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

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

[VIDEO] Latest Advancements in Cancer Treatment: Live Q&A with Avital Gaziel, PhD Cancer Researcher

Watch Our Head of Medical Affairs, co-founder, and PhD Cancer Researcher, Avital Gaziel, Discuss the Latest Advancements in Cancer Treatment

Avital discusses the latest innovations in immunotherapy, targeted therapy, and other new forms of cancer treatment, as well as answers questions this Q&A style zoom.

Play Video
[VIDEO] Latest Advancements in Cancer Treatment: Live Q&A with Avital Gaziel, PhD Cancer Researcher2020-07-16T13:51:31+00:00