easter

Friday, May 25, 2018

Weeks 2&3 Update


Brian’s surgery went well. The surgeon was able to remove the bulk of the tumor, but a small amount was left behind just because of the area of the brain where it was located. It would have been difficult and hazardous to remove anymore. We received the pathology results and unfortunately, the tumor has progressed to a grade IV which is also known as glioblastoma. It’s the most aggressive form of brain cancer.

Yesterday, Brian’s 37 stitches were removed and he continues to heal well feeling a little bit better each day. Today we met with the neuro oncologist and while we got a lot of information, I feel like I’m left with more questions than ever. I have received many messages and phone calls asking how it went, so I thought I could address the news in a single update.

The results from the genetic workup of the tumor from Mayo Clinic are in. Radiation and Temodar, an oral chemotherapy, are the gold standard for glioblastoma. There are a few prognostic indicators doctors use to give an idea of how well someone will respond to treatment. One of these is MGMT methylation (read more here). In very simple terms, as far as I can understand, MGMT is a repair gene in tumors. Methylation is a chemical change that can occur that interrupts the tumor gene’s ability to repair itself. So, simply put, MGMT methylation is a good predictor of chemo efficacy. You want to be MGMT methylated. Brian’s tumor is unfortunately non-methylated meaning Temodar will be less effective. This was not wholly unexpected as his astrocytoma was resistant to chemo as well. Last time we were concerned with a different chromosomal mutation, and the connection between that mutation (1p19q co-deletion) which he also lacked, is variable, but probably related so I really wasn’t surprised with this news. Tremendously disappointed, but not surprised. It was because of the lack of the 1p19q co-deletion and the insensitivity to Temodar that we decided to do whole brain radiation six years ago at his initial diagnosis. This means he is unable to undergo radiation again so close to his last dose. This has less to do with how it would positively affect the tumor than how it would adversely affect his healthy brain tissue.

So where does this leave us? We can’t do radiation, and due to the non-methylation of MGMT, Temodar probably won’t be as effective.

Brian will still be receiving Temodar because it will still be effective in that it targets the tumor; the tumor cells will just be able to repair themselves faster than they would otherwise. There is an FDA approved wearable device called Optune  that creates an electric field around the tumor to disrupt the growth and reproduction of the cancer cells. Brian would wear electrodes on his scalp that connect to a portable, battery powered electric field generator. Very sci-fi. He would wear the device for at least 18 hours a day and it has been shown to increase survival by an average of 4.6 months, which is a lot when you are dealing with glioblastoma. There are very few side effects aside from the inconvenience of toting around the device everywhere you go.

There are also clinical trials we are looking into. The most interesting of these is oncolytic virotherapy (see here). Because of Brian’s age and overall health, Dr. Geoffroy thinks he would qualify. This is a newish, therapy that uses a virus to hijack and destroy cancer cells. Hypothetically, these viruses then replicate to create new virus cells that keep attacking the cancer cells. Some of the phase I trials have been promising.

We see the doctor again in one week and by then he will know if Brian is a candidate for the clinical trial. For now, we are definitely planning on Temodar and likely Optune, but this is a lot to process and Brian is going to think things over and study up for a few days.

I for one, am on information overload and I have a lot of reading I want to do too. There are a lot of decisions to be made and so many things to thoughtfully, and prayerfully consider. Thank you to all of our friends and family for continually reaching out, praying, and helping us to truly know that we are not dealing with this alone.

Friday, May 4, 2018

The Post I Hoped to Never Write...

Two weeks ago today I worked a 3:00 to 11:30pm shift at the hospital. Brian called and left a message because he couldn't find Elliot's pacifier. I tried to call him back but he didn't answer. I tried a further three times throughout my shift, never getting an answer. He had worked the night before, so I just figured he was tired and had gone to bed. When I arrived home at about 12:30am, I was startled to see the front door wide open. All of the downstairs lights were on as was the television. If you know my OCD husband, you will understand my alarm. All I could think was that something happened and they had to leave in a hurry. I ran upstairs to find everyone safe. Brian asked what I was upset about and I told him. He said he had started a movie for he and Ethne to watch and then went upstairs to get Elliot to sleep. He said he must have fallen asleep because he never came back down. Ethne put herself to bed after the movie.
 
I can't remember if it was before or after that night, but Brian also had begun to leave his car door open when he got out. He continued to leave lights on. It was very unsettling to come home and have to shut his car doors for him. He was working a lot of overtime so I just assumed he was exhausted. Of course, brain tumor recurrence always lives at the not quite back of my mind, but he had just undergone a clear MRI in February. There were other indicators though, impulsive decisions while driving, and rapidly increasing fatigue and delayed motor function. It took him forever to put on his shoes for work. Then he got a terrible headache that lasted a few days, and then he started to vomit. All of this happened very quickly so last Friday, just a week ago, I called the oncologist. Monday, they got him in for an MRI, and set up a follow up for Tuesday.
 
The MRI took a long time. The tech called over to the cancer center to speak with his oncologist. Finally, he told Brian he was okay to go home that day. Looking back, I can see how foolish it was of me to keep trying to rationalize all of these little things, but in my gut, I knew something was wrong.
 
Tuesday morning at work, I got a call from Dr. Geoffroy. He told me we needed to see neurosurgery more than we needed to see him and it couldn't wait. The whole world instantly became thick like I was trying to walk through mud. My heart was pounding. I felt sick. I got in the car and Brian called me. I told him I was coming home. Then I called his mom and dad, and my mom.
 
That afternoon we sat across from Dr. Tsung and it felt like no time had passed since we last found ourselves here. Brian has another brain tumor. Right behind where the other one was located and almost as big. Its devastating. I know all the statistics, we have braced ourselves for this news every six months for the past six years, but nothing can prepare you for the sucker punch that cancer is back.
 
Brian will have surgery with intraoperative MRI on Monday. Its been the longest and shortest week. We are taking Ethne to Chicago tomorrow for the symphony and just to spend some time with her. She is worried, I can tell, but she can't understand what is happening. We are trying to keep things as normal as possible for her. This morning she told me she knows what her daddy's head will look like because she saw a picture. I felt a lump in my throat as I remembered that I left the surgery instructions on the kitchen table. I decided to show her a picture of last time after surgery so she won't be afraid.
 
Things feel so different in lots of ways. This time we have our kids. And for them we will be strong. I don't have the luxury of falling apart this time. And I was just starting nursing school last time. This time, I feel confident communicating with the doctors and advocating for Brian. I know what to ask for and how to ask.
 
I don't know if I'm just still a little bit in shock, or what, but I am not as emotional as I was before. Or that isn't right, I am not crying all the time like I did last time. I was a mess. Right now I feel like I am in nurse mode. I just need to get him through surgery and get him home. I am beyond anxious. I haven't slept since Monday. I cannot get my brain to shut off. When its quiet and dark, that's when I struggle. I just listen to Brian's deep breaths next to me and wonder how this can happen again.