New Normal

I’m getting sick of talking and scanning and treating and writing and thinking about my brain. During my last few updates I’ve been vocal about the ups and downs of the past year: Good scan. Seizures begin. Bad scan. No change from last scan. Might be growing. Might not be growing. Every month we pack up the family and head to Rochester, MN to find out the latest. At every visit, I feel like I’m visiting the doctor for the biggest news of my life. It is so stressful. People tell me it could be worse, but it’s no way to live.

A few weeks ago Alicia and I decided to switch things up and head to Mayo Clinic in Jacksonville, FL to visit my original doctor (Dr. H). We wanted to learn more about clinical trials that I may be eligible for, and we wanted to get another opinion on my case. In addition to Dr. H, I made an appointment with Dr. C at MD Anderson Cancer Center. He runs several clinical trials for brain cancer.

I had my scan on Monday, March 8th. Mayo Clinic in Jacksonville is newer and nicer looking than Rochester. It’s smaller and easier to get around. There’s an alligator pond outside. Maybe I could jump in if the scan is bad? On Tuesday, we headed back to Mayo for the news.

“When comparing the scans sequentially over time I think it is clear there is evidence of slow tumor progression. I think he should be treated. I doubt he is a candidate for meaningful resection given the extent of the tumor posteriorly in the temporal lobe. At this time, we do not have a trial for which he would be eligible. I think a restart of the temozolomide would be the obvious 1st choice in terms of probable efficacy and low toxicity. I do not support use of an immune checkpoint inhibitor off trial given the potential toxicity and lack of known efficacy. We talked about the Optune device which I could probably get approved rather easily. I endorsed its use. Yes about repeating radiation which I think is an option in future but one which I would like to reserve.”

-Dr. H Clinical Notes (3/9/21)

Dr. H spent over an hour with Alicia and I reviewing every MRI scan I’ve had, and answering all of the questions we could think of. The good news is: There is no evidence of tumor growth between the March 8th scan and the Feb 8th scan. However, she’s still concerned that we are seeing incremental tumor growth. She agrees with Dr. R that we need to start treatment. We ask about some of the clinical trials available, as well as some drugs that could be prescribed off label. She says: “If you were my son, I would encourage you to begin Temodar (Temozolomide).”

Dr. H doesn’t think I am eligible for some of the clinical trials I thought I qualified for. Most of the trials are for Grade 4 brain cancer – mine is Grade 3. As for the trials I do qualify for, she encourages me to consider a treatment that is proven to work. Like Dr. R, she doesn’t think surgery is a good option due to the location of the tumor. She is open to using more radiation treatments, but not yet. She thinks that the combination of using Optune and Temodar would be a great option. The best news? Dr. H says I could be going 2-3 months in between scans. She acknowledges the stress of having a scan each month, and says she will follow up with Dr. R back in Rochester regarding this.


At MD Anderson, Dr. C evaluates my scans and notes from Mayo Clinic. He begins our visit by telling me bluntly that “Cases like this frustrate the hell out of us doctors.” He says that this “waxing and waning” of the tumor is something they see from time to time, and the question is how and whether to treat. He says I am not eligible for any of the clinical trials he runs without a biopsy confirming I have grade 4 cancer. Dr. C says if we could confirm I have grade 4 brain cancer, I would qualify for his trial that injects polio virus into the tumor. Better than herpes virus trial I mentioned last month.

For now, Dr. C says the safe bet is to begin Temodar. He also recommends the use of Optune if my insurance will cover it. As for the monthly scans, he says “Having a scan once a month would be torture.” He agreed with the approach of having a scan every 2-3 months while we continue monitoring.


Back at home, I received a notification from my pharmacy that Dr. R ordered my chemotherapy prescription. Alicia and I got our first Covid-19 vaccines last week. After we get our second dose of the vaccine next month, I’ll start chemotherapy soon after. Part of me doesn’t want to risk getting covid while on chemotherapy. The other part is dragging my feet because I don’t want to start chemotherapy again. I’m not sure if I want to pursue the Optune treatment yet, because I just want a normal summer. I keep hearing from the doctors that we have plenty of options to treat this damn disease, but I wonder if leading a completely normal life without brain cancer will ever be an option again.

3 Comments +

  1. What ever you decide to do, will be the best decision for you.
    You’ll continue to be in my prayers 🙏

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  2. Justin, I am sorry you are going thru this nasty stuff. One light in your tunnel is less frequent scans. Been thinking about you. On the brighter side, summer is coming, our door at Seagull is always open for you and Alicia. Think about taking a look at our cabin calendar and see if an open date for our Ogish Cabin works for you. Head north
    to the call of the loon and a starry night sky. I am happy to comp all for you. Let me know when u r coming. Thinking about you…Deb from Seagull Outfitters

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  3. Always sending love, comfort and support to you two. The journey has been long for both of you yet you continue to move together to endure the unknowing… with an ever deepening bond that is the basis for your strength. Thankful you have treatment options and hope. We love you both so much.

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