What happens to a person who is dying of glioblastoma multiforme

If you recently discovered that you, a family member, or a friend has been diagnosed with glioblastoma mediformis (gbm), chances are you’re wondering, “What’s going to happen?” Of course, this is just one of the many thoughts that will go through your mind. How do I know this? Because I was with my brother when he was diagnosed.

He did not survive, but was able to receive treatment that allowed him to spend 6 years with his family before succumbing to GBM.

We discovered the tumor after he suffered a grand mal seizure in 1994. He was home alone with his three children, 6, 2½ and 1, when it happened. Her 6-year-old son ran to a neighbor and told him something was wrong with her father. Tests at the hospital revealed that she had a tumor, that’s all we understood. The doctor said we needed to put a “hatch” in my brother’s skull so they could remove the tumor, but be able to repeat the procedure frequently. Why would they repeat the procedure? Because removing a tumor means removing a small portion of the tumor at a time; then when he came back the doctors would go into my brother’s brain again and take out some more of the tumor.

Not satisfied with that!

Doing what I do best, I researched everything I could find: I contacted medical contacts to find the names of the best doctors near us. My brother and I traveled to New York to see a neurologist on Park Avenue. Apparently he was well known for his understanding of brain tumors. At the end of the visit, he recommended my brother to get his affairs in order, because he only had a few months left to survive. He told us that the tumor was cancerous and that surgery would not fix the problem.

A friend of my mother had a nephew who was a neurologist in Boston. We sent you my brother’s MRIs, X-rays and test results. She immediately called and said that the neurosurgeon in Boston could help my brother. We made an appointment and met the doctor. What a difference!

This doctor explained everything so clearly. He offered hope, but no promise of a perfect life.

So what happened next?

Kim, my brother, was scheduled for surgery; but he first had to go through a series of MRIs (flash MRIs) which provided information for the doctor to create a 3D image of my brother’s brain so he could prepare for surgery. During the surgery, Kim had to stay awake so the doctor could ask questions. Kim had to identify pictures and words and answer questions during surgery so the doctor could determine if he was resecting (removing) tissue too close to functional areas of his brain.

He ended up shaving his entire head, because what little hair he had left seemed out of place. The rest of her head had scars that her two-and-a-half-year-old daughter described as looking like a baseball. (I’m sure she was referring to the seams on the ball; Kim’s skull had similar seams.) The risks of this operation included:

• Infection: the patient could get a wound infection or a deeper infection from exposure in the hospital
• Bleeding: This could be a superficial bruise or a deeper collection of blood.
• Loss of smell or loss of cerebrospinal fluid from the nose if the doctor uses a frontal approach to remove the tumor
• Cranial nerve damage resulting in facial numbness, vision loss, or double vision
• The need for a blood transfusion during or after the procedure.
• Weakness, numbness, slurred speech, or paralysis (symptoms similar to those of a stroke)
• Epilepsy, which may require medication (this happened to my brother)
• Surgery may not cure this condition and additional treatment may be needed.
• eat or die

This was just the beginning, but that surgery allowed Kim another six years with her children. In the meantime, she underwent aggressive radiation twice a week and chemotherapy through a combination of IVs and pills. He was incredibly sick from the treatment (vomiting, nausea, exhaustion), but he continued to work. It wasn’t an easy job either; he was a floor sander, lifting 300-pound machines up several flights of stairs. It was during one of these escalations approximately three years after the resection that he had an incredible headache, the worst he had ever experienced.

The local emergency room revealed that he had suffered a brain aneurysm, this is when a weak area in an artery that supplies blood to the brain bulges out. However, when one of these aneurysms ruptures, it causes bleeding that leads to further brain damage or even death. The doctor explained that the only reason my brother did not die from this hemorrhage was because the resection of the tumor had left a cavity or hole in his brain that allowed blood to pool. He further explained that one possible reason the artery weakened was because of the radiation.

It took him several months to heal from this. But when she was cured, she went back to work and raising his three children alone. That’s when things really started to go downhill for him. Doctors gave him high doses of steroids to reduce swelling and Depakote to prevent seizures.

These were some of the side effects he endured:

• insomnia
• Increased appetite and possible weight gain
• Personality changes (ranging from mood swings to psychosis)
• Muscle loss (particularly in the thighs, which support the patient’s weight when standing, sitting, and walking)
• Puffy appearance (distended abdomen, cushingoid swelling of the face, and sometimes a hump in the neck)
• Fluid accumulation in the extremities
• Potential for steroid-induced diabetes

unfortunately my brother made developing diabetes and receiving insulin injections and blood sugar tests several times a day; that was one of my jobs. He had been a highly athletic and active person (e.g., getting up at 4:00 am to pull lobster pots (200 pots) as a hobby before work; then sanding and polishing floors all day; after work he would assemble either her touring or mountain biking for 20 to 30 miles; and finally, she would clean the house and take care of her three children). He really struggled to become sedentary and gain almost 100 pounds.

He was working fine, but he was slower, less coordinated, and his speech was slurred. He had MRIs every three months for two years and then every six months for the next four years. In the fall of 2000, just a few months after a regularly scheduled MRI came back clear, Kim’s speech worsened and she started having headaches again. We went to the hospital and what they told us broke us.

The tumor had not only returned, but it was the worst type of tumor, the fastest growing and inoperable. The tumor had suddenly grown like scattered fingers all over his brain.

Kim quickly lost the ability to walk, talk, feed herself or use the bathroom. She lost all dignity at this point. He had to be fed, diapered and was bedridden. He survived like this for about six months. He didn’t want to give up his independence and tried to walk, but he fell to the ground. He had been 6’2″ and 160 pounds before the cancer; after all the medication, treatment and sedentary lifestyle, he was still 6’2″ but weighed 260 pounds. Trying to lift it was difficult, in fact, impossible. My parents were over 70 years old and trying to pick it up; it took the three of us to get him back to bed many nights. It was exhausting, but absolutely heartbreaking.

Kim stayed at my house until she died. I will never forget the volunteers who came to my home just to sit with my brother, read, talk or tell stories, anything to allow the family a little break from constant care. His willingness to serve kept us from feeling lonely and allowed us opportunities to go to the store without worrying.

The hospice came towards the end and monitored him. He had difficulty communicating. His breathing was so labored that he was rarely lucid and he was in pain. Hospice workers gave him morphine to ease the pain and he stopped fighting for life just a day later, on March 16, 2001. He was 49 years old.

I hope this information helps even one person understand what families facing a GBM diagnosis may be experiencing.