LeeAnn Found Meaning in Her Adult Diffuse Intrinsic Pontine Glioma (DIPG) Brain Tumor Diagnosis
When LeeAnn was diagnosed with an adult diffuse intrinsic pontine glioma (DIPG) brain tumor at 44, she was a mom juggling a five-year-old daughter and a newborn son. What started as subtle facial tingling and hard-to-describe vision changes during pregnancy was initially brushed off as a normal part of being in her mid-30s and pregnant, too. Only after she drove herself to a postpartum appointment and realized she was seeing the road through a “kaleidoscope” did her OB-GYN recognize the seriousness of her double vision and urgently refer her to a neurologist. An MRI the day after Christmas revealed a tumor on her brainstem, and suddenly LeeAnn’s world shifted.
Interviewed by: Tory Midkiff
Edited by: Chris Sanchez
The first phone call about the MRI results came from a physician she had never met. It was short, clinical, and transactional, delivered without checking if she was alone, had support, or could write down unfamiliar medical terms. Soon after, an oncologist explained that DIPG is a very rare and aggressive kind of brain tumor that’s usually seen in children. A second-opinion visit at a major cancer center left her feeling even more devastated; the physician told her the tumor would “kill” her and that she might have about five years with treatment. She walked out feeling robbed of a future with her children.
Instead of accepting that timeline, LeeAnn pushed for more information about her brain tumor. She sought out a neurosurgeon experienced in brainstem biopsies, despite being warned about the risks. The biopsy confirmed a grade 2 astrocytoma and a DIPG in her brainstem, and a local tumor board recommended radiation. LeeAnn underwent 36 radiation treatments to her brainstem, and follow-up imaging showed her tumor had shrunk significantly. She then entered observation mode and, eventually, remission with regular MRIs.
Surprisingly, remission was when she struggled the most. LeeAnn describes bitterness and fear as she tried to “re-assimilate” into a life that would never be the same. She focused on what cancer taught her: slowing down, staying present with her kids, writing down life lessons for them, and becoming more compassionate toward other people’s invisible burdens.
Now more than 11 years out from her adult DIPG brain tumor diagnosis, LeeAnn has watched her son grow into an 11-year-old and her now-16-year-old daughter approach high school graduation. She moved from healthcare marketing into higher education marketing, launched her own consulting business, and wrote a book, Finding the Rainbow: The Other Side of a Cancer Journey. Hearing a doctor finally say her prognosis is “unknown” once felt terrifying, but she has come to embrace it as a leveling truth: none of us has an expiration date. For LeeAnn, that “unknown” has become permission to live fully in the present.
Watch LeeAnn’s video above or scroll down to browse the edited transcript of her interview to learn more about her story.
- Subtle symptoms like facial tingling and double vision during pregnancy can signal something serious, and trusting your instincts when things feel “off” can be lifesaving.
- A rare, typically pediatric diagnosis, DIPG does not define a person’s worth or limit their right to advocate for more information, second opinions, and safer treatment options.
- How a diagnosis is delivered matters: patients deserve compassionate communication, time to process, and clear guidance (including when not to Google) rather than rushed, transactional phone calls.
- LeeAnn’s experience shows that remission does not necessarily mean “back to normal”; many people struggle after treatment, as they live with long-term uncertainty, fear, and both visible and invisible scars.
- LeeAnn describes a powerful transformation from asking, “Why did this happen to me?” to asking, “What can this experience teach me?” This was a mindset shift that helped her find meaning, deepen compassion, and rebuild a life that feels more aligned with what makes her come alive.
- Name: LeeAnn T.
- Age at Diagnosis:
- 33
- Diagnosis:
- Brain Tumor (Diffuse Intrinsic Pontine Glioma or DIPG)
- Grading:
- Grade 2
- Symptoms:
- Facial tingling
- Double vision
- Treatment:
- Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- Introduction
- Central Pennsylvania life and work
- My DIPG brain tumor diagnosis while I was pregnant
- Getting a life-changing brain tumor diagnosis by phone
- A rare adult DIPG brain tumor, and a devastating second opinion
- Choosing a brainstem biopsy and radiation for my brain tumor
- Going into remission and the hidden emotional toll
- Finding meaning and gratitude after cancer
- Living with lingering vision changes and invisible scars
- Redefining purpose and what it means to come alive
- Surpassing milestones I thought I would never see
- Embracing an unknown prognosis and focusing on the present
- Life 11 years after my DIPG brain tumor diagnosis
Introduction
I’m LeeAnn. I am 44 years old. In 2014, I was diagnosed with a type of brain tumor called a diffuse intrinsic pontine glioma (DIPG).
Central Pennsylvania life and work
I’m in central Pennsylvania. I lived in Ohio before this.
I work for Penn State. That’s why I live in central Pennsylvania.
My DIPG brain tumor diagnosis while I was pregnant
So my story really begins, I like to say, with my children. At the time this all started, I had a five-year-old daughter, and I was about seven or eight months pregnant with my second child, my son, who is now 11. But toward the end of my pregnancy, I noticed two things were happening. One was that I had a really specific tingling sensation on one side of my face, and it felt like water kind of dripping on the inside. That was unusual. I hadn’t experienced that with my pregnancy with my daughter. So I remember talking to my OB physicians about it, and they said that it could be common in pregnancy. I was considered a late or an older pregnancy because I was in my mid-30s at that point, but they weren’t too concerned about it.
The other thing that I noticed in my second pregnancy, around the same time, was a little bit of a vision change, and I noticed it enough that I went to the eye doctor just to see if anything was changing. It was really hard to describe. It was subtle, but it was noticeable enough that I went to the eye doctor, and that exam showed that everything seemed fine. They said, “If it gets worse, you can come back and see us.”
I hadn’t put the tingling sensation and the vision changes together. For some reason, I just didn’t say anything to my OB-GYN doctors about the vision changes. After I had my son, I remember driving myself to my postpartum checkup with my OB-GYN. As I was driving, it felt like I was looking through a kaleidoscope. It was very strange and concerning, and I hadn’t noticed it until I made the drive to that appointment, because I was at home taking care of my son, who was a newborn, and so I wasn’t driving, and I wasn’t really leaving the house much. Around the house, I was fine, but when I left home and went to that appointment, I noticed that something was really wrong with my vision.
I went to that OB-GYN appointment, and she said to me at the end of the appointment, “Everything looks great. You look good, and it sounds like the baby’s all good.” I said, “Yes, there is this one thing that I’m noticing: my vision seems off; something seems wrong.” She said, “What does it seem like?” I said, “It feels like I’m seeing double.” Her face just kind of fell, and she said, “We need to get you to a neurologist now, because that is not good if you’re seeing double.” That led me to a neurologist later that week, I think it was, and that individual still couldn’t tell what was really going on with me.
He did a physical exam, and everything seemed fine, but he said, “Because of this vision change, you really need to have an MRI.” The day after Christmas that year, I went to have the MRI. I was really thinking that this was nothing, that this was maybe something left over from pregnancy or some weird hormone stuff. But I got a call about an hour after I had the MRI at the hospital, and the neurologist on call told me over the phone that the MRI picked up what looked to be a glioma on my brainstem and that she thought it was very treatable, but that I would need to see an oncologist really quickly. That led me to the oncology appointment the following Monday. That oncologist said, “Based on the MRI, this is a very rare type of brain tumor. It is more often diagnosed in children, and when it is diagnosed in children, it is often a very aggressive tumor. Brain tumors in children are often given, sadly, months or possibly years with treatment to live. DIPG is the name of that tumor.”
Getting a life-changing brain tumor diagnosis by phone
After the MRI, when I had it done, I really wasn’t expecting anything to come back that was serious. I really thought this was just something related to the pregnancy. To have the physician, whom I had never met, call me and give me that news over the phone was very jarring. I tell people now, “If you’re waiting for results after having any type of scan and the phone rings, before that moment happens, really try to brace yourself for any type of news that a physician may tell you over the phone after any type of imaging that you may have done.”
I like to advise people to have someone with them if the phone rings, and they are getting some news. I would advise them to take their time with the phone call, write down any terms that you’re not familiar with, ask them to spell everything for you, and see if you can have someone with you in that moment. Because when I got the phone call, I didn’t have any of those things. I wasn’t expecting to get a call, much less one that was really life-changing news. That physician, in that moment, looking back now, I think there were a million ways that physician could have given me that diagnosis. She could have asked me, “Do you have someone with you? Do you need to sit down? Do you have a piece of paper and a pencil or a pen handy, or a computer that you can type these words down? They’re not going to be familiar to you.”
I wish she had told me to stay off the internet, because the phone call was very short. It was all business. It was, “There seems to be a glioma on your brainstem. I think this is treatable. You are going to need to see an oncologist. I can help you get a referral there. Do you have any questions for me?”
I was really floored by the whole conversation. I didn’t know what a glioma was. I didn’t understand the gravity of that news. I knew it was serious when she said “oncologist.” I knew that word, and I knew that was serious. But I was so stunned at hearing this that it kind of stunned me into silence. Looking back on this, this was a physician whom I had never met, and I never saw that physician after that phone call. That was the only time that the physician had communicated with me. Looking back, there were definitely some things that I think the individual got really wrong with giving that news. I hope other physicians do a better job. I’m sure that they do, but I have to believe that some still see it as very transactional and don’t really think about the impact that could have for someone who’s receiving that news.
A rare adult DIPG brain tumor, and a devastating second opinion
My oncologist told me that this is a very rare type of brain tumor. It’s often diagnosed in children, not adults. He was recommending that I meet with a neurosurgeon locally to get his thoughts on this tumor type. I met with that individual. He agreed that this is very rare and that it’s often diagnosed in children, very rarely in adults. He recommended that I get a second opinion, and he helped me get an appointment at one of the best cancer centers in the world, actually. Maybe a week later, I took the out-of-town trip to go see this state-of-the-art, innovative, best-in-class cancer center.
I have to tell you that when I went for that second appointment, the physician walked in. She didn’t look at me. She washed her hands, and she asked me, “What brings you here today?” I was confused at the question because my neurosurgeon made it sound like he had had a whole conversation with her about my case and that he worked with her to get me in in a really short period of time. So when she asked me what I was there for, I felt really thrown by that question. I thought she would know me better or understand why I was there.
When I explained, “I’m here for a second opinion on a DIPG diagnosis,” she caught up pretty quickly and said, “Oh, okay, I remember, I understand.” Again, that visit felt very cold. It felt very sterile. It actually felt kind of rushed. She told me that I could go home and have radiation therapy. I did not have to go to that center for therapy. My local hospital had the same linear accelerator that they had. There was no clinical trial at the time that I would be eligible for. So really, my best shot at this was to go home and get my treatment.
I asked the physician, “What do you think my prognosis is?” I remember her biting her lip and saying, “Not good.” I said, “Will this kill me?” She didn’t hesitate. She said, “Oh my, yes.” I must have looked stunned because, of course, I went on the internet, and, of course, I Googled this. But I also knew not to really trust what I was seeing on the internet, that every patient is different, every case is different. I tried very hard not to focus on the worst possible outcome for myself. I was really hoping that she would tell me, “Actually, it’s hard to predict your outcome,” or, “We just don’t know enough about this tumor type,” or, “It’s so rare altogether.”
And it’s even more rare for adults that it’s difficult for us to say. But for her to definitively say, “This is going to kill you.” My next question to her was, “When? How much time do I have? Is it months? Is it years?” She said, “It’s hard to say. You might have five years with treatment. I’ve seen that happen.” I said, “What about ten years?” She said, “Ten, I can’t guarantee that. I don’t have a crystal ball. It’s hard to say.”
For me, as the patient, when you start putting timelines on things, and you start thinking about milestone moments, in my mind, I was thinking, “Okay, in ten years, my daughter won’t even be in high school. I won’t get to see her graduate, let alone get to high school. My son, who is a newborn, will be finishing up elementary school.” You start going through these milestone moments that you may not get to see. In that moment, when I heard that this was terminal and it likely would only be five years for me, the best way I could describe that feeling was it felt like I had just been robbed blind. I had no idea that that type of prognosis was coming. I did not expect to hear it from a physician at one of the best cancer institutes in the world. I felt really defeated in that moment. I remember sinking into that exam chair, with the terrible neon lights above, and just feeling so defeated already, and I hadn’t even started this battle yet.
Choosing a brainstem biopsy and radiation for my brain tumor
Somehow, I got myself together, came home, and really just had a shift in my attitude. I thought, “I’m not going to go by what that physician told me. That’s one physician. I’m one person. I don’t think that I have an expiration date. I certainly don’t feel like it’s going to be on that timeline. Maybe it will be, but I feel like I need more information.” We were going by an MRI, and MRIs are very accurate, I understand that, but that’s when I started looking into biopsy options for the tumor, because I really wanted to make sure, before I went ahead with radiation — which you can’t undo — and you really only have one opportunity with my tumor type to have radiation therapy. You cannot go in and keep radiating that same area.
For me, it was very important to have all the information I needed to move forward with the decision for radiation therapy. I found another physician who was doing biopsies on the brainstem regularly. He was doing them regularly with success. I moved forward against the advice of a lot of people who told me that it’s just way too risky, it’s way too dangerous, the brainstem is highly sensitive, and we really don’t advise that you have the biopsy. But I felt personally that I needed that information. I did have a brainstem biopsy done.
The biopsy confirmed what was in the MRI. It told me that it was a grade two astrocytoma, and it was a diffuse intrinsic pontine glioma, meaning it was in my brainstem. I presented that information to my local hospital. The tumor board at the hospital met, and they decided, “Yes, the next best step for you is radiation therapy.” In the spring of 2015, I had 36 radiation therapy treatments to the brainstem. I had a follow-up MRI, and the MRI mercifully showed that it had helped shrink the glioma significantly. From there, I was placed in observation mode, which meant that I would have to go every six months to have an MRI to see if there was any change in the tumor.
Going into remission and the hidden emotional toll
After months and then years of this, eventually a physician told me that I was in remission. This is now in remission. Now I have an MRI every two years to monitor the glioma. But I have to say that in my journey, that period of remission was actually when I struggled the most, and I did not expect that.
People think that the hardest part of the battle is getting through treatment, and that is a very significant part of the cancer journey. But for me, I wasn’t expecting to struggle as much as I did in remission. When you think of the word remission, you often think of celebration and that it’s all behind you. But I realized quickly that it was never going to be behind me. It was now a forever thing in my life, and it was really hard for me to navigate and re-assimilate back into my old life, knowing that it would never be the same as it was before this, and learning to live with having this every day and managing all of the anxiety and the fear that you carry as a cancer survivor.
Finding meaning and gratitude after cancer
I think what really helped me — like I said, in remission, I still felt very bitter — I was asking myself a lot, “Why did this happen to me? Why did I have to go through this as a young mom with two children at home? Why me?”
I started asking the question differently. I started asking, “Why did this thing happen to me?” — with the emphasis on “this.” What was this meant to show me that my everyday living wasn’t teaching me? When I started really thinking about that question, that changed my outlook completely. I started realizing that one thing cancer will do for you, for sure, is slow you down. It will command your attention like nothing else can in your life, because you’re fighting for your life.
When I look back now at that period, I realize that I did things that I probably would never take the time to do, but I did them because I was really trying to stay present and trying to ground myself in the blessings of my life. I took time to think about who made an impact in my life up until that point and why.
What did they teach me? I also thought a lot about what I could share with my children now that I want them to know, in case I’m not here someday to teach them — whether it’s this is how you cook, this is how you make friends, this is what to look for in a future partner, this is what to do when you’re having trouble with your friends or your family, this is how you manage conflict. I know for sure that I would not have thought about those things as much as I did had I not been facing my mortality, thinking about what would happen if I weren’t here for them someday. That was actually a great blessing that I found that cancer gave me that probably nothing else would.
I also realized that cancer made me become a much more compassionate individual. I already considered myself to be an empathetic person, but it changed entirely for me. Now I feel like I’m someone who lives with this invisible scar. To meet me, you probably would have no idea that I had a brainstem biopsy, that I went through brain surgery, that I went through radiation to my brainstem, that I’m a brain tumor survivor. But one of the lingering symptoms for me is that I still struggle with my vision.
Living with lingering vision changes and invisible scars
I have now gone through two rounds of vision therapy. It’s gotten better, but it’s one of those symptoms that will just never really change for me. It might get a little better, but it will never be back to where it was. I feel like now, if I’m carrying this, then I can only imagine what other people are carrying — that everybody has something, something deeply painful, because we’re all human and we can’t escape life without, unfortunately, some deeply painful moments.
Knowing this now, I really try to think about what other people might be carrying and not worry so much if they’re rude to me or if they’re unkind. I now know that everyone’s carrying something invisible about them because I know that for myself, and I can only imagine that that’s true for other people.
Redefining purpose and what it means to come alive
The other great lesson that stayed with me is a quote by Howard Thurman, because I really think he said it best. When you’re thinking about your purpose in this life — what you’re meant to do, what you’re called to do — he says, “Don’t ask yourself what the world needs. Ask yourself what makes you come alive, because what the world needs are more people who have come alive.” Truly, I strive to do that every day. I think about what lights me up and what fills me up.
It doesn’t have to be big, extravagant things. It could be something as simple as just taking a break and getting outside for a walk or a jog, or connecting with my kids, or taking time with my pets. Simple things can really fill your cup. I really try to spend as much of my time doing those things and being around those people that give me really good energy and light me up and make me come alive.
Surpassing milestones I thought I would never see
When I think about the milestones that I was afraid I would miss, and I see myself now meeting those milestones, seeing those things happen — seeing that my daughter now will be a junior in high school next year, she graduates in two years — that’s a moment that I thought I would not get to see. It’s all extra blessings. It’s all extra special to me because those were moments that I thought I would not get to see, that I would not live to see. It makes them even more special.
Embracing an unknown prognosis and focusing on the present
One of the things that really changed my attitude toward all of this was when I was in observation mode and having the MRIs. I would always ask the physician, “What is my prognosis?” They hated that question because they didn’t know how to answer it. They really, truly didn’t know. At one point, one of my physicians said, “Your prognosis is unknown.”
At first, that felt very scary, to be unknown. But when I reflected on it, I thought, “Actually, I like that, because in a sense we’re all unknown.” That puts me on the same playing field as everyone else. Now I don’t feel like I have an expiration date. I really believe that I could have worried about that, or I could continue to worry about this tumor all day, every day, and it still may not be the thing that kills me. I still may have it be a car accident; any number of things could happen to me. It still may not be the thing that defines my life.
I choose to see it that way — that we’re all unknown. None of us really has an expiration date. We should be joyful for the time that we do have, because that’s the only thing we own for sure, the present moment.
Life 11 years after my DIPG brain tumor diagnosis
So looking back now, 11 years later, it is really amazing to me to see all of the things that have happened to me that I never thought would have been possible 11 years ago. Seeing my son, who is now 11, and my daughter, who is now 16, is really remarkable.
Since my diagnosis and since my treatment, other amazing things have happened for me. I was working in healthcare marketing at the time of my diagnosis and during the treatment and for a few years after that. I now work in higher ed marketing, so I changed industries completely, and that has been an amazing journey. I also published a book, Finding the Rainbow: The Other Side of a Cancer Journey, which talks a bit more about my lessons learned after the cancer diagnosis and treatment. I also started my own company, so I do marketing consulting as well. It’s been an amazing, incredible journey that I never would have expected for myself, and I probably never would have ventured into had I not faced this challenge and this unique journey.
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More Brain Tumor Stories
Hope and Self‑Advocacy: Holly’s Stage 4 Endometrial Cancer Experience
For years, Holly poured her energy into her physically demanding job at her family’s marina in northern Maine, her art studio filled with mixed media projects, and a close-knit family she adores. Her stage 4 endometrial cancer experience began long before a formal diagnosis, with severe fatigue she attributed to depression and grief after the death of a beloved niece, and with holiday meals where she suddenly felt full after just a few bites. Those early symptoms were easy to dismiss when life was busy and her priority was caring for everyone else.
Interviewed by: Tory Midkiff
Edited by: Chris Sanchez
Bleeding issues, persistent fatigue, and later, severe pelvic pain eventually pushed Holly back to the doctor. She describes the shock of undergoing a transvaginal ultrasound and biopsy, then being told she had cancer before the biopsy was even complete, alone in an exam room while she was getting dressed. The diagnosis of metastatic endometrial cancer came with a prognosis of one to three years. Holly remembers the surreal moment of asking if she might live to 80 and being told, almost casually, that she would not.
Her treatment included multiple rounds of chemotherapy and a hysterectomy. Holly talks candidly about physical side effects, one particularly rough final chemo round that brought intense nausea and a panic attack, and the emotional weight of watching her family suffer as they saw her in pain. She emphasizes how crucial her advanced cancer support group and a compassionate care team, especially the nurses and nurse navigators, have been in helping her feel less alone and more understood.
Today, Holly is in remission, a reality she is still absorbing after having prepared herself and her loved ones for hospice and the end of life. She describes a profound shift in how she lives. She now slows down, finds joy in small rituals like a good cup of coffee or doing the dishes by candlelight, rescues cats with her husband, makes art, and savors time with family and friends. Her story highlights a powerful transformation: from dismissing her own needs to becoming her own advocate, listening closely to her body, and encouraging others to value themselves enough to seek care early and often.
Watch Holly’s video and read through her edited transcript for more about her story.
- Listening to persistent symptoms like fatigue, bleeding changes, pelvic pain, and feeling unusually full after small meals can be lifesaving. Holly now urges others not to dismiss these signs.
- A universal truth: patients deserve to value themselves, ask questions, and seek care early. Your health is worth the time, the appointments, and the second opinions.
- Supportive relationships, including advanced cancer groups and empathetic nurses, can make an overwhelming medical experience feel less isolating and more manageable.
- Holly’s experience shows her strength in transforming from self‑neglect and denial to strong self‑advocacy, boundaries, and daily practices of self‑compassion and joy.
- Even with stage 4 cancer and an uncertain future, it’s possible to reclaim a sense of control by living one day at a time and intentionally seeking out moments of gratitude.
- Name: Holly J.
- Age at Diagnosis:
- 58
- Diagnosis:
- Endometrial Cancer
- Staging:
- Stage 4 (metastatic)
- Symptoms:
- Severe fatigue
- Depression
- Decreased appetite
- Feeling full quickly
- Abnormal bleeding
- Severe pelvic pain
- Persistent skin infection
- Treatments:
- Chemotherapy
- Surgery: hysterectomy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- Early life, work, and joy in Maine
- Family, grief, and missing the early signs of endometrial cancer
- Christmas, fullness, and worsening symptoms
- Hearing “You have cancer” and finding support
- Watching my loved ones suffer and focusing on one step at a time
- Oncologists, system gaps, and learning to self‑advocate
- Changing through endometrial cancer and looking back at missed clues
- Confronting my prognosis and mortality
- Nurses, kindness, and what’s missing in the system
- Finding joy, remission, and reframing life
- Letting go of stress and actively looking for joy
- Why I share my story and endometrial cancer risks
- Awareness beyond endometrial cancer and how cancer has changed me
- Finding happiness in small things and everyday gratitude
- Recovery takes time, and learning to give myself grace
- Appreciating life more deeply, and living at full speed
- Purpose, helping others, and not feeling alone
- Losing control, regaining ground, and taking it one step at a time
- Presence, simple pleasures, and permission to enjoy life
- Initial denial, anger, and getting the official diagnosis
- Realizing that it wasn’t my fault, and the shock of limited time
- Ignoring symptoms, infection, and the message to listen to my body
- Fear, nighttime worry, and my strategy for containing anxiety
- Not being alone and the power of group support
- Experiencing community love and everyday kindness
- My final message: Be your own advocate and value yourself
Early life, work, and joy in Maine
My name is Holly Johnson, and I have stage 4 endometrial cancer. It’s metastatic.
I got the diagnosis at the beginning of last year, 2025. For the last, I guess, eight years, I was working at a family marina in northern Maine. It was a very physical job. I worked with my mother and sometimes with my brother, so it was a lot of fun, but very hard work. But we always had fun, and I enjoyed it.
I love being outside. We’re very lucky here; it’s so beautiful in Maine. Even in the winter, I enjoy the snow. I love Christmas. I’m an artist, and so I’m actually in my art studio, and I love to play. I love mixed media. I design jewelry sometimes. I started taking classes from this woman, and she said, “Just let your inner child out and play.” And I’ve really been grasping onto that since I started this journey, and I’m allowing myself to play and find joy.
I guess the things that are most important to me have been in the past and still are, because of this journey again, my family and the support. I have nieces and nephews that I adore. I have a very close-knit family: my mother, my brother and sister, their spouses, and my husband. So I’m very fortunate.
Family, grief, and missing the early signs of endometrial cancer
As for my best friend, who I consider family, I’ve known her for so long. I just love my family, and I love doing things with them and being with them. So I think what I tended to do was to put other people ahead of me, and I always did what everybody needed.
My family lost my niece a few years ago. I’d always been so close to her, and that was so difficult. I wanted to be there for my family and help my brother and his wife, and so I think we did that for quite a while. I think I didn’t pay attention to some signs that were going on. I got really severe fatigue, and I thought it was because of depression, which I already struggle with. But then losing my niece, who I was so close to, she was my partner in crime as far as being silly goes. I love to be silly, and she was my silly partner. So, you know, that was really tough.
I worked a physical job, and I just thought that’s what it was because the fatigue was so extreme. I didn’t think anything of it. Then the following year, I was sick at Christmas, and I love to eat, and I love Christmas, and I love family. I remember that Christmas when I couldn’t eat.
Christmas, fullness, and worsening symptoms
And I thought, “That is really weird.” I felt like I was full, and I kept telling my family, “I eat just a little, and I feel like I’m full.” So that was one of those other signs that something was going on that I did not pay attention to. I just thought, “Whatever.”
Then, you know, fast forward a few months, and I had actually gone to the doctor back in the summer before that and had some bleeding issues and still had the fatigue, and nothing came of it. I didn’t do any tests, and so I was just sent on my way.
Then again, Christmas time hit, and I didn’t feel well. I got really ill right about the end of December and was in severe pelvic pain, like I’d never felt in my life. It was a very long story short, but I eventually went to the doctor, eventually got some medicine for it, and I had a — I can’t remember the name of it, but they go in and X‑ray you. I’m losing the terminology for it, but I think they saw something, and then they ordered a biopsy. That’s when I started to go, oh, something. Then, when this woman was doing a transvaginal ultrasound, I had no idea what that meant until I got into her office.
Hearing “You have cancer” and finding support
I think she saw something, but she couldn’t tell me. That’s when I just started to get that feeling that something was not right.
They eventually did a biopsy, and I was actually told by my PCP that I had cancer before they even finished the biopsy. I was left standing by myself, getting myself cleaned up and dressed after having been told that. It was very traumatic. It was very shocking.
We’ve talked about this. I belong to a cancer group through the Dempsey Center, which I’m very grateful for, and which I would tell anyone to get involved in. Mine is an advanced cancer group, so all the folks have advanced cancer. At first, I didn’t want to do it because I thought it would be difficult to hear people’s stories. But it has been my lifeline to be able to talk to people who understand what you’re going through. You know, people will say they know what you’re going through and they feel bad for you, but unless you’ve had it, you just don’t know. It’s so comforting every week to know that I’m going to talk to these people in my group and they totally understand.
I think that is probably that, and the most difficult part of it is that my family has been through so much, and that was the toughest part for me. I could take the chemo, I could take the surgery.
Watching my loved ones suffer and focusing on one step at a time
When it came to my family, to see my brother suffer — and my best friend, my sister, my mom, my sister‑in‑law, all those people, and my husband too — it was just so hard to see them see me in such pain. I can handle the pain, but to see other people, it was almost too much for me.
Another thing I think I would give as advice is that if you can, focus on one thing at a time. I told myself in the beginning that I could handle this next blood test. I had many blood tests, and I had many needles. I would just say to myself, “I don’t know what’s going on.” A lot of times with cancer and treatment, depending on where you are and who you are, it’s tough to know what’s going on. So I just tried to hang on for dear life, and whatever happened in front of me is what I was dealing with. I tried not to get too far ahead of myself.
To back up a little, eventually, when I got my diagnosis, and my doctor called me and told me that I actually had it, it just kind of went fast from there. I got one oncologist, but I didn’t click with her, and so I asked for another one.
Oncologists, system gaps, and learning to self‑advocate
And the new doctor’s been great. But I do find there’s a problem within the system with continuity.
Again, I’ve talked a lot about this in my cancer support group. People have a real problem, you know, with doctors talking to doctors and just within the same system, let alone if you’re working with a different doctor in Boston. It’s just very difficult.
As a patient, you don’t know. I’d never gone through this before. I didn’t know what this was going to be like. I didn’t know the questions I was supposed to ask. I didn’t know what the treatment was going to be. They assume, I guess, that you know these things, and I think I’m fairly intelligent, but I had no idea.
I wish I’d asked more questions. I wish that I’d spoken up for myself. That’s one good thing I’ve learned through this: being a better advocate for myself. Because if you don’t listen to yourself, I mean, it’s much like a lot of other people have said. I watched a lot of these videos when I was going through this. It was so helpful to know you weren’t alone. But like a lot of other people, I wish I’d pushed harder for myself. And I am the kind of person who just does not do that. It’s not in my nature.
Changing through endometrial cancer and looking back at missed clues
This cancer journey has changed me incredibly, because I realized what a mistake I was making in not listening to myself, pushing for an answer, or, if I didn’t like the answer I got, to go and do something else. I did not do that.
I think there were little hints all along for me. I had some problems a year and a half, two years ago. I got a really bad skin infection, and it would not go away. Later, you learn that that can be a symptom of cancer. Then all the stuff that added up. But I still didn’t get it until someone actually told me. I just wish I’d listened to myself better.
You know, I know my body. I tend to be a person who sticks my head in the sand because I just don’t have time for it. Well, now I have time. And now, you know, I can’t work. I still struggle with fatigue. I’m starting to get arthritis, I found out.
When you go through something as serious as cancer, you do what they tell you to do. You get the chemo. Because I was told that I had a year, possibly two, left.
Confronting my prognosis and mortality
I asked the first doctor, “Will I live till I’m 80?” And she just chuckled, and she said, “No, you’re not going to live to 80.” I was like, “Oh, that was harsh.” But then the second oncologist I had said, “Yeah, you’ll be here in a year, maybe two, three, possibly.” That was sobering.
But, you know, I think until you’re faced with that, you don’t think about your mortality. I mean, we do know we’re going to die, but you don’t think that you will ever die. It’s been difficult adjusting to that, as you might imagine, to know that you’re not promised. But, you know, someone told me, you may not know that you might get hit by a bus tomorrow, and you may not know what bus that’s going to be.
When you talk to people, like I said in the beginning, if they have not been through this, it’s really hard for them to sympathize. I know people want to help, and they want to understand. But, you know, it’s tough. It’s tough to get care from someone who hasn’t experienced it, like doctors. I’ve found that for me, the nurses have been the best part of this whole journey.
Nurses, kindness, and what’s missing in the system
The nurses in the chemo ward, the nurse navigators throughout the system that I was in, have been the kindest and the most helpful. We talk about it again in my advanced cancer group.
I know that it’s great to have a great oncologist who knows what he’s doing, but it would also be nice if they were more understanding. I’ve heard some terrible stories of people getting told they had cancer just right out of the blue, with no warning or no one holding their hand. Of all the people in my advanced cancer group, there was maybe only one person who had a good time of it. It makes you realize that there is something seriously wrong with the system when you can’t talk to someone like a human being, or at least try to sympathize with them.
I feel like there needs to be some sort of kindness training for people, because this is tough. It’s a tough journey, even for someone tough. I think I’m a pretty strong person, and it still really threw me for a loop. It takes away who you are, which I think has been the most difficult thing. I’ll never be the same person. But in some ways it’s been good for me.
Finding joy, remission, and reframing life
It’s enabled me to find my voice. I’m much more joyful. I feel happier, which sounds ironic, but I’m just grateful to get up every day.
The last time I went to the doctor for my three‑month checkup, I was told I was in remission, which threw me for a loop because I was headed on the journey in this direction and then was told, “You’ve completely turned around.” I was shocked. I’d been dealing with trying to get my affairs in order and dealing with the psychology of knowing you’re going to die and you’re going to need hospice, and all your people are having to go through that. Then to be told you’re in remission is just — I haven’t wrapped my brain around it, and it’s been three months.
So I’m in that place where I know that I could get cancer again, and I probably have a better chance of it than most people. But at the same time, I still just want to live my life one day at a time, which is what I’m trying to do. I hate to say it’s a blessing, because that sounds kind of strange, but I feel like it’s really helped me reframe my life. Stress is one of the worst things for cancer, and I had a lot of stress in my life, most of it self‑imposed.
Letting go of stress and actively looking for joy
But I feel like I talk myself down a lot, and I will just say, “This is not worth it,” whatever little, trivial thing it is. I found that I can get rid of most of the stress in my life just because I tell myself, “This is just not worth it. You know this is not good for you.”
I’ve really been enabled to just enjoy life and do the things that I love. I literally look for joy every day, whether it’s in a cup of coffee or — my husband and I rescue cats, and so we have a house full of cats, and we continue to rescue. Those are things that bring me joy. Art supplies, talking on the phone with my nieces or nephews.
I really honestly look for something every day to be grateful for. I think in the time we’re living in, it’s a really good time to do that. I don’t know, cancer’s just taught me so many lessons. I wouldn’t say I would wish for it, but I feel like it’s changed me in some ways. I’m not the same person that I was before it, but I’ve learned so much, and I feel like a good part of me is a better person for it.
Why I share my story and endometrial cancer risks
Yeah, I could talk about this forever. I’m one of the people in my cancer group who just talks nonstop about it. I do this because I want other people to hear these things.
I didn’t know what endometrial cancer was in the beginning. I had no idea that I had all the symptoms. I mean, I had all the dangers of it. I was obese. I’d never had children. I started my period young. I had not been through menopause yet. So it all added up to excess estrogen in my system. Again, I just didn’t know. Everywhere I go, I talk about it. So I think the reason I’m doing this is that if one person listens to me — if someone asks me, or if we just get talking — I will tell them, “Please go get yourself checked if you’re at all worried.”
My sister tells her friends, and I tell people I bump into, my friends. It’s something that I feel like I’ll share with anybody who wants to listen to me, because I just don’t want it to happen to someone else. You think, as I said in the beginning, “Oh, you’re not going to die, you’re never going to get this.” That’s not necessarily true. We just all have to be really diligent, I think.
Awareness beyond endometrial cancer and how cancer has changed me
And learn more about, if it’s not endometrial cancer, it’s breast cancer or colorectal cancer. There are just so many things that we need to be aware of and not stick our heads in the sand like I have been used to.
I just feel like it’s brought more than it’s taken from me. I think that, like I said a hundred times, I’m a changed person, and I just want to stand on the rooftops and tell people, because I just don’t want to see someone else who can prevent this and their families from going through this. After all, it is tough.
I think people who have cancer are tough. This isn’t for the weak. People will say sometimes, “You’re so brave,” and it’s like, “I’m not brave. I’m just going through this the best that I can, and I’m not always perfect.” It’s been a struggle, and sometimes I get really angry, but most of the time I think I’m happy, and I’m really just becoming more of myself.
I’ve let go of a lot of things. I’ve let go of some anger. I just feel like if I have one more day here, I’m so lucky. Not everybody gets that. You don’t realize how wonderful life is, how many joys there are. I’m one of those people who listen to the birds sing, and I love my cats and, you know, an old movie or coffee.
Finding happiness in small things and everyday gratitude
I’m a coffee junkie. It makes me so happy. That’s our joke in the family, that we just love coffee so much it’s worth getting up in the morning for. It’s just finding your thing, I think. Finding what makes you happy.
I just wish I could help more people and tell more people what it feels like so they don’t ever have to go through it. If you could just rewind and show some people, this is it. This is what we get every day. We’re so lucky to be here or to go to the grocery store. I don’t even grumble about doing dishes anymore. I make it a thing. I light some candles. I use dish soap that I like. I try to take joy in everything. It doesn’t always work, but I think I’m far better than I used to be.
It’s a huge bonus, though, not having to work. I didn’t have to struggle with that. My brother was my boss, and so I just said, I can’t do this anymore, and he was totally supportive. So I’ve been very fortunate in that. Bless the people who have children and have jobs; it’s really a full‑time job.
Recovery takes time, and learning to give myself grace
I had a discussion with my best friend not too long ago. It’s been a year since I started going through this. I just thought, “Okay, this is a new year, everything’s going to be wonderful, and I’m going to get back to normal.” My friend said, “Holly, you need this whole year to recover. You’re still recovering. You forget sometimes because you think you’re going to go back into that place that you were in, and that’s just not going to happen.”
I give myself grace. I think it’s so important. Sometimes I’ll get hard on myself when I can only do one or two things a day. I can do the laundry, and I can do some dishes, but don’t ask me to vacuum; it’s too much. I’ve slowly had to realize that there are just limits for me now that there weren’t before. I have to accept that. I have to be graceful with myself.
Other people don’t put anything upon me; it’s just that I put things on myself, and I’ve had to learn not to do that. It’s, like I said, just such a lesson to learn. It’s just such a good exercise to go through to appreciate life. I just, I can’t say it enough. I so appreciate every day being here and getting up and, you know, the sun is shining.
Appreciating life more deeply, and living at full speed
It sounds so corny, but it’s so true. I’ve always been a Renaissance woman in that I love to do everything. I love everything. I love reading. I read a lot of English literature. I love to do any craft that’s going on. I feel like I’m on full speed right now because I feel like maybe I do have limited time. The rate of mortality is higher because of the stage that I’m at.
I believe I also read that endometrial cancer is the fastest-rising gynecological cancer, and it has one of the highest mortality rates. Sometimes I wish I hadn’t learned as much as I’ve learned about things. But I also feel like after it’s happened, it’s okay for me to do a bit more digging.
I think in the very beginning, I was surviving, and I was trying not to take in too much information. But now that I’ve done that and done the research, I think I can handle more of it now. Oddly enough, I think this has kind of helped me find my purpose. I’ve always wondered what I should be doing, and I really love the thought of helping people heal or being able to talk about it.
Purpose, helping others, and not feeling alone
And so for me, I think this has given me some things to think about. So the bottom line is that I want to help people. That’s the reason I did this, that I just want to tell as many people as I can about this.
Don’t be afraid. Don’t feel like you’re alone. Again, that’s what I realized when I started watching these videos in the very, very beginning. It felt so comforting to know I wasn’t the only person. It was huge. I live in a small town, you know, and it was just nice to have someone you could think about your own story and realize that it was similar. That was a really huge help. It just made me feel like, “Oh, you’re not the only one going through this, and maybe there is some hope.”
That’s what I just hope I can bring to somebody else, this feeling. I may not have all the answers. I may not know what’s happening. I’m in remission right now, but I don’t want it to dictate my life. That’s tough too with cancer. You feel like you have absolutely no control. You have no control over your body. You have no control over what’s happening to you and what things you have to do.
Losing control, regaining ground, and taking it one step at a time
It’s really disconcerting when it’s like somebody pulled the rug out from under you. You’ve got no baseline, no anchor. It’s very difficult.
Just having faith in yourself and knowing that you can do this, if you have to say it out loud, which I probably did quite a few times, helps. Again, I would take it slowly, like I said, one blood test at a time, one surgery at a time, one chemo at a time. I had four chemos, which weren’t that bad, and then I had my hysterectomy. Then they waited a little bit, and then I had, I believe, two more chemos. It was fine. I didn’t really have any problems.
I had one allergic reaction that wasn’t a big deal, but the very final one, I will say, was difficult. I don’t know whether it’s a build‑up of the chemo, but I got really nauseous and I had a bit of a panic attack that very final day. But then I rang the bell, and I didn’t think I’d get to ring the bell. So when they let me ring the bell because I was done my chemo, I was very, very happy.
I think it’s just been such a good lesson, and it’s made me just slow my life down and enjoy it and just be happy right where I am, come what may. If it comes back, I’ll deal with it then.
Presence, simple pleasures, and permission to enjoy life
But right now I’m trying to enjoy every time my husband and I go out to eat and have fun and go antiquing, and every time my mom and I go on an adventure, or any time I spend with my best friend drinking tea and looking out the window at the ocean with her. I really try to be in those places, just to be there and not be obsessed by my phone or other things going around. I really try to just focus on the time I’m in and my happiness.
I do not have a problem with ordering books and art supplies if it’s something that makes me happy, or buying coffee. I have a husband that’s very supportive and has just told me, “Do whatever you want to do, whatever makes you happy.” That’s really what I’ve been trying to do.
It’s just unfortunate it took this to make me feel that way, to give myself that love and attention. But I’m here now, so I’m trying to practice that every day, just being happy and mindful, and again giving myself grace and not being so hard on myself.
Initial denial, anger, and getting the official diagnosis
I think I was in denial in the beginning because it seemed so surreal. I guess I’m a tough person, and so when something happens, I kind of just go, “I’ll be fine.” I think that was part of my problem, that I didn’t take it seriously. I don’t know if other people took it seriously.
When I got my final diagnosis, I was very angry and I was very upset, and I was alone actually at the time. She called me over the phone and told me that officially I had cancer. Of course, then you get all the readouts from the exams they do and the tests, the blood tests they do, and all the stuff that they look at through a microscope. You get to see that on MyChart, which I don’t know if that’s a good thing or not, because I’m a layperson; I did not really understand what any of it meant. I knew that it probably wasn’t good, but I got to that before anybody could explain it to me.
So that was difficult, because here I am trying to Google all these words that I don’t understand, and that was not helpful. I think by the time that I finally took it in that it was real, of course, I’m sure I cried, and I was hysterical, but I don’t know. I did get that feeling of, you know, why me? How could this happen to me? I’ve never done anything wrong.
Realizing that it wasn’t my fault, and the shock of limited time
It doesn’t choose you. I’d go backwards in my life and think, “I wish I’d paid attention to some signs.” I didn’t know all those things that I had listed before, which added up to having way too much estrogen in my system. I did not know that.
I really don’t remember much about the time from when I got diagnosed until I first saw an oncologist. When I started seeing oncologists, it was like a whirlwind. When they tell you that you have a year or two to live — I remember thinking I was in total shock. My best friend had gone with me to the appointment, and she’s a nurse, and that’s the reason — she had been a nurse practitioner, and that’s the reason I wanted her to go, so that she could translate for me. Even to think about it now, it was so shocking. You’re reeling because nothing like this has ever happened to me. There’s no history of it in my family. It just didn’t seem like it could happen to me.
Ignoring symptoms, infection, and the message to listen to my body
And I think that was probably part of the problem, that I’d not listened enough to myself. As I said before, I didn’t listen to my body. I didn’t know the signs — the fatigue, all the things that added up. Later, I looked back and, in reflection, thought, “Oh, that meant something.” When I was fatigued, I was bleeding a lot. And I had a really bad infection, and it would not go away. That, I think, was my body trying to fight something.
There are all kinds of little things that happen, and I think we all dismiss them. I think that if you’ve got some things going on, then you go see someone and you raise the flag and say, “Something is going on.” I know that there are a lot of people who do that, because there are some in my family who do that. You can’t tell people that, but I’m telling you, if you feel those things, take care of yourself. If my friend had told me that she was experiencing those things, I would have said, “Oh my gosh, go to the doctor.” But when it’s you, you don’t think that way. You think, “Oh, it’ll go away,” or “It doesn’t really mean that much.” But that’s not how adults handle it, which I’ve learned. Again, between the actual diagnosis and the procedures, there was this big gap of time that I don’t remember much.
Fear, nighttime worry, and my strategy for containing anxiety
I mean, I know I was upset. I know I was afraid. I’m less afraid now that I’ve got a year into it. I don’t feel the fear and the panic that I felt then.
I guess if I stop and start thinking about death again, I get a bit of a whirlwind. I talked to my counselor about this because I have a separate counselor besides my advanced cancer group. I said, “I get worried at night. My husband works nights, so I’m alone at night, and I get whirling, and I worry and worry and worry.”
She said, “Okay, tell yourself you’re going to take, say, 20 minutes in the morning, whenever — set a time and worry about what you’re going to worry about. If you need an extra ten minutes, take an extra ten minutes.” So I started doing it, and I don’t go down the rabbit hole anymore at night. I just don’t do it. I tell myself if I’ve got some stuff to worry about, I’ll worry about it then.
The fear—I don’t want to say it’s gone away, but because I’m dealing with things one day at a time, that’s helped immensely.
Growing stronger, feeling more solid, and the work of letting go
I’m not looking too far in the future because none of us can. I feel like that fear that was there initially has — well, I wouldn’t say it’s completely dissipated, but I just feel more solid and happier.
People say, “Don’t relive those things.” I’m still working on letting go of some of the anger and the fear, but I think for the most part I’ve dealt with it. It takes a lot of work.
You never know how tough you are until something happens to you, and then you realize I’m tougher than I thought I was, because I think I’ve handled things well. I’m here, and I’ve been through a lot, and I get up every day. I’ve had people say, “Oh, you look so good. You look so happy.” I’m like, “I pretty much am. I’m doing well.”
They don’t want to know about the stuff you deal with every day, or the little mini bouts of depression, or that you doubt yourself a lot and doubt your choices, and that there’s a little bit of blame that you put on yourself sometimes. I think I’ve worked through a lot of that.
Not being alone and the power of group support
It really helps just having that group that I meet with every week — when you know you’re not alone, and you know other people feel the same way. More often than not, you know, someone will start talking, and everybody’s heads are bobbing because everybody feels the same way. You think you’re the only one that feels that way, and then someone will say, “Oh, I’m so glad you said that.” That’s exactly how I feel. That’s been a huge help, to just know you’re not alone.
Again, I hope, I really, really hope this helps one person, just one person, listen to me say, “Pay attention to your body. Pay attention to things that have happened that you’ve just brushed off. Don’t brush it off, I beg you, because it’s not a fun trip.” The hospital’s not fun. It’s just not fun. If you can, just get help, ask for help.
That was the other tough thing. Asking for help has been tough. I haven’t had to ask for it much because I have friends who bring me food. Through the journey, they brought me food every week. At the marina I work at, my sister started a GoFundMe page, and I had so many people who I worked with support me. I just couldn’t believe it. One day, my brother said, “Holly, people really love you.”
Experiencing community love and everyday kindness
And I was like, “Oh.” It’s not that I didn’t know, because I had so many great people there, but it was just lovely to get the support. The people who still see me now in our little town are so happy that I’m up and around.
You just never know. You never know how much people mean and how much you mean to people until you go through something like this, and then people come out of the woodwork. Somebody gave me a piece of artwork because they heard I liked it that she had painted. It’s lovely. Just little things like that. People just come out of nowhere and say, “Oh, I heard, you know,” and that they want to do this or that. It was just incredible. People are so kind. I still, even now, get people just saying they’ve been praying for me and are so happy that I’m still here. It’s really lovely.
You know, it’s not a perfect world, but there are so many good people and so many kind people. I just really hope it helps one person, that someone listens to me, someone hears this and says, “Oh, I’ve got some stuff going on. Please, please, please get checked.” That’s my biggest message: it gives you more time here with your family and more time to do the things you love.
My final message: Be your own advocate and value yourself
I guess the thing that I just keep coming back to is that you just have to be your own advocate. You have to speak up for yourself. You have to ask the questions because nobody else is going to do it for you.
I think you have to value yourself enough to know that you’re worth it, that you’re worth speaking up for yourself. You’re worth taking that time. That’s another thing, you might not like to take time out to go to the doctor. I’ve done all the wrong things. It’s just not how we should live. You should value yourself enough to take care of yourself.
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How Lauren Found Clarity Beyond T-cell Acute Lymphoblastic Leukemia (T-ALL) and Treatment Challenge
Lauren, who hails from Ohio, was diagnosed with T-cell acute lymphoblastic leukemia (T-ALL) in May 2022, a twist she never saw coming. What started as a typical cold spiraled into severe symptoms, including persistent cough, chest pain, and fever, which led to multiple doctor visits and misdiagnoses. Eventually, a chest X-ray and CT scan revealed an enormous mass near her heart, which rocked Lauren’s world. Her cancer diagnosis came swiftly, delivered bluntly by an oncologist who had little bedside manner.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
Adjusting to life with cancer was overwhelming. Lauren faced intensive treatments, including lumbar punctures, rounds of brain radiation, and weekly chemotherapy. The treatments caused dramatic physical changes, including hair loss, neuropathy, and severe nausea, which challenged her daily comfort. Yet, amidst the chaos, Lauren found clarity. She decided to stop drinking alcohol, embraced a more balanced approach to health, and left a business venture that no longer aligned with her values.
Mental health played a significant role in Lauren’s recovery from T-cell acute lymphoblastic leukemia. She sought help from a palliative medicine doctor, not just for physical symptoms but for emotional support, too. Accepting this help was transformative, providing better management of her anxiety, depression, and physical side effects.
Lauren’s message is powerful: healing isn’t linear, and facing tough days is okay. She encourages others to focus on one day at a time, embrace the good moments, and reach out for support when needed. Her story underscores the importance of advocating for oneself, mentally and physically, during and after cancer treatment.
Watch Lauren’s video to discover:
- How a common cold led to a life-changing T-cell acute lymphoblastic leukemia diagnosis.
- Why Lauren says cancer became an unexpected blessing.
- The role of mental health and palliative care in cancer recovery.
- How leaving a business she co-owned helped Lauren find clarity during treatment.
- How Lauren coped with T-cell acute lymphoblastic leukemia, one day at a time.
- Name:
- Lauren M.
- Age at Diagnosis:
- 33
- Diagnosis:
- T-cell Acute Lymphoblastic Leukemia (T-ALL)
- Symptoms:
- High fever
- Trouble breathing while lying flat
- Bad cough
- Headaches
- Treatments:
- Chemotherapy
- Radiation
- Lumbar puncture
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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More Acute Lymphoblastic Leukemia Stories
Lauren M., T-Cell Acute Lymphoblastic Leukemia (T-ALL)
Symptoms: High fever, trouble breathing while lying flat, bad cough, headaches
Treatments: Chemotherapy, radiation, lumbar puncture
Christine M., Acute Lymphoblastic Leukemia (ALL)
Symptoms: Enlarged lymph nodes, pain in abdomen, nausea
Treatments: Chemotherapy, bone marrow transplant
Lauren J., Acute Lymphoblastic Leukemia (ALL)
Symptoms: Extreme fatigue, easily bruised
Treatments: Chemo pills, chemotherapy, spinal taps, total body radiation, bone marrow transplant
Renata R., B-Cell Acute Lymphoblastic Leukemia, Philadelphia chromosome-positive (Ph+ALL)
Symptoms: Fatigue, shortness of breath, nausea, fevers, night sweats
Treatments: Immunotherapy, chemotherapy, TKI, stem cell transplant (tentative)
Spenser’s Stage 4 Oral Cancer Story: Turning Trauma into Triumph Against All Odds
Spenser was diagnosed with stage 4 oral cancer. He had always been athletic and was training to be a professional bodybuilder. But in 2022, he experienced an excruciating toothache, which led him to visit the ER. Although he had the tooth removed, he still felt something was off.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
As time progressed, Spenser started to feel very tired and kept having canker sores. He powered through and continued his rigorous workout routines. By January 2024, though, he could no longer dismiss his symptoms. A dental visit revealed a jarring sight in his mouth, leading to a referral to an oral surgeon, who immediately suspected cancer.
The surgeon’s suspicions proved true when Spenser was diagnosed with stage 4 oral cancer (squamous cell carcinoma of the tongue), which had spread to his neck and throat lymph nodes. To deal with a massive tumor, he underwent a grueling seven-hour surgery. The surgeon removed part of his tongue and numerous lymph nodes. The surgery was life-threatening, and his communication abilities were seriously jeopardized.
Recovering from surgery, Spenser next had to consider undergoing chemotherapy and radiation. He initially refused, but his doctors ultimately won him over. His treatment and its side effects were grueling, but Spenser’s resilience shone through. He defied expectations and refused to let his cancer defeat him.
Although Spenser survived stage 4 oral cancer, he experienced permanent kidney damage from chemotherapy and psychological scars, including PTSD and severe depression. Work became difficult, and he struggled under the pressure of his thoughts.
But Spenser rose to the occasion yet again. He found solace in boxing and embraced a new perspective on life. His story is about fighting against the odds, transforming trauma into strength, and never giving up.
Watch Spenser’s story for more about:
- The importance of health and nutrition in cancer recovery.
- How he remained resilient even during the hardest moments.
- Listening to one’s body and seeking medical help if something feels wrong.
- What he’d like other people to learn from his experience.
- Name:
- Spenser S.
- Age at Diagnosis:
- 33
- Diagnosis:
- Oral Cancer (Squamous Cell Carcinoma of the Tongue)
- Staging:
- Stage 4
- Symptoms:
- Severe toothache
- Excessive fatigue
- Persistent canker sores
- Appearance of a large cyst in the mouth
- Treatments:
- Surgery: partial removal of tongue, neck dissection with flap
- Chemotherapy
- Radiation
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
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Small Changes, Big Impact: Easing Myeloma Treatment Side Effects
Multiple myeloma advocate Valarie Traynham is joined by Donna Catamero, Associate Director of Myeloma Research at the Icahn School of Medicine at Mount Sinai and a nurse practitioner specializing in the treatment of multiple myeloma patients, and Abbey Reiser, a dietitian/nutritionist and board-certified specialist in oncology nutrition from the Ruttenberg Treatment Center The Tisch Cancer Institute, to share practical strategies for handling side effects, optimizing nutrition, and improving quality of life.
Interviewed by: Tiffany Drummond
Edited by: Katrina Villareal
- Introduction
- Difference Between Relapsed and Refractory Multiple Myeloma
- Common Symptoms of Relapsed/Refractory Multiple Myeloma
- Current Treatment Options for Relapsed/Refractory Multiple Myeloma
- Easing Multiple Myeloma Treatment Side Effects
- Eating the Rainbow
- The Role of Hydration in Managing Kidney Function and Oral Health
- Foods and Drinks That Multiple Myeloma Patients Should Avoid
- Avoiding Green Tea Supplements
- Managing Weight Changes
- Common Skin Conditions Multiple Myeloma Patients Experience
- Bispecific Antibodies for Relapsed/Refractory Multiple Myeloma
- Common Side Effects Associated with Newer, Targeted Therapies
- Specific Strategies for Managing Cytokine Release Syndrome and Neurological Side Effects
- Dietary Changes to Help Manage Loss of Taste
- Coping with the Emotional Challenges of Relapse
- Final Takeaways
- Conclusion
Introduction
Tiffany Drummond: I’m a patient advocate with over 20 years of experience in cancer research. My journey began as a caregiver when my mother was diagnosed with endometrial cancer in 2014. I quickly realized the challenges of finding resources, support, and shared experiences, and now I’m committed to helping others, no matter the condition.
At The Patient Story, we create programs to help you figure out what comes next. Think of us as your go-to guide for navigating not only the cancer journey but your overall health journey. From diagnosis to treatment, we’ve got you covered with real-life patient stories and educational programming with subject matter experts. I’m your personal cheerleader to help you and your loved ones best communicate with your healthcare team as you go from diagnosis through treatment and survivorship.
The Patient Story retains full editorial control over all content. We want to thank all of our promotional partners for their support. Because of them, our programming reaches the audience who needs it. I hope that you find this program helpful, but please keep in mind that while the information provided is encouraging, engaging, and insightful, it is not a substitute for medical advice.
ANP-BC, OCN, CCRC
MS, RDN, CDN, CSO
Patient Advocate
We are joined by two experts from The Tisch Cancer Institute at Mount Sinai in New York. First up is Donna Catamero, Associate Director of Myeloma Research at the Icahn School of Medicine at Mount Sinai and a nurse practitioner specializing in the treatment of multiple myeloma patients. We also have Abbey Reiser, who has a unique role as part of the multidisciplinary team at the cancer institute’s Ruttenberg Treatment Center. She is a dedicated dietitian/nutritionist and is also board-certified as a specialist in oncology nutrition. Valarie Traynham, a multiple myeloma survivor and thriver and an inspiration to many, will moderate this conversation. Your journey is one of inspiration. I’m excited about this engaging discussion.
Valarie Traynham: I’m a myeloma and breast cancer thriver. I’ve been on the myeloma journey for about nine years and the breast cancer journey for about five years. I can understand the issues when it comes to treatment side effects, so I am so excited to be here and have this conversation with these two ladies.
Difference Between Relapsed and Refractory Multiple Myeloma
Valarie: Donna, can you explain the difference between relapsed and refractory disease? I get this question a lot and it can be confusing to some of the patients.
Donna Catamero: Most patients are both relapsed and refractory. Relapsed is when a patient has an initial response to therapy, so they’re either in complete remission, partial remission, or very good remission, and then their disease starts coming back, which means they’re relapsing from their response.
Refractory is when patients are on therapy and start to relapse, so that means they’re refractory to that therapy. Most myeloma patients are on continuous therapy, so when they start to relapse, they’re going to be a relapsed patient and then refractory to the current treatment thereon. Most patients past their first line of therapy are going to be relapsed/refractory.
Common Symptoms of Relapsed/Refractory Multiple Myeloma
Valarie: When we think of relapsed/refractory, what are some of the common symptoms? Is it just like when we are first diagnosed with myeloma? Is it some of those same symptoms or is it totally different when it comes to the relapsed/refractory setting?
Donna: Patients fall into two categories. Some patients have a biochemical relapse, which means only their numbers are going up. We monitor myeloma patients through their labs. We look at their protein levels and see an increase, but otherwise, the patient feels fine. On paper, we see that their cancer is coming back.
On the other hand, a patient can have a symptomatic relapse, so they’re either more anemic (A), have new bone disease (B), new renal (R) insufficiency or kidney disease, or elevated calcium (C) in their blood. These are the typical CRAB symptoms of myeloma, so they either have those or none at all and we’re seeing the cancer in their blood work.
Current Treatment Options for Relapsed/Refractory Multiple Myeloma
Valarie: What are some of the current treatment options for relapsed and refractory multiple myeloma?
Donna: The landscape of treating relapsed/refractory myeloma is so quickly evolving. We have so many new therapies. In the past five years, we’ve had so many approvals for multiple myeloma patients in the relapsed setting, so it’s a very exciting time.
We have more targeted approaches with proteasome inhibitors, like kyprolis and bortezomib, that we can use in the relapse setting. We have more novel mechanisms of action, so more targeted towards the immune system, like bispecific antibodies for patients who’ve had four prior lines of therapy and then CAR T-cell therapy, another immunotherapy, which is very exciting for patients. It was initially approved for patients who had four prior lines of therapy, but now we can use CAR T-cell therapy in patients after one prior line of therapy.
Valarie: That’s awesome. I always get excited when I think of the therapies that we have since I’ve been diagnosed and even the therapies in the pipeline. It’s given us so much hope as patients.
Easing Multiple Myeloma Treatment Side Effects
Valarie: Abbey, how can a well-balanced diet specifically benefit multiple myeloma patients undergoing treatment?
Abbey Reiser: Diet recommendations often change throughout treatment based on how patients feel and if they experience any side effects that affect their appetite and/or their ability to eat. For multiple myeloma patients who are feeling an eating well, the nutrition recommendations are the same for most other cancers, which is also consistent with the recommendations for the general population.
Plant foods, like fruits, vegetables, whole grains, beans, nuts, and seeds, contain a variety of cancer fighters, including vitamins, minerals, fiber, and phytochemicals. Phytochemicals are naturally occurring compounds in plants that have the potential to stimulate the immune system, reduce inflammation, and fight infection, making these foods especially beneficial for patients to consume while undergoing treatment.
Protein can also help to boost the immune system, promote healing, and build cells, tissues, and muscles. We encourage choosing a variety of lean, animal-based and plant-based proteins, including chicken, fish, turkey, tofu, beans, and nuts. The current plant-based eating model recommends filling two-thirds or more of your plate with plant-based foods and one-third or less of your plate with animal protein to create a well-balanced meal.
Valarie: Are there certain nutrients or dietary patterns that can help manage side effects like fatigue and anemia?
Abbey: Definitely. Patients who experience side effects from treatment may find it difficult to follow a plant-based diet to a tee. Fatigue is one of the most common symptoms among myeloma patients and one of the most common side effects of treatments. I typically recommend staying as active as you can, eating often, and adequately drinking plenty of fluids. Try planning ahead by asking for help with meal prep, trying meal delivery services, and keeping ready-to-eat snacks on hand, like nuts, granola bars, or pre-made protein shakes.
Anemia is commonly caused by the disease, treatments, or kidney dysfunction caused by multiple myeloma and cannot be improved by diet. However, nutritional deficiencies such as iron, B12, or folic acid can also be a cause, and this can be improved by supplementation either orally or by injection. It also couldn’t hurt for patients with these deficiencies to increase their intake of foods rich in these vitamins and minerals, such as turkey, sardines, lentils, and beans for iron, lentils, beans, and spinach for folate, and fish and dairy for B12.
Typically, I encourage patients to talk to their doctor about the cause of and plan of care for anemia before making any significant changes to the diet or starting a new supplement.
Eating the Rainbow
Valarie: As a patient, we’re often told to eat the rainbow. Is that something you recommend?
Abbey: Yes. If their appetite is good, they’re feeling well, and they can eat a variety of fruits and vegetables, I’m all for it because they’re going to get different nutrients from different colors. That’s definitely a recommendation that’s still staying strong to this day.
The Role of Hydration in Managing Kidney Function and Oral Health
Valarie: We often hear about the role of hydration. Can you discuss that role in managing side effects of multiple myeloma treatment, such as kidney function and even oral health?
Abbey: Staying hydrated during myeloma treatment is essential, especially because dehydration can worsen kidney function, which is a common concern due to the disease’s impact on the kidneys. Drinking sufficient fluids helps to flush out waste products and manage potential complications, like high calcium levels, which can occur with myeloma. Bispecific treatments, like talquetamab, can cause oral toxicities including dry mouth, mucositis, and taste changes, and good fluid intake plays an important role in managing these side effects.
I recommend aiming for at least 8 to 10 8-ounce glasses of low-sugar fluids per day. Plain water is the gold standard and the preferred beverage for hydration, but other beverages such as seltzer, decaf tea, coconut water, and lower-sugar electrolyte drinks can also promote adequate hydration. Caffeinated beverages, like coffee, tea, and colas, as well as alcohol may worsen side effects like dry mouth, so I recommend limiting those.
Foods and Drinks That Multiple Myeloma Patients Should Avoid
Valarie: Are there any specific dietary considerations or restrictions that myeloma patients should be aware of? You mentioned alcohol and caffeine, but are there certain foods or drinks that they should strictly avoid?
Abbey: A couple of limitations apply to every type of cancer. We recommend limiting red meat, such as beef and pork, to less than 18 ounces per week, and avoiding processed meats, like bacon and sausage, as much as possible.
I also recommend limiting processed foods that are high in fat, starches, or sugars, such as chips, cookies, candies, cakes, and sugary cereals. Patients should also limit sugar-sweetened beverages, like juice and soda, and avoid or limit alcohol. General guidelines recommend no more than two alcoholic beverages per day for men and one drink per day for women, but I typically defer questions regarding alcohol to the doctor.
Multiple myeloma and its treatments can weaken the immune system and increase the risk of infection, which can make patients more susceptible to foodborne illness, which we often call food poisoning. Therefore, it’s important to follow food safety guidelines while on treatment in an effort to reduce infection risk. General tips include washing your hands well, separating ready-to-eat food and raw meats, checking expiration dates, refrigerating leftovers immediately, and avoiding high-risk places, like salad bars and buffets, and high-risk foods, like raw and rare meats, runny eggs, unpasteurized dairy, sushi, and unwashed fruits and vegetables.
I also discourage the use of supplements, unless you have a deficiency or are told otherwise by your medical team. Supplements don’t offer the same benefits as eating whole foods. They’re typically not regulated by the FDA, and research tends to be limited in terms of how they may interact with treatment. For patients who are hoping to start taking a supplement, make sure to check with your doctor before doing so.
Avoiding Green Tea Supplements
Valarie: What advice can you provide about green tea? With some treatments, they say to avoid green tea on the day that you’re getting treatment and a few days after. Is there anything you can say about that?
Abbey: That’s usually discussed if they’re on bortezomib. Donna, you and I talked about this before. I believe it’s the green tea supplement that they need to avoid entirely.
Donna: It’s the high-dose green tea extract that’s available as a supplement, which is contraindicated when on a regimen containing bortezomib. I advise patients who love green tea to not consume it on treatment days. The beverage itself is fine for patients. It’s the supplement that can get patients into trouble.
Managing Weight Changes
Valarie: How can a nutritionist help patients manage weight changes? I experienced a lot of weight gain taking steroids. Some patients deal with weight loss, which can be a common side effect of treatment. What can we do from a nutrition standpoint?
Abbey: Treatment side effects, especially oral toxicities, often lead to decreased appetite and weight loss. If a patient is experiencing unintentional weight loss, I recommend having small, frequent meals every 2 to 3 hours and choosing high-calorie foods as tolerated. I will emphasize healthy fat sources, like nuts and nut butters, avocado, and olive oil, because fat contains more calories per gram than proteins and carbs. I also encourage them to make homemade smoothies and shakes, and to drink oral nutrition supplements because sometimes it is easier to drink your calories than eat them when your appetite is low.
Low-impact physical activity as tolerated can also help to increase appetite and maintain muscle mass. For patients who are struggling to eat and whose appetite has been consistently low, it could be worth asking the doctor if starting an appetite stimulant is appropriate.
On the other hand, I also see patients experience weight gain while in treatment. Oftentimes, this is in part due to steroids or fluid retention. To maintain a healthy weight, we recommend following a Mediterranean-style, plant-based diet, which emphasizes having lots of fruits and vegetables, lean proteins, whole grains, and legumes. We also emphasize watching calorie intake, monitoring portion sizes, and eating slowly and mindfully. It takes 20 minutes for your brain to get the message that your body is getting food before you stop feeling hungry. The slower and more mindfully you eat, the sooner you should realize that you’re full.
I also recommend being physically active as tolerated, specifically to engage in at least 150 minutes of moderate-intensity physical activity per week, which can equate to 30 minutes, five days per week. Moderate-intensity physical activity could be a brisk walk or biking.
Common Skin Conditions Multiple Myeloma Patients Experience
Valarie: I’ve dealt with severe dry skin and hyperpigmentation. What are some of the common skin conditions that multiple myeloma patients experience as a result of treatments?
Donna: A lot of multiple myeloma treatments are subcutaneous injections, which means they go right underneath the skin, so we often will see injection site reactions. Around the area where we administered the medication, it gets inflamed, red, and itchy.
Another side effect we see is dry skin. For patients who experience this and if I know a regimen will cause dry skin, I tell patients to use heavy barrier moisturizing creams at the initiation of therapy, especially during long winter months. Our skin dries out fairly quickly with the heat. You want to use heavy barrier creams to help retain the moisture and start at the initiation of therapy.
When we see on-target, off-tumor side effects with talquetamab, for example, the skin on the palms of the hands and the soles of the feet start to peel. These side effects can be self-limiting and we can manage them well. We use lotions, like ammonia lactate, on the area. We’ll do that twice a day and this typically will resolve in 2 to 3 weeks for patients.
We also see nails that get brittle and peel. Unfortunately, there isn’t something we can give patients to eliminate brittle, peeling nails, but we can suggest nail polish hardener lacquers to make the nails stronger so they’re less likely to break. We recommend cuticle oil around the cuticle bed. We look for signs and symptoms of infection because we don’t want to have any nail infections.
Another side effect that patients can experience is a whole-body rash or a localized rash. Depending on the size of the rash, we can manage it quite well with topical steroids or lotions. If a rash is more generalized, we’ll add a steroid taper. A course of steroids over several days will tamper down the whole-body rash, which will typically be resolved in several days.
A rash can be itchy or a patient could feel itchy in general, so we can use antihistamines for several days to help with any itchiness. If the itchiness is drug-induced and depending on the severity of the skin reaction, I’m going to hold off on the medication until these symptoms resolve before resuming therapy. If the rash is severe enough, I would consider either a dose reduction or a look at how frequently treatment is administered.
Valarie: Do you often refer to a dermatologist or treat them within your cancer center?
Donna: Early on, when we look at these new treatment modalities, we weren’t typically seeing these side effects. We work very closely with our dermatology colleagues, but we can manage these side effects quite well. I will definitely refer to our colleagues in dermatology, but for the most part, we can manage these symptoms quite well within our own practice.
Bispecific Antibodies for Relapsed/Refractory Multiple Myeloma
Valarie: Bispecific antibodies are emerging as a promising treatment option for relapsed/refractory myeloma. Donna, can you explain how these antibodies work? Have you seen an increase in this approach with patients?
Donna: This is a new and very exciting treatment modality. We had several drug approvals within the past few years with this new class of drugs. It’s similar to daratumumab where it will bind to a receptor on the myeloma cell. One arm of the bispecific antibody will grab the myeloma cell and the other arm will grab the receptor of a T cell.
Our T cells are little soldiers of our immune system. T cells will do surveillance and get rid of anything that looks bad in our system, so that includes infections and cancer cells. What a bispecific antibody does is grab onto the myeloma cell, grab onto the T cell, and bring that T cell close to the myeloma cell so that the T cell can recognize the myeloma cell and kill it
In essence, it mimics the mechanism of action of CAR T-cell therapy, but the benefit of a bispecific antibody is it’s off the shelf, so there’s no downtime unlike waiting for manufacturing CAR T cells. If I need to start a patient tomorrow, we can initiate therapy quickly. We’re harvesting the patient’s immune system to attack the myeloma cells. This is an exciting new treatment approach.
Common Side Effects Associated with Newer, Targeted Therapies
Valarie: As a patient, I’m very excited to hear about bispecific antibodies. What are some of the common side effects associated with these newer targeted therapies?
Donna: We’re activating that immune system, so the immune system gets revved up and what happens is it releases cytokines. Cytokines are little immune substances that can cause havoc. It can affect everybody’s system. Typically, when a patient gets a bispecific antibody, they’ll have a fever. This can progress to low blood pressure or difficulty with breathing, but these are so well-managed now.
The patient will typically complain of a fever, almost like when we get our flu shots where we feel a little achy and get a low-grade fever. As a provider, I know this patient is probably having cytokine release syndrome (CRS). The immune system is getting revved up, so I will tap the brakes. We have treatments that will simmer down the immune system and within 24 to 48 hours, the patient’s symptoms will resolve and allow us to continue treatment.
We try to mitigate this side effect by giving premedication, so we’ll give acetaminophen, diphenhydramine, and some steroids, but the majority of patients are going to experience CRS. Typically, we manage this inpatient, but more and more institutions are learning to manage these side effects as outpatients. We monitor patients very closely by checking their vital signs and intervening at the first sign of a fever. If a patient has a drop in their blood pressure or difficulty with breathing, we intervene very quickly.
The majority of patients will have cytokine release syndrome and to a much, much lesser extent, we see neurotoxicity. If patients have cytokine release syndrome, typically we see neurotoxicity immediately after. A patient might present with some confusion and maybe a little disoriented. They can name the hospital and their name, but instead of saying that it’s winter, they’ll tell you it’s spring.
Also, we see patients with a change in their handwriting and this can be quite drastic. Before starting these therapies, we obtain a handwriting sample and monitor the handwriting sample throughout treatment. We’ll see a change from one 12-hour shift to the next where a patient will write a beautiful sentence and then a few hours later, will scribble across the paper. This patient is experiencing a neuro event. This can be scary, but this is reversible. We manage this very well. This is self-limiting, so it won’t reappear.
Care partners are very important when we give these types of treatment because if the patient is at home, they might not understand that they’re confused. It’s very important to have a care partner to monitor the patient to see if there’s any alteration in their mental status. We manage this quite well with steroids.
Specific Strategies for Managing Cytokine Release Syndrome and Neurological Side Effects
Valarie: Are there specific strategies for managing cytokine release syndrome and neurological side effects?
Donna: To mitigate some of these potential side effects, like cytokine release and neurotoxicity, we do two things. First, we’re going to do a step-up dosing approach. We’re going to give a small dose for that first dose, a slightly higher dose for that second dose, and then the full dose. We ease the patient into that medication.
The second thing we do is to have premedication on board to mitigate the severity. Most patients are going to have cytokine release syndrome, but it’s typically mild like a fever, which we can manage quite well. Neurotoxicity happens in a very low percentage. Less than 7% of patients will have this neurological event. Step-up dosing and medications can help, but that’s something we will manage when the symptoms arise.
Dietary Changes to Help Manage Loss of Taste
Valarie: Abbey, we talked about diets and how having healthy snacks can help manage the side effects. For patients experiencing loss of taste, how can they change their diet to help manage that particular side effect?
Abbey: Taste change is one of the most common side effects that I talk about and it’s definitely one of the most difficult to manage. There’s no one-size-fits-all approach, not one miracle food that everyone enjoys, and no medication that provides total relief. It’s tough for patients to find foods they enjoy, let alone tolerate.
Something I emphasize to everyone, regardless of their experience, is good oral hygiene. Patients are often prescribed a mouth rinse, but if this doesn’t help, I recommend trying a homemade rinse made with baking soda, salt, and water, or an over-the-counter, alcohol-free mouthwash. Brushing the tongue and teeth after meals and before bed is also important to keep the mouth clean. It also doesn’t hurt to try sugar-free gums or mints to see if that improves any unpleasant taste in the mouth.
When patients describe taste changes, I hear a wide range of statements, including everything tastes too bitter, too sweet, too metallic, has no taste, tastes like cardboard, or everything tastes bad. If food tastes too bitter or too sour, I recommend adding something sweet to food, like honey or fruit. Or, if food tastes too sweet, try adding an acid, such as vinegar, lemon, or other tart, tangy, or acidic flavors. If everything tastes metallic, I recommend using nonmetal utensils and cookware, such as plastic, glass, or ceramic. Try fresh or frozen foods over canned and serving meat cold or at room temperature.
For bispecific therapies, the most common statement is everything tastes bad or has no taste. For this, I emphasize the importance of experimenting with different flavors, textures, temperatures, herbs, spices, seasonings, and sauces because you never know what might work for you. I often hear that adding acids like lemon, lime, vinegar, and tomato can make foods more enjoyable. I’ll often recommend adding fresh lemon or lime juice during and after cooking, and adding citrus to water, such as lemon packets or sliced lemons and oranges, if plain water tastes unpleasant.
Taste is the combination of not only the taste but also the smell and touch of food. If you can’t get any pleasure from taste, don’t underestimate the power of texture and smell. Soft, moist foods like oatmeal, soups, and mashed potatoes are usually more tolerable since they’re easier to chew and swallow, which means they spend less time in your mouth.
Smoothies and oral nutrition supplements are my go-to recommendations because they’re quick and easy ways to get in calories. Protein and smoothies allow a patient to experiment. Fruit is one of those foods that are often tolerable, so I recommend blending different fruits into smoothies to see if that makes them easier to get down. Animal proteins tend to be tough for patients to tolerate, so I typically recommend choosing softer animal proteins, like egg salad or fish, or marinating and cooking meats in acidic dressings or sweet juices.
Many patients report that they maintain their sense of smell despite losing their taste. I’ve had a patient say that certain foods, like cucumbers, cantaloupe, and coffee smelled good, which helped them taste good too, so it’s definitely worth experimenting in this way.
An important point that patients should take away when it comes to taste changes is that everyone is different. A recommendation that works for one person may not work for the other, so it’s important to keep trying and retrying foods because you never know what may end up working for you. Even though everyone is different, if patients are experiencing these side effects, they should know that they’re common and they’re not alone.
Coping with the Emotional Challenges of Relapse
Valarie: Let’s talk about the emotional side, such as anxiety and depression. Donna, how can patients cope with these types of challenges?
Donna: In the relapsed/refractory setting, every relapse causes a lot of anxiety and fear. When starting a new treatment, there’s a lot of fear, which can then increase anxiety and can lead to depression. Having a good support network is important for patients. We’re very fortunate in my institution to have a wonderful social work team that can help patients. We have support groups. Support groups work for some patients but not for others, so have care partners on your team to help patients through these challenging times. Each relapse becomes challenging for patients. The good news is that we do have great therapies for patients to provide support for patients to get through their therapies.
Abbey: From a nutrition standpoint, a patient experiencing side effects from treatment that affect their ability to eat can significantly impact a patient’s quality of life. It can cause patients to feel isolated because it’s hard for anyone to fully understand what they’re going through. On top of that, they might feel pressure from family and friends to eat more even when they don’t feel well and I’ve seen that cause resentment. Eating is such a social and cultural activity, and many patients feel like they don’t have a place at the table to help cope with these challenges.
I encourage patients to ask for a referral to a dietitian. Our job is to provide tips and tricks to help patients eat despite these side effects. I also encourage them to try to continue living their lives as much as possible, to go out to eat, and to attend social events when they have the energy and when it is safe for them to do so. When people are experiencing side effects and they go out to eat, they feel embarrassed or afraid to advocate for themselves. I encourage them not to hesitate to ask for their food to be prepared a certain way if it makes it easier for them to eat. If they want to bring their own food when they go out, that’s completely okay. I’m sure their friends and family would prefer to see them enjoying their meal and feeling supported, rather than feeling embarrassed or ashamed.
Valarie: As a patient and as somebody who’s been on that side of it, you have to look out for yourself. If that means taking something to a restaurant to spend time with your loved ones and be able to enjoy a meal, then do it.
Support groups are not for everyone, but there’s also one-to-one support available. You can talk with a myeloma coach or a mentor angel in various programs. Know that you’re not alone as you’re dealing with these side effects. Others are going through them as well and you always have someone to support you.
Final Takeaways
Valarie: Thank you, Donna and Abbey, for taking the time to speak with me and The Patient Story audience. Do you have any final remarks?
Donna: We have some great therapies we can offer patients. The important thing is getting patients through that therapy. There are side effects, but we’re going to help manage those so that patients can have the best possible outcomes.
Abbey: I encourage patients who are experiencing any side effects to speak up, advocate for themselves, and let their teams know. The sooner their team is aware, the sooner they can provide supportive care or treatment to help manage those side effects. If the side effects they experience make it difficult to eat, don’t hesitate to ask for a referral to a dietitian if their team has not referred them to one already.
Valarie: Yes, I agree with you wholeheartedly. Speak up and don’t suffer in silence. There’s no need for that.
Conclusion
Tiffany: Thank you again, Donna, Abbey, and our patient moderator and advocate Valarie, for taking the time to discuss mitigating side effects, especially to Valarie for sharing her myeloma experience. I am grateful that she shared her story with us. It takes a village and I know that your story, Valarie, will resonate.
It is important to be empowered so that you and your caregivers can make informed decisions about your care. That includes being educated on the latest on the side effects, mitigating those side effects, and getting the support that you need.
Part 2: Skin-Related Side Effects
Relapsed/Refractory Multiple Myeloma Patient Stories
Dr. Yvonne D., Relapsed/Refractory Multiple Myeloma
Symptoms: Severe hip pain, trouble walking due to a broken pelvis, extreme fatigue, bone pains
Treatments: Chemotherapy, stem cell transplant, radiation therapy, surgeries, CAR T-cell therapy
Michele J., Relapsed/Refractory Multiple Myeloma
Symptoms: Fatigue, anemia, persistent lower back pain, sharp leg pain during movement
Treatments: Surgery, chemotherapy, stem cell transplant
Theresa T., Relapsed/Refractory Multiple Myeloma, IgG kappa Light Chain
Symptom: Extreme pain in right hip
Treatments: Chemotherapy, CAR T-cell therapy, stem cell transplant, radiation
Laura E., Multiple Myeloma, IgG kappa
Symptom: Increasing back pain
Treatments: Chemotherapy, stem cell transplant, bispecific antibodies
Donna K., Refractory Multiple Myeloma
Symptom: None; found through blood tests
Treatments: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T-cell therapy, selinexor-carfilzomib
Sandy’s Stage 4 Non-Hodgkin Lymphoma Story
Sandy was diagnosed with stage 4 non-Hodgkin lymphoma in 2024. Her initial symptoms included persistent coughing, weakness, and shortness of breath. After weeks of worsening symptoms and ineffective treatments, an MRI revealed a large mass in her chest, which eventually led to the collapse of her left lung due to a massive tumor. A biopsy confirmed the diagnosis of lymphoma, a cancer that Sandy later described as a blessing in disguise due to its responsiveness to chemotherapy.
Interviewed by: Nikki Murphy
Edited by: Katrina Villareal
Treatment began immediately, consisting of six intense rounds of chemotherapy, each lasting five days in the hospital followed by two weeks of recovery at home. The process was physically and emotionally grueling, marked by extreme fatigue, weight loss, and hair loss. Despite these challenges, Sandy focused on mental resilience, which she believes was critical to her survival. She emphasized the importance of maintaining movement, even during the most debilitating moments.
To cope mentally with stage 4 non-Hodgkin lymphoma, Sandy turned to spirituality, meditation, and writing. She frequented a meditation garden where she found solace. Writing became a therapeutic outlet, leading to the creation of her book, Cancer Ramblings. Writing helped her process her experience and turn her pain into purpose.
Sandy celebrated her remission as a profound moment of liberation and gratitude, describing it as a second chance at life. She plans to monitor her health closely while maintaining a conscious lifestyle. She views sharing her story as a way to inspire others, providing hope and comfort to those facing similar challenges. Her key advice is to visualize a positive outcome and hold onto it as a guiding light through the darkest moments. Sandy’s enduring image was of herself running on the beach—a vision she ultimately realized.
- Name: Sandy D.
- Age at Diagnosis:
- 45
- Diagnosis:
- Non-Hodgkin lymphoma
- Staging:
- Stage 4
- Symptoms:
- Persistent coughing
- Weakness
- Shortness of breath
- Treatment:
- Chemotherapy (six rounds)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Inspired by Sandy's story?
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More Metastatic Non-Hodgkin Lymphoma Stories
Aleeshia T., Burkitt Lymphoma, Stage 4B
Symptoms: Severe fatigue, deep shoulder pain, ear pain with inflammation, abdominal and pelvic pain, bloating, early fullness, nausea, difficulty eating, inability to urinate despite feeling an urgent need, internal bleeding, delayed period/bleeding, intense whole‑body pain leading to collapse
Treatments: Surgeries (emergency laparoscopic surgery with left ovary removal), chemotherapy (R‑CODOX‑M/IVAC), immunotherapy, hormonal therapy (to protect the remaining ovary)
...
Stephanie V., Primary Mediastinal (PMBCL), Stage 4
Symptoms: Asthma/allergy-like symptoms, lungs felt itchy, shortness of breath, persistent coughing
Treatments: Pigtail catheter for pleural drainage, video-assisted thoracoscopic surgery (VATS), R-EPOCH chemotherapy (6 cycles)
...
Stephanie R., Mantle Cell Lymphoma (MCL), Stage 4
Symptom: Elevated white blood cell count
Treatments: 6 months of rituximab + ibrutinib, 4 cycles of hyper-CVAD chemotherapy
...
Sheryl B., Mantle Cell Lymphoma (MCL), Stage 4
Symptoms: (Over 15 years) Skin irritation from temperature changes, rising WBC levels, unexplained fatigue, retinal hemorrhage, hardened abdomen (from enlarged spleen)
Treatment: 6 cycles Hyper-CVAD chemotherapy
...
Shari B., Mantle Cell Lymphoma (MCL), Stage 4
Symptom: None; lymphoma discovered at unrelated doctor appointment
Treatments: 6 cycles R-CHOP, 5 cycles phase 3 trial of Velcade + Rituxan (normally for multiple myeloma), allogeneic bone marrow transplant (BMT)
...
Shahzad B., Refractory Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptom: Extreme fatigue
Treatments: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
...
Sandy D., Non-Hodgkin’s Lymphoma, Stage 4
Symptoms: Persistent coughing, weakness, shortness of breath
Treatment: Chemotherapy
...
Symptoms: Chest pain, back pain, bump on neck, night sweats Treatments: Chemotherapy, CAR T-cell therapy...
Richard P., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Relapse Symptoms: Swelling in leg, leg edema Treatments: R-CHOP chemotherapy, clinical trial (venetoclax-selinexor)
...
Paige C., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Weight loss, extreme fatigue, swollen lymph nodes in the neck
Treatment: R-EPOCH chemotherapy
...
Ashley P., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Feeling like holding breath when bending down or picking up objects from the floor, waking abruptly at night feeling “off,” one episode of fainting (syncope), presence of a large mass in the breast
Treatments: Chemotherapy, bridge therapy of chemotherapy and radiation, CAR T-cell therapy
...
Nolan W., T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL), Stage 4
Symptoms: Debilitating fatigue, flu-like symptoms without a fever, swollen lymph node under the left arm
Treatments: Chemotherapy (R-EPOCH & RICE), bone marrow transplant
...
Nina L., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy (R-CHOP)
...
Symptoms: Fatigue, weight loss, lumps in the neck and groin
Treatments: Chemotherapy, radiation, platelet transfusion...
Mike E., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptom: Persistent, significant back pain
Treatments: Surgery, chemotherapy
...
Mags B., Primary Mediastinal (PMBCL), Stage 4
Symptoms: Exhaustion, migraines, persistent coughs, swelling and discoloration in left arm
Treatment: Chemotherapy (R-CHOP, 6 cycles)
...
Luis V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Persistent cough, fatigue, unexplained weight loss
Treatment: Chemotherapy (R-CHOP and methotrexate)
...
Laurie A., Follicular Lymphoma, Stage 4 (Metastatic)
Symptoms: Frequent sinus infections, dry right eye, fatigue, lump in abdomen
Treatments: Chemotherapy, targeted therapy, radioimmunotherapy
...
Kris W., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptom: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy
...
Kim S., Follicular Lymphoma, Stage 4 (Metastatic)
Symptom: Stomach pain
Treatments: Chemotherapy (rituximab & bendamustine), immunotherapy (rituximab for 2 additional years)
...
Jonathan S., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptom: Severe shoulder pain
Treatments: R-CHOP chemotherapy, methotrexate, focal radiation, autologous stem cell transplant
...
John S., Follicular Lymphoma, Stage 4 (Metastatic)
Symptom: Swollen lymph nodes
Treatments: Clinical trial, chemotherapy
...
Jason W., Mantle Cell Lymphoma (MCL), Stage 4
Symptoms: Hives, inflamed arms
Treatments: Calabrutinib, Lenalidomide, Rituxan
...
Harjeet K., Subcutaneous Panniculitis-like T-Cell-Lymphoma (SPTCL), Stage 4
Symptoms: Persistent, high fevers; red, tender rashes on legs
Treatments: High-dose chemotherapy, allogeneic stem cell transplant
...
Anna M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptom: a rRapidly growing, painless lump on the breast
Treatment: Chemotherapy
...
Erin R., Diffuse Large B-Cell Lymphoma (DLBCL) & Burkitt Lymphoma, Stage 4
Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatments: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
...
Emily G., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptom: Pain in left knee
Treatments: Chemotherapy (R-CHOP and high-dose methotrexate)
...
Emily S., Burkitt Lymphoma, Stage 4
Symptoms: Constant fatigue, tongue deviated to the left, abscess in right breast, petechiae on legs, night sweats, nausea and vomiting, persistent cough
Treatments: Chemotherapy, stem cell transplant, immunotherapy
...
Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)
...
Cherylinn N., Mantle Cell Lymphoma (MCL), Stage 4
Symptom: None
Treatments: R-CHOP chemotherapy, rituximab
...
Bobby J., Mantle Cell Lymphoma (MCL), Stage 4
Symptoms: Fatigue, enlarged lymph nodes
Treatments: Clinical trial of ibrutinib + rituximab, consolidated chemo of 4 cycles of Hyper-CVAD
...
Barbara R., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptom: Abdominal and gastric pain
Treatments: Chemotherapy R-CHOP, CAR T-cell therapy, study drug CYT-0851
...
Ashlee K., Burkitt Lymphoma, Stage 4
Symptoms: Abdominal pain, night sweats, visible mass in the abdomen
Treatments: Surgery (partial colectomy to remove 14 inches of intestine), chemotherapy
...
Shayla’s Metastatic Colorectal Cancer Story
Interviewed by: Nikki Murphy
Edited by: Katrina Villareal
Shayla was diagnosed with metastatic colorectal cancer at 33 years old after years of experiencing unexplained digestive issues. Initially, symptoms like stomach sensitivity, exhaustion, and food intolerances were attributed to a sensitive stomach. Over time, she sought medical attention, including multiple gastroenterologist consultations but received inconclusive diagnoses. She was diagnosed with celiac disease, but despite cutting out gluten, she continued to feel unwell.
After more months of fatigue, Shayla noticed blood in her stool, which persisted for several weeks. When her husband insisted she seek medical help, a colonoscopy revealed polyps. While initially told that they weren’t cancerous, a biopsy later confirmed that one was malignant. Further tests revealed lesions in her liver and lungs, prompting additional biopsies. The lesions in her lungs were clear, but the cancer had metastasized to her liver, resulting in a stage 4 colorectal cancer diagnosis.
Her treatment plan included four rounds of chemotherapy, followed by a hepatectomy or liver resection to remove 25% of her liver. After the surgery, Shayla began her chemotherapy again, with plans for more rounds to finish her treatment. Although she initially struggled with side effects, such as hot flashes, nausea, and fatigue, her doctors adjusted her treatment plan to help her manage better. However, cold sensitivity, neuropathy, and physical weakness persisted.
Despite these challenges, Shayla remained focused on her healing and recovery, even as the emotional toll of her diagnosis began to weigh on her mental health. She shared that the isolation during recovery and the struggle with seeing her children react to her illness was particularly difficult.
Shayla advocates for others to take their symptoms seriously, stressing the rising rates of colorectal cancer in younger adults. She encourages others to seek second opinions and advocate for themselves if they’re not satisfied with their medical care. Through her experience, she has seen the importance of a strong support network and the need for proactive health care, urging others to catch cancer early to increase treatment success.
- Name: Shayla L.
- Age at Diagnosis:
- 33
- Diagnosis:
- Colorectal Cancer
- Staging:
- Stage 4
- Symptoms:
- Stomach sensitivity
- Food intolerances
- Exhaustion
- Blood in stool
- Treatments:
- Chemotherapy
- Surgery: hepatectomy (liver resection)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Inspired by Shayla's story?
Share your story, too!
More Colorectal Cancer Stories
Cora V., Colorectal Cancer, Stage 4 (Metastatic)
Symptoms: Fatigue, unintentional weight loss, blood and mucus in stool
Treatments: Chemotherapy, chemoradiation, surgeries (temporary ileostomy and reversal, liver surgeries and ablation)
Monica D., Colorectal Cancer, Stage 1
Symptoms: None; caught at a routine colonoscopy
Treatment: Surgery (low anterior resection with temporary diverting ileostomy)
Edie H., Colorectal Cancer, Stage 3B
Symptom: Chronic constipation
Treatments: Chemotherapy, radiation, surgeries (lower anterior resection & temporary ileostomy)
Shayla L., Colorectal Cancer, Stage 4
Symptoms: Stomach sensitivity, food intolerances, exhaustion, blood in stool
Treatments: Chemotherapy, surgery (hepatectomy)
Tracy R., Colorectal Cancer, Stage 2B
Symptoms: Bloating and inflammation, heaviness in the rectum, intermittent rectal bleeding, fatigue
Treatments: Chemotherapy, radiation, surgery
Paula C., Colorectal Cancer, Stage 3
Symptoms: Painful gas, irregular bowel movements, blood in stool, anemia, severe pain, weight loss, fainting spells
Treatment: Surgery (tumor resection)
Follicular Lymphoma: Latest Advances in Precision Medicine and Emerging Therapies
Dr. Peter Martin, a leading lymphoma expert at Weill Cornell Medicine, and Laurie Adami, a follicular lymphoma patient discuss the latest advancements in follicular lymphoma treatment. This conversation talks about precision medicine and emerging therapies, addressing how to manage side effects and improve quality of life, and is designed to empower patients with practical knowledge and support as they navigate their diagnosis.
Understand current and emerging options, including targeted therapies and bispecific antibodies, and how they address treatment challenges. Gain actionable strategies to manage side effects and improve quality of life. Explore how precision medicine tailors treatment plans to individual needs, including chemo-free options. Get answers to common and critical questions about follicular lymphoma. Be part of a conversation that brings the patient experience front and center to inspire hope and informed decision-making.
Thank you to The Leukemia & Lymphoma Society for their partnership. The Leukemia & Lymphoma Society is here for you with information about clinical trials, resources, and support.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
- Introduction
- What is Follicular Lymphoma?
- How is Follicular Lymphoma Diagnosed?
- Symptoms of Follicular Lymphoma
- Traditional Treatments for Follicular Lymphoma
- Bispecific Antibodies for Treatment of Relapsed/Refractory Follicular Lymphoma
- Experience with CAR T-cell Therapy
- FDA-Approved Bispecific Antibodies for Follicular Lymphoma
- Why are Bispecific Antibodies Administered in the Clinic or Hospital?
- Side Effects of Bispecific Antibodies
- Personal Experience with Side Effects
- Precision Medicine as an Approach to Follicular Lymphoma
- Long-Term Implications of Chemo-Free Treatments for Follicular Lymphoma
- Clinical Research and Follicular Lymphoma
- Fertility Preservation and Follicular Lymphoma
- Bridging the Gap Between Academic Research Centers and Community Hospitals
- Key Takeaways from ASH
- Conclusion
Introduction
Tiffany Drummond: I’m a patient advocate with over 20 years of experience in cancer research. My journey as a care partner began when my mother was diagnosed with endometrial cancer in 2014. I quickly realized the challenges of finding resources, support, and shared experiences, and now I am committed to helping others avoid similar difficulties, no matter the condition.
At The Patient Story, we create programs to help you figure out what comes next. Think of us as your go-to guide for navigating not only the cancer journey but your overall health journey. From diagnosis to treatment, we have you covered with real-life patient stories and educational programs with subject matter experts and inspirational patient advocates and guests. I genuinely am your personal cheerleader, here to help you and your loved ones best communicate with your healthcare team as you go from diagnosis through treatment and survivorship.
The Patient Story retains full editorial control over all content as always. We also thank all of our promotional partners for their support. It is because of you our programming reaches the audience who needs it. I hope you’ll find this program helpful, but please keep in mind that the information provided is not a substitute for medical advice.
I had access to great cancer centers. I went to four different big cancer centers and that’s where I was able to join clinical trials.
Laurie Adami
Laurie Adami, Follicular Lymphoma Patient Advocate
Tiffany: I have the pleasure of interviewing Dr. Peter Martin and it so happens that we have much more in common than you might think. I will also be speaking with a follicular lymphoma patient, Laurie Adami. It’s so important to get a patient’s perspective and I’m sure her experience will resonate with you and your loved ones. Let’s learn about Laurie’s journey before deep diving into the latest treatment options.
Laurie Adami: I was diagnosed in 2006. My son was in kindergarten. There was one treatment I did right away. We thought I was in remission, so I merrily went back to work, which entailed traveling internationally. Three months later, my cancer was back on the first follow-up scan. That prompted 12 years of treatment. From 2006 to 2018, I was in continuous treatment and underwent seven different lines of therapy, including three clinical trials.
The first six treatments didn’t work, but thankfully, the seventh line of treatment did. I live in Los Angeles, so I had access to great cancer centers. I went to four different big cancer centers and that’s where I was able to join clinical trials.
Dr. Peter Martin, Hematologist-Oncologist
Tiffany: Dr. Peter Martin serves as the professor of medicine and chief of the lymphoma program at Weill Cornell Medicine. He is a hematologist-oncologist who specializes in caring for patients with lymphoma at NewYork-Presbyterian Hospital. His research focus, which is very dear to my heart, is on clinical investigation of new and promising therapies. Dr. Martin, how are you doing today?
Dr. Peter Martin: It’s great to see you again, Tiffany. I don’t know if everybody else knows this, but we worked together long ago.
Tiffany: You could say how long ago. It was about 15 years ago. I used to call him Peter, that’s how far we’ve come. I’m glad to see that we both have stayed the course, which is fighting cancer and finding a cure. I know that you made great strides, so thank you for being here.
[Follicular lymphoma] typically grows slowly over months, years, or decades, and that’s why we call it indolent, which means lazy.
Dr. Peter Martin
What is Follicular Lymphoma?
Tiffany: I’m a patient advocate for many types of cancer, but for those who aren’t as familiar, can you break down follicular lymphoma? We know that it’s considered an indolent lymphoma. Can you walk us through that characteristic? What makes follicular lymphoma distinct from more common types of non-Hodgkin lymphoma, such as DLBCL or diffuse large B-cell lymphoma?
Dr. Martin: Follicular lymphoma is pretty common from the lymphoma perspective but not common from a cancer perspective. In the United States, about 20,000 people every year will be diagnosed with follicular lymphoma. Depending on your perspective, there are up to 130 different kinds of lymphoma, which is hard to keep track of. Each subtype is a little bit different biologically in how they’re defined and how they behave clinically.
Follicular lymphoma is based on the way it looks under the microscope. They look like little follicles in the lymph node. It typically grows slowly over months, years, or decades, and that’s why we call it indolent, which means lazy. I like the word lazy because it’s a lymphoma that can’t be bothered to cause problems.
Once diagnosed, we’ll often talk about the goal of treatment, which is to help somebody live a life that’s as close to the life they would live without lymphoma. It hangs around for a long time and we keep managing it and kicking the can down the road.
How is Follicular Lymphoma Diagnosed?
Tiffany: If someone is living with follicular lymphoma for years or even decades, how is it diagnosed? Do they come in for some other type of symptom that usually makes them get referred to a specialist? How does that work for a patient who doesn’t even know that they have it?
Dr. Martin: It can vary a little bit. Ultimately, to diagnose follicular lymphoma, you have to look at it under the microscope. The word lymphoma means tumors of the lymph nodes, so most of the time when we meet somebody with follicular lymphoma, they’ll have an enlarged lymph node. Typically, it’s a painless, enlarged lymph node in the neck, armpit, or groin.
It might be picked up accidentally while getting tested for other reasons, which is pretty common because follicular lymphoma is often asymptomatic. Although it’s called lymphoma, sometimes it’s not in a lymph node. It might be present in the bone marrow or some other organ, like the gastrointestinal tract or the skin. Ultimately, though, somebody has to look at it under the microscope and that’s how we make the diagnosis.
All of my doctors dismissed me. I would specifically tell them, ‘I’m very worried I have lymphoma,’ and they would say, ‘Your bloodwork is all normal, so you don’t have cancer.’
Laurie Adami
Symptoms of Follicular Lymphoma
Tiffany: Laurie, did you experience any symptoms before your diagnosis or was it something you noticed but didn’t read into it enough to get it checked right away?
Laurie: When my son was three years old, I started to get frequent sinus infections and couldn’t get rid of them. I also developed a dry eye. I was a long-time contact lens wearer and suddenly, I couldn’t wear my right contact lens. I was very tired. I had a lymph node on my neck that was concerning me and I felt something in my abdomen.
All of my doctors dismissed me. I would specifically tell them, “I’m very worried I have lymphoma,” and they would say, “Your bloodwork is all normal, so you don’t have cancer.” I told my husband that they wouldn’t listen to me and he didn’t believe me, so I took him to my appointments and he couldn’t believe how I was dismissed. He was mortified. This went on for three years.
I wanted to believe these doctors. I wanted to believe that allergies were causing these sinus infections. I was also at the age where I could be starting to get perimenopausal symptoms, so my symptoms were attributed to my hormones. It was aggravating.
I kept feeling worse and worse. The exhaustion was incredible. One of the doctors I saw said, “Laurie, you’re president of a software company. You’re traveling internationally. You’re traveling a week a month. You’re running a household. You have a young boy. I’m exhausted just listening to what you do.”
Finally, someone I knew referred me to a diagnostician who took me seriously. I went in to see him and explained everything. I said, “People think this node is from allergies.” He said, “Did you get tested for allergies?” I said, “Yeah, and there was nothing.” He said, “Okay, that doesn’t make sense then.”
I explained the possibility of a hernia and he said, “It could be, but Laurie, we don’t guess. We have CT machines and I’m going to send you to a hernia specialist. We’re going to do imaging.” That week, they imaged me and it was scary because I was supposed to go in for a simple imaging. They expected to find a hernia and I wasn’t supposed to have contrast. Suddenly, this lady brought in the bottles of contrast because they had to get a better image. My heart began to sink as I was sitting there.
Two days later, on Good Friday of 2006, the doctor’s office called and said I needed to come in. My mother and brother were in town for the Easter weekend, but they didn’t tell me to bring anyone, so I went by myself and they told me I had either lymphoma or a mesenchymal tumor. The imaging also detected lesions on my lungs, so he said, “You may also have lung cancer.” That’s when I found out that I had some type of cancer.
I knew a little bit about lymphoma because when I had this node and I put in my symptoms online, lymphoma kept coming up. But 90% of lymphoma patients are diagnosed at stage 4 because most patients don’t have symptoms. I did, but I didn’t have anybody listening to me, so they dismissed my concerns.
As it turned out, it was good that they didn’t listen to me because the only treatment that existed at the time was a monoclonal antibody, multi-chemo, prednisone treatment. If I had it earlier, it wouldn’t have worked and I would have had nothing else.
I had autologous stem cell transplant as an option, but it was not a good option, especially if you relapse after the first line of chemo and monoclonal antibody treatment. In a way, it ended up being a blessing because, by the time they were pushing me to do the transplant, I managed to find a trial of a histone deacetylase (HDAC) inhibitor, which is what I did as my second line of therapy.
Dr. Martin: Oftentimes, somebody will say, “I’ve had this lump for five years and finally my friend told me that I should have it looked at.” That’s a testament to how it behaves. It hangs around for a long time, so people often get accustomed to it being there before they decide to bring it to somebody’s attention.
Traditional Treatments for Follicular Lymphoma
Tiffany: Before we get into the novel approaches, can you walk me through the traditional treatments for follicular lymphoma? What factors determine a more or less aggressive approach in your practice?
Dr. Martin: The job of a hematologist-oncologist is to learn as much as we can about the lymphoma and that’s changing all the time as we get more sophisticated. We recognize that this lymphoma isn’t happening in a petri dish in a lab somewhere; it’s happening in a real live person, so we have to learn as much as we can about that person. That includes not only their medical issues but also all of the things that are important to them. What are their values? What is their support network like? There are 8 billion of us on the planet and we’re all different, so there’s even more heterogeneity among people than there is amongst the 130 different lymphomas.
We bring all of that information together and come up with a plan that makes the most sense for that person. Treatments are constantly evolving and we have new treatments available today that we didn’t have in the past. In general, the goal of treatment is to try to give somebody the life that’s the closest to the life that they would have if they didn’t have lymphoma.
We have to learn as much as we can about that person. That includes not only their medical issues but also all of the things that are important to them.
Dr. Peter Martin
Approaches can vary. In some cases, you say, “Look, this is not causing you any problems. It’s not going to cause problems hopefully for a long time — on average, multiple years — and so we watch it and it sits there.” That can be a little bit counterintuitive. In the Western world, you want to catch and deal with cancers early. That’s certainly the case for breast cancer, lung cancer, or colon cancer, so the initial discussion around follicular lymphoma can be a little bit awkward sometimes. You say, “Oh, great. No problem. Let’s do nothing about it.” But it’s a proven strategy to help people live a good quality of life without dealing with any of the side effects of treatment.
On the other end of the extreme, we might propose using more aggressive therapies, including chemotherapy if we need to shrink something quickly and help them feel better. There are options in the middle where we use immunotherapies that may shrink the tumor, may help somebody to feel better, and may prolong the time between that and other kinds of therapies by months or years. There are vast options and more new treatments are being approved.
Bispecific Antibodies for Treatment of Relapsed/Refractory Follicular Lymphoma
Tiffany: Let’s talk about some of the data that came out of the 66th American Society of Hematology (ASH) annual meeting. Bispecific antibodies are changing the way that we look at and treat cancer, especially when it comes to immunotherapy. What benefit may they contribute to our relapsed/refractory follicular lymphoma patients?
Dr. Martin: Bispecific antibodies are a type of monoclonal antibodies. Antibodies are proteins that our immune system makes to fight against bacteria. A few decades ago, clever people figured out how to make antibodies that would fight not against infections but against cancer. That moved quickly from the lab to people and, for the past 25 years, has revolutionized the way many cancers are managed. It started with lymphoma. We’ve been leading the way for a long time.
Bispecific antibodies are a natural evolution of trying to come up with ways to make this kind of immunotherapy work better. They’re very cleverly engineered. They bind to tumor cells the same way an antibody would bind to a virus or bacteria, but in addition, they also bind to other parts of our immune system called T cells and they activate them. When those T cells are activated, they secrete chemicals called granzymes and perforins that poke holes in cancer cells and cause them to die. This is a clever way of using our immune system to kill cancer cells and it does it remarkably effectively.
The vast majority of people will have not only responses to this treatment, meaning the tumor shrinks, but in many, if not most, cases, the tumor will disappear on a CT scan. It might be completely gone — we’ll find out as the years go by — but it disappears on a CT scan in a lot of people.
Bispecific antibodies are attractive in that it’s a non-chemotherapy approach and it’s a proven form of immunotherapy. It’s an evolution of the kinds of immunotherapies that we’ve been using in the past and it’s more effective.
The other thing that’s nice about it is that it’s off the shelf, so you order it from a pharmacy. It doesn’t have to be engineered specifically for each patient the way something called chimeric antigen receptor T cells or CAR T-cells have to be.
I did a monthly infusion of a third line monoclonal antibody… but as soon as I stopped, it came back, so it was a race against time.
Laurie Adami
Experience with CAR T-cell Therapy
Tiffany: Laurie, I believe you’re familiar with CAR T-cell therapy. How was that experience and where are you currently in your cancer journey? Are you also familiar with bispecific antibodies? I would love to get your perspective on this immunotherapy versus CAR T-cell therapy.
Laurie: I heard about CAR T-cell therapy six years before I could get it. I heard about it in 2012 when I attended an LLS event where they showed Emily Whitehead’s film. I went to my college that week and asked about it because I didn’t know about CAR T-cell therapy. He said, “They’re not trying it for follicular lymphoma. They’re doing it for more aggressive tumors. We have to wait. You’re on a PI3 kinase inhibitor. We’re going to ride this horse.” That took me through 2016 when the cancer finally outsmarted that pill.
A new monoclonal antibody had been approved. It was a nine-month course, so I did a monthly infusion of a third-line monoclonal antibody, obinutuzumab. It immediately started shrinking my tumors again, but as soon as I stopped, it came back, so it was a race against time.
In 2018, my tumors were huge. While I was out hiking in April, my oncologist called and said, “We finally got the trial for follicular lymphoma. It’s going to open at UCLA. We’re going to have five patients enrolled in the first cohort and you will be patient number one.”
When you’re in a clinical trial, you have to review the paperwork to sign. It discloses all the side effects of patients in the phase 1 study. This was a phase 2 study, so it wasn’t completely bleeding edge. Then they have to do biopsies and imaging. They had to make sure I didn’t have anything in my brain. They weren’t allowing patients with central nervous system involvement to get CAR T-cell therapy because they didn’t know how it would work and what it would do. Now they know, so they do it for people with involvement in the central nervous system.
It was amazing because, within days, the tumors were shrinking.
Laurie Adami
I had a sinus infection again because my cancer was coming back. My oncologist said, “You can’t get CAR T-cell therapy with an active infection,” so I went to my ear, nose, and throat specialist. I explained, “I need to get this treatment, but I can’t do it with an active infection.” He called his scheduler and said, “Clear the schedule tomorrow. I have an urgent patient.” They operated on me the following day and it ended up being a major surgery with general anesthesia because there were so many blockages everywhere. He cleaned me out and got rid of the sinus infection so I was good to go.
About a month before you get your cells back, they do apheresis. They harvest your T cells. It’s a very easy process that takes half a day outpatient. The courier ships your bag to the CAR T company, which happens to be down the highway in LA. I remember the courier came to pick it up in the apheresis center and I said, “Do not let my cells fall out on the freeway. Please make sure the van door is tightly sealed.” He said, “Don’t worry. We’ll get it there, Laurie. No problem.”
CAR T-cell therapy is about an 18-day process. They shaved off a couple of days and shortened it even more, so the patient didn’t have to wait that long. They take your cells, put the target on them, and grow them in the lab. They harvested about a million cells from me and after they became CAR T cells, there were a billion cells that would get infused.
Before you get your CAR T cells, you go through lymphodepleting chemotherapy, which is chemo light compared to the 18 cycles that I had. It makes room in your bloodstream for you to get your CAR T cells back and gives them room to expand. After three days of lymphodepleting, you get the cells back on day zero, your CAR T birthday. It was amazing because, within days, the tumors were shrinking.
FDA-Approved Bispecific Antibodies for Follicular Lymphoma
Tiffany: Are bispecific antibodies available to patients outside of a clinical trial? Is there anything we can use now straight from a pharmacy without having to go to our investigational one?
Dr. Martin: Two bispecific antibodies are approved for follicular lymphoma: mosunetuzumab and epcoritamab. There probably will be a third one very soon called odronextamab. They’re all pretty similar in terms of how they work and the proteins they target on the surface of the B cells.
There are more coming that we will continue to see in lymphoma and across all cancers. They’re all administered in the clinic or the hospital, so these are not pills that you take at home the way a lot of cancer therapy has transitioned. They’re administered either through an intravenous injection or a subcutaneous injection.
Why are Bispecific Antibodies Administered in the Clinic or Hospital?
Tiffany: Is there a reason for that? Is it because we want to watch for any side effects immediately or is it because of the toxicity and potency of the drug itself?
Dr. Martin: A little bit of both. These are big proteins. They have to be administered by needle because they have to bypass the gastrointestinal tract.
There are some side effects. The side effects that somebody might experience during the infusion are minimal. That said, somewhere in the range of hours to even a couple of days after the treatment, there can be cytokine release syndrome, which happens in up to a third of patients getting these antibodies.
Cytokine release syndrome sounds complicated, but… it’s very manageable.
Dr. Peter Martin
Cytokine release syndrome sounds complicated, but it’s what I described. T cells secrete these chemicals, the same chemicals you experience when you have an infection, including fever, feeling rundown, muscle aches, and what you feel when you have the flu. But in some cases, it can be a little bit more severe. Not very common, but it can happen. We’re often able to manage it with acetaminophen. Sometimes we have to use steroids, like dexamethasone, and rarely do we even have to use other medications.
Because of that, there’s very careful preparation at the facility level, the physician and nursing level, and the patient and caregiver level. It’s all about preparation, helping people to know what to recognize and what to do if something like that happens. It’s very manageable, but it’s a little bit more complicated than taking a pill.
Side Effects of Bispecific Antibodies
Tiffany: Patients are concerned about side effects in general and we know when it comes to cancer, a lot of these drugs are toxic, even though we’ve drastically reduced that over time. In your experience, how do bispecific antibodies differ from traditional chemotherapy and CAR T-cell therapy in terms of side effects? Are they more severe, less severe, or not as long? And does the impact on quality of life determine which avenue they want to take for their treatment?
Dr. Martin: It’s not such a straightforward question to answer because everybody’s different and everybody’s situation is different. Where better-tolerated treatments might be appropriate for one person, more aggressive treatments with more side effects might be appropriate for another person. In most cases, we have options among all of these and oftentimes, there are no wrong or right answers. We try to pick one, but in some cases, we’re driven to say this is the right answer. It’s the job of the whole team — the patient, the caregiver, the physician — to try to pick the right treatment.
Where better-tolerated treatments might be appropriate for one person, more aggressive treatments with more side effects might be appropriate for another.
Dr. Peter Martin
Bispecific antibodies are straightforward in that they can be administered in an outpatient setting or at least partly in an outpatient setting. They don’t cause a lot of the side effects of traditional chemotherapy, like hair loss and nausea, which aren’t major issues with a lot of chemotherapy that we use, but we’re understandably scared of them. Hair loss is a particularly interesting one in that it’s a signal to the rest of the world about something you’re undergoing privately. It tells them publicly that something’s going on, so I understand why that’s not attractive.
Personal Experience with Side Effects
Tiffany: It’s important to get a patient’s perspective regarding side effects. Laurie, can you give us an overview of your experience with side effects? Were there any that you found particularly taxing on you or that affected your quality of life? Were you able to manage your symptoms relatively well?
Laurie: It was a mixed bag. With the first chemo, I lost my hair and got mouth sores. With the second treatment, which was a targeted therapy, I was very, very fatigued. I also lost my hair. They told me that it wasn’t from the trial drug, but when I dug into it, I saw a very small percentage of patients lost their hair.
White counts typically would get depleted, which made me prone to getting infection… so I was a real early adapter of mask-wearing.
Laurie Adami
My fourth treatment was radioimmunotherapy and I had very, very low counts for a long time. My platelets dropped. I never had to get an infusion of platelets, but I had to go in every day to get it checked. I had to be very careful not to fall because I had no clotting ability with low platelets.
White counts typically would get depleted, which made me prone to infections, so I had to be careful. When I went back to work after my first chemo treatment in 2006 and had to start traveling again, I asked my oncologist, “Is it okay if I travel to New York, Boston, London, etc.?” She said, “Yes, but you have to wear a mask,” so I was a real early adapter of mask-wearing.
Precision Medicine as an Approach to Follicular Lymphoma
Tiffany: Something that was also talked about at ASH (American Society of Hematology annual meeting) in general is the idea of precision medicine and how it’s a relatively new approach to cancer treatment. Is precision medicine being used as an approach to follicular lymphoma? What are your thoughts on precision medicine?
Dr. Martin: It depends how much of a fan of science fiction you are. To some degree, we’ve always practiced precision medicine. What do I know about this lymphoma? What do I know about this person? What do I know about all of the different treatment options? How do I put it all together?
Over time, treatments are becoming more specific in some ways, so you can apply them under certain circumstances. Our ability to understand more about cancer changes with new technologies. We’ve always been trying to personalize medicine in the sense of sequencing the entire genome of a cancer cell and saying this is the right treatment for you according to lab testing, but we’re not there yet for follicular lymphoma.
Over time, treatments are becoming more specific in some ways, so you can apply them under certain circumstances.
Dr. Peter Martin
There’s one treatment, a pill called tazemetostat, which has modest activity but is generally well-tolerated. It’s an inhibitor of an enzyme called EZH2, which is mutated in about 20% of people with follicular lymphoma. It’s approved for the treatment of people with mutated EZH2 enzyme, but it’s also approved for people with wild-type unmutated EZH2 if they don’t have other treatment options. Realistically, it works reasonably well in both groups, so it’s a precision medicine approach, but you don’t necessarily have to have the mutation to use it. That’s the closest we have right now, but this is coming. It will continue to change and there are other examples where we’ll see more of that.
Long-Term Implications of Chemo-Free Treatments for Follicular Lymphoma
Tiffany: I know you can’t read the future, but what do you think the long-term implications may be for follicular lymphoma, specifically for chemo-free treatments? What I hear a lot is that I’m living with cancer, not that I have cancer. What do you see with that in terms of chemo-free treatments?
Dr. Martin: People with lymphoma want treatments that work and are well-tolerated. Whether you call them chemotherapy, immunotherapy, or something else, if it works and is well-tolerated, that’s already great. They also want options that conform to where they are in life.
Different treatments that work in different ways have the advantage of potentially allowing us to mitigate some of the short-term and long-term issues that can come up.
Dr. Peter Martin
Every year, we have more and more options available to us. We always try to pick the right treatment for that moment, thinking about the here and now. We also try to think about how what we do today impacts what the patient’s life is going to be like 10 to 20 years from now.
More than chemotherapy, these new treatments potentially have a lesser impact on the body in the longer-term setting. With multiple lines of chemotherapy back to back, people will get through them for decades without major issues but over time, it catches up. Different treatments that work differently have the advantage of potentially allowing us to mitigate some of the short-term and long-term issues that can come up. Having more options is always better.
Clinical Research and Follicular Lymphoma
Tiffany: Both of our backgrounds are heavy in research. I like to talk about clinical research anytime I do a program to get the point out there because oftentimes, people think that a clinical trial is one of their last resorts, they’re not at least getting a standard treatment, or they’re not getting treated at all for their cancer. I know that at Weill Cornell Medicine, you have a robust research program. What does your research program look like and how receptive are your patients to joining clinical trials?
Dr. Martin: I appreciate your disclosure that we both come from a research background, so people should take that into account knowing that we have those biases. The number one barrier to entrance into clinical trials is not patient refusal. It’s because they don’t know that there’s an opportunity. The real burden is having physicians let patients know that this is something that they could do, not patients saying that it’s something they don’t want to do. It’s us. We’re probably the bigger part of the problem.
There are different reasons why somebody might want to participate or not want to participate in clinical trials. They offer new opportunities to access new treatments that might be more effective or better tolerated. In some cases, that might be when other treatments have been exhausted, but in a lot of cases, it might be when a new opportunity has already been well-studied in another setting and you’re looking to apply it in a new setting. There are also some downsides to research, a little bit more of a hassle often.
Tiffany: I’m a proponent of decentralization. Patients can get labs locally without having to track things like that. I’m a little biased when it comes to clinical research, but I do think it has so many benefits, so I’m always promoting it.
Dr. Martin: It can’t be understated that historically, there have been a lot of questionable research practices that were not always in the interest of participants. The medical community on the whole has tried to grapple with this. We’ve got multiple committees, like hospital and patient advisory committees, which try to minimize that and make research as ethical as possible.
There are going to be some people who are distrustful, which is their prerogative. I’m never the person who’s going to twist somebody’s arm to participate in a study that they’re not comfortable with, but I’m also not going to shy away from proposing a study because I’m afraid that somebody is not going to go for it. That’s not respectful to their autonomy either. You propose every option that exists and talk about the pros and cons then people will decide what’s right for them.
Tiffany: Absolutely. I always say too that we don’t give patients enough credit. We always talk about patient education. They need to know that clinical trials are out there and they’ll be more than willing to make that informed decision themselves.
Fertility preservation is also a highly charged issue, but it’s like research: if you don’t talk about it, people don’t have the opportunity to consider it.
Dr. Peter Martin
Fertility Preservation and Follicular Lymphoma
Tiffany: Something that is less talked about in general when it comes to cancer is fertility preservation. An abstract I saw at ASH talked about fertility. For younger patients with follicular lymphoma, does that discussion come up? From what I saw from the abstract, a lot of patients don’t bring it up. They don’t want to discuss it. What has your experience been in terms of having a fertility discussion with your follicular lymphoma patients?
Dr. Martin: Fertility preservation is also a highly charged issue, but it’s like research: if you don’t talk about it, people don’t have the opportunity to consider it. It’s important from the physician’s perspective to ask people about where they are and what they’re thinking about, but it’s also something that patients should advocate for themselves if it’s something they’re thinking about.
In general, follicular lymphoma happens as we get older, but a significant number of people get follicular lymphomas while they are younger and some of those may be considering having children in the future. We’ll get away from the reasons why somebody might choose to have or not have children in the setting of cancer; that’s a whole other complicated discussion.
It needs to be discussed early so that we can think about all of the treatment implications now and longer term, and how we sequence things.
Dr. Peter Martin
Many big hospitals, including Weill Cornell Medicine and NewYork-Presbyterian, have fertility teams that help people consider all of their possible options and how to preserve fertility. Fortunately, even the chemotherapy regimens that we typically use in follicular lymphoma don’t have a major impact on fertility and a lot of the newer treatments have no impact on fertility. The caveat is that you don’t necessarily want to be treating the lymphoma when somebody’s pregnant, although that becomes necessary in many cases and, depending on the treatments used, it often turns out to not be a problem either. It needs to be discussed early so that we can think about all of the treatment implications now and longer term, and how we sequence things.
Tiffany: Thank you for saying that. That’s a conversation you want to have whether you are considering children or not. If you’re younger and considering children, advocate for yourself. If your physician doesn’t bring it up, don’t be afraid to bring it up.
Bridging the Gap Between Academic Research Centers and Community Hospitals
Tiffany: In my experience talking to patients, they don’t get their diagnosis until after they see their primary care physician or go to the emergency room for something different. Because you’re from a large research center, you have multidisciplinary teams, which many people don’t have. They could be going to their community clinic. Patients may not know to go to an academic research center because they haven’t been referred to a specialist. Do you work with any community clinicians or community hospitals? What are your thoughts on working with community doctors to bridge the gap?
Dr. Martin: Even in New York where we have multiple academic medical centers, the majority of people with cancer are managed outside of those academic medical centers, so that’s a reality that we have to acknowledge. I also work in Brooklyn a couple of days a month. People must have access to medical care in their community.
We have to bring better medical care to the communities that people live in rather than vice versa.
Dr. Peter Martin
It took me a few years to come to this conclusion, which is embarrassingly slow, but it’s probably not fair to expect people and their caregivers to travel a couple of hours to see somebody when they have access to medical care in their community. We have to bring better medical care to the communities that people live in rather than vice versa. There are a lot of excellent oncologists practicing in communities and that’s where the majority of people can and probably should receive their care.
One caveat I’ll say is that all of cancer is becoming increasingly complicated, so I don’t think that people should feel uncomfortable seeking a second opinion. I have friends who work in community medicine throughout the whole tristate area in New York and I work with them and help them to manage their patients. Telemedicine has made that easier as well.
This is where patient advocacy comes in. You have to advocate for yourself and speak up about it. If your physician is uncomfortable with that, that might be a sign that they’re thinking about more than your best interests. You’ll find that almost all academic oncologists will encourage second opinions. I certainly do that and help arrange them when I can.
It comes down to a balance. What do you get out of it, what do you have to give to get that benefit, and is it worth it?
Dr. Peter Martin
Key Takeaways from ASH
Tiffany: The ASH annual meeting is a big conference. Was there anything for you that stood out?
Dr. Martin: Bispecific antibodies are going to be a major part of treatment for follicular lymphoma. Exactly how they fit in, which line of therapy, and which combinations get used is interesting to think about. They’re not going anywhere for a while, so that’s pretty cool.
Another interesting study that came out was a late-breaking abstract looking at tafasitamab combined with lenalidomide and rituximab. This was a randomized controlled trial that showed that the addition of tafasitamab to lenalidomide and rituximab improved time to progression. Effectively, it doubled it compared to lenalidomide and rituximab, which is probably one of the more common second or third-line treatments for follicular lymphoma, so that’s a pretty significant benefit.
In some ways, it’s a no-brainer to say that’s something we should do. On the other hand, tafasitamab is a little bit of a hassle. People have to come into the clinic frequently for it, so it’ll be interesting to see where this plays out everywhere. I don’t necessarily know how I’m going to use that information. Again, it comes down to a balance. What do you get out of it, what do you have to give to get that benefit, and is it worth it? But it’s a strikingly positive trial.
Tiffany: I’m going to be following that trial as well.
Conclusion
Tiffany: Thank you so much for this engaging and insightful conversation. I always learn something on the other end of these educational programs.
Dr. Martin, thank you for taking the time to speak with us at The Patient Story. It was so good to catch up with an old colleague and know that we both have remained dedicated to improving cancer care and finding a cure. I’m optimistic about the future as long as we have physicians and researchers around like Dr. Martin.
Laurie, thank you for sharing your story. Lived experiences are very personal and I’m forever grateful to patients who are open and transparent because I believe that it helps the next person and the next patient.
It’s so important to be empowered so that you and your caregivers can make informed decisions about your care. That includes being educated about the latest treatment options for your cancer.
Thank you to The Leukemia & Lymphoma Society for their partnership. The Leukemia & Lymphoma Society is here for you with information about clinical trials, resources, and support.
Follicular Lymphoma Patient Stories
Tawanna T., Follicular Lymphoma, Stage 3
Symptoms: Incidental finding during pre-kidney donation scan
Treatment: Watch and wait/active surveillance
Laura C., Follicular Lymphoma, Stage 4 (Metastatic), Grade 1 to 2; Papillary Thyroid Carcinoma
Symptoms: Incidental finding after hysterectomy (follicular lymphoma), thyroid nodule detected on imaging (papillary thyroid carcinoma)
Treatments: Immunotherapy (rituximab and lenalidomide or R² regimen), surgery (thyroidectomy)
Hayley H., Follicular Lymphoma, Stage 3B
Symptoms: Intermittent feeling of pressure above clavicle, appearance of lumps on the neck, mild wheeze when breathing and seated in a certain position
Treatments: Surgery, chemotherapy
Laurie A., Follicular Lymphoma, Stage 4 (Metastatic)
Symptoms: Frequent sinus infections, dry right eye, fatigue, lump in abdomen
Treatments: Chemotherapy, targeted therapy, radioimmunotherapy
Michelle’s Stage 2 Non-Hodgkin Lymphoma Story
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
Michelle is a survivor of stage 2 primary mediastinal large B-cell lymphoma (PMBCL) non-Hodgkin lymphoma. In her early thirties, she began experiencing symptoms such as neck pain, which she initially dismissed as a pulled muscle. This was around the anniversary of her mother’s passing from stomach cancer, and Michelle felt a growing sense that something was wrong. Following a series of inconclusive medical exams, an x-ray ultimately revealed a large tumor in her chest, leading to her diagnosis of non-Hodgkin lymphoma. Michelle’s diagnosis and subsequent journey marked a significant and transformative chapter in her life.
The discovery of the tumor stunned and terrified Michelle, particularly given her recent experience losing her mother to cancer. Genetic testing revealed no hereditary links to her illness, suggesting it was likely environmental, further compounding her sense of the unknown. Her treatment plan included 6 rounds of intensive chemotherapy, which involved 5-day hospital stays on a continuous drip. The treatment was effective but came with a host of side effects, including severe nausea, fatigue, appetite and weight loss, and hair loss, which further traumatized Michelle. She recalls how losing her hair and eyebrows created a “loss of identity,” as she struggled to recognize herself. Her physical transformation added to the emotional toll, which was exacerbated by continuing to work full-time.
Ringing the bell at the end of Michelle’s successful chemotherapy treatment marked the start of a difficult recovery journey rather than closure. She found that, contrary to popular belief, the end of treatment brought a new set of challenges: trauma from the experience, persistent health issues from chemotherapy, and anxiety about recurrence. Additionally, her body struggled to absorb nutrients due to chemotherapy’s impact on her digestive system. Despite these challenges, Michelle committed herself to her recovery, focusing on nutrition and mental well-being.
This experience led Michelle to change her career path, eventually becoming a certified integrative nutrition health coach to support other cancer survivors in recovery. She emphasizes that recovery is an ongoing process, requiring tools to manage stress, anxiety, and long-term side effects like lymphedema and scar tissue.
Michelle has found purpose in helping others navigate the post-treatment journey, hoping to bridge the gaps in aftercare support. Through her own trials and transformations, she has emerged with a renewed sense of identity and dedication to holistic health, embracing the perspective and purpose she found on the other side of her battle with cancer.
- Name:
- Michelle P.
- Diagnosis:
- Primary mediastinal large B-cell lymphoma (PMBCL) non-Hodgkin lymphoma
- Staging:
- Stage 2
- Initial Symptom:
- Severe neck pain
- Treatment:
- Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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Related Cancer Stories
More PMBCL Non-Hodgkin Lymphoma Stories
Lauren D., Primary Mediastinal (PMBCL)
Symptoms: Dry cough, extreme fatigue, trouble breathing, swollen and discolored left arm, lump under the arm
Treatment: Chemotherapy
Daniella S., Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 2
Symptoms: Prolonged cough; low-grade fever; night sweats
Treatments: Chemotherapy (R-EPOCH), radiation, CAR T-cell therapy
Stephanie V., Primary Mediastinal (PMBCL), Stage 4
Symptoms: Asthma/allergy-like symptoms, lungs felt itchy, shortness of breath, persistent coughing
Treatments: Pigtail catheter for pleural drainage, video-assisted thoracoscopic surgery (VATS), R-EPOCH chemotherapy (6 cycles)
Stephanie Chuang
Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
Michelle’s Recurrent Stage 1 Bladder Cancer Story
Interviewed by: Taylor Scheib
Edited by: Katrina Villareal
Michelle’s experience with recurrent stage 1 bladder cancer started with intermittent blood in her urine, which led to multiple urgent care visits, where she was initially misdiagnosed, and eventually a diagnosis of papillary urothelial carcinoma. Upon diagnosis, she underwent TURBT surgery to remove the tumor and then chemotherapy.
Despite multiple rounds of chemotherapy, Michelle’s cancer recurs within three to six months after stopping treatment. Her doctor suggests ongoing monthly maintenance chemotherapy, but she negotiates for less frequent sessions due to the harsh side effects. She became vigilant about recognizing symptoms of recurrence, helping her manage the chronic nature of her cancer.
Facing the possibility of losing her bladder, she expresses a preference for an Indiana pouch, influenced by her friend’s experience and her desire for a better quality of life. She has already undergone surgery to improve her chances of adapting to the Indiana pouch, demonstrating her proactive approach to managing her health.
Michelle emphasizes the importance of self-advocacy in medical care, seeking multiple opinions, and making informed decisions. She acknowledges the emotional toll of living with cancer and stresses the importance of mental health care and self-care.
- Name: Michelle R.
- Age at Diagnosis:
- 43
- Diagnosis:
- Bladder Cancer
- Staging:
- Stage 1
- Symptoms:
- Irregular occurrences of seeing streaks of blood in urine
- Specific type of pain when bladder is full
- Unexplained weight loss
- Urinary urgency
- Malaise
- Fatigue
- Treatments:
- Chemotherapy: gemcitabine
- Surgery: transurethral resection of bladder tumor (TURBT)
I had been experiencing some streaks of blood in my urine… It was very random and not consistent at all.
Introduction
I live near Atlanta, Georgia. I’m a mother to an adult son and an auntie to my nieces and nephews. I have two brothers and a sister. I’m a genetic genealogist. If I’m not working my full-time job, I’m working my side business, Bless Your Vibes LLC.
I have recurrent stage 1 non-muscle-invasive bladder cancer (NMIBC). I’ve had nine recurrences, countless surgeries, and chemotherapy. As long as I catch it before it invades the muscle, I’ve been told I can deal with this for the rest of my life.
Pre-diagnosis
Initial Symptoms
I had been experiencing some streaks of blood in my urine. It would happen for a day or two and then nothing for a month, and then it would happen again. It was very random and not consistent at all. I already had a hysterectomy several years prior, so I knew it wasn’t related to that. I didn’t have any pain nor symptoms of a urinary tract infection, so I immediately thought about kidney stones.
Going to Urgent Care
When I went to urgent care, they did a culture and said, “You don’t have any infection, so it’s probably kidney stones. We’re going to give you antibiotics and send you on your way.” I went to urgent care a total of four times from June 2017 to February 2018.
She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding.’
The last time, I did a televisit. I knew they were going to give me antibiotics because it was the same old story, so I planned to call them during my lunch break. The doctor I spoke with during my televisit was more thorough than any other doctor I’ve ever had in my life.
She asked me questions and didn’t allude to any infection or kidney stones. She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding. Don’t say ‘blood without pain.’” She stressed that to me for whatever reason.
Seeing a Urologist
The urologist still didn’t indicate anything. They said, “We’ll try to figure out what’s going on.” I had a CT scan and some urine tests, but that was about it.
Diagnosis
Getting the Diagnosis
The urine test results came back through my patient portal and said I was positive for papillary urothelial carcinoma. I knew what carcinoma was, but I didn’t know what papillary urothelial meant. I panicked. It was Friday afternoon and everybody’s gone. The only person I told was my boss at work because I had to leave early.
First thing on Monday morning, I called the office and left a message. They called back and said, “We can’t tell you anything. You need to come in to see the doctor.” I couldn’t go in until later that week, so I had to sit with it for a whole week.
When I went in, the doctor was so matter-of-fact and cold. He started talking about treatment. I said, “Stop. Do I have cancer?” He looked at me like I should already know. I was numb. He said, “Based on the CT scan, it looks like there’s a large mass. Normally, we would go in with a scope and then proceed with surgery. But since we know that it’s cancer, can we bypass the scope and go into surgery?” I said yes because I wanted this out of me, so he scheduled it for two weeks after.
I had one friend… She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me.
Treatment
Discussing the Treatment Plan
With bladder cancer, you have high-grade or low-grade, muscle-invasive or non-muscle-invasive. My doctor pulled out a treatment chart and it showed everything. It was pretty clear-cut. It showed the schedule of treatment, which starts from removal or transurethral removal of bladder tumor (TURBT), and then it goes through the surgeries and the types of chemotherapy.
Preparing for Surgery
I remember trying to prepare myself. I was freaking out because up until the night before, I had no ride to my surgery. My son didn’t have his license yet and all of my friends worked. I didn’t have any family to help. I literally had no one. I started calling people that I casually knew and nobody stepped up.
Then I had one friend who I called and I was telling her about it when she said, “Why didn’t you ask me?” I didn’t even think about it because she’s disabled and she turned out to be the one who would step up. She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me. It humbled me. I didn’t even know then all the friendships that I was about to lose over this, but from back home, she’s the only friend I have left. I’ve lost all of them.
I went into surgery and at the time, I felt like I had a lot of people depending on me, so I told the doctor, “I’m not just another patient. Treat me well. Do me right because I have a lot of people who depend on me.” I felt he was offended by that because he said, “I treat all my patients the same.” He was very dry.
I asked, “What’s the best-case and worst-case scenario?” He said, “Best-case scenario is I get it all, you go home today, and you rest. Worst-case scenario is you wake up and have a bladder bag.” He told me this right before going in and I was in complete shock. I couldn’t do anything else but pray.
I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me.
Surgery
After surgery, my friend was the first person to greet me coming out. She was in the recovery room and as I was waking up, I felt that he got it all and I was going home. I believed it in my head. After I got more coherent, I asked the nurse, “Did he get it all?” And she said yes.
I went home to recover, took the next day off, and went back to work the following day. It was like I had cancer and then I didn’t have cancer in that short time. I didn’t know at the time that it was going to happen nine more times over 6 ½ years.
One of the first things this doctor told me was, “I have patients who have been coming to me for 20 years. I go in and get it out, and they go about their way for 20 years.” At first, I was upset that he said that, but later, I was glad because that prepared me. He indicated that it was going to be normal to keep coming back.
Not every case is chronic, but I like to know things because I like to be prepared. It helped me put it into my head that I’m going to have to deal with this. On one hand, it helps me. But on the other hand, I don’t feel like I’ll ever have that winning moment. It’s going to be a lifetime thing to deal with.
Recurrence
I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me. It looked like a succulent flower because it was so tiny and had little shoots. I’m lying there looking at the screen, thinking, “How could something so beautiful be so deadly?” Then he said, “We can take care of this right now.”
I asked him, “What does this entail?” He said, “We pluck it off.” Then through the screen, I saw this little grabber thing come through and he plucks it. It was very surreal. You go from cancer to no cancer because once that’s gone, you have no evidence of disease.
If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.
Moving to Atlanta
I was moving from Ohio to Atlanta, so I asked him what I needed to do. He said, “Come see me one more time before you go.” I did that and I was clear, so I was okay.
I started searching for the top urologists, top oncologists, and the hospital networks in the area. I did a lot of research and called some of the hospitals, which included Emory because they were in my insurance network. I asked, “If you had a serious problem with your bladder and you needed a urologist, who would you go to?” They told me about this doctor and as soon as I connected with the office, it was so different.
This doctor is a urologic oncologist and supposedly the best in the network. I explained my situation and gave my brother’s address since I didn’t have my new address yet. They emailed me papers and everything. There was such an urgency to be seen and that made me feel very comfortable and that I would be taken care of.
When I went, they said, “We’re not even going to have a consultation. We’re going right into cystoscopy. I want to see what’s going on there.” I’m glad they did because that was my fourth growth and it had taken off. It was very large and from the pathology report, it was high-grade.
After that scope, they said, “We’re going to do the surgery and we’re going to do your chemo,” so I did that.
During my follow-up, I didn’t see the doctor, but I saw someone else from his team. I had been taking cues from my first doctor that it wasn’t a big deal. She was the first one who looked me in the face and said, “Do not put this off because you can die from this,” and that was the first time anybody said that I could actually die from this.
Up until then, it was very casual. From that point on, I took everything very seriously. If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.
There are specific symptoms that I now recognize when I have active cancer.
Being Aware of Symptoms of Recurrence
I’ve had this nine times now, so I’ve paid attention to my body and my symptoms, and I started recognizing patterns. When I have active growth, there is a very specific pain that I feel in the morning when my bladder is full. Once I empty it, the pain goes away. When I feel that, I know I have a growth.
I’m a plus-sized person. I’m fairly large. But before I was diagnosed, I lost a lot of weight. I lost 60 lbs and that was one of my other symptoms before I was actually diagnosed. I had unexplained weight loss and I had been trying to lose weight my whole life.
Then I have a lot of sense of urgency to go to the bathroom, like when you have a UTI. I can’t wait for too long because the fuller my bladder, the more it hurts. Then I have a general feeling of unwell and being tired a lot. There are specific symptoms that I now recognize when I have active cancer.
One time, I was having bad pain in the morning. I had a cystoscopy not even a month prior and he said, “It’s probably because you’re still healing.” I said, “No, something’s going on.” He got me in and sure enough, it was another growth. This doctor trusts that I know my body and he’s fully on my team.
Maintenance Chemotherapy
For the last recurrence, we know that chemo worked. I got chemo for a whole year and didn’t have any growth, but when I stopped, I had another growth within three to six months, so I had to have another surgery and chemo.
I told him that it seems my growths occur between the three- and six-month mark, so he wants to introduce another chemo to mix with the original one I was taking and do monthly maintenance chemo probably for the rest of my life. I’m not down for that, so I said, “That’s hard on me. What if we go every two or three months?” That’s not even what the board recommends, but he’s willing to consider it.
He said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.
Side Effects of Chemotherapy
The chemotherapy drugs are all different. I get nauseous, but I don’t get sick. I have a little thinning of my hair, but I don’t go bald. I feel overall icky and tired. I go through hot and cold flashes, low-grade fevers, and night sweats. Those last probably about five days before I start to feel a little bit better. But when I went for the whole year, the longer I was doing it, the worse I felt every month.
It started like I was having aphasia or problems with recalling certain words. My memory wasn’t as good. I was having trouble concentrating and trying to process things. It was more complicated. I still have that problem where I trip on my words sometimes. It got progressively worse the longer I was doing chemo.
Taking a Chemo Break
I was supposed to do it until the end of the year, but I asked him, “Can I take a break for a month?” Since I had the six-week course before the monthly sessions, he said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.
It’s going to be a cat and mouse game, and the end result is a ticking time bomb. I’m going to do whatever I can to avoid losing my bladder and as long as I can tolerate the chemo. If it gets to the point where I can no longer take it, then I’ll probably have my bladder removed. There aren’t very many options for that.
Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that.
Facing the Possibility of Losing Her Bladder
There’s only one option that I would like. My best friend had urethral cancer, a rare form of it, and she got an Indiana pouch and that to me is the most tolerable. I don’t want to live with a bladder bag. It’s a decision I made before I met her. The only options I knew of were a neobladder or ileostomy bag, and I didn’t like either of those options because if the neobladder doesn’t work, then all you have is the bag.
I’m older and my child is grown and independent. I’ve suffered a variety of things throughout my life. I’m a chronic pain patient and with where I’m at in my life, I didn’t want to suffer, so I made the decision. Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that, and that was hard for other people.
I didn’t really talk about it, but I mentioned to people close to me, “Spend time with me now.” I didn’t come right out and say it, but I would drop hints. Then I met my friend and she showed me that and for the first time, I actually had hope that I could live with this little pouch and do the catheter. I could deal with that. Now that’s where I’m at. If I have to lose my bladder, I want the Indiana pouch.
When I was first diagnosed, I was fortunate to get involved with a cancer support center in my old town. I started going to support groups and would see there was only one other person with bladder cancer and he had a bag. He was pretty matter of fact about it and he was happy. He didn’t go through what I did, but his was found at a later stage.
You could tell which ones had a good support system and which ones didn’t. The ones who had a good support system wanted to fight and they fought until the very end.
At the time, I thought I had a good support system, so I was ready to fight. There was a woman who came in who had been diagnosed with stage 4 and it looked like there was no hope for her, but she had such a good support system. Her decision was to not do any treatment. She was going to live the rest of her days.
I remember that meeting because that’s where we got into quality versus quantity. She said, “Why would I prolong my life with the extra time I have being miserable, rather than have a shorter life and be absolutely happy and at peace with it?” That hit me so deeply because I wasn’t even nowhere near where she was as far as stage, but it put in my head that if I ever get to that point, that’s what I would do. It allowed me to process those choices and come to terms with it.
I knew people wouldn’t understand that. Even to this day, when I talk about it, people would say, “Why would you even think like that?” And these are people with cancer. You’re not me. You’re not going through what I do.
Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.
Shared Treatment Decision-Making
My doctor is still pretty dry, but I’ve grown to appreciate him. I had a different surgery a few years ago and prior to that surgery, I let him know right away, “I’ll do whatever I need to do to keep my bladder, but if it comes down to losing my bladder, I will pass. I want you to know that’s where I’m at.” He respected that and said, “I’ll do whatever you want.” I appreciated that for a variety of reasons. He must have written it in my file, so he knows that when I come in, we have the surgery and then chemo. It’s become routine now.
When I had the high-grade recurrence, it got to the point where we weren’t sure and I was scared. I had met my friend by then and brought it up to him. I said, “Can I do the Indiana pouch if I have to lose my bladder?” He said, “Let me see your abdomen.” At the time, I had a B belly, so my waist dipped in and right where the crease was is where the stoma would be. I asked, “How would that work?” He said, “It probably wouldn’t.”
I had this discussion with him. My concern was if I had a bladder bag, every time I moved, bent over, or sat, it would fold over on itself, so it would pinch off the flow. The stickers for the bag wouldn’t stick. I would then have a higher risk for infection and leaks. It solidified why I wasn’t going to live with a bladder bag.
I thought about it and said, “What if I got a tummy tuck to smooth that out?” I’m a bariatric patient too and I had lost some weight. He felt around and said, “If you could get this smoother, I think you would have a better chance,” so I started on that journey to get that done.
I had a panniculectomy, so now I have a big round D belly and I’m comfortable with the fact that if I had an ileostomy bag, I wouldn’t crease anywhere. But then I met my friend and that made me feel even better. Now that I’ve had the surgery, I could live with that. It was important that I had that discussion with my doctor because if he blew me off, then I wouldn’t have made that decision.
At my last visit, I brought up that I’m coming up to seven years. He said, “If you want to remove your bladder, we can do that, but I don’t think you’re there yet. This is all superficial, but I understand that if the chemo’s getting to be too much and doing all this is too much, we can do that. But I remember what your decision was initially.” Whatever I decide, he’s comfortable with it.
Where we left off was, I have to let him know whether we’re going to introduce this other chemo and try a few rounds every three months to see if that keeps it away. I can live with that and that’ll buy me a little bit more time. Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.
Importance of Self-Advocacy
Self-advocacy is absolutely critical. I talk about it on my social media and I have a lot of women sending me messages, not very many men, but I tell them that this doesn’t have to be a death sentence. It’s a health challenge, especially if you have the type that I have.
You have to advocate for yourself and understand what’s going on with you. Ask your doctor. Don’t feel like you’re putting him off. If he or she’s brushing you off, find another doctor. Get those answers and make those decisions.
Don’t let any doctor gaslight you. I’m a big proponent of that. I don’t think I would’ve been like this if it wasn’t for all the other experiences I’ve gone through in my life. It brought me to this point where I can advocate for myself and others.
A lot of people I talk to don’t know how to advocate for themselves. I’ve seen five oncologists, two different ones in the same week. There’s nothing out there that says you can’t go to another doctor. You have to fight for yourself and speak up for yourself.
Handling the Emotional Toll
I haven’t carried myself with grace. I’ve spent a lot of time crying and being angry at everything. Oddly, one thing I never felt was, “Why me? Why did this happen to me?” I don’t know why. I can’t tell you why, but I’ve not handled it very well.
There have been a lot of times that I get depressed. I shut down. I get gripe-y with people. I withdraw. I’ve always been a quiet person. Everybody says you have to remain positive and be positive. In a lot of aspects, that’s true, but you also have to be a realist and allow yourself to feel these feelings to get through them.
My counselor said, ‘Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis.’
Some things that I do that help me is seek mental health care. When I was first diagnosed, I was seeing a counselor and was on anxiety medication. When I moved, I didn’t need those anymore because back then, I had other situations I was dealing with that I wasn’t in anymore.
I practice a lot of self-care. I used to feel guilty about spending money on myself, especially as a parent, but I don’t anymore because it’s vital to my survival and helps me cope after years of dealing with my cancer.
You go through a grieving process too, much like a death. My counselor said, “Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis. You’ll never go back to life before that diagnosis, especially with cancer. You start grieving the loss of that life, so you need to go through all those steps and emotions to get through it.” For a lot of people, that’s hard.
The biggest stigma in the cancer community is to fight it and beat it. Either beat it or you lose. Normally, those are your only options. But when you have cancer that keeps on coming back, you don’t have that. You’re either sick or not sick. You never win. You never go the rest of your life not having to worry about it again. It becomes a part of you and you learn to deal with it. It’s like getting diagnosed with any other type of major illness. There’s before the diagnosis and after the diagnosis. You have to figure out how to live with it. Find a good support system and resources to help you.
Publishing a Cancer Care Book
When I was first diagnosed, there were different things that I had to keep track of. I had a little notebook where I was writing everything down on because I couldn’t keep track of everything, especially once I moved. I had to get new doctors, new patient portals, and new insurance. There was too much for me to keep track of. I found a group and talked to other people about it.
I’m a graphic designer by profession, so I thought about making a book for other people and created a guided journal called Cancer Care Book, which is available on Amazon (no commission is being earned with this link). It’s geared toward women, but men could use it too. It’s for anybody who has cancer but specifically for newly diagnosed people.
There are different sections in it where you can keep track of all your appointments and bills, write things out like a journal, or if you’re an artist, you can draw or doodle. There are coloring pages because I’m a big believer in art therapy.
There’s a section called The Tough Stuff where you can organize your bucket list items and final wishes. They may deny it, but everybody will think about what happens if they die and this is the perfect way. Nobody has to see this if you don’t want to.
If you get so sick and have a caretaker, you can keep track of all the information, like medication, and hand it off to a caretaker. There’s an emergency contact list on the first page, so if something happens to you, people will know who to reach out to. I put everything that I thought I would want when I was first diagnosed.
You can’t take care of anybody else if you don’t take care of yourself first.
Words of Advice
I made a video that showed six things that are key to your survival and the biggest one is early detection. Don’t wait. If you have any kind of symptom or you feel like something is wrong with your body, get it checked out. Don’t put it off. Early detection is key.
Advocate for yourself no matter what. Get those answers and get education.
Find your tribe. Find your support. They’re out there. On my website, I have a Resources page with over 500 websites for all cancers.
Take care of yourself because much like when you’re flying on a plane and they tell you to put the oxygen mask on first, you can’t take care of anybody else if you don’t take care of yourself first.
Anyone who has had a cancer diagnosis needs to get some kind of mental health care to process everything. You can find a lot of help in support groups and support centers, but they’re limited and can only help you so much. If you’ve never seen a counselor or a therapist before, once you get a diagnosis, they should be next on your list of doctors to see.
You have to come to terms with your mortality. A lot of people think they’re going to live forever. You have to shift your thinking. Cancer could take you out, a car accident could take you out, or a fire could take you out. Anything could happen. You need to reevaluate your life and make better choices of what’s important to you and your closest loved ones.
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