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

Kelley Rone, APRN, DNP, Mayo Clinic

‘Twas the week of the first holiday and all over town

Families and friends were coming, to see who else was around

How has life changed we ask when thinking of them

Well nothing is the same, but in some ways, it’s better than then

It is so nice to have our close ones around

Even when with our treatments we still abound

I am getting a shot on Monday, an appointment and acupuncture this week

But even those events, won’t turn this week bleak

On Thanksgiving, a lot of people like to play the “What are you thankful for?” game

And despite my spontaneousness, I will still try to frame

What I am thankful for despite all that I’ve been through

I am thankful for life, my friends and family, the world and all of you

Will I eat a bunch? Sure, it’s just what you do

But I will try to eat as healthy as I am able to

Lots of veggies and fruit, and some proteins also

And I am eating that all to feel better and not for all show

Dealing with difficult stuff has given me my share

Of things to think about, that much I know

But because of all of those things, I am happy with how I grow

I’m more open, and honest, and engaged and grateful

I’m more happy, self-aware, appreciative and not hateful

My mind is doing great, and luckily my body follows

But even when it doesn’t, I never feel hollow

I’ve found my purpose in trying to help others

Mattering is important, maybe the most if I had my druthers

So, what will I end with for you, the fair reader?

Be appreciative, realize what you have and in the emotion be a leader

So have a great time with those close ones around

And never forget, you are here which might astound

We are stronger than we realize, of that I am sure

And the holidays and close peeps can always help cure

Whatever your feeling, whether it's low or it’s high

There is nothing that can’t be cured by a great piece of pie

Let’s not let our cancers ruin what we do

If we have to step back, you can take smaller steps and still enjoy

And even if you can’t have dairy, can you still have soy?

But have a great time throughout this holiday season

And never let your illness, be the overarching reason

That you can’t enjoy family, friends and the rest

And let’s make this holiday season feel like the best

There will be plenty more holidays, I hope for you all

So have a great night and give someone a call.

Yes, we have stuff and we all deal with cancer

But maybe a happy holiday season can be part of the answer.

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

subscribe to CURE®’s newsletters here.

The narrative reflects on the transformative impact of cancer on personal life, emphasizing gratitude, self-awareness, and the importance of relationships during the holiday season. Despite ongoing treatments, the author finds joy in the presence of loved ones and the ability to help others. The message encourages embracing life, appreciating what one has, and finding happiness in small moments, even amidst health challenges. The holiday season is portrayed as a time for reflection, connection, and healing, with a reminder to not let illness overshadow the joy of family and festivities.

The holiday season is here, so here’s a festive poem to remind us that cancer should not control us during this time.  

A Holiday Poem: Who Says Cancer Doesn’t Rhyme? 

Burt Rosen

Experts on cervical cancer offer provide comprehensive insights on the challenges patients experience and discuss ways to improve care.

Cervical Cancer: Insight into the Patient Experience

Linda Ryan

A little over two decades ago, a growth was found on my left thigh. After several visits to different doctors, and over six months, I found out I was a young college student at California State University, Bakersfield with epithelial sarcoma.

Surgery after surgery, chemo sessions and radiation, I thought I was done. Tired, throwing up, going bald and beyond thin for my frame, I kept pushing forward and I was determined to beat it.

I went into remission for almost a year, then was sick again. This time, it was worse. Again, I went through the same routine, only this time there were multiple trips to UCLA Medical Center.

Then they broke the news to me: I had cancer again. This time it was more severe.

I was told that the average survival rate was 15% for liver sarcoma at the time, and if I did survive, there was a good chance I would have permanent immune issues, constant chronic fatigue and would be unlikely to have children — that was just a few of the treatment impacts that were stated.

I had a year of college left. I was in my 20s with so much ahead of me. Was I just going to give up? The first fight was harsh enough and I struggled through it. I was told this would be more aggressive treatment, but that was ultimately my decision, since survival rates at the time were minimal.

Was I just going to be comfortable and slowly wither away? Or was I going to gamble and fight? After discussing my choice with family members, again, I moved forward with the mentality of, "What have I got to lose?" I'm stubborn enough. I got this.

Not only did my physical health suffer, but my mental health was also shook. I questioned everything— my existence, my faith, my purpose, family and friends. I was angry to the point where people (related and non-related) cut me off if I didn't cut them off first.

I fell into a severe depression; I was beyond tired and just wanted to die. I constantly felt alone, even though people were around me because they couldn't understand the pain I was feeling.

I was sick of hearing, "You'll be fine" or "You'll figure it out; you always do." This was f****** cancer, not the flu!

I felt abandoned, isolated, frustrated and angry.

I also hated taking pictures with those who wanted a token just in case I didn't make it. Man, I'm so glad social media didn't exist yet! I was already at my worst. Why would I want to document it?! So they had something to show at a funeral?! Or show it to others so they could feel good and say, "See? I was there for her." I refused it all.

I suppressed a lot of emotions and decided it was time to just take care of me. I was the patient. I was already exhausted and shouldn't have to justify the path I chose and what I was going through, while also trying to console those who were trying to "be there" for me.

I completed treatments, pushed through recovery and kept moving forward.

This year, 19 years from my original date of remission on March 3, 2003, I'm still here. I have a degree, a career I've worked hard for, I'm married, and have amazing children.

I still have personal, emotional, mental and physical battles, but I also see the world in a different light. My expectations of people always seem to be high, so much so that I fight disappointment regularly because I tend to forget most people take things for granted that I don't because I've lived a different path.

I have my peace for the most part; my health is decent as I still follow up with all the maintenance appointments and my faith is still strong. I have been a volunteer for my local county cancer foundation — especially as a voice of a survivor — because I want other survivors to know we’re never alone in our journey.

When I was a patient, especially since I was a young adult, I had no one to talk with who could relate to what was happening. A little over nine years ago, I was approached to attend a survivor meeting after a follow-up doctor’s appointment, to meet and talk with patients and survivors and share my story.

The first meeting I attended made an emotional impact not only on me, but also on those who were shy, ashamed, scared or angry to share their voice and experience. Now I’m an active volunteer committee member for events, raising money to help local patients with cancer and an active survivor voice when needed.

My attitude, personality and outlook on life spills over into everything I do, and I always hope the positive vibes shine through and inspire others.

As Walt Disney said, "Keep moving forward."

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

I went through two grueling bouts of cancer when I was a young adult, which drastically shaped my life. 

Going Through Cancer as a Young Adult Shaped My Outlook on Life

Melody Saberon Ybarra is a survivor of epithelial sarcoma and liver sarcoma.

Melody Saberon Ybarra

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

Raymond Sawaya, MD, MD Anderson Cancer Center

The panel concludes its discussion with insights on challenges and unmet needs in the CML treatment landscape, highlighting ways to better support patients and caregivers.

Advancing CML Management Towards an Ideal Patient Journey

This program was made possible with support from Novartis Pharmaceuticals.

Video content above is prompted by the following:

What are the biggest unmet needs you see for CML patients today, and how do you think emerging therapies and research could address those gaps in the future?

What excites you most about the potential advancements in CML management that may be on the horizon in the next 5-10 years?

How do you envision the CML patient experience being transformed compared to today?

Claire Saxton

Rashid K. Sayyid, MD, MSc, discusses the role of combination therapy in metastatic castrate-resistant prostate cancer.

The Role of Combination Therapy in mCRPC

This is a synopsis of an Educated Patient Sound Bites series featuring Alicia Morgans, MD, MPH, of Dana-Farber Cancer Institute; Rashid K. Sayyid, MD, MSc, of the University of Toronto; and Reginald Tucker-Seeley, MA, ScM, ScD, of ZERO Prostate Cancer.

Dr Rashid K. Sayyid discusses PARP inhibitors like olaparib and rucaparib in combination with other therapies. For example, enzalutamide-olaparib was approved based on TRITON3 for certain mutations, while olaparib-abiraterone was approved first-line for 

-mutated cancer per PROPEL. He explains PARP inhibitors may radiosensitize, improving radium Ra 223 dichloride efficacy.

The ongoing COMRADE phase 1/2 trial established olaparib-radium dosing in phase 1 and showed 6-month 57% radiographic progression-free survival and 56% 1-year overall survival. Phase 2 is now examining olaparib-radium efficacy for radiographic progression-free survival with 213 patients. Upcoming results over next few years.

In summary, Dr. Sayyid overviews emerging prostate cancer approaches, including PARP inhibitor combinations with antiandrogens like enzalutamide or abiraterone for certain mutations, as well as combinations with radium Ra 223 dichloride now under phase 2 investigation.

*Video synopsis is AI-generated and reviewed by CURE editorial staff.

Rashid K. Sayyid, MD, MSc

Recently, the American Lung Association released the 2025 “State of the Air” report, which shows that more people in more places across the United States are experiencing unhealthy levels of air pollution. This report comes out at a time when the U.S. Environmental Protection Agency (EPA) is making plans to roll back critical healthy air rules and granting pollution exemptions to power plants.

I am an oncologist and chair of the Steering Committee for Oncologists United for Climate and Health, and I can tell you that dismantling the EPA will result in more people hearing that they are diagnosed with cancer.

You may think that EPA cuts might not impact you, but they will. EPA is responsible for ensuring we all have clean air to breathe (and clean water to drink, among other critical things). These cuts will not only cause asthma, heart disease, etc., but will also increase the number of people who get cancer, and affect their outcomes and care.

There are a few stories that have remained with me throughout my career. I recall a young mother who had never smoked yet was diagnosed with non-small cell lung cancer at age 35. She was a physician, a mother of two, and a long-distance runner, and died of metastatic lung cancer about two years after her diagnosis. I remember another patient lung cancer– a 32-year-old emergency room nurse with no risk factors, raising two teenage daughters. She was divorced, and desperately worried about what would happen to her daughters when she was gone. Both women were “lucky” in that they survived long enough to see their children graduate high school, but they should have had decades left with their kids.

While we will never know why these two particular women developed lung cancer, we do know that the incidence of lung cancer in women who never smoked is on the rise. Lung cancer is the leading cause of death in the United States, responsible for about 125,00 deaths each year. accounting for nearly one quarter of annual cancer deaths in the country. Even with the many newer, more effective treatments that have recently become available, the five-year survival rate of patients diagnosed with metastatic lung disease is only 6%. Most people know that smoking tobacco is the number one risk factor for lung cancer, but many people are unaware of the environmental factors that can contribute to lung cancer — such as air pollution. 

Air pollution is a Class 1 carcinogen, as rated by the International Agency for Research on Cancer (IARC), and one cancer we know for certain that it causes is lung cancer. Air pollution is responsible for about 14% of all lung cancer deaths worldwide and it can significantly affect the prognosis and treatment of lung cancer patients. It contains very small particles which are particularly dangerous and are widespread. These microscopic particles come from the burning of fossil fuels in factories, power plants, and diesel and gasoline-powered motor vehicles, as well as wildfires, which are becoming more frequent and intense as a result of our changing climate. Unfortunately, we are seeing the direct impacts of climate change in the recent devastating wildfires in Los Angeles, the Canadian wildfire smoke that impacted much of the Midwest and East Coast in 2023, the Maui wildfires later that summer, and too many others.

EPA rules passed in the last four years, including tighter national limits on this pollutant and rules to clean up emissions from cars and trucks, aimed to reduce particle pollution, but these rules are now at risk of being rolled back. I urge everyone to stand up and call on Congress to protect these critical clean air programs and staff.

I think back to my two patients who died too young from lung cancer. We must do more. The bottom line is that if the programs, expert staff and funding for the EPA are eliminated, there will be more air pollution and more cancer. We can — and must — prevent more needless deaths from lung cancer.

The American Lung Association's 2025 "State of the Air" report highlights increasing air pollution levels in the U.S., coinciding with potential EPA regulatory rollbacks. These changes could exacerbate health issues, including cancer. Air pollution, a Class 1 carcinogen, significantly contributes to lung cancer, responsible for 14% of global lung cancer deaths. The EPA's recent regulations aimed to reduce pollution, but their potential rollback threatens public health. Advocacy for maintaining EPA programs is crucial to prevent increased cancer incidence and mortality, particularly from lung cancer.

Recently, the American Lung Association released the 2025 “State of the Air” report.

EPA Deregulation Means More Air Pollution and More Cancer Deaths

Joan H. Schiller, MD, is the chair of the Steering Committee for Oncology Advocates United for Climate and Health – International.

Dr. Joan H. Schiller

As a couple, we have been dealing with cancer for nearly 30 years. When Andrew was diagnosed with chronic lymphocytic leukemia (CLL) years ago, we had two small children, were running a growing patient education business, and we were terrified. At that time, we had no understanding of the difference between cancer was acute or chronic. We also had no knowledge of significant subtypes within a cancer diagnosis. There was a lot to learn. We needed to find information and communities to help us navigate our cancer journey.

Thanks to a computer-savvy neighbor (remember, this was 1996), we connected online with a long-time CLL survivor, "Granny Barb" Lackritz, who told us to "chill out!" and directed us to a major center of research and treatment that led Andrew to a phase 2 clinical trial and a 17-year remission.

We met other people in Seattle and online who were dealing with cancer too. As the years went by we came to understand the immense value of community — finding support among others facing the same fears, the same need to find answers, the same deep-seated longing for the best quality of life and more effective options for managing "chronic" cancer if a cure is not yet on the horizon.

Retreatment with a newer drug and now ongoing oral treatment for a second cancer allow us to live a full, active, and grateful life together.

Our big realization? Participating in research and helping provide funding is key to survival!

As cancer advocates and journalists, we also know that without ongoing, collaborative research, the hope for "What's Next?" would not be forthcoming. Now, with Andrew’s myelofibrosis progressing, what’s next could add years to his life.

We moved to San Diego almost 10 years ago to be close to the researchers and treatment experts for the two blood cancers we are dealing with. hat is a blessing. Then we found out that locally based Curebound, founded by a cancer survivor and his family, focuses on raising money to fund early-stage cancer research and it requires collaboration on research across academic institutions. This is where the pipeline of cancer treatment options begins and has been the start of a hopeful path for us.

With all the research advances, early studies can make a difference for patients across cancer subtypes. One recent example is a research team that was awarded a $200,000 Curebound grant at the San Diego School of Medicine, in California, in 2021. Led by Doctors. J. Silvio Gutkind, Joseph Califano, and Ezra Cohen, the goal was to investigate if initiating immunotherapy treatments before surgery may offer a next-generation treatment for head and neck cancer patients. Three years later, the research team has advanced the understanding of immunotherapy resistance, has been published in Cancer Cell and Nature Communications, received an additional $9.6 million in follow-on funding from the National Institutes of Health,and launched a multi-location clinical trial. Moreover, their research could lead to important discoveries about immunotherapy that could have broad impact on treatments for other types of cancers. All because a community came together and donated funds for cancer research.

We also appreciate that Curebound — the organization and its growing base of support — raises awareness within the general public of the need for funding early-stage cancer research. We have participated in major fundraising events and educational programs open to the public that are engaging not just for cancer patients, but for other communities touched by cancer who want to help.

Along with our devotion to the work Curebound does, we are working with college students who want to enter health-related fields by lecturing about ways to reach cancer communities through various communication channels and techniques. We emphasize the need for education about the importance of clinical trial participation and support of research. In addition, we sit on a variety of committees — driven by California State initiatives, pharmaceutical companies and regional medical research programs to bring the patient and care partner voices to the efforts.

For anyone dealing with a cancer diagnosis, we recommend taking a deep breath, learning more about your specific type of cancer — today there are fewer types of cancer where medicine has not yet figured out how to stall progression — and find your community to live your best life.

Having “chilled out!” and survived since that scary day in 1996 when Andrew was diagnosed, the communities we’ve found have become a wonderful channel for us to make a difference for others and certainly for ourselves.

Navigating a cancer diagnosis for nearly three decades, the couple emphasizes the importance of community, research, and education in managing chronic cancer. Their journey began with a CLL diagnosis, leading to a 17-year remission through a clinical trial. They highlight the role of organizations like Curebound in funding early-stage research, which has led to significant advancements in cancer treatment. Engaging in advocacy, they stress the need for ongoing research and community support, while also educating future healthcare professionals on the importance of clinical trials and patient involvement.

After nearly 30 years with cancer — community, research and education have helped us find hope, strength and purpose in the face of chronic blood cancers.

“Chillin’ Out” and Finding Our Cancer Community

Esther Schorr

Chemotherapy-induced alopecia, or hair loss, is a common side effect of many chemotherapy treatments for cancer. 

Chemotherapy works by targeting rapidly dividing cells, such as cancer cells. However, hair follicles also divide rapidly and are therefore affected by the treatment. As a result, hair loss can occur anywhere hair grows –– on the scalp, face and body. Not everyone who receives chemo will experience hair loss, but for those who do, it can be distressing.

For many people, hair is an important aspect of self-expression and identity, and losing it can be emotionally difficult. As she recalls her experience with chemotherapy for breast cancer, Lauren Thorse remembers that when she was told she would need chemotherapy, “my first thought was that my hair is gonna go.” 

As someone who reports struggling for years with self-confidence, Thorse, of Naperville, Illinois, found the impending hair loss upsetting. Having always had long blond hair, seeing it fall out in clumps and finding it around the house led her to decide to shave it. With the support of her father, and her mother and sister via FaceTime, her husband shaved her hair off.

After finally coming to terms with losing her hair, she then had to wrap her head around the fact that “it’s going to take years to get back to where it was.”

Cancer survivor Jessica Gardner of Youngstown, Pennsylvania, also took matters into her own hands when she began losing her hair from chemotherapy. After being diagnosed with breast cancer while 33 weeks pregnant and undergoing a bilateral mastectomy not long after having a cesarean section, she felt that she wanted to have control over something — and that was her hair loss. While livestreaming the shaving of her head, she felt as if she was getting some of her power and control back.

Once their hair was gone, both Thorse and Gardner felt frustrated over the lack of resources that were available to women their age, in their early 30s, with young children. They found that many of the resources were for older women and didn’t quite meet them where they were in life. 

Thorse recalls, “I felt like the wigs I was directed to were more for older women.”

Because Gardner found local support groups difficult to connect with, she created the group Cancer Is a Mother on Facebook. She found that this was a way to do something positive with her cancer diagnosis. “It was something I needed to do personally to feel better about cancer and where I was as a survivor.”

Hair loss can be gradual or sudden, and it can begin within a few weeks of starting chemotherapy treatment.

Some patients may experience thinning of the hair, whereas others may experience complete baldness. In some cases, hair may only thin or fall out in certain areas, creating patchy hair loss. This is most often temporary, and the hair will grow back once chemotherapy treatment is completed. 

However, in rare cases, some patients may experience long-term or permanent hair loss. The risk of either of those is generally low, but it can depend on the type and dose of chemotherapy used. Certain chemotherapies, such as taxanes, are associated with a higher risk of long-term or permanent hair loss.

Now that a full year has gone by since completing chemotherapy, Thorse states that although her hair is growing, she doesn’t look like she used to. “Every now and then I do mourn for myself if I do see a picture. It’s been a year, but I still have a long way to go.”

Chemotherapy isn’t the only cancer treatment that can affect hair. Hormone therapy for cancer treatment can target hormones that help cancer cells grow, such as estrogen and progesterone. It can be used to block the production of these hormones, or block the receptors that respond to them, or lower their levels. This changes the balance of hormones in the body and causes hair thinning. This also causes hair follicles to shrink, leading to thinner, weaker hair.

Lisa Opalweski, of Fond du Lac, Wisconsin, has experienced hair loss multiple times during her cancer journey. Initially diagnosed with breast cancer in 2012, she notes, “Yes, I knew I was going to lose my hair; yes, I was going to run around bald for a while. I knew it was going to come back.” 

After being diagnosed with metastatic cancer in 2019, she has been treated with hormonal therapy and targeted therapy. “I used to have extremely thick, curly hair. Now I have baby thin hair.”

temporary solution for hair loss. Many cancer centers and support groups have resources for obtaining wigs or hairpieces at little or no cost. However, there are now ways to help manage hair loss through scalp cooling. Cooling the scalp during chemotherapy treatment decreases blood flow to the scalp and reduces the amount of chemotherapy drugs reaching the hair follicles. By reducing the amount of chemotherapy that reaches the hair follicles, patients experience less hair loss.

According to the results of one study led by Dr. Julie Nangia, a breast oncologist and an assistant professor of medicine at the Lester and Sue Smith Breast Center and Dan L Duncan Comprehensive Cancer Center at Baylor College of Medicine in Houston, women receiving chemotherapy for early-stage breast cancer were enrolled in a study to evaluate the effectiveness of scalp cooling on hair loss. Of those who underwent scalp cooling, 50.5% had some preservation of their hair after four cycles of chemotherapy. In those who did not use scalp cooling, no one experienced hair preservation.

There are currently a couple of ways to cool the scalp. One way is through the use of cold caps, which uses tight-fitting caps placed on the head to cool the scalp during chemo- therapy infusion. The caps are stored in a special freezer and must be changed throughout the infusion to keep the scalp at a sufficiently cold temperature. In order to successfully use the caps, a patient will need to have help to change the caps at the instructed intervals during treatment.

Another method of scalp cooling is through a device that circulates coolant through the cap to keep the scalp at a consistently cool temperature. The hat is placed once at the beginning of treatment and the coolant will continue to keep the temperature consistent. 

According to Dr. Nangia, cooling the scalp starts 30 minutes before chemotherapy and the cap continues to be worn until 30 to 90 minutes after chemotherapy has been completed. 

It is also important to practice good hair care with scalp cooling therapy. This can include using a gentle shampoo, avoiding heat styling tools, and being gentle when combing or brushing the hair.

Dr. Nangia notes that the biggest barrier to scalp cooling is the cost. If insurance does not cover the therapy, out-of-pocket costs can be over $2,000. She states that the National Comprehensive Cancer Network, which provides guidelines for cancer treatment and supportive care, has added scalp cooling to these guidelines as a method to be considered for those who may experience chemotherapy-induced alopecia. 

With this recommendation from the network, Dr. Nangia hopes that insurance companies will start covering the cost of this therapy so more patients can benefit.

The rate of hair regrowth can vary for each patient, but typically hair starts to regrow within a few weeks to a few months after completing chemotherapy treatment. Regrowth may be slow at first, but it should become more rapid over time. It can take several months to a year for hair to fully regrow and regain its previous texture and color. In some cases, hair may not fully regrow or may regrow with a different texture or color.

Chemo curls, also known as “chemo waves,” is a term used to describe the changes in hair texture that some patients experience after chemotherapy. The term refers to the curls, waves or kinks that can develop in the hair as 

it regrows. This can be caused by the chemotherapy treatment and the changes in the hair

structure. It is not exclusive to scalp hair and can occur on hair all over the body. The new hair growth is usually soft and thin at first, and it may take several months for the hair to return to its pre-treatment thickness and texture. 

Some people may experience complete regrowth of their hair, whereas others may have patchy or thin hair growth. It also might take one to two years for hair to appear as it was before chemotherapy, and this can vary from person to person. Overall, hair growth after chemo is a gradual process, and it can take time for hair to fully recover.

Many members of the health care team are involved during cancer treatment. However, one area that is often overlooked and underutilized during this time is dermatology. 

Dr. Adam Friedman, professor and chair of dermatology at George Washington University in Washington, D.C., knows what dermatologists can offer patients experiencing hair loss during cancer treatment, but they are not often a part of the cancer experience.

He suggests prevention of hair loss through scalp cooling may offer the best results if someone is experi- encing complete hair loss, but there are other options for those with thinning hair that may be helpful. Applying topical minoxidil to the scalp can keep the hair in a constant state of growth. Friedman notes that it must be used consistently for best results and can be difficult to apply. 

He cautions against the use of supplements unless they are specifically approved by the health care team. Some supplements, such as biotin, can interfere with some blood tests, and may not
be safe for some patients to use. He also notes that the off-label use of Latisse (bimatoprost) can be helpful for regrowth of eyelashes and eyebrows after chemotherapy.

One of the most important things voiced by cancer survivors is that they want hair loss to be a topic that is brought up and discussed, and not glossed over, during visits. Megan Harman, FNP-C, with SSM Health in Lake St. Louis, understands this. She understands that hair loss can be a harsh reality the patient with cancer has to live with. It can be difficult for patients to fully prepare mentally and emotionally for hair loss until it happens. When talking with patients during this time, she often directs them toward various resources
and allows them the time to voice their feelings about their situation.

It is notable that much of the research about alopecia focuses on breast cancer survivors in comparison with other cancer survivors. One reason is that breast cancer is the most common cancer among women and the second most common cancer overall, so a large number of patients undergo chemotherapy treatment for breast cancer. Additionally, hair loss is a common and highly visible side effect of chemotherapy treatment, and it can have a significant impact on a person’s quality of life. Breast cancer survivors, especially women, tend to be more concerned about hair loss due to chemotherapy as hair loss affects their appearance and self-esteem.

Another reason is that breast cancer research has traditionally been well funded, which has allowed for more research to be conducted on the effects of chemotherapy on hair loss in breast cancer survivors. This has resulted in a greater understanding of the mechanisms behind hair loss and the development of new hair loss prevention and treatment methods specifically tailored for patients with breast cancer.

Many survivors see significant hair changes during cancer treatment, leaving a difficult reminder when they look in the mirror. 

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