Learning to Rethink Cooking After a Glioblastoma Diagnosis
By Sandy, Optune® Care Partner • 5 min read
Opting for Better Choices
When Ira was diagnosed with glioblastoma, we faced a multitude of decisions—one of them being our day-to-day food choices. Even though medical professionals remain divided on whether a person’s diet can positively or negatively affect the progression of a glioblastoma tumor, we mutually agreed to make significant adjustments to our overall eating habits. This occurred around the time of Ira’s craniotomy, long before he started using Optune.
Researching Nutrition Options
To determine our best path, I spent, and continue to spend, countless hours reading about dietary options. We heard about the keto diet, but Ira felt that the diet would be hard to follow while I was concerned that a restrictive diet would have more negative outcomes rather than positive ones. Of course, talk to your doctor before making any significant dietary changes.
Prior to Ira’s diagnosis, we had attempted to eliminate snacking after dinner. To help stabilize blood sugar levels, we adopted a stronger commitment to eat within a 10-12-hour window.
During my research, I came across two specialized cookbooks for cancer patients. These books address the effects of cancer treatments and provide a nutrient-dense diet with minimal sugar and processed foods. I used these books, as well as many others, to create weekly shopping lists and menus. More than two years later, I still use recipes from these books.
Implementing Food Changes
Early on in our diet journey, I removed a significant number of processed foods from our kitchen. I replaced ultra-refined foods with items that had recognizable ingredients. When selecting boxed, bagged, or canned foods, I choose organic items with no additives. Our kitchen is filled with organic fruits, vegetables, whole grains, and seeds. Instead of using white flour, I substitute with nut flours and ancient grains. Small amounts of fruit, 100% maple syrup, coconut sugar, and agave syrup are now added to recipes instead of sugar.
Our diet also includes small portions of fish several times a week. For a handful of special occasions, we may eat organic grass-fed beef or organic pasture-raised poultry. Our dairy consumption has also been cut significantly. Occasionally, I will cook with ghee or use goat cheese in recipes. I bake with organic, pasture-raised eggs, and sometimes chia or flax eggs are substituted.
Cooking, a Labor of Love
The commitment to cooking without using processed foods is a labor of love. By making almost everything in our kitchen, I have more control over what we consume. I’ll make convenience foods from scratch to avoid the addition of potentially dangerous additives and excessive amounts of sugar and salt. I continually rotate ingredients on a weekly basis so that our diet remains diverse. On most days, more than half of our dinner plates are filled with plant-based foods. Several days a week, our breakfast menu is filled with vegetables.
To accomplish our nutrient-dense goals, I spend an incredible amount of time planning our weekly menus, trying recipes with unusual ingredients, and devoting large blocks of time to cutting and slicing produce and chopping nuts. Instead of relying on store-bought soups, sauces, dressings, and smoothies, I create my own. To maximize my time, I prepare large batches and freeze portions for later consumption.
Sometimes, it’s hard to predict if a recipe will be palatable. I shook my head in disbelief when I came across a recipe for brownies made with black beans and avocados and another dessert made with chickpeas instead of flour. Both are delicious and have been prepared several times.
Since Ira appreciates my efforts, he comes to my rescue when the pots, pans, bowls, and utensils fill the sink. He graciously accepts the responsibility to clean up the messes I create while cooking. Occasionally, Ira helps with the laborious prep work, too.
Eating with Others
None of our family members or friends adhere to our nutrient-dense plant-based diet. We often need to bring our own food to social gatherings or make alternative plans. Often, we meet at vegetarian restaurants. Every now and then, we will be in a situation where our dietary requirements cannot be adequately addressed. Instead of simply not eating, we will eat foods that we consider the healthiest options at that moment.
Traveling with a Restricted Diet
Not only do we cope with the reality of traveling with Optune, but we also take on the challenges of eating healthy while on the road. On travel days, we often bring our own food. Our favorite options include homemade trail mix, cut-up fruit and vegetables, and custom-made sandwiches or salads. I also pack non-perishable, nutrient-dense baked goods.
Sometimes, we end up consuming back-to-back cheat meals. But whenever possible, I make sure we eat an abundance of fresh produce and avoid excess sugar and processed food. Many restaurants, cruise ships, and cooking tours are willing to accommodate our dietary requests when we provide advance notice. On cruise ships, we tend to order an extra bowl of steamed vegetables, share the vegetable entrée, or select nutritious salads.
Tips for Optune
Anyone who has been around Optune understands the cumbersome nature of the battery pack. When Ira is at the sink slicing vegetables or washing dishes, he often places the battery pack on the floor next to him or puts it in a carrying bag around his waist.
Sometimes a restaurant will provide an extra chair for Ira’s Optune. If not, Ira slings it across the back of his chair.
Optune has been a key factor in Ira’s treatment against glioblastoma, but the power of a healthy diet should never be overlooked. The key is to identify what will work for the glioblastoma patient. Each person’s journey is unique. Talk to your doctor if you have any concerns with your current diet.
Important Safety Information
What is Optune® approved to treat?
Optune is a wearable, portable, FDA-approved device indicated to treat a type of brain cancer called glioblastoma multiforme (GBM) in adult patients 22 years of age or older.
Newly diagnosed GBM
If you have newly diagnosed GBM, Optune is used together with a chemotherapy called temozolomide (TMZ) if:
- Your cancer is confirmed by your healthcare professional AND
- You have had surgery to remove as much of the tumor as possible
If your tumor has come back, Optune can be used alone as an alternative to standard medical therapy if:
- You have tried surgery and radiation and they did not work or are no longer working AND
- You have tried chemotherapy and your GBM has been confirmed by your healthcare professional
Who should not use Optune?
Optune is not for everyone. Talk to your doctor if you have:
- An implanted medical device (programmable shunt), skull defect (missing bone with no replacement), or bullet fragment. Optune has not been tested in people with implanted electronic devices, which may cause the devices not to work properly, and Optune has not been tested in people with skull defects or bullet fragments, which may cause Optune not to work properly
- A known sensitivity to conductive hydrogels (the gel on the arrays placed on the scalp like the ones used on EKGs). When Optune comes into contact with the skin, it may cause more redness and itching or may rarely cause a life-threatening allergic reaction
Do not use Optune if you are pregnant or are planning to become pregnant. It is not known if Optune is safe or effective during pregnancy.
What should I know before using Optune?
Optune should only be used after receiving training from qualified personnel, such as your doctor, a nurse, or other medical staff who have completed a training course given by Novocure®, the maker of Optune.
- Do not use any parts that did not come with the Optune Treatment Kit sent to you by Novocure or given to you by your doctor
- Do not get the device or transducer arrays wet
- If you have an underlying serious skin condition on the scalp, discuss with your doctor whether this may prevent or temporarily interfere with Optune treatment
What are the possible side effects of Optune?
The most common side effects of Optune when used together with chemotherapy (temozolomide, or TMZ) were low blood platelet count, nausea, constipation, vomiting, tiredness, scalp irritation from the device, headache, seizure, and depression. The most common side effects when using Optune alone were scalp irritation (redness and itchiness) and headache. Other side effects were malaise, muscle twitching, fall and skin ulcers. Talk to your doctor if you have any of these side effects or questions.
Please click here for the Optune Instructions for Use (IFU) for complete information regarding the device’s indications, contraindications, warnings, and precautions.
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