Anatomy of a Scar: A Reflection

Scars. They reflect the roadmap of our lives. No matter if they are beautiful or ugly….they’re ours. Meaningful and sometimes tragic reminders of the battles fought, lives produced and everything in between. I have nearly 30 individual scars on my one body – sixteen of them acquired only at 2 weeks of age when, as an infant, I fought a raging staph infection that nearly took my life before it even began. 

Sixteen reminders of my survival. Not pretty, just real. Real in every sense…my body was attacked, my body fought back, and now I have the proof, spread across my backside. Not in any particularly organized pattern, just scattered scars where small tubes were inserted to let the infection ooze out of the infected flesh. 

At two weeks of age, and living in the former communist country of Moldova, under Soviet rule at the time, medicine was socialized. What that meant is that unless your job was to produce something…a newspaper, a street sign, a widget of sorts, you did not get paid well in your profession. Doctors were criminally underpaid and under-valued and therefore often underperformed, as a result. Bribes for better treatment were the norm, so patients often came to hospitals armed with an added incentive for the doctor that was to treat them…cash or bottles of booze were commonly presented to doctors at medical appointments.

According to my parents, the story goes something like this. When I was a few weeks old, I had a little sore on my lower back. When the visiting nurse came to our home, she punctured the small blister and gave me an even bigger infection that caused my fever to skyrocket. An ambulance was called and I was rushed to the hospital where they discovered an aggressive staph infection ravaging its way through my body. 

During the two weeks I spent in the hospital, my condition. After the bribes stopped working and doctor visits to my hospital room slowed down, my parents were told that they should go home. That they should leave me in the hospital…that I was not going to make it through the next night. That’s when my father flipped a switch, stormed a medical conference taking place in my hospital, and dragged out 3 doctors who would end up saving my life. To my good fortune, my father was strong-willed, but so much so that my official medical record had this note in it, “Be careful! The father has a bad temper.”  So I survived, and eventually my mother and father brought me (and my sixteen little scars) home and then a few years later to a new beginning in America. 

Throughout my life, those scars were always with me. Something I had to explain to friends at cheerleading camps when changing into our uniforms…Something I had to clarify when asked why I preferred high-waisted bikinis rather than the skimpy ones everyone was wearing in the ‘90s. Something I had to acknowledge in my intimate relationships as well. But they were a part of me…I did not know life without them. 

When I was in my early thirties, I was diagnosed with advanced breast cancer, and genetic testing showed that I carried a mutation that would, more than likely, cause my cancer to return in my lifetime. Stage III, triple negative breast cancer with the BRCA 1 mutation. I hit the jackpot – the most aggressive breast cancer was playing house in my body. Hard situations sometimes require even harder measures. So we went ballistic…our counterattack included dose-dense chemotherapy and full-course radiation as well as a double radical mastectomy. Taking the most aggressive measures available was hopefully going to also increase the chances of long-term survival. It was touch-and-go in those dark days and big decisions needed to be made quickly. We weren’t trying to save my breasts…we were trying to save my life. 

At that time, the nipple-sparing procedure was not an option for me, so off everything went. I closed my eyes and surrendered to some of the most capable hands in New York City. Because of the location of my cancer, the surgeons had to scrape down to my chest wall in order to make sure they got rid of every microcell and cancerous fiber. They needed to clean house! And they did just that, leaving a warzone of annihilation and destruction across my chest.

The scars were severe and, while expected, were still difficult to adjust to. It was gruesome. The surgery and the scars hurt more mentally and emotionally than physically. And not because of vanity. But because they were reminders that, if it were not for modern medicine, I would not be alive…that in order to live, I had to virtually amputate a part of my body. Reminders that I was somehow damaged, less than, unwhole, weak.

As opposed to the scars left on my back from my infant staph infection, these new scars were on my chest. Everytime I looked in the mirror I was reminded of my dance with death and how I was forced to deal with my mortality. I could not run away. I could not even turn away. Every shower, every changing of clothes, there they were…in my face, wickedly staring at me – permanent reminders of my own personal defectiveness. And worse, I could not unsee the horrific expressions on the faces of my family and my dearest friends…stepping forward to change my bandages and empty my drains, meeting my scars for the first time. It was as if they were seeing a nightmare unfold in real time. They couldn’t hide their shock, and seeing the pain on their faces was worse than the physical pain I was feeling. 

The anguish of loss was present and I was reliving my cancer each day. Every day. How can you put something behind you when it’s staring you in the face? The anatomy of my scars became more than physical tissue being rebuilt…it was the revolving thoughts racing through my mind and in my heart and in my core. 

They say time heals all wounds. But the scars…those remain. Two years after my cancer and after countless reconstructive surgeries, the scars were still there…red and angry. My emotional state was resignation and concession. I was resigned to living with the collateral damage the cancer treatment left. Weakened nails, brittle teeth, lymphedema in my arms, those treacherous scars on my chest and the visceral scars on my psyche. But the one thing that I could not bear was the infertility caused by the chemotherapy. That left me reeling. 

And then a miracle happened.

After a spiritual trip abroad with my husband, I realized that I was pregnant. Spontaneously pregnant, against all medical odds and probabilities. And not only that, I was pregnant with twins, if you  can imagine. For the first and only time in my life, I was pregnant, and let me tell you, it was the most wondrous experience. I finally felt that I was doing something important, something bigger than me and much bigger than my cancer and that initiated my emotional healing process. 

After nearly dying from cancer, to have the ability to grow new life was just miraculous, in every sense of the word. My mental scars began to take the back seat and fade against the possibility of bringing life into the world. Something I was told would never happen.  My physical scars were suddenly no match for my growing belly. Now when I looked in the mirror, I was in awe of my own body…what it went through and what it was able to do in spite of the destruction it had endured. 

And when the doctors told me that I would need a c-section and I thought about adding yet another scar, I was proud to do just that. Because I slowly began to realize that every scar and imperfection was fought for and earnestly EARNED. And that my scars were my badges of survival…reminders of the moments and experiences of achievement…something to honor and take pride in. 

The Japanese art of Kintsugi, where objects are shattered but then reassembled, the cracks painted in gold, teaches that broken things are not something to hide but instead to display with pride and dignity. The scars, my scars, your scars, they all tell an intricate, authentic story of the beauty, grit, and strength in the broken places. And we all have broken places, visible or not. In spite of everything, you are not only whole, you are bold and gold in the cracks that once were. They are yours….you earned them, just like I did. 

My favorite scar is my c-section scar because it lives as a precious souvenir of the two remarkable lives I created. It’s also one of my smallest scars, and I actually sometimes secretly wish that it was bigger because of the enormous story that it tells. My story. And now, I would love to hear yours!

If you have a scar story you would like to share, please click HERE

Anatomy of a Scar: A Reflection2023-08-23T17:13:35+00:00

A Bella Tale, My Cancer Story of Hope.

Shortly after my cancer diagnosis, I began to receive good-hearted advice from my family and friends. They all wanted me to join a cancer support group. Why? Because my crew did not think they were able or qualified to support me like other cancer patients could.  After all, how many 32 year-olds do you know with Stage III breast cancer? 

For me, I knew it was critical to stay true to myself and that my strength came from the vibrant, colorful, energetic things and people in my life. So at each chemotherapy session, I would sit with friends, who traveled from as far as Amsterdam, and took time from their busy schedules, to join me at the NYU Cancer Institute for hours of infusion, cupcakes, funny stories, dirty jokes, dirtier magazines, champagne and lots of laughs. We would laugh so hard and so loud that one time I remember saying, “Guys, we have to be a little quieter…there are sick people here.” Honestly, it was only when they stopped laughing and looked at me that I realized that I was one of those sick people. 

 The guilt I felt watching their faces crumble as they hugged me – it was intense and sometimes more than I could handle. And in the sparse, quiet moments I secretly wondered if they all came to say their good-byes. I felt awful watching my friends and family stand witness as I fought the good fight. To me, I was taking them down a dark and irreversible road which would forever mark them and strip them of their innocence. The emotional weight of being a cancer patient can take you in so many directions…fear, sadness, anger, self-pity….mine was mostly guilt and well, maybe, some good ole-fashioned anger, peppered in for good measure.

 So how did I get here? After all, I was young (only 32), fit, strong, newly married, at the height of my career and planning to start a family.  The simple truth is that I took my dog, Bella, for a walk one beautiful summer day and came home with breast cancer. Yes, you read that right.

 I was walking my dog and the next thing I knew, I was flying through the air. Bella gave me one strong, sudden tug on my left arm that surprised me and jerked me forward and off the ground, dislodging an avocado-sized tumor from my armpit in the process. The tumor was a lymph node engorged with metastatic cancer. No lumps or bumps on the breast…only a tiny spec at the very base of the chest wall that silently and aggressively ravaged its way through my body. And that enormous lymph node had been working overtime, doing its damndest trying to prevent the cancer cells from spilling over into other organs. By luck, by miracle, that walk with Bella saved my life because, according to my doctors, we would have not been able to find this in time or in any other way. After all, I was too young to even go for a mammogram.

Being diagnosed with Stage III, Triple Negative Metastatic Breast Cancer, at my age and with no family history, the doctors kept saying it was a “remarkable” case. I’ve never wanted to be more unremarkable in my life. I was thrust into dose-dense chemotherapy a few days after diagnosis and told that the chemo would likely kill my chances of ever having children, could cause other cancers or even heart failure…but I did not have even one day to waste, let alone the two weeks I needed to preserve my fertility.  It was my only fighting chance at survival, or so they said. I was led to believe that there  were no other options for me so late in the game. So I quit my shiny new job, said a prayer that my fertility would remain in tact, and assumed my new role as CEO of Cancer Treatment. 

The ironic thing is…the cancer didn’t hurt. It was the treatments that I suffered from! And it was a grueling experience. Dose-dense chemo is not for the faint of heart. The chemical agents I received, also known as “Red Devil,” were the same used in the mustard gas for extermination in WWII. It can cause cardiotoxicity (heart failure) and should typically be administered once every 3-4 weeks. Mine was administered once every 2 weeks for maximum impact. So, in essence, what my doctors attempted to do was bring me to the brink of death without actually pushing me over that slippery edge. Giving me a little time to recover and then blasting me again. It was all grit and white knuckling mixed in with inappropriate jokes at even more inappropriate moments that carried me through those days.

During the four months of chemo, I also went through genetic testing and found out that I carried the BRCA 1 gene mutation, which all but promised a nearly 90% return of my particular cancer in my lifetime. Doing that genetic test changed the trajectory of my treatment. Very quickly, my medical team switched gears from previously discussing a minor lumpectomy to now recommending a double radical mastectomy where they would actually scrape down to the chest wall. And that is what I did, with great difficulty. Not because of vanity. But because I would forever have these scars, reminders of my fragility. Reminders that if it were not for modern medicine, that I did not qualify for Darwin’s survival of the fittest theory. I thought the scars would make me feel broken, amputated…frankenstein-ish. 

I finished chemotherapy on December 9, 2005 and on January 11, 2006 I closed my eyes and surrendered to the surgeons for the most aggressive mastectomy they had to offer. Six weeks of daily radiation, that tagged my left lung and heart, followed.

To my devastation, I was left in full-blown menopause from the treatment and really twisted up about it. In general, my outlook on my cancer was positive. I understood that although I got hit by the proverbial bus, that all my lucky stars had to align for my dog to find my cancer. I could deal with anything, but infertility? No! I did not sign up for that!  Knowing how much we wanted a child, my oncologist said that he would sign all the adoption papers we needed but that I had to wait at least three years to make sure that cancer did not return. So after much discussion and anguish, we decided that we had no choice other than to wait…but determined that we would become parents one day – regardless of how a child came to us.

Less than two years later and still struggling with infertility, I shockingly discovered that I was spontaneously pregnant…for the first time, and only time, in my life. My stunned and concerned oncologist told us that I was not far enough away from the cancer to even consider this pregnancy. He said that if we wanted to do the right thing for my health, we would terminate.

What? Terminate the pregnancy? Um no, I’m not the one. For me there was only one clear option! There was no way I would ever consider stripping myself of this unbelievable gift, this miracle, this baby that found its way into our life against incomprehensible odds. 

At the baby ultrasound, the technician found the baby’s heartbeat. Her words still dance in my mind, “There’s the heartbeat… and there’s the other one. You have two babies!” Twins! Time stopped and my life changed in an instant. It was the most defining moment of my life. Both girls’ names are inspired by my cancer journey.  They leap from on my tongue as reminders of both hope and gratitude.

And my skeptical oncologist? He said that I was the first patient in his entire career that was able to conceive a child, let alone two, after the kind of treatment I received. He came to my hospital room when the girls were born to hold them and see that life actually exists on the other side of cancer. I’m happy to report that there have been other pregnancies since mine at NYU!  What I’ve come to realize is that no matter how well-meaning they are, doctors simply cannot not know everything and cannot be expected to. 

The scars I thought would haunt me? They turned into the most beautiful reminders of my grit and good fortune. I feel like a Japanese vase that has been cracked but then quickly reassembled. The cracks, painted in gold, are meant to  tell a story of beauty and strength in the broken places. And that’s what I have become – strong in the broken places, in every way!  

I tell my story to say that miracles are possible, that you should trust your instincts, that you should question everything…and that you should never give up on hope or on yourself – ever!  We lost my Bella many years ago but every time I pass the spot where she pulled my arm that day, I look up into the sky to thank HER and the universe of endless possibilities. And when I look into the eyes of my daughters, I think of hope everlasting and the perseverance of the human spirit. Nothing is impossible.

A Bella Tale, My Cancer Story of Hope.2022-12-12T03:31:16+00:00

The Empowered Family: Cari’s Story

“And that’s where the cancer is….”.  These six simple words, said so cavalier, tore my world apart and my life hasn’t been the same since they were uttered two years ago.  It was July 2020 and I was laying in a darkened room while a doctor examined mysterious subcutaneous bumps via ultrasound.  I felt my face flush and my lips and fingers began to tingle.  The doctor went on to show me two large masses and an abnormal lymph node.  I’m not really sure what he said next… my mind was a whirlwind of thoughts, but mostly I thought… why? And better yet, how?? I had had a mammogram and ultrasound six months prior and there was nary a shadow let alone a large 7cm mass yet here I was not even a year later with what everyone was one hundred percent sure it was a malignant tumor.  

I left the imaging place with instructions to return the next day to get a biopsy as soon as possible.  I sat in my car and cried.  I came home and hugged my two little boys who were 8 and 2 at the time and imagined how their lives would turn out if they grew up without a mama. How was it possible just the day before I was worrying about my statistics final??  

The next few weeks would be a whirlwind of appointments and imaging. New faces, needles, and pokes and prodding. I would discover my cancer was invasive ductal carcinoma, HER2+, Estrogen positive.  Unfortunately I would also learn that I not only had affected lymphnodes but two teeny tiny spots of cancer on my liver. I was officially upgraded to a stage 4 patient.  I was devastated to realize I would never be cured. The most I could hope for would be long remission.  

Less than three weeks later I was hooked up and ready for my first infusion, a deadly cocktail of Docetaxol, Carboplatin, herceptin and perjeta. I underwent 16weeks of the poison that was supposed to “fix me.” During this time I continued to work and go to college.  I’d conduct speech therapy sessions from the infusion room. My oncologist managed my side effects well, but nothing could be done about the hair loss. That’s when my sister and my niece decided to take control and shave my head.  

During the workup at one of the many appointments, my surgeon, an amazingly kind and gentle soul, Dr. Rebecca Viscusi offered genetic testing since I was so young and otherwise in fantastic health.  I agreed to do the genetic panel not expecting much of anything to come back but wanting to know if maybe getting cancer wasn’t my fault.  My genetic results came back as having a germline mutation in the P53 gene, a condition referred to as Li Fraumeni Syndrome.  This gene is a tumor suppressor and ensures your body does not allow unhealthy cells to complete the mitotic cycle.  In my case, my P53 genes don’t work right so my  body allows damaged cells to reproduce.  Women with P53 mutations have a 99% chance of developing cancer in their lifetime because of the already elevated risk of developing breast cancer.  

So there I was… full of disease and also defective in some way.  My first instinct was to check my kids.  My geneticist, Rachel Adger, worked with my childrens’ pediatrician to get them tested.  It was a 50/50 chance either way for both of them.  Unfortunately my youngest son, who was 3 by this time, inherited the genetic mutation from me, but that is another story.

During my first PET scan, my medical oncologist, Dr. Aisha Ahmed, noticed a spot in my brain she was certain was not a metastasis of the breast cancer, but wasn’t sure what it was in general.  Now that we knew I had LFS, any abnormality had to be taken seriously and she referred me to a neurosurgeon.  Right away I clashed with the doctor and his staff.  I will not mention his name, but I was not well taken care of, I was not treated with respect, and I was not taken seriously.  It was at this point I decided to request a referral to Mayo Clinic and get a second opinion.  I had the pleasure of working with an amazing surgeon by the name of Bernard Bendok.  After numerous MRIs, a functional MRI, and a perfusion MRI we still weren’t sure what the mass was. It had not changed, but again, being the genetic anomaly I am, Dr. Bendok and I erred on the side of caution and decided to remove it and have it biopsied.  

The pathology came back as a grade 3 astrocytoma that would require chemotherapy (a shortened and lower dose because I’m already at risk for leukemia) and proton therapy (not radiation because radiation is dangerous for people like me!) my insurance did not want to pay for.  I did the proton therapy at Mayo Clinic with Dr. Terence Sio and his amazing team. The social workers and techs became not just part of my care team, but also friends.  We listened to music together, we talked about our kids, and on my last day of treatment, we celebrated together.  After the proton therapy I underwent 6 months of oral chemotherapy and as of March 2022 I am officially on maintenance therapy and surveillance.  

During this entire time I have managed to continue working mostly full time, take care of my kids, graduate from college and get accepted into a master’s program. I wouldn’t say I’ve quite adapted to life as a chronic cancer patient but I have definitely accepted it.  My infusion nurses are some of the best friends I have.  As a “lifer” patient, we’ve gotten to know each other and by association, each other’s families.  I have met amazing people during this experience: social workers, advocates, patients, doctors.  Sometimes I still get a little discouraged or bummed out, knowing I will never put this behind me. Knowing that every single thing in my life has to revolve around a treatment regimen. Knowing that I will never sign the wall or ring the bell signaling the last chemotherapy treatment.  But I have also realized the physical weight of this is heavy enough, I don’t need to add any mental weight to it.  

I have also learned that it is so beyond important to not only trust who is in your corner or on your care team, but make sure they can and will advocate for you as needed.  If you don’t have a doctor willing to do that, it’s a giant red flag.  If that first neurosurgeon was the be-all end all opinion, I’d be dead right now.  That leads me to the second thing I’ve learned:

I have learned that you must also advocate for yourself.  Information is readily available to us by a simple click of the button.  Be informed and be knowledgeable.  You are the only one that has to live with the decisions made about your treatment. 

I could give you a lot of crap about how I learned to appreciate the little things, and to cherish the “small moments” but let’s be real: that lasted about a month.  That in itself was reminded me that no matter what my diagnosis was, I was still me.

I get nervous and unbearable anxiety when I have imaging or blood draws. The slightest jump in numbers sends me into a tailspin, and it will most likely be that way forever.  I’m not saying that to make you feel bad, but to remind you that it’s ok to be scared but it’s not ok to let it consume you.  

The Empowered Family: Cari’s Story2022-12-12T03:32:11+00:00

When the Doctor Becomes the Patient

How Cancer Changed the Way One Doctor 

Practices Medicine 

Trialjectory had the privilege of speaking with Dr. David Jones* about how his experience as a cancer patient changed the way he practices medicine. 


Trialjectory:  Thank you for agreeing to share your story.  Can we start by having you share a little bit about your background? 


Dr. D:  I am from a lower middle class family from a mill town in the North East. I attended public schools and was the first in my family to attend college. I have always enjoyed science and decided at a fairly young age to try and become a doctor. My late wife was instrumental in my finishing school. If it was not for her great help and support I probably would not be where I am today.


Trialjectory:  Sounds like you’ve always been passionate about becoming a doctor. What have you learned from your patient interactions over the years?


Dr. D. I am a general practitioner, and I have enjoyed many years of taking care of my patients. I consider this one of the highest forms of service that a person can achieve in their career. In my practice I care for and treat many different kinds of human ailments both physical and mental. This requires a great deal of expertise and experience in order to help with your handling of the patient’s physical and mental welfare. As a physician goes through his or her practice, they gain experience and wisdom that enables them to better serve their patients.      

“I was no longer a practitioner of medicine, but one who was relying upon a fellow physician to guide me through my treatment and hopefully recovery.”

I found that in the beginning of my career I had a lot of knowledge but little insight into the patient.  

At that time I was focused on treating  the disease and not necessarily the patient. As I gained experience, my ability to relate to  my patients increased beyond my knowledge of medical facts and treatments. The greatest influencer of this knowledge was when I became a patient, a patient who was diagnosed with cancer. 


Trialjectory:  Receiving a cancer diagnosis, quickly changed your role from doctor to patient. What was that like and what did you take away from the experience? 


D.D.: The tables turned quickly when I received my cancer diagnosis. I was no longer a practitioner of medicine , but one who was relying upon a fellow physician to guide me through my treatment and hopefully recovery. This experience has given me the greatest opportunity to improve my abilities as a physician. Being on the receiving end of medical assistance is so very much different that anything I had done before in my practice. It opened up for me a whole new outlook on how I would take care of my patients in the future. It also made me aware of the conversations that I had with patients. Listening to what they are saying was now extremely important. 


I realized that I was listening, but not understanding what was truly occurring in the patient’s life. Now I have a deeper understanding of how important it is to truly listen and understand all the questions and concerns that my patients are expressing to their physician.


Trialjectory:  How did your knowledge as a physician impact the way you communicated with your clinical team of caregivers? 


Dr. D:  It’s a unique and unusual experience to have a disease that you are very familiar with. It’s scary to know what is occurring in your body, placing 

your care in the hands of another is very difficult and was a new learning experience for me. I  found myself asking simple questions to my physician, exactly as my patients would ask me! I found this enlightening and also important to my future as a practitioner. I wanted my physician to be a good listener and to truly understand what my concerns were. She was excellent! She was not distracted by office duties while I was in the office. She was answering my questions and not becoming distracted by some of my more sophomoric inquiries. She took all my questions with a great deal of understanding and empathy. I learned a great deal about myself and a great deal of how I was going to handle my patients in the future, not only those patients with diseases such as cancer, but also mundane medical problems as well.     

My role as patient was interesting , too say the least. I was also scary.  Yet my colleagues were always supportive of my questions and concerns. Thanks to their level of  compassion I learned a great lesson in my future as a physician. 

“A little knowledge is a dangerous thing so acquire a great deal of knowledge to be able to assist both [you and your doctor] in your future treatment and recovery.”

I would have preferred not getting  diagnosed with cancer, but the bright side is I gained an understanding of medicine that I otherwise would never have been exposed to. 


Trialjectory:  Your journey is very unique. If you could give a cancer patient any advice, what would it be – and is coming from you as a doctor or patient? 


Dr. D:  To be honest, as a patient, I would tell another cancer patient to try not to become so involved with your disease that you lose track of your goal of beating this disease. I would also recommend that as a patient, tell your physician your understanding of the treatment, just do not accept something you don’t understand. Your physician wants you to be well and the more information he or she can give you helps the two of you in your recovery. A little knowledge is a dangerous thing so acquire a great deal of knowledge to be able to assist both of you in your future treatment and recovery.


From a physicians point of view, treat the patient first, he or she should be the center of your focus. The disease is important but the patient is always your main focus of concern. I always try to be positive, for I truly believe that the body follows the mind. Keep your patient informed and encouraged.


Trialjectory: Thinking back, were there any inspirational quotes or experiences that have stuck with you? 


Dr. D: I don’t have any particular inspirational sayings that I live my life by. I believe that rather than sayings, I relied on my life experiences to guide my way through my practice of medicine . So many statements that I have heard from my patients are so profound and have influenced my care for these patients. I have found that the truest statements of life come from those that are close to the end of life. I try to live my life and practice being guided by these thoughts.

When the Doctor Becomes the Patient2022-12-12T03:31:57+00:00

Take back control

I have been thinking a lot about Control lately.

How the second you get diagnosed you lose control over your life.  

It doesn’t matter if you are a control freak or not – we now lost control. We are not sure how we’re going to feel tomorrow morning, we’re not sure about what’s going to happen, what our options are, what we are supposed to do now, and what we should expect. 
Unfortunately this loss of control is even slightly encouraged by the environment and system. Doctors do not really allow us to have control, the information we get is very limited, and only ever so slightly tailored to us… and it doesn’t have to be that way.  

One of the things we need to understand is that there things we don’t have control over, but also things we do. Which treatment we deserve is one of them. We deserve full visibility to what treatments we can get and we deserve the right to choose what’s right for us.  If we take back control of what we can, and what we deserve, this journey can be more tolerable, and potentially more successful. 


This is why it is so important to learn as much as we can about the different treatments available. 

One of the latest advanced treatments that’s been discussed much lately is CAR T/Cell Therapy, and there are dozens more out there

Here at TrialJectory we encourage all patients to learn and understand as much as possible about new treatments so patients REALLY understand their options, and are able to take back control of their life.


Remember, we’re always here for you! Reach out to us any time at for guidance around your specific cancer.


Tzvia Bader,

Co-Founder, Cancer Survivor, CEO

Take back control2022-12-12T03:32:28+00:00

CAR T Cell Therapy Talk

Did you miss Dr. Joshua Mansour’s webinar? You can view it anytime here


Dr. Joshua Mansour is a board certified hematologist and oncologist  with additional training at Stanford in cell therapy and bone marrow transplantation. In our talk, he focuses on the innovations and progress in CAR T cell therapy while also discussing cell therapy as a whole, the difference between cell therapy and CAR T cell therapy, the steps of CAR T cell therapy, and more details about this form of cancer treatment.


What is cell therapy?

The simple definition of cell therapy is a treatment in which cells are transfused or injected into a patient to cause a specific response. This is a broad field of study that can include different cell treatments, including transplantation of the patient’s own cells, transplantation of donor cells, and CAR T cell therapy.


CAR T cell therapy has been around for over 20 years now and is a type of immunotherapy that helps T cells recognize cancerous cells in the body and attack them. It can be described as a “lock and key method” because it works through specificity.


How does CAR T cell therapy work?

In this treatment, blood is removed from the patient, which T cells are extracted from. They are then given to a lab where a Chimeric Antigen Receptor (CAR) is attached to the cells, and are given time to multiply in the lab. Then, the CAR T cells are infused back into the patient with the new receptor protein, which is able to recognize and attack cancer cells.


Who is eligible for CAR T cell therapy?

Not every patient can undergo CAR T cell therapy. Some factors that have to be looked at prior to treatment are:

  • The patient’s blood counts
  • The relative disease stability of the patient
  • The patient’s ability to tolerate toxicity


What are potential side effects to this treatment?

One side effect that is almost always expected to some extent is cytokine release syndrome. This usually starts from day 1-3 of treatment and continues for several days. Cytokine release syndrome can have various symptoms, the most common ones being fevers, shortness of breath, fatigue, nausea, vomiting, and diarrhea.


Another common side effect is neurotoxicity, which usually starts on day 3-5 of treatment and ends around day 5-8. Patients will be asked to answer a set of questions 2-3 times a day in the early stages of treatment to detect signs of neurotoxicity and treat it as soon as possible.


What is the process and experience like for the patient?

Patients will first have their blood removed and sent to a lab. While they wait for the CAR T cells to be ready, patients undergo low-dose chemotherapy treatment to manage their cancer and suppress the patient’s microenvironment. Once the CAR T cells are ready, they are injected into the patient.


Dr. Mansour typically tells his patients to expect to be in the hospital for 2-3 weeks total for the treatment including the low-dose chemotherapy. Patients will often experience fatigue and other side effects after infusion which can last for as little as a few days of as long as a few months.


After being released from the hospital, patients will be given antiviral and antibacterial therapy because parts of their immune system will be subdued from treatment.


Where are we today with CAR T cell therapy?

Today, there are several CAR T cell therapies that are FDA approved, but patients will typically only use them if they have already exhausted all other traditional therapies. All of the current approved therapies relate to liquid tumors, but solid tumor CAR T cell therapy is currently on the rise with several clinical trials.


There are currently many ongoing CAR T cell therapy clinical trials for various cancer types, and Dr. Mansour urged patients to check the Trialjectory website and other resources to see if there were any available trials for their cancer type.


In today’s world, the COVID-19 pandemic is a crucial topic of discussion for any treatment. Patients undergoing CAR T cell therapy are more vulnerable to infections as a whole, which includes COVID, but this is true for other cancer treatments as well. Patients can still get this therapy if they have already received the COVID vaccine. However, because of the way the immune system reacts to CAR T cell therapy, Dr. Mansour generally tells his patient to wait about 100 days after treatment to get the COVID vaccine if they have not gotten it already.


Where is the future of CAR T cell therapy headed?


Researchers are looking to make several improvements to CAR T cell therapy in the future. For one, they are working to make chemotherapy an out-patient process to minimize time spent at the hospital. Another important goal is to try and make this treatment safer to patients by decreasing side effects.


On the technical side of the treatment, researchers are trying to increase the targets and proteins for this treatment. They are also looking to make more progress into solid tumors and solve problems relating to penetration of the tumor, which has been a significant challenge thus far.

CAR T Cell Therapy Talk2022-12-12T03:32:36+00:00

Myelofibrosis News

Latest News in MF Cancer Research


Myelofibrosis (MF) is a rare type of bone marrow cancer that disrupts normal production of blood cells. MF usually develops slowly, and initially a patient may not notice any symptoms, but over time patients begin to experience fatigue as a result of anemia (low red blood cell counts), pain from an enlarged spleen, fever, bone pain, and easy bruising and swelling.


Patients in more advanced stages of the disease require aggressive treatments which have mainly focused on relieving symptoms. A common treatment for MF is allogeneic stem cell transplantation, but unfortunately this is not an option for most MF patients because it is risky for older adults. Because of this, clinical trials may be the best treatment choice for some MF patients.


Hematoxylin compounds in targeting CALR mutant cancer cells


Back in 2013, it was discovered that certain mutations of a gene called calreticulin, known as CALR, were often found in patients with MF. Since then, researchers have been able to identify and understand how the mutated version of this gene functions. This led them to understand that CALR works by interacting with a certain receptor that has to do with platelet formation.


In 2020, researchers at the research group of Robert Kralovics at CeMM were looking for ways to stop this interaction and stop the growth of CALR mutated cells. They found a certain group of chemicals that was able to selectively kill mutated CALR cells while leaving healthy cells unaffected. The chemical that worked most notably was hematoxylin, which is a chemical that has been used as a dye for staining cells in laboratory work in the past.


This study shows the potential that CALR inhibitor therapy has for MF patients, and especially primary myelofibrosis (PMF) patients. Kralovics said that the treatment of patients with PMF has had poor clinical outcomes up until this point, and since about a third of PMF patients have a CALR mutation, this new therapeutic approach could benefit them in particular.


Momelotinib as a treatment for MF


There have been studies in the past that used JAK inhibitors (a type of medication that stops the activity of a certain gene called JAK that has to do with cell growth) to treat MF. However, while these treatments did help with the enlarged spleen and some other symptoms of MF patients, they worsened other symptoms like anemia and thrombocytopenia (low platelet levels).


A new treatment has been developed using a drug called momelotinib. This drug is similar to the older treatments as it is a JAK inhibitor, but it also inhibits another gene called ACVR1. Inhibiting this gene causes a decrease in the levels of hepcidin, a hormone that controls iron balance in the body, which can potentially improve anemia in MF patients.


Results from clinical trials involving momelotinib have shown promising results, and the drug is currently being investigated in a phase 3 study. The several studies that have already been completed show that momelotinib has potential as a new treatment option for MF patients.

Myelofibrosis News2022-12-12T03:34:34+00:00

Managing Sleep and Fatigue During Cancer Treatment with Light – A Talk by Dr. Ancoli-Israel, Ph.D.


Dr. Sonia Ancoli-Israel Ph.D. is Professor Emeritus and Professor of Research in the Center of Circadian Biology at the University of California San Diego School of Medicine. In 2019, the American Academy of Sleep Medicine awarded her the William C. Dement Academic Achievement Award.

She became interested in how chronic illnesses, specifically cancer, affect different aspects of sleep. She was specifically interested in the effect chemotherapy has on cancer-related fatigue, which is a serious problem faced by cancer patients throughout their treatment. In this talk, she describes her studies of the relationship between sleep, fatigue, and circadian rhythms in cancer patients as well as a potential treatment for cancer-related fatigue known as bright light therapy. 

What is cancer-related fatigue?

Cancer-related fatigue is one of the most frequent complaints of cancer patients. It is so severe that it interferes with everyday functions and can be so extreme that it can cause cancer patients to stop their treatment.

There are many different factors that contribute to cancer-related fatigue including pain, anemia, depression, anxiety, social and cultural factors, and sleep circadian rhythms

Effect of chemotherapy on sleep quality

Dr. Ancoli-Israel performed a study which revealed that most patients had difficulty sleeping before their cancer diagnosis, but more than half of the patients felt that their sleep worsened once cancer treatment began.

She then did another study, the results of which show that a patient’s sleep period worsens as chemotherapy progresses, and the data revealed that patients are only asleep for 70% of the night.

In a third study, it was found that sleep quality, fatigue, and depression all got significantly worse during chemotherapy. These results suggest that targeting these specific symptoms before starting chemotherapy may benefit the patients once they begin treatment.

What are circadian rhythms?

Circadian rhythms are the natural internal processes sometimes called the “internal clock” that regulate many 24-hour cycles, including the sleep-wake cycle. Understanding the effects of chemotherapy on circadian rhythm is important because disrupted circadian rhythms have been shown to have negative side effects, such as increasing the risk of mortality in cancer patients.

Effect of chemotherapy on circadian rhythms

The results of various studies have shown that there is a significant decrease in rhythmicity in the first week of each cycle, but that the patients are able to recover in the following weeks of the first cycle. However, by the fourth cycle of treatment, patients were unable to return to their pre-chemotherapy levels of rhythmicity

These results suggest that that first cycle causes a temporary disruption of circadian rhythm while repeated administration of chemotherapy causes more enduring impairments to the rhythm.

What is bright light therapy?

Bright light is the strongest cue for the body’s circadian rhythm as it tells the body when to wake up and go to sleep. Bright light therapy is a treatment where patients are exposed to bright light in order to strengthen or restore circadian rhythms.

Relationship between light exposure and cancer-related fatigue

A study was done which revealed that women undergoing chemotherapy got significantly less exposure to light during the day throughout their treatment than they did before treatment, so Dr. Ancoli-Israel hypothesized that increased fatigue may result from less light exposure.

Effect of bright light therapy on cancer-related fatigue

A study was performed where breast cancer patients were given increased exposure to either bright red light or bright white light. This study found that fatigue of women with bright white light exposure did not worsen throughout their treatment.

This is not a cure for cancer-related fatigue, but it did keep fatigue at pre-chemotherapy levels. A similar effect was observed when studies were done on the effect that bright white light treatment has on circadian rhythm: circadian rhythms were able to return to pre-chemotherapy levels in every cycle of treatment.

Bright light therapy after chemotherapy

Many cancer patients experience “fogginess” which occurs with all different kinds of cancers and can last a year after treatment. A study was done that showed that bright light therapy after chemotherapy caused improvements in fatigue after the treatments were over.

Managing Sleep and Fatigue During Cancer Treatment with Light – A Talk by Dr. Ancoli-Israel, Ph.D.2022-12-12T03:35:53+00:00