Emergency Preparedness for People with Blood Cancer

In the past few weeks, devastating hurricanes have forced people out of their homes and away from their cancer care facilities, highlighting a need for better education and preparedness surrounding the medical consequences of natural disasters. Emergency situations such as a hurricane, earthquake, blizzard, flood, or blackout, are unpreventable and can drive a city into disarray in a matter of hours – but the more preemptive thinking and planning that people do prior to a catastrophic event, the better equipped they will be to respond. This is especially true for people with cancer, who must be particularly cautious during such times, as they are often more susceptible to infection or injury.

Debri in road during typhoon

Follow these 5 tips to help minimize the harm that a natural disaster or public emergency can cause to your personal health:

Travel with Caution
Since extreme weather can cause travel delays both on roads and throughout public transportation, be sure to allow extra time to make it to your appointment safely. You may also want to consider staying in a hotel near the hospital to avoid hazardous commuting conditions before and after your appointment, especially if you’ll be in and out of the facility more than once within a few days. Some programs, such as the American Cancer Society Hope Lodge in Manhattan and Extended Stay America’s Hotel Keys of Hope help to alleviate the financial burden of traveling away from home to receive treatment by offering guest rooms for people undergoing cancer care. If you are uncertain about travel conditions, call Weill Cornell Medicine and NewYork-Presbyterian’s (WCM/NYP) emergency hotline at 212-746-9262.

Stay in Touch
If you are due for an infusion or injection during an episode of severe weather or other emergency, contact your doctor to discuss the risks versus benefits of finding a safe way to get to WCM/NYP’s treatment center, finding an alternative temporary treatment center, or possibly delaying treatment. In case you do need to seek treatment at an alternative facility, reach out to your insurance provider for help, and bring your insurance card with you to any clinical visits.

Know Your Info
Be aware of your exact diagnosis and disease stage, as well as where you are in the chemotherapy or radiation treatment cycle (if applicable). If you are a participant in a clinical trial, know the trial number, principal investigator (PI), and treatments involved. Should you forget any details pertaining to your medical records, you can easily consult Weill Cornell Connect, WCM/NYP’s secure online health connection that allows you to communicate with your doctor, access test results, request prescription refills, and manage appointments – anywhere, anytime.

Power Through Outages
Power outages frequently accompany extreme weather conditions, and it is vital to prepare accordingly. In the event that you cannot charge your mobile devices or access the Internet, you will want to have physical backup of important medical information, so record the names and dosages of all the medications you take, and keep copies of prescription slips that contain your health care providers’ names and contact information. Also note that some medications that require refrigeration may lose potency in temperature variation. In the event of a blackout, they should be replaced as soon as possible.

Pack the Essentials
Keep a first aid kit including basic essentials like extra bandages and gauze compresses, antiseptic wipes and ointments, over-the-counter pain relief medicines, and 3-4 days’ supply of any oral medications you may be required to take. Medication in its original container may be subject to contamination if exposed to flood water and is best stored in a sealable bag (Ziploc, for example) ahead of a natural disaster. Look to replace any medication that does not appear dry.

In general, but especially after severe inclement weather, be sure to communicate with your cancer care team if anything out of the ordinary happened (such as running out of medication or receiving treatment at an alternative facility) during the emergency episode so that they can update your medical records.

All of the physician practices at WCM/NYP have coverage 24 hours a day, 7 days a week, but even in the rare event that the outpatient center is closed, the emergency department will likely be open. In the case of a medical emergency, dial 212-472-2222 or 911.

Wishing everyone a safe fall and winter season!

FDA Approves Copanlisib for Certain Types of Follicular Lymphoma

The United States Food and Drug Administration (FDA) recently granted accelerated approval to copanlisib for treatment of adults with relapsed follicular lymphoma (FL) who have received at least two prior lines of therapy. Copanlisib is a kinase inhibitor that works by blocking some of the enzymes responsible for cancer cell growth.

The FDA’s decision is based on favorable safety and efficacy results in over 100 patients around the world as part of the CHRONOS-1 clinical trial.

Instead of having to wait years to learn whether a drug actually extends survival for cancer patients, accelerated approval enables the FDA to more quickly approve drugs that fulfill an unmet clinical need for serious conditions. Scientists look to measure surrogate or intermediate clinical endpoints – like tumor shrinkage, for example – that indicate whether a drug is reasonably likely to predict clinical benefit.

As a condition of accelerated approval, a randomized control (comparison) trial will be required to verify the clinical benefit of copanlisib before it can move on to help relapsed follicular lymphoma patients whose treatment options are often limited.

What I Wish Nursing School Taught Me About Having Cancer

Part 2: Reflection

By Katie DeMasi

Getting a cancer diagnosis at any age will rock your world. (See Part 1.) But as a young adult, it seemed to have hit harder. We are a forgotten age group in terms of cancer. When people think of cancer, they often associate it with the elderly or with children – nothing in between. And at this age, we think we are invincible. My life was looking pretty good leading up to this mess. How could anything stop me? But something did. Well, it tried to.

It’s kind of funny. Senior year of college, I took an oncology nursing elective. We didn’t learn about lymphomas, but I learned about chemo drugs and radiation and all of the fun stuff that comes along with them. We learned how to help a patient with everything from pain to hair loss to constipation. Because of that class, I was so prepared for chemo. I had learned about each drug that I would be given, including my anti-nausea meds, so I was prepared when I looked in the toilet after chemo and saw that my pee was red from the Adriamycin.

The day I got my port out! At the hospital where I was originally diagnosed, nine months later.

But the class never touched on the diagnosis part of the whole cancer scenario. Like, someone had to tell the patient they have cancer, right? How do we help them cope?

I wish that we had spent time on that. Maybe I would’ve asked more questions or been more expressive. Maybe I wouldn’t have felt as angry and alone and betrayed by my own body as I did during that first month. Maybe I would have learned how to deal with such life-changing news at such a young age. But I also think that this is one of those lessons you can’t learn from a textbook. It’s about trial and error and figuring out what works best for you.

At such a pivotal moment in my life, I had to put everything on hold. And dealing with that was sometimes harder than battling the nausea or the exhaustion of chemotherapy. Even though there’s a pill for the nausea and I could sleep off the exhaustion, there wasn’t a sure-fire cope for the diagnosis itself.

Talking to people, especially others diagnosed with cancer who are around my age, helped me tremendously through the whole process. Writing and exercising also became great ways to relieve stress and compose my thoughts. These are all things that helped me get to where I am today.

I’m now three months cancer-free and on my way to start my much-anticipated, post-cancer life. It wasn’t the road I had planned to take to get here, but I never listen to the GPS anyway.