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Cancer Made Me a Kinder Person

The cleanliness of drinking water can vary, so for those who are immunocompromised, it can be a good idea to take precautions.


Should Immunocompromised Patients With Cancer Worry About Drinking Water?

When I first received my diagnoses of Lynch syndrome and CHEK2, I had no real frame of reference for what it meant in my day-to-day life or how I could take control of my risk. However, this changed when I found the Facing Our Risk of Cancer Empowered (FORCE) website — the realization that I was not alone in this journey opened the door to a wealth of helpful resources and a sense of empowerment.

For anyone navigating hereditary cancer risk, the path for us is far from straightforward. Nevertheless, the support systems available through organizations like FORCE and other online groups can provide deep comfort and relief: from making decisions about surgeries to dealing with medical gaslighting or coping with scanxiety. Add the emotional toll of changing your lifestyle to support risk reduction, and you have a lot to carry. But with this community, I never felt like I had to do it alone.

Together, we ask or give advice, share resources and provide encouragement for the tough days (like facing your next colonoscopy or awaiting biopsy results). This connection has been invaluable — without it, I genuinely don't know how I would have managed all the ups and downs that come with being a previvor.

Living as a previvor presents its own set of concerns, but knowing my genetic risks allows me to approach those challenges with greater preparedness. While I've had my scares since learning about my mutations, each time I've faced a medical concern, I've done so with the understanding that my awareness has likely saved me from a much more challenging future. Being able to identify and manage risks early has given me a profound sense of control over my health that I never thought possible when I first received my diagnosis two years ago.

One of the biggest lessons I've learned since then is the importance of sharing our stories. Early on, I realized that many people felt hesitant or even ashamed to talk about their experience as a previvor. But there's no shame in being proactive about your health. Through my advocacy work and podcast, “The Positive Gene Podcast,” my goal is to help others feel empowered over their hereditary cancer risk. I share with my listeners that we don't have to live in fear of our genetic predisposition — we can make informed decisions, ask tough questions, find uplifting communities and take steps to reduce our risk. There's power in knowledge and even more power in the connections you build with others going through the same thing.

When it comes to navigating hereditary cancer risks, having the right support, education and a bit of resilience really makes a difference. These tools help us feel more in control and proactive, allowing us to manage our risk and still find ways to thrive, even when things feel a bit scary.

I am grateful to have found my previvor community and to have the opportunity to give back by helping others find their voice and feel empowered over their hereditary cancer risk. If you're managing a hereditary cancer risk, talk to your medical team about the resources and screenings available to help you stay proactive in your health journey. If you're unsure of your risk, consider speaking with a genetic counselor to discuss options for testing and prevention.

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

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

subscribe to CURE®’s newsletters here.

My path as a previvor is far from being straightforward, but having available resources and support has helped me along the way. 

Lynch Syndrome

Path to Previvor: My Journey from Diagnosis to Advocacy 

There were several updates in the field of kidney cancer in 2020. Here, 

® looks back at some of the news and updates in the field that patients may have missed.

At five years of follow-up, treatment with Opdivo (nivolumab) demonstrated superior overall survival and objective response rates, compared with Afinitor (everolimus), in patients with previously treated advanced or metastatic renal cell carcinoma (RCC), according to results from the phase 3 Checkmate-025 study. 

Patients with advanced, previously untreated RCC may soon have a new option in the novel combination of Opdivo (nivolumab) and Cabometyx (cabozantinib), according to phase 3 results of the CheckMate-9ER trial. 

Birth weight, height and childhood body mass index (BMI) are associated with adult RCC, meaning they could be valuable predictors for a person’s risk of disease, according to new findings published in the European Journal of Epidemiology. 

Data presented at the 2020 ASCO Virtual Scientific Program demonstrated that treatment with savolitinib showed encouraging efficacy and an improved safety data over standard-of-care Sutent (sunitinib) in patients with MET-driven papillary RCC. 

Treatment with Cabometyx (cabozantinib) in combination with Tecentriq (atezolizumab) demonstrated promising clinical activity in patients with advanced clear cell RCC, according to data presented at the 2020 ESMO Virtual Congress. 

Data from a phase 2 study presented during the 2020 ASCO Virtual Scientific Program demonstrated that Avastin (bevacizumab) in combination with Tarceva (erlotinib) was well tolerated and produced encouraging clinical outcomes in patients with advanced hereditary leiomyomatosis and RCC or sporadic papillary RCC. 

Fotivda (tivozanib) significantly improved survival, compared with Nexavar (sorafenib), in patients with highly relapsed or refractory metastatic RCC, according to results from the phase 3 TIVO-3 trial presented at the 2020 ASCO Virtual Scientific Program. 

A roundup of some kidney cancer news and updates that occurred in 2020 that patients may have missed.

Tumor

Kidney Cancer News and Updates That Patients May Have Missed in 2020

.” I’ve used that phrase often. This article put many of my thoughts into words and words into paragraphs. After treatment, that is something I struggle with, still. “Changing the trajectory of my life” is a perfect description. The diagnosis turned my world upside down. The treatment wreaked havoc on my body and mind. Thank you. Reading this helps so much.

Robin (Facebook)Kudos to Kathy LaTour for addressing 

. In 1999, I emerged from the surgical suite at a community hospital screaming like an animal that was just caught in a steel trap. Said agony never improved. Areas of perpetual torment include my chest wall, breast, arm, shoulder, hand and ring finger.

After nearly two years of consults with neurologists and anesthesiologists, I was finally gifted with a name for my omnipresent torture. Dr. Michael Brennan’s diagnosis of post lymph node dissection pain was later confirmed at (Memorial) Sloan Kettering’s pain clinic … Through the years, I have found that a day of activity — whether it be moderate exercise, shopping or teaching my four-hours-aweek GED course — must be followed by a day of homebound relaxation.

My husband lost his cancer battle in 2015. Therefore, I am grateful that I still have fun days to treasure, a family and a job I love, memories of a great marriage and the opportunity to have traveled extensively.

We want to know what you think about Heal® magazine. Address your comments to editor@curetoday.com. If you prefer that your comment not be published, please indicate.

Comments from you, our readers, from the 2018 Summer issue of Heal.

Comments From Our Readers on Recent Heal Publications

, the US Food and Drug Administration (FDA) has proposed draft regulations titled “Framework for Regulatory Oversight of Laboratory Developed Tests (LDTs).”  

The FDA should withdraw this proposed framework because it could limit cancer patient access to potentially life-saving therapies.

Metastatic cancer patients have waited years for the hope that targeted therapies and genomic testing are now giving us. Don't let the FDA throttle our hope. Knowledge of cancer genomics and proteins is evolving faster than government regulation can move.

Of course, we all want LDTs to be as validated, accurate and clinically relevant as possible. However, we also want the laboratories where these clinical testing services are performed to be able to exercise the flexibility, innovation and medical judgment necessary for good outcomes in thousands of cancer patients.  This isn’t possible with the proposed FDA regulations.

Please sign the change.org petition, and ask your friends and family to sign. If you or a loved one has benefited from molecular or genomic testing, please say so in the comments. 

 The petition and its comments will be submitted to the FDA as an official comment. The more signatures we have, the stronger our voice will be.

Here is a specific example of patient harm these proposed regulations might cause, taken from my own 

journey with metastatic ROS1-positive non-small lung cancer

I live near Seattle. Because I was able to send my slides to University of Colorado for ROS1 testing, and my slides tested positive for ROS1, I was able to take crizotinib and achieve two years (and counting) of No Evidence of Disease. LDTs for ROS1 have been validated by medical research and have given many patients months or years of extra time.

Under the proposed regulations, some patients might have to travel to a distant or out-of-network medical facility to get the existing ROS1 test and receive treatment for their ROS1 cancer. In addition, some labs might stop offering the test because of the lengthy and cost-prohibitive process to obtain FDA approval. A medically validated test that is currently saving lives may become inaccessible to future lung cancer patients. The proposed FDA regulations would have effectively interfered with the practice of medicine.

Getting the best diagnostic and treatment outcomes from available cancer specimens relies of the practice of medicine, particularly the judgment and skill of pathologists, molecular pathologists and other molecular laboratory professionals.  The use and safety of LDTs can’t be regulated in the same manner as self-contained medical devices such as stents, or commercial test kits that come with pre-defined instructions.  Yet that is how the proposed regulations treat LDTs.

All cancer patients should have access to clinically validated tests that can help decide the best course of treatment.  Please sign 

 to tell the FDA to withdraw its proposed regulations.

A more detailed version of my ROS1 example:

ROS1-rearranged non-small cell lung cancer (NSCLC) testing and treatment with crizotinib are recommended in National Comprehensive Cancer Network guidelines because crizotinib, an FDA-approved drug for ALK-positive NSCLC, “

showed marked antitumor activity” against ROS1 NSCLC, with a 72 percent  response rate in clinical trials

—one of the highest response rates of any lung cancer drug&mdash;and a duration of response that exceeds 17.6 months.  Crizotinib is currently available off-label for ROS1 NSCLC through most insurance companies because of its strong clinical evidence of effectiveness.  Since most cancer treatment facilities do not offer an LDT for ROS1, they send slides to one of several 

-approved laboratories for testing, and treat ROS1-positive patients at home with crizotinib. Because no FDA-approved companion test exists for ROS1, any non-FDA approved LDT used to detect the ROS1 rearrangement would fall under the “LDT for Unmet Needs” exemption -- IF the LDT is ONLY used for patients within the laboratory’s healthcare system. Therefore, any lung cancer patient whose home clinic does not offer ROS1 testing would have to either send specimens to a laboratory with an FDA-approved ROS1 LDT (none are available at present), or travel for diagnosis and treatment to a facility that offers a ROS1 LDT within its healthcare system--even if the patient’s insurance doesn’t cover that system.  Many patients may not be able to travel to another healthcare facility for ROS1 testing and treatment because they might be too sick, or face work, family, or financial constraints (insurance doesn’t cover travel expenses).  Thus, under the proposed regulations, some future ROS1 patients would not be able to get crizotinib treatment, even though that treatment is available today at their home cancer clinic.

Under the proposed regulations, when using an FDA-approved companion test kit (currently available for EGFR and ALK NSCLC), any change in equipment, reagents, or patient specimen type must be submitted to the FDA and obtain the FDA's approval before it can be offered to patients. Currently patients who have little tumor tissue (a common problem in lung cancer) can sometimes be tested for ALK based on cells obtained from pleural fluid or lymph nodes. Under the proposed regulations, only tumor tissue could be tested for ALK (that's what the FDA-approved test kit requires) unless laboratories submit their modified ALK LDT for FDA approval. Also, published medical research has demonstrated that sometimes patients test negative for ALK using the FDA-approved test, but those patients may test positive using alternative, validated testing methods (such as genomic sequencing) and respond well to crizotinib. Under the new regulations, those alternative testing methods won't be allowed unless they obtain FDA approval.  Lung cancer patients who don’t have enough tumor tissue would either go without testing, or undergo risky biopsies in hopes of obtaining enough tumor tissue.

Image credit:  "Researcher looks through microscope (2)" by Rhoda Baer. Licensed under Public Domain via Wikimedia Commons.

The FDA's framework for regulating lab developed tests could keep some patients from receiving validated diagnostic tests and targeted treatments like mine.

Call to Action: Proposed FDA Regulations Could Limit Cancer Patient Access to Life-Saving Therapies

There were several updates in the field of ovarian cancer in 2020. 

® looks back at some of the news and updates in the field of ovarian cancer that patients may have missed.

The Food and Drug Administration’s (FDA) approval of Zejula (niraparib) in May for the frontline maintenance treatment of adults with advanced epithelial ovarian, fallopian tube or primary peritoneal cancer who are in complete or partial response to first-line platinum-based chemotherapy was exciting news for patients, according to a gynecologic oncology expert. 

 demonstrated that regardless of length of breastfeeding, women who breastfeed are at significantly lower risk of ovarian cancer. 

 Talks Cancer” podcast, we spoke with a cervical cancer survivor — currently living with ovarian cancer — about a cross-country journey she took on a teal and white Harley Davidson motorcycle in the summer of 2019 to raise awareness for ovarian cancer. 

Data from a case-controlled analysis of health insurance claims from a five-year period demonstrated that certain recurring symptoms appear to be associated with an ovarian cancer diagnosis, indicating that symptom awareness is relevant to identifying a disease that is typically diagnosed at a later stage. 

Most premenopausal women planning preventive surgery because of a predisposition to ovarian cancer would prefer to remove only their fallopian tubes, putting off removal of their ovaries until they reach menopause, recent study results demonstrated. 

There was not a statistically significant association between the use of powder in the genital area and risk for ovarian cancer, according to data published in 

Treatment with Keytruda (pembrolizumab), Avastin (bevacizumab) and cyclophosphamide in patients with recurrent ovarian cancer was well tolerated and demonstrated clinical benefit in most patients, according to results from a trial published in 

A roundup of some ovarian cancer news and updates that occurred in 2020 that patients may have missed.

7 Ovarian Cancer News and Updates That Patients May Have Missed in 2020

Darzalex (daratumumab) plus Velcade (bortezomib), Revlimid (lenalidomide) and dexamethasone (D-VRd), followed by autologous stem cell transplant (ASCT), D-VRd consolidation (treatment after ASCT) and Darzalex plus Revlimid (DR) maintenance improved rates of sustained minimal residual disease (MRD; measure of remaining cancer cells after treatment) negativity compared with VRd induction, ASCT, VRd consolidation and Revlimid maintenance in transplant-eligible patients with newly diagnosed multiple myeloma, according to updated data from the phase 3 PERSEUS trial.

Findings, which were presented at the 2024 SOHO Annual Meeting, showed that among patients in the D-VRd arm (355 patients), 57.5% were MRD negative at a 10

sensitivity (extremely low) at the end of consolidation vs 32.5% of patients in the VRd arm (354 patients). In the experimental arm, the MRD-negative rates at the 10

 threshold at up to 12 months, up to 24 months, and up to 36 months were 65.1%, 72.1% and 74.6%, respectively. These respective rates were 38.7%, 44.9% and 46.9% in the control arm.

sensitivity, the MRD-negativity rates (no detectable cancer cells) in the D-VRd arm at the end of consolidation, up to 12 months, up to 24 months and up to 36 months were 34.4%, 43.9%, 57.7% and 63.9%, respectively. In the VRd arm, these respective rates were 16.1%, 20.9%, 27.4% and 30.8%.

Furthermore, 64.8% of patients in the D-VRd group sustained MRD negativity at the 10

threshold for at least 12 months compared with 29.7% of patients in VRd arm. The rates of patients who sustained MRD negativity for at least 18 months at 10

 were 59.4% and 25.1%, respectively. At a 10

 sensitivity, 47.3% of patients in the D-VRd arm sustained MRD negativity for at least 12 months vs 18.6% of patients in the VRd arm. The respective rates of patients who sustained MRD negativity for at least 18 months in these arms were 42% and 15%.

“These data further highlight the benefit of D-VRd and DR maintenance as a new standard of care for transplant-eligible patients with newly diagnosed multiple myeloma,” presenting study author Dr. Meletios A. Dimopoulos said during the presentation.

A New Treatment Option for Transplant-Eligible, Newly Diagnosed Myeloma

 for induction and consolidation in patients with newly diagnosed multiple myeloma who are candidates for ASCT, based on prior data from PERSEUS.2

Previous findings demonstrated that D-VRd reduced the risk of disease or death by 58% compared with VRd alone. The 48-month progression-free survival (PFS; how long a patient with cancer lives without their disease getting worse) rate was 84.3% with D-VRd vs 67.7% with VRd.

The phase 3 study included patients 18 to 70 years of age with newly diagnosed multiple myeloma who were eligible for ASCT.

Patients were randomly assigned to a specific treatment prior to the start of induction therapy. In the control arm, patients received VRd prior to ASCT. Those in the experimental arm received Darzalex plus the same VRd regimen prior to transplant. Induction therapy was given for four 28-day cycles. After ASCT, D-VRd or VRd were administered at the same dosages for two additional cycles.

During ongoing treatment, patients in the control arm received Revlimid until disease progression. In the experimental arm, ongoing therapy was based on MRD status; all patients initially received Darzalex plus Revlimid for a minimum of two years. Patients who were MRD positive continued DR. Those who were MRD negative for at least 12 months and achieved a complete response (CR; when a person's disease cannot be detected by any tests or examinations) or better continued with Revlimid alone; they were permitted to restart Darzalex if they lost their CR without progressive disease or became MRD positive.

PFS served as the trial’s primary outcome. Secondary outcomes included overall CR or better rate, overall MRD-negativity rate and overall survival (OS; the time from the start of treatment when a patient with cancer is still alive).

Subgroup analyses showed that D-VRd improved MRD-negativity rates and sustained MRD-negativity rates compared with VRd across predefined groups.

A Darzalex-based regimen improved MRD negativity rates compared with VRd in patients with newly diagnosed, transplant-eligible multiple myeloma.

Roberta Codemo

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