A Guide to Neutropenic Living

When Brandon was first diagnosed with leukemia, I was bombarded with information. I was overwhelmed with learning about the disease and how it would change our lives. One of the things that was stressed the most, was that we needed to make HUGE changes in our lifestyle to accommodate for Brandon’s lack of immune system.

Cancer treatments, like chemotherapy and radiation, are designed to kill fast dividing cancer cells. Unfortunately, these treatments are not selective and end up destroying healthy cells in the process. One type of cell that is especially sensitive to chemotherapy are the stem cells located in the bone marrow. The bone marrow is the factory for blood cells, including the all-important white blood cells that help to protect the body from harmful pathogens. One of the most important white blood cells are neutrophils, which act as the body’s first line of defense against infection.

During cancer treatment, the patient’s bone marrow is damaged by chemotherapy, which causes a drastic reduction in white blood cell production leading to a compromised immune system. When a person has very little neutrophils, they are considered neutropenic and are at a very high risk for infection. Leukemia patients have an especially high risk for infection, because their treatment is especially designed to kill cancerous bone marrow stem cells. Leukemia patients go through periods where they are severely immunocompromised, and therefore have to take precautions to prevent possibly life-threatening infections.

On Brandon’s first day of treatment, his doctor provided us with general guidelines for neutropenic living, but I had so many questions. I combed the Internet for information about caring for neutropenic patients, but had a hard time finding an all-inclusive guide. I found a lot of great information, but it took hours of combing through different forums, websites, and medical journals. It’s been a long learning process, but I feel like we finally honed in on a set of practices that have kept Brandon relatively healthy throughout the past 18 months. Despite being neutropenic since his diagnosis, Brandon has contracted very few serious infections. Doctors and nurses are stunned when they review his medical history. Obviously, we are doing something right!

I think a lot of patients and their families underestimate the importance of following immunocompromised guidelines. Infection is one of the most serious complications during cancer treatment, and many times it’s completely preventable! I’ve put so much time and dedication into educating myself so that I can keep Brandon as safe as possible. I hope these guidelines can help you or your loved one stay healthy and happy throughout cancer treatment.

Low-Microbial Diet

One of the greatest sources of possible infection is food! Aside from proper food handling, a low-microbial diet is required to limit the risk of infection. Raw, undercooked, and even prepared foods can harbor tons of harmful microbes such as bacteria, viruses, yeasts, and molds. One of the best guides that I have found for a low-microbial diet comes from Memorial Sloan Kettering Cancer Center in New York. Click here to read the full guidelines. I highly recommend reading and learning these guidelines. It’s a lot of information, so it may be helpful to print a copy for easy referencing.

Food Handling

Proper food handling is a huge part of making sure your food is safe to eat. Most of these simple guidelines are overlooked but they are so important!

  • Hand wash, hand wash, hand wash! I can’t stress this more. Hand washing is the easiest way to reduce the risk of infection. Be especially sure to wash your hands between handling raw and cooked foods to avoid cross contamination.
  • Before preparing food, make sure to thoroughly clean and sanitize your work area.
  • Thoroughly rinse fruits and vegetables under running tap water. Whenever possible, we wash produce with Doctor Bronners Castille Soap to make things extra clean. This soap is formulated with non-toxic and natural ingredients, so it’s safe to use on dishes and food.
  • Thaw foods properly! Thaw foods in the refrigerator, not the kitchen counter where the temperature cannot be properly regulated.
  • Keep your refrigerator between 33 and 40 degrees F, and your freezer at 0 degrees F or below.
  • Change utensils while cooking. Don’t use the same spoon to cook and then serve. I also switch spoons about half way through the cooking process to avoid cross contamination.
  • Be sure to have dedicated cutting boards for raw and cooked foods.
  • Make sure foods are cooked thoroughly, especially meat. To me, this is the most stressful part of cooking for someone that is immunocompromised. Spare yourself the second-guessing and invest in a quality food thermometer to make sure that foods reach the proper internal temperature. We have gone through so many thermometers, and this one is the best! It provides the most quick and accurate measurements of any thermometer that I’ve used to date.
  • Always adhere to ‘best buy’ and ‘use by’ dates.
  • Wash the tops of cans with soap and water before opening.
  • After shopping for perishable groceries, pack them in insulated bags and refrigerate them as soon as possible. These items should be the last things in your grocery cart before checking out.
  • Avoid anything from bulk containers at the grocery store.

Left Overs

  • Make sure food is refrigerated within 2 hours of being cooked. Once food has cooled, place it in the refrigerator as soon as possible. 2 hours is the absolute maximum time, but sooner is better. After this time, there is an exponential increase in bacteria growth.
  • Make sure left overs are heated to a minimum of 165 degrees F for 15 seconds
  • Don’t eat any food that has been reheated more than once
  • Throw out leftovers after 2 days

Eating Out

Restaurants are notorious for poor food handling. It’s very difficult for me to place my trust in a team of people that don’t know or understand the importance of proper food handling for the immunocompromised. For this reason, we try to avoid eating out at all costs. Unfortunately, life is messy and sometimes it’s inevitable. When we eat outside food, we stick to a strict set of guidelines to keep it as safe as possible. When we order, I also take the time to explain that Brandon is immunocompromised, and that his food needs to be prepared in a specific way. In addition to the low-microbial diet guidelines, we follow the guidelines below:

  • All food must be cooked to order. Avoid food that is sitting on a steam table or under a heat lamp.
  • Request that all foods be fully cooked.
  • Raw foods usually harbor more microbes, which is why we avoid eating uncooked foods from restaurants. It’s also important to ask questions about what you’re ordering, since many dishes may have cooked and raw components. Make sure all the components are cooked and request that no raw garnishes be added to final product.
  • Avoid juice and smoothie bars at all costs. Most of the ingredients are raw and blenders/juicers are not thoroughly washed between uses.
  • Avoid frozen yogurt and soft serve ice cream since the machines frequently harbor bacteria and are not cleaned on a regular basis
  • Avoid buffets and salad bars. Not only is the food sitting for long periods of time, but also it’s self-serve. Who knows how many people touched the spoon or if it was dropped into the food.
  • Avoid ice made in restaurant ice machines.
  • Avoid using communal condiments. Stick to single serve containers.
  • Avoid milk and coffee creamers that are communal and/or unrefrigerated.

Personal Care

Neutropenic patients are so immunocompromised that their own natural bodily microbiome of bacteria can make them sick. For this reason, it is very important that patients have good personal hygiene.

  • Shower daily, if possible. Use a clean wash cloth and towel every time.
  • Avoid using bar soap. Use liquid body wash instead.
  • Maintain good oral hygiene. Brush at least twice a day using a soft tooth brush. Avoid abrasive toothbrushes since they can cause bleeding in patients with low platelets. Swap to a new toothbrush every 2 weeks.
  • To help prevent mouth infections and sores, use a salt and soda mouthwash frequently throughout the day. For the recipe and to learn more click here.
  • Make sure the patient has their own personal care products such as tooth paste, mouth wash, deoderant, lotion, etc.
  • Make sure the patient washes their hands (for 20 seconds minimum!) before eating or touching their face or mucous membranes (eyes, nose, mouth, etc.)
  • Avoid manicures or pedicures as salons and spas.
  • Keep the groin and anal area clean. Even with good hygiene, these areas full of bacteria. Use baby wipes to clean thoroughly after using the bathroom. Be sure to report any bumps or discomfort in this area.
  • Women should avoid using tampons and vaginal suppositories.
  • Avoid getting cuts or open sores. Try not to pick at your skin and avoid shaving with anything other than an electric razor.
  • If you cut or scrape your skin make sure to clean the area immediately. Keep dry and covered during the healing process.
  • If you are able to receive the flu vaccine, DO NOT get the nasal flue vaccine which contains a live virus. Ask your doctor before receiving any immunizations.
  • Ask your doctor before consuming probiotic pills and beverages.

Home Practices 

  • Hand wash, hand wash, hand wash! Get into the habit of washing your hands (for 20 seconds minimum!) when you first enter your home and frequently throughout the day. Keep hand sanitizer throughout your home for easy and frequent use. *It is worth noting that hand sanitizer is not a equal replacement for hand washing. Some organisms cannot be killed effectively by alcohol-based hand sanitizers. Hand washing is always better!
  • Remove your shoes at the front door.
  • Replace hand towels with paper towels. Hand towels are a moist environment that harbor bacteria and mold.
  • Make sure to disinfect surfaces frequently. Especially counter tops, faucets, light switches, door knobs, remote controls, and frequently used handles (located on the refrigerator, kitchen drawers, toilet, etc.)
  • Wash all dishes in the dishwasher or with warm, soapy water.
  • Thoroughly clean and disinfect all surfaces that come into contact with raw meats, especially poultry. Make sure to have a dedicated cutting board for raw meats only.
  • Invest in a quality vacuum with a HEPA filter and vacuum weekly.
  • Clean your home on a regular basis, especially the kitchen and bathrooms.
  • Put on a fresh set of clothes whenever you come back from the hospital or another busy location.
  • Wash clothes in hot water. Avoid laundromats or communal washing machines if possible.
  • Change bedding once a week and wash wish hot water.
  • Avoid keeping plants or flowers inside your home since they can harbor harmful microbes.
  • Avoid keeping standing water in vases, cups, and soap dishes. Avoid using humidifiers as well.

Pets

Some patients should not have any contact with animals during their treatment. Ask your doctor for information in your specific situation. At the very least follow these guidelines:

  • Wash your hands after coming into contact with animals.
  • Avoid coming in contact with pet feces.
  • Avoid zoos, animals farms, and exotic animals.

Contact With The Outside World 

  • Avoid coming in contact with people that have recently received live vaccines such as vaccines for chickenpox, measles, polio, shingles, and the nasal flu vaccine. Ask your doctor for clarification on certain vaccines if you are unsure.
  • Avoid contact with people that have any signs or symptoms of being sick.
  • Avoid construction sites and dusty locations.