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Staying Strong as a Caregiver: Taking Care of Yourself

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Written by: Courtney Benisch – Regional Relationship Coordinator for Head for the Cure

The role of being a caregiver is all in the name, caring for someone else in any type of capacity. We care for our loved one battling a terrible disease 24/7, but do we ever return the favor to ourselves? Being a caregiver for my mom took a toll on me and my family mentally, physically, and most of all, emotionally. We never thought to take a step back and care for ourselves when my mom was fighting her battle with brain cancer because our focus was on her, and any doing anything else felt selfish. I want you to know that you are not the only ones who have felt this way.

Being a caregiver is a title you will have for the rest of your life, but at a point you realize it goes both ways: caring for your loved one and yourself. After my mom was diagnosed with a Glioblastoma, I naturally took the role of the leader. I made sure my mom, stepdad, and brother were all doing okay, but I never looked inward. I internalized everything because I knew I had to keep strong for my family.

After my mom passed, I moved out of my parents’ house, moved back in with friends and returned back to work. I thought that going back to living how I did before my mom got sick was the easiest way to grieve. I would distract myself by immersing myself into work, going on trips, and distracting myself any way I could. I was wrong and I am still paying for it to this day mentally and emotionally.

According to the Anxiety and Depression Association of America 40%-70% of caregivers show symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression.

There isn’t a certain way to process trauma or grief, but there are healthy and non-healthy ways to go about it. There is a reason why they call it the “stages” of grieving because you go through them in different ways and at different times of your life. Knowing myself, I knew I had to talk to someone about what I had gone through. The hospice facility that my mom was at offered counseling, so I started going right after she passed.

When I moved back in with friends, I started to feel like a “normal” 20-something again, but I was still internalizing every feeling about my losing my mom. My new normal wasn’t what I thought it would be. I would get headaches from the stress, my anxiety skyrocketed, and depression set in. I knew at that point I would need to see a licensed psychologist. It took a while to find the right one, but when I did, it helped immediately.

My family and I have learned to manage our grief in different outlets that work for us. We still participate in Head for the Cure events around the country to honor my mom. My step dad helps out with a local non-profit, BeHeadStrong, since they were a huge part in helping us when my mom was sick. Also, as a high school teacher my brother has connected with other students who have gone through the same thing.

There is no shame in going to talk to someone about your life and your feelings, and as a caregiver I felt like there was a stigma about going to therapy. Even three years after my mom’s passing, I continue to go because the one thing I’ve learned is that grief will be with you forever, but you are in control of how you manage it. As a caregiver, at any age, you need to take care of yourself too. Whether it is taking mental health days, going to concerts, talking with a therapist, the options are endless.

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Facts About Pediatric Brain Tumors

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Brain tumors can affect people of any age, gender, race, and at anytime in their lives. This means there is an equal need for research in pediatric brain tumors as there is adult brain tumors.

  • More than 28,000 children (0-19 years of age) are estimated to be living with a brain tumor in the US
  • The most prevalent brain tumor types in children (0-14):
    • Pilocytic Astrocytoma
    • Malignant Glioma
    • Medulloblastoma
    • Neuronal and mixed neuronal-glial tumors
    • Ependymoma
  • The cause of most childhood brain and spinal cord tumors is unknown.
  • About 4,600 children and teenagers are diagnosed with a primary brain or central nervous system tumor each year, or equal to 13 new cases per day.
  • While survival rates for many childhood brain tumors have improved over the past 30 years, survivors often suffer from lifelong side effects caused by their illness as well as by treatments such as surgery, radiation and chemotherapy.
  • Malignant (fast-growing) brain and spinal cord tumors are slightly more common in boys, while non-malignant tumors are slightly more common in girls.
  • Pediatric brain tumors are the leading cause of cancer-related death among children and adolescents ages 0-19, surpassing leukemia.

Statistics provided by:
A Kid’s Brain Tumor Cure PLGA Foundation
Pediatric Brain Tumor Foundation
National Brain Tumor Society
American Cancer Society

Stanford Researchers find promising drug pair for DIPG treatment

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Researchers at some of the top children’s cancer research centers in America have a new approach to treating pediatric brain tumors, and it is raising hopes that a new drug treatment for DIPG could be possible.

Pediatric brain tumors are among the most dangerous cancers and diseases children get. While common childhood cancers like lymphoma have seen improved survival in recent decades, brain tumors remain difficult to treat in children. 

A young boy with his brain glowing white.

By and large the brain tumors that impact children are different from those that strike adults. The most common children’s brain tumors are known as diffuse midline gliomas (DMG), DMGs include diffuse intrinsic pontine glioma (DIPG), thalamic glioma and spinal cord glioma. DMGs are highly resistant to treatment: to date no child has survived DIPG. 

But a new pair of drugs—panobinostat and marizomib—have shown promise by working together, killing cancer cells and turning off a gene mutation that helps the cancer grow. As a strategy, this is not unusual. Very few cancers can be treated effectively by a single drug alone. But for DIPG, which so far has been studied less than many other cancers, researchers first had to conduct an exhaustive search just to find a pair of drugs that might work well together. 

A group of researchers at Stanford University, led by pediatric neuro-oncologist Michelle Monje, teamed up with researchers at the National Institutes of Health to find such a pair. With the help of robots that can run tests far faster than human lab assistants, they explored of over 9,000 drug pairs on lab-grown strains of DIPG and identified a leading candidate. 

They focused on drugs that were approved or close to approved for human patients, attacked cancers by different mechanisms, and were known to cross the blood brain barrier. And this pair emerged as the most promising. 

According to Monje, the combination is now advancing towards clinical trials for children with DIPG. 

She cautions that this will not likely be enough to cure DIPG. A multi-pronged approach will ultimately be necessary, involving immunotherapy and a better understanding of the tumor microenvironment of DIPG.

Side Effects of Common Brain Cancer Chemotherapy Medications

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One thing that almost all patients with brain cancer share is experiencing the side effects of the treatment for their tumor. Unwanted or problematic effects of medication that are beyond the intended scope of their use are all side effects. They might be minor, or they could be extremely debilitating, but side effects are usually consistent, and once you’re used to the medication, they can even be fairly predictable. Knowing what to look for can help you and your treatment team manage side effects as they occur.

How chemotherapy drugs work to treat brain cancer

Cytotoxic and cytostatic: Two treatment strategies 

All chemotherapy medications are meant to disrupt the way that cancerous cells duplicate, causing tumors to grow, however there are two major categories of chemo drugs. Cytotoxic medications work by killing the cells directly, while cytostatic medications are meant to stop the cells from dividing. It is important to note that any chemotherapy medication will affect both healthy and cancerous cells, a process that may produce a wide array of side effects in patients.

Cytostatic chemotherapy treatments, because they work by preventing cells from dividing, may have especially negative consequences for renewable tissues such as hair and bone marrow.

How common are side effects from medications used to treat brain cancer?

Side effects are extremely common among patients receiving chemotherapy of any kind, in fact one study found that 86% of patients experienced at least one side effect during their chemotherapy treatment. However, while all chemotherapy treatments have common side effects, patients shouldn’t expect to experience all of the common side effects associated with a specific medication. Just like each brain tumor is unique, so is the experience of each patient. 

The side effects we’ve listed below are understood to be “common” among patients, meaning that over 30% of people who use the medication report experiencing one or more of the symptoms.

Are side effects for chemotherapy treatment of brain cancer treatable or reversible?

Yes. Your treatment team can help you with additional medications to ease your experience of any side effects that you may be experiencing during chemotherapy. Some people find that keeping a journal to track your medication and any reactions helps to track side effects, making it easier to report any issues to your doctor. 

Additionally, almost all side effects are reversible, meaning they should disappear after a chemo treatment cycle is complete. Some may fade quickly, in a few days, while others may take a few weeks to completely resolve.

Avastin (Bevacizumab) 

  • Generalized Weakness
  • Pain
  • Abdominal pain 
  • Nausea & vomiting 
  • Poor appetite 
  • Constipation 
  • Upper respiratory infection 
  • Low white blood cell count (This can put you at increased risk for infection) 
  • Proteinuria (kidney problems)
  • Nose bleed
  • Diarrhea 
  • Hair loss 
  • Mouth sores 
  • Headache

Carboplatin

  • Low blood counts (including red blood cells, white blood cells and platelets)
  • Nausea and vomiting usually occurring within 24 hours of treatment
  • Taste changes
  • Hair loss
  • Weakness
  • Blood test abnormalities: Abnormal magnesium level

Cisplatin

  • Nausea and vomiting. Nausea may last up to 1 week after therapy. Anti-nausea medication is given before the infusion, and a prescription is also given for use after.
  • Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia, and/or bleeding.
  • Kidney toxicity. Effects on kidney function are dose related, observed 10-20 days after therapy, and are generally reversible.
  • Ototoxicity hearing loss, ringing in the ears.
  • Blood test abnormalities (low magnesium, low calcium, low potassium)

Irinotecan

  • Diarrhea; two types early and late forms.
    • Early diarrhea: Occurring within 24 hours of receiving drug, accompanied by symptoms runny nose, increased salivation, watery eyes, sweating, flushing, abdominal cramping. (This can occur while the drug is being administered.  If so, alert your healthcare professional promptly. Medication can be given to stop and/or lessen this early side effect).
    • Late diarrhea: Occurring greater than 24 hours of receiving drug, usually peaks at about 11 days after treatment.  Because of concerns of dehydration and electrolyte imbalances with diarrhea it is important to be in contact with health care professionals for monitoring, and for medication and diet modifications advice. 
  • Nausea and vomiting.
  • Weakness.
  • Low white blood cell count. (This can put you at increased risk for infection).
  • Low red blood cell count (anemia).
  • Hair loss
  • Poor appetite
  • Fever
  • Weight loss

Lomustine

  • Low blood counts (bone marrow suppression). Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.
  • Nausea and vomiting. Usually within 3-6 hours of taking medication. Taking dose at bedtime, with an anti-nausea medication, significantly reduces the incidence and severity of this side effect.

Temodar (Temozolomide) 

  • Nausea and vomiting
  • Constipation
  • Headache
  • Fatigue

More Information and Related Sources:

https://www.cancer.gov/about-cancer/treatment/drugs/brain

https://2knaef3o0jpz4ff42k23tr6l-wpengine.netdna-ssl.com/wp-content/uploads/2018/03/chemotherapy.pdf

https://www.chemocare.com/search.aspx?q=glioblastoma

http://chemocare.com/

Managing Symptoms

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Written by Lisa Joerling – Head for the Cure Ambassador and Ganglioglioma Survivor

Managing the symptoms of my brain tumor is part of my everyday life. Since my tumor has come back, in the last year my symptoms have increased and I have started a new medicine to control the focal seizures in my right hand. The biggest symptoms I am managing currently are fatigue, focal seizures in my hand, loss of sensations in my hand, and headaches. I have adapted to each of these symptoms and side effects differently. 

Focusing On Yourself

I focus on self-care each day to maintain my physical and mental health. I love to workout, and exercising has been a great way to keep my body healthy and my anxiety down. I like to use a variety of workouts; strength classes, yoga classes, cardio, and running are all helpful for me.

I have adapted to the loss of sensation in my right hand by doing hand therapy and learning how to do most things with my left hand. I have tried various ways to reduce the nerve pain in my right hand including; hot/cold packs, compression gloves and this past summer I started acupuncture. The acupuncture has been great, and my hand pain is almost completely gone. And it has helped my fatigue and seizures, as well. I also keep notes on my phone for my doctor’s appointments. This is helpful for me to be able to describe when I am having headaches and any patterns I am seeing in my symptoms.

The seizure medication I take can make me very tired and this year I focused on setting boundaries on how much I can do and when. I have to take time to rest and get enough sleep so I can function well the next day. This can be a hard thing for people around me to understand because some days I feel great and energetic, while some days it can be hard for me to do things with my fatigue.

It’s More Than Physical

A brain tumor also brings more than just physical symptoms. Yoga is a great stress reliever, massages are an awesome relaxation tool, and I see a psycho-oncologist at the Westwood Cancer Center in Kansas City to help manage the anxiety around my health.

I have a great support system of family and friends and talking about my health to them is very therapeutic for me. I often schedule something fun or do something special for myself around the time I have MRIs or appointments for a great distraction. 

One Day at a Time

My advice to anyone who is also managing side effects and symptoms of their own is to be patient with yourself. Some days are good, some are bad, and a lot are in between. You are the expert on you and how you are feeling. Make sure you do what your body needs. Whether that is getting more sleep, starting to or changing your exercise, eating more nutritious food, finding more social interaction, having alone time, different types of medicines, the list can go on and on of what you need for yourself. It all happens one day at a time!