immunotherapy, as recommended by the guidelines.

We anticipate that the field of sarcoma management will change drastically over the next several years, with the inclusion of T-cell therapies for patients with synovial sarcomas myxoid round-cell liposarcoma. Currently, there are ongoing T-cell therapy clinical trials for these patients, and data from these trials will be used to support a Food and Drug Administration (FDA) biologic license application submission next year, which may achieve approval and access for many more patients with sarcoma.

Most of the exciting advances that we bring to the field of sarcoma treatment lie within our clinical trial portfolio. At any given time, a sarcoma specialist will be conducting 10 to 20 different clinical trials with the goal of bringing a drug to the FDA for approval. We have been successful with this feat over the last decade with the additions of sirolimus protein-bound particles for injectable suspension (albumin-bound), Tazverik (tazemetostat), Turalio (pexidartinib), Qinlock (ripretinib) and Ayvakit (avapritinib), to name a few. Our work in clinical trials continues to drive us towards achieving the best therapies for our patients so that we can match an individual patient with an individual treatment, decrease the drug toxicities delivered to the patient and improve patient-reported outcomes. Our goal remains to provide precision medicine to our patients, which can be defined as looking at the genetics, environment and lifestyle of a person in order to select treatment that could work best for them. It is our duty to ensure that patients can have the most comfortable lifestyle possible during treatment and minimize the worry associated with treatments, both because of side effects and fear of ineffectiveness.

While we have come a long way from a chemotherapy-only approach, as clinical, translation and basic science researchers, we aim to continue to improve upon these successes.

Section Chief of Sarcoma Medical Oncology, Department of Medical Oncology & Therapeutics Research

Professor, Department of Medical Oncology & Therapeutics Research

City of Hope Comprehensive Cancer Center, Duarte, CA, USA

An expert writes about his experience as a sarcoma medical oncologist and how the field may progress with several therapies in the pipeline.

Advances in Sarcoma Treatment and Future Directions

Dr. Mark Agulnik is the Section Chief of Sarcoma Medical Oncology, Department of Medical Oncology & Therapeutics Research, Professor, Department of Medical Oncology & Therapeutics Research at City of Hope Comprehensive Cancer Center, Duarte, California.

Dr. Mark Agulnik

I’m going to pose a question now to everyone. How can the medical team improve the care of patients with brain metastases? Perhaps we can start with having Ivy and Katie speak to that.

Patients need information. That’s probably the most important thing. When you’re diagnosed, everything is thrown at you. I think patients need to understand what brain metastasis means, how that can impact their lives, if they’re asymptomatic versus symptomatic, what the options are for treatment, both short term and possibly long term. That needs to be laid out to people in an easily understandable way up front. I also think patients need to understand what the ongoing management is going to be for brain metastases, how often they’ll be scanned, if you have certain symptoms, when you should bring that up and maybe recommend moving a scan up earlier. But basically, what it comes down to is increased information.

I agree. We’ll have Ralph, after Katie has a chance to speak, but that’s exactly what the ABTA [American Brain Tumor Association] survey results showed us, too. But Katie, do you want to add to that?

I agree with everything Ivy said, although I have already said I’m the patient who doesn’t want to hear all the worst-case scenarios. I don’t know how I would have responded if a doctor said, “Listen, I need you to be looking for these things,” because then I would be like, “Oh my god, I think that symptom happened to me last week, I think I have a brain tumor, I think you need to scan me right now.” But I think I’ve gotten a little bit better now that I’m seasoned at dealing with this.

Another thing that was shocking to me was, I’m not claustrophobic, I didn’t think I was, until I got a brain scan. That’s a very different scan. If you think, “Oh, I’ve done scans, I know what I’m doing,” and suddenly you’re going headfirst down a very narrow tube with a cage on your head, it’s terrifying. To this day, if I ever hear of someone having to go in for a brain scan, I’m always very careful with how I present information to other patients. But I always do say, “That one is a little harder for me, and I take a Valium for it.” I call that a cancer perquisite. But Nick has to drive me to those scans now because they still, to this day, I get a lot of anxiety around that particular scan.

 I think your experience is not a rarity, I think other patients have had similar experiences. Ralph, do you want to add to that?

Sure. I think you all know this very well, but patients and caregivers trust you and respect you. When you take the time to sit down and give them clinical trial treatment options, they listen, they absorb it. But it’s important that you also involve your team, your nurses, and your social workers, so that when they leave the office, they trust you, but sometimes they don’t fully understand everything that you have said. Having your support staff following up, working with them on clinical trials is important. Second, the survey shows how much they lean on, and want to know more about, organizations like the ABTA. You can trust us to work with them where they are and then afterward. People like Nick, who is a phenomenal caregiver, we can talk to him about whether he’s interested in being a mentor to others after he feels like Katie is at a place where he can give time to other caregivers.

 I completely agree, Ralph. Dr. Gondi, did you want to add to, how can we as a field improve the care of a patient with brain metastases?

As I listen to Ivy, Katie and Nick speak, it reminded me, at least in my clinical experience, that when systemic cancer goes to the brain, there are a lot of emotions, understandably, there’s a lot of fear, there’s a lot of confusion, consternation. And it’s not just on the patient’s perspective, but even some medical oncologists. What I’ve appreciated is that sometimes medical oncologists, as a brain tumor specialist, and I’m sure Dr. Brastianos, you probably do the same, I just say, “You know what, I’ll take care of the brain. Everything above the neck, I’m going to watch and keep an eye on, and everything below the neck, your systemic oncologist can keep an eye on it, and we’ll do it together.” That collaboration becomes useful. Just during this Zoom call, I’ve gotten a couple of texts from medical oncologists about patients we have, and I think that gives patients and their providers some sense of calm and comfort, that everything is taken care of up here, that we’re OK. If I have a headache, call that doctor who specializes in brain stuff and let him know, so that they can address it. I do think that there is tremendous opportunity to help and augment the care of patients and their providers, especially when we’re talking about the brain.

Of the two concepts I tried to cover, one is that the neurological team, whether they are a surgeon, radiation oncologist, or whatever, they have the knowledge and expertise pertaining to the brain and to the central nervous system. That team is bringing that expertise to help the medical oncologist treat the patient in a complete way. The second concept is that it’s a complicated world, and one specialist within the neuro field cannot handle all the problems of brain metastasis. It does require a whole team of a surgeon, oncologist, radiation, radiologist, and so on and so forth. Bringing all these together in the brain metastasis concept is a great advantage for patients.

 I completely agree. On that note, we can be providing more support to caregivers. Nick, you already alluded to that earlier, but tell us more about how we can help caregivers.

This morning was a good example, my first question to Kate was, “How are you doing?” I think that’s a nice question also to ask a caregiver, how are they doing. I think I would like to see more proactive support offered, and if you do need support, here are avenues you can use to find support and information. Then what do you need as well as a caregiver, what can we do to support you, because we’re here to help the patient. The more that we can be supported to be in a better place to help the patient, the better that could be for us. Even Ivy talked about how she was the patient, she looked after the kids. I’m sure while her husband was working, that was a huge impact on him, as much as there was when I had to go to Pittsburgh, change my schedule, and be there to support Katie in the hospital every day. It would be great for a little more attention to the caregiver, to make sure things are well there, because we’re here to help the patient, and we’re part of the overall story and on the journey together.

That’s so important, Nick, thanks for saying that. Again, thank you to Katie, Nick and Ivy for sharing these deeply personal journeys. We’re so inspired by your stories. Thank you, and we hope that you’ll continue to do well and respond to therapies. I think we’ve reached time. Thank you to everyone who participated in today’s 

® program. I want to thank Ivy and Katie for sharing your story, and my colleagues, Vinai Gondi, Ray Sawaya, Manmeet Ahluwalia, and of course, Ralph DeVitto, for this incredible discussion. To our viewing audience, we hope you found this presentation to be useful and we’ve provided you with practical information that you can discuss with your health care provider. Thank you so much, everyone.

Improving Outcomes for Patients With Brain Metastases

Manmeet Ahluwalia, MD, Cleveland Clinic

The unimaginable happened. While getting ready for work, I leaned forward and felt a lump in my breast. In denial about what I felt, I continued getting ready. But, the memory of my mother-in-law got in my head urging me to do a breast exam. Good thing I did because I was diagnosed with stage II IDC breast cancer a week later.

Ten years after treatment I am doing well. I watched my children graduate high school and college, my eldest daughter marry and the birth of my first grandchild, with the second on the way. When I was faced with this diagnosis, my first thought was, will I be around to share in these milestones. I was scared and anxious about my future and that of my family. My way of coping was to internalize my feelings. And although I shared my diagnosis with my immediate family, not many outside my family knew of my journey or struggles.

One of the things I would definitely tell my newly diagnosed self is you’re not alone on this cancer journey. Be willing to talk to people about what you’re experiencing and feeling, especially with other cancer patients. It doesn’t really matter the type of cancer, the person's age or gender, cancer patients share many of the same fears and concerns. They are able to provide a level of support, understanding and hope based upon shared experiences that doesn’t come from well-intentioned family and friends. Start slowly at first if, like me, you’re introverted and private. I joined an exercise class that brought me together with other cancer patients. In addition to exercising, participants would share experiences and ask questions of each other, like a support group. I listened for several months and eventually felt comfortable sharing my own story. I realized that the more I opened up about my journey, the less scared and anxious I began to feel. Just knowing that others felt some of the same things I was feeling (both physically and mentally) brought me a sense of calmness that I am not sure I would have experienced had I continued on what I referred to as “private battle with cancer”.

Today I volunteer at my local cancer center where I share my story on a regular basis. Doing so brings hope to newly diagnosed patients and continues to be cathartic for me. My local cancer center provides opportunities for patients to participate in many different activities from traditional support groups, mentorships, exercise classes, line dancing, crafting, etc. If it is possible for the patient, I encourage them to get involved in one of these activities at some point during treatment. If this isn’t their cup of tea, I encourage them to strike up conversations in the waiting room or infusion room. Many are surprised by the positive feelings that come from the realization that their mental and physical concerns, in many cases, are shared by others.

My world turned upside down in April 2013 on the anniversary of my mother in laws death from metastatic breast cancer. 

 What Would You Tell Your Newly Diagnosed Self? 

 Jane Annunziata

Six years ago, I was walking through the local Target with my two young boys in tow. We were shopping for a birthday party when I received a call from my little sister. She told me she was waiting for a biopsy result which would tell her whether or not she had breast cancer. I stopped in the middle of the aisle to listen.

She received the news that she had stage 2 breast cancer. We soon found out that both of us were positive for the BRCA2 gene mutation.

Four months later, I received the news that I had stage 2 breast cancer also. It was a blur of a year. We chased each other through treatment. Both of us juggled being moms and running a family of young children. Shortly after receiving her cancer diagnosis, she had found out she was pregnant with her sixth. I have four.

We each agreed and ultimately chose the most aggressive forms of treatment available.

December of that year, I went with my sister to her fourth round of chemo. I remember watching her. I was in awe of her strength. I watched as her port was accessed and her drugs were given with such care. It was a sacred time sitting together in those chairs. We talked about life. Time passed. She finished up with chemo and we walked out to her car. We put on our seatbelts and talked about what was next on the day’s agenda. She had a few errands she needed me to run on the way home. As I went to start the car, I was at a loss of what to do that could ease my little sister’s suffering. 

I reached in my purse in search of anything that might help and remembered the See’s butterscotch lollipop I had been randomly carrying around. I yanked it out of my purse and held it in front of her. She looked at me puzzled. Then a slow smile spread across her face. I watched her as I exclaimed, “You were a good patient!” We both began to laugh at how inadequate the words were to describe the experience. How many times before had we taken our kids to the doctor and after the visit given them a lollipop as a reward for good behavior. With lollipop in hand, I pictured Baymax from the movie “Big Hero 6”. I could hear his voice, “You have been a good boy, have a lollipop!” The treat seemed to fit the bill.

I drove to the nearest post office and told my sister that I’d be right back. As I exited the post office, I looked at the car where my sister was sitting. I saw her reclined in the front seat, bald head, lollipop in hand, smiling and saying “Ohhhhh, this is so good!”

We chased each other through treatment. Each of us took our turn experiencing surgery, chemotherapy, radiation therapy, surgical reconstruction and continued preventative medication. We teased each other over time as lollipops were passed back and forth. The lollipop came to represent bravery. We had been brave.

That bravery continued far longer than expected. My sister’s cancer came back and more treatment was needed, until ultimately, she was out of treatment and her time on this earth came to a close. She passed on her birthday which was the same weekend as my own birthday. That was a little more than a year ago.

It was a hard day this last September as her birthday and one-year anniversary since her passing coincided on the day I sent one of my sons off for a two-year mission for the church. All the tender feelings were there as I missed my sister and grappled with the realization that I was still here on earth able to witness this milestone in my child’s life. 

As I left the hotel that morning, before sending my son off, I walked past the front desk. There sitting on the counter was a dome shaped container full of colorful lollipops. I watched as each of my children took one for the road. My sister was close on this day when I was not only celebrating her but also doing something really hard. I was saying goodbye once again, this time to my son. I smiled and through tearful eyes, took a lollipop.

Later that day, I visited her grave. I remembered all she had been through. The struggles. The laughs. The tears and hugs. I gently placed a lollipop on the fresh cut grass. I thought back on our journey together six years prior. 

As time continues to march on, I try and focus on those lollipops and being brave.

I carry this lollipop of survivorship and honor the life of my sister. She will always be walking this path with me, reminding me that I am strong. I am here. I am alive. As a fellow cancer survivor friend once told me, “Cancer doesn’t count my days, God does.” I live with that hope in my heart every day. To all my fellow cancer survivors out there, you deserve a lollipop, for you are truly brave. We get up each morning, look in the mirror and see in us what might feel impossible. But we do it anyway and move forward in the light of hope and peace.

Stronger Together: The Impact of Cancer

Jenny Bain

Twice I have heard the words, “you have breast cancer.” The first time I was diagnosed, my son was not even two years old. Caught on a regular mammogram at early stage and low grade, it was the most treatable form.

I have a family history and wasn’t surprised by the news. Somehow, I always knew that I would be the one in eight women in the United States diagnosed with the disease.

My treatment was fairly easy, comparatively in the breast cancer realm. Despite experiencing mild side effects on tamoxifen, I was able to focus on raising my son and being present for my husband, four older bonus kids and two very needy dogs.

Then, my world was completely rocked four years later. I did not have a recurrence where the original 6mm tumor was. Nope, my other breast decided it was time to be the host for a new primary occurrence.

This diagnosis was stage 1 and slightly more aggressive, it was again the “good breast cancer,” being ER- and PR-positive and HER2-negative.

The first time I heard my pathology labeled, it was a jumble of letters and meant nothing to me. Now more than 10 years later, I know the ins and outs of breast cancer. 

After the second diagnosis, I didn’t mess around and opted for a bilateral mastectomy with reconstruction, along with nipple and decorative tattooing. I also had my ovaries, uterus, fallopian tubes and cervix removed. Bye, bye to all the parts which society believes makes me a woman. Except my hair, I kept that since I was lucky enough to skip chemotherapy. Another win!

Since my cancers love the estrogen in my body, I was directed to take aromatase inhibitors for 10 years. I made it through four years of tamoxifen before, so I hoped these would be a breeze. Female bodies crave estrogen, but for me, it tried to kill me twice by feeding my cancer, so I was onboard for the meds.

The aromatase inhibitors were no joke. Within two weeks, I experienced so many side effects — joint pain, weight gain, insomnia, loss of libido, hot flashes and so on. I spoke to my oncologist about how everything hurt and how emotionally drained I was, so I tried different aromatase inhibitors to see if I would tolerate them better, but sadly that was not the case. 

As the years went on, I would occasionally take a month off the drugs for my sanity, but because I was well short of the recommended 10-year mark, I stayed on the meds and dealt with the side effects. My quality of life was poor to say the least, which led to depression, anxiety and general snarkiness.

As I hit the five-year mark of being on the aromatase inhibitors, I cannot express how bad I felt. Getting up the stairs in my two-story home was a challenge; I was literally pulling myself up by the banister because everything hurt so badly. I would have hot flashes, which would fog up my glasses, and have beads of sweat running down my entire body. My dogs forgot what a nice walk was like, and my Peloton sat gathering dust.

Then I saw an Instagram ad for the Breast Cancer Index test. Backed by studies and endorsed in multiple oncology guidelines, my research told me the test could provide insight on how likely I was to benefit from anti-estrogen therapy for another five years. I met with the physician assistant at my oncologist and was literally such a hot mess that I could not get a sentence out without a river of tears. I was desperate for my life back. Thankfully, she listened to what I was experiencing and ordered the test since I met the criteria.

When I received my results, it was as if I had won the lottery. I wasn’t likely to benefit from continuing the aromatase inhibitors. I consulted with my oncologist who said that with the poor quality of life plus my results, I could stop taking the meds. Hallelujah. 

I have now been off aromatase inhibitors for four months and feel like a whole new woman! I can exercise and walk my dogs again. I don’t make funny noises due to pain when I move. My family and I started kayaking this summer, and I love it! I am back on the Peloton leaderboard! Sleep is no longer a problem, and my hot flashes are down to a minimum. Everyone around me can tell how much better I feel by the smile on my face instead of the grimace of the past.

I now spend my time working at a nonprofit that supports women with breast cancer and host a weekly podcast. I’m so grateful for the Breast Cancer Index test. It has truly given me my life back, and I can’t wait to spread the word to every woman who could benefit from it.

This post was written and submitted by Michelle Beck. The article reflects the views of Michelle Beck and not of CURE®. This is also not supposed to be intended as medical advice.

I experienced two separate breast cancer diagnoses, and the aromatase inhibitors I was prescribed drastically decreased my quality of life. Then, I found a way out.  

Taking My Life Back After Two Bouts of Breast Cancer

Michelle Beck

We are going to move to the last piece here: thinking about how we can do better overall. Tim and Jamie, overall, what do you think? I know you think that we do great, but think about the overall world of cancer we live in. What do you think oncologists and the oncology team can improve in terms of managing patients, in terms of education, and in terms of treatment care? There are also a lot of financial implications, and we have not touched upon those. There is a whole hour that we could spend talking about that effect. Then, of course, how do we make sure that we end up meeting your needs? Any high-level thoughts about this?

It is all those things you just touched on. You worry about it. You always hear the scary stories of people who have exhausted their life savings to live two months longer, so that is something definite that we decided. I could have kept working, but my goal was to retire at age 55, so I stayed true to that. Keeping Jamie’s job and the insurance takes a bit of the burden off me as far as getting to the right providers. I did not have to change. We have gone through three insurance companies, and we have been able to stay with the same providers. That has helped a lot for consistency and everything.

You bring up a great question overall. Yes, we feel fortunate to have fallen into your hands, Dr. Bekaii-Saab, and Kelley’s, and that is great care. Looking more holistically, that is an important question. As great a job as you guys do, sometimes the pieces are not all connected. You guys do a great job, but then I get a bill from an insurance company saying that they are not going to pay for something. Sometimes it feels like the left hand does not talk to the right hand, and I have to fight with an insurance company. I have to get the paperwork that they need because they do not understand that a medication is not indicated for this, but it is still used that way in the oncology world. All those little pieces, sometimes from a holistic perspective, are out there floating around. I do not know what the answer is, but it feels overwhelming to try to keep all the pieces together. I often think about even older patients who might not have the ability to pull all those pieces together. How do they manage with all this? We are fortunate that we are in the field we are and that we have the resources we have. Even with all that, it can be overwhelming to fight with an insurance company or to try to get documentation when you just did that last month. Those are the pieces that, as a society, we could do better at.

Absolutely. Reese, what about financial resources or directing patients to financial resources and navigating that? In addition to having a diagnosis of cancer and having to fight through that, you now have to worry about the finances and financial support as well as fighting insurers and filing for bankruptcy for some patients. There are a lot more tragedies than the eye can see. What tools are you able to use to help with this, or what tools may be needed in your viewpoint—if they are not out there—to educate folks more?

 Fight CRC [colorectal cancer] does not provide financial support directly, and we generally point to our partners at Triage Cancer who are in tune with the legal battles patients and their families may face as well as insurance issues and finances. We have an established relationship with them, and we will do webinars every year or so to update our community on the different things that they might need to know. I would say that, even though we do not provide the financial support or necessarily the legal advice directly, we work with others to do so. From an oncological and a medical perspective, staying abreast of what advocacy organizations do and what types of resources they offer is extremely important to be able to point patients to the resources that exist, because there is a lot out there. Sometimes, it is not necessarily projected as much as it could be, but there are resources out there that are available, and advocacy organizations know about them and are able to point patients and their loved ones to those resources.

Kelley, you help oversee, manage and ensure that the patients are navigated safely through their journey, and it takes a big team. You have the pharmacist and the nurse working with you and others as well. If you have to give guidance or give advice to other health care providers, patients or caregivers about the model that—from your viewpoint—facilitates this level of care the most, what would you say to your peers?

You have to have a conversation with your patients regularly about what they need. A lot of times, patients do not want to bother us with stuff: “I am having this thing, but I did not want to tell you because I know you are busy.” We have to listen to what our patients are telling us, and we have to educate them about letting us know what they need. We at the Mayo Clinic are pretty fortunate in that we have a lot of resources that other facilities may not necessarily have. We have social workers who are fantastic, and we have pharmacists who are brilliant. If a family member, patient or colleague outside oncology recognizes something that is happening, all they have to do is let us know. We may not have the answer for it, but we may be able to do something to make things better.

We are certainly blessed to have that level of support for our patients. There are a lot of folks who work in the background: the finance person, the nurse, the technician, the pharmacist, the nurse practitioner, the physicians, from the chemotherapy nurse to the nurse who is focused on education, the navigator. It is a big team. The complexities of the system around how we care for our patients is immense, and we certainly hope to continue improving things with the support of organizations and advocacy groups with Reese’s work. Of course, we do all this for our patients, for you, Tim, and certainly for their families, Jamie and their son.

With that, I am going to thank all of you for this wonderful exchange. It was very educational, and it is great to be able to have this discussion with all of you. Thank you.

Improving Colorectal Cancer Management

Tanios S. Bekaii-Saab, MD, FACP, Mayo Clinic

No doubt about it: A breast cancer diagnosis can be devastating. Thankfully, breast cancer treatment has advanced. Many women are living longer and with greater quality of life and we are seeing higher cure rates than ever before.

But when the focus is on survival, sometimes the last thing on a patient’s mind after undergoing surgery are cosmetic outcomes.

As providers, it is crucial that we approach cancer treat- ment with the whole patient in mind. Equally important, treatments for both body and mind are essential to a patient’s recovery and restoration of self.

Even after cancer treatment and surgical intervention, patients are left with the scars of their past. As a surgeon, if I can somehow better a person’s cancer experience, no task is too big or too small. In fact, scar placement and surgical technique are among the ways I can help keep patients feeling whole. Inside my toolbox are “Hidden Scar” techniques, specialized oncoplastic techniques performed with the hope of minimizing scar visibility and saving the natural breast shape when possible.

There are several reasons, however, why removal of the entire breast — or mastectomy surgery — may be recommended for the treatment and eradication of breast cancer disease. 

Why? Maybe a patient’s tumor is so sizable that the only way to surgically remove it is to remove the breast itself. Maybe a patient’s genetic mutation places her at such a high risk of getting another breast cancer that we perform mastectomy surgery for preventive reasons. Or maybe a patient decides to remove the majority of breast tissue for peace of mind; they no longer want annual mammograms or MRIs for screening surveillance because they know they will be a giant ball of nerves every time they need to get a screening study, and the thought of having an emotional roller coaster is just too much. 

Each of these reasons is equally valid and important and each shows why the decision to have mastectomy surgery is personal and possibly very complicated.

What happens once a breast gets surgically removed? Generally, there are two options. Surgeons can close the incision and skin over the chest wall, which is now lovingly referred to as “going flat,” or we can rebuild a new breast for patients, commonly referred to as breast reconstruction. 

The latter option is often a very personal decision, but a point I emphasize with my patients is choice. The cancer treatment journey is theirs and so are the decisions they make along the way. This is where empowerment begins.

For some patients, having a breast mound is part of how they identify as women. When they choose to rebuild the breast after mastectomy, either by using an implant (a foreign body) or by using their own tissue from various parts of the body, we recreate a breast shape 

Performing breast reconstruction involves an additional surgery following mastectomy surgery, which can easily double time in the operating room. The truth is, breast reconstruction may involve multiple surgeries in a stepwise fashion to obtain the desired result. Depending on the patient, the reconstruction portion of the cancer surgery can introduce prolonged healing and recovery times, an increased risk for surgical complications, and additional procedures or surgeries in the future, especially if chemotherapy or radiation is part of treatment.

Alternatively, some women opt for a path that likely takes on less risk, which can mean fewer post-surgical complications (both early on and in the future) and a potential for shorter recovery time. 

Sometimes the adage “less is more” holds true. Eliminating breast reconstructive surgery and “going flat” can be a way women minimize risk and complications while getting back to activities they love faster.

Here’s my take-home message for my patients who choose not to have reconstruction: Going flat does not equate to going without. In fact, once healed from surgery, patients can get fitted for a prosthetic insert and bra from a specialized breast cancer store that offers personalized fittings. These garments, often covered by insurance because of medical necessity, allow women a nice and natural breast shape under clothing without anyone knowing the difference.


To the women who rock a flat physique after mastectomy: Yes, you are beautiful, too!


When it comes to breast cancer surgery, there are no wrong decisions — only personal decisions. After surgery, scarring is inevitable as a natural part of rebuilding and healing. Scarring can sometimes take on a negative meaning, but what if scars could be a beautiful thing?

Through my lens, breast cancer surgery underscores a woman’s strength, courage and tenacity to face the odds. So let’s change the narrative together and respect personal choice.

Dr. Carolyn Bhakta is a breast surgical oncologist and oncoplastic breast surgeon at Cancer Treatment Centers of America in Chicago.

After undergoing a mastectomy, women can either proceed with reconstruction or "go flat," but one expert says that the correct decision is what’s best for the patient. 

Reframing the Discussion for Surgical Options after Breast Cancer — Women are Choosing to ‘Go Flat’

Dr. Carolyn Bhakta

For more than seven years, 58-year- old Cindy Brown of Trabuco Canyon, California, had tried numerous therapies for multiple myeloma, but her disease had always relapsed.

Then, in March 2020, her oncologist at the City of Hope Comprehensive Cancer Center in Los Angeles asked her to consider joining a clinical trial evaluating Tecvayli (teclistamab-cqyv), an immunotherapy drug that is a human bispecific monoclonal antibody, or bispecific T-cell engager, a highly specialized molecule that, by binding to two different proteins, focuses the immune system on two distinct targets to attack the cancer. 

 by binding to both a receptor called CD3 on the surface of T cells and a protein expressed specifically on multiple myeloma cells called the B-cell maturation antigen (BCMA). Brown has been in remission since she started taking the drug.

“It’s been remarkable for me in terms of success. It’s super well-tolerated,” Brown says. “If you met me and didn’t know who I was, you would have no idea I was sick.”

Bispecific antibodies are a type of immunotherapy designed to bring two cells or proteins on a cell together, since proximity helps initiate the immune cascade. Using therapies that specifically recognize a target signal such as myeloma-specific BCMA and act only on those cells “is a much more specific way of targeting the bad cells we’re trying to get rid of, as opposed to therapy that can attack a lot of different types of cells and then cause side effects,” says Dr. Nisha Joseph, an oncologist at Emory Winship Cancer Institute and an assistant professor of hematology and medical oncology at Emory University School of Medicine in Atlanta. “It’s almost like a homing device.”

Only a few such therapies have been approved by the Food and Drug Administration (FDA), generally as fourth-line therapy after other treatments have not worked, and more are in clinical trials. However, study results have been impressive, according to Dr. Krina Patel.

“Heavily pretreated patients who otherwise would have probably not done very well, and [with whom] we would have discussed hospice, are now living longer using these therapies,” says Patel, an associate professor in the department of lymphoma and myeloma at The University of Texas MD Anderson Cancer Center in Houston. “We’re improving overall survival [the time a patient lives following treatment] with these therapies, which is pretty phenomenal.”

Over the past decade, the FDA has approved treatments for multiple myeloma that have had a response rate (patients whose disease responded partially or completely to treatment) varying between 23% and 30%, adds Dr. Joshua Richter, director of multiple myeloma at the Blavatnik Family Chelsea Medical Center at Mount Sinai and an associate professor of medicine at the Tisch Cancer Institute in New York.

“Now you look at these drugs being used, and the bispecifics are getting 60% to 80% response rates, and some CAR-T (chimeric antigen receptor-T cell therapy treatments) are pushing 90% to 100%. It’s a whole different ballgame,” Richter says.

Take Brown’s case: She first received a diagnosis of multiple myeloma at age 48 after having debilitating leg and hip pain for months. She underwent a chemotherapy regimen of Revlimid (lenalidomide), Velcade (bortezomib) and dexamethasone.

During a three-week break from treatment leading into a planned stem cell transplant, Brown had a nearly complete relapse and had to be admitted to the hospital for three rounds of another seven-drug regimen. At that point, doctors recommended she undergo an allogeneic and autologous stem cell transplant. She had her own bone marrow cells collected and returned to her and also received cells from a donor. The donor cell transplant sent her into heart failure a month later, and she almost died. Finally, she recovered and was in remission for two years.

Brown tried three other therapies before needing radiation treatments because the cancer wasn’t responding. After a short remission, the cancer returned in her arm. As a result, Brown needed surgery to implant a rod from her elbow to her shoulder.

Through the clinical trial, Brown initially received injections of Tecvayli every week for a year, then every other week. She is now receiving injections every four weeks.

“I have not had a detectable cancer marker since I started,” she says.

The FDA approved Tecvayli in 2022 as the first bispecific antibody for use in multiple myeloma.

, a BCMA-CD3-directed bispecific antibody immunotherapy, was approved by the FDA in August 2023 to treat adults with relapsed or refractory multiple myeloma who previously received four or more lines of therapy.

The approval was based on findings from the phase 2 MagnetisMM-3 trial. Among patients who had received four or more prior lines of therapy, the overall response rate (ORR, percentage of patients with complete or partial response to therapy) was 58%, with an estimated 82% of patients maintaining that response for at least nine months.

Among patients whose prior treatment included a BCMA-directed therapy, the ORR was 33%, and 84% of these patients maintained their response to treatment for at least nine months, according to the study findings.

Other anti-BCMA therapies being used for multiple myeloma include the following:

 ADCs contain an antibody that targets BCMA, a chemotherapy agent and a protein that links them together. They work by attaching to cancer cells and delivering chemotherapy directly to those cells. Blenrep (belantamab mafodotin) has been approved by the FDA; it is administered as an intravenous infusion.

: With this option, immune system T cells first are removed from a patient’s blood, and then they are genetically engineered in a commercial laboratory to express a receptor that binds to BCMA. Millions of these CAR-T cells are grown in the laboratory and then infused back into the patient, where they populate the marrow and can stay in the circulation long term, seeking out and destroying cancer cells. CAR-T cell therapy is a one-time therapy, whereas the others require treatments every one to three weeks.

Two therapies approved by the FDA for the treatment of multiple myeloma, 

, are among the CAR-T cell therapies that the agency has requested come with a warning following reports of T-cell malignancies, including CAR-T positive lymphoma, among patients who had been treated with that class of drug, it was reported in January.

Trena Robertson, 51, of Baton Rouge, Louisiana, also has achieved lasting remission with a BCMA- targeted treatment — in her case, CAR-T cell therapy.

Robertson received a diagnosis of multiple myeloma in 2018 after experiencing body pain and having malignant plasma (antibody-producing) cells in more than 90% of her bone marrow.

She first underwent chemotherapy treatments recommended by a local oncologist and then a stem cell transplant at The University of Texas MD Anderson Cancer Center.

She was doing well but started relapsing six months later. By then, Patel, her oncologist, recommended that Robertson enroll in a clinical trial for CAR-T cell therapy as her second line of treatment.

In 2019, Robertson relocated to Houston to start the protocol. She received some injections and had to undergo three rounds of advanced chemotherapy. She made it through the first two rounds but was sick with a fever the first day of the third round. Instead, she ended up in the emergency department in need of a blood transfusion, which meant she had to restart the protocol and chemotherapy a month later.

Later that year, Robertson received treatment with CAR-T cell therapy. She returned home and eventually went back to work as a clinical coordinator for a speech pathology and audiology program at Southern University.

“They told me before the treatment that it was supposed to last anywhere from 18 to 24 months,” she says. “This month makes 47 months that I’ve been in remission. ... I’ve been doing very well.”

Selecting the appropriate treatment for each patient depends partly on availability and access, according to oncologists. Because CAR-T treatment regimens are made specifically for each patient and only two therapies are approved for multiple myeloma, there are limited slots available, and the products take several weeks to manufacture. Patients who are frail or can’t tolerate some of the side effects of bispecifics may be better candidates for ADCs, Patel says.

The side effects of CAR-T cell therapy and bispecifics include cytokine release syndrome (signs of systemic inflammation such as fever, chills and drops in oxygen or blood pressure), which is likely associated with the activation of T cells, says Dr. David Avigan, director of the Beth Israel Deaconess Medical Center Cancer Center and a professor of medicine at Harvard Medical School in Boston.

Other reactions include neurotoxicity, which can cause seizures but usually responds to steroids, or a temporary suppression of blood counts, which can increase the risk of infection. Blenrep, the ADC, can cause ocular side effects such as blurred vision or dry eyes. 

Some patients have expressed fear over the ocular side effects, Joseph says, but they shouldn’t. Studies have shown that with treatment these side effects completely resolve in nearly all patients. Symptoms vary and can be mild.

“Patients can tolerate this drug and have quality of life. That’s important because sometimes I feel like I have to convince someone to take it, where the other option is hospice care,” Joseph says.

When Brown started the trial, she spent just under two weeks in the hospital with cytokine release syndrome and says she had increased pain in the areas of her body that had active myeloma at the time.


“But after probably four treatments, I didn’t get that anymore,” she says. “Occasionally at the injection site, I get a little rash that itches for a couple of days. But that’s sort of sporadic. It’s very well tolerated. ... I get the shot and I leave.”

She receives monthly infusions of intravenous immunoglobulin proteins to help fight infections, has laboratory tests every two weeks and has a PET scan every three months. She has some mild symptoms akin to an upper respiratory infection and says she feels a little tired but overall is doing well.

Robertson experienced a fever within the first 24 hours of receiving her CAR-T cell therapy. “They said that was good because it meant the treatment was doing what it was supposed to be doing,” she says.

She has since been monitored with blood and urine testing, as well as periodic PET scans and bone marrow biopsies.

Some questions remain about the use of anti-BCMA therapies. Could the therapies be used earlier on? Can these therapies be administered one after the other if needed, such as giving a bispecific after CAR-T cell therapy? The predominant thought is that T cells could be exhausted after their first round of therapy, but data published by Richter’s group demonstrated that may not be the case. Some patients who received CAR-T cell therapy or a bispecific, and then received another T-cell engager as their next line of therapy, did better than patients who received other types of therapies as the next line.

“It turns out you can reinvigorate and reactivate those T cells sequentially,” Richter says.

Other concerns are whether myeloma cells will adapt and shut off the expression of BCMA to evade therapy, as well as how best to manage infections and alert doctors regarding symptoms to watch.

Much of the science is focused on trying to understand the mechanisms of resistance and how to get around them, Avigan says, as well as how to prevent cells such as CAR-T cells from being rejected. Similar to how oncologists initially used chemotherapy to simultaneously give different drugs that work in different ways, combination immunotherapies may emerge to help avoid pathways of resistance by targeting different pieces of the immune system, Avigan says.

The BCMA protein has become the primary target for treating multiple myeloma, resulting in longer survival and more manageable side effects.

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