Kyle Humphries – GBM survivor.
NEWS 21 July 2022
Kyle Humphries, who lives in New York City, is a GBM survivor who has been through surgery, radiation, chemotherapy, a clinical trial and integrative medicines. For the interview, Kyle was joined by his wife Shannon.
For the interview, Kyle was joined by his wife Shannon.
Kyle: I was diagnosed with GBM in late August of 2020, which was during the pandemic. I’m from Canada and had flown to the US to go on vacation with my then-girlfriend, now my wife, Shannon in Grand Teton and Yellowstone national parks. I remember getting off the plane in Utah and feeling very strange. I had a headache and then threw up.
Shannon: We had been in Wisconsin a few weeks earlier and he’d been wakeboarding and had taken a few falls so I thought maybe he had a concussion from that.
Kyle: They did some sort of tests — gave me an injection of something like Advil — but they didn’t scan my head and so they sent me on my way. But that night we stayed at a hotel in Park City and I woke up in the middle of the night.
Shannon: We had had dinner and as the night went on, the more intense his headache became. I thought the elevation might have played some role in it and I suggested going on a walk for a little bit but he said he didn’t think he could and I thought that was strange. When he came into bed, he was confusing me because he was mixing up words. Then at 2am I heard him throwing up in the bathroom and I thought: okay, we have to go back to the hospital.
Kyle: They did a CT scan at the hospital and the only thing I remember is the image of my own head on the screen and the doctor saying ‘I just want to set your expectations that this may be an aggressive brain tumor’. It was about the size of a baseball. They sent us to a different hospital in Salt Lake City. I stayed there for five days on a bunch of drugs designed to take the swelling down and their goal was to get me into surgery as soon as possible.
Shannon: Two of my siblings and my best friend were living in Utah and so we at least had a network of people there. It was hard for me to get any information from the hospital because I was his girlfriend and not his wife at that time. Being locked out of a hospital during COVID while he was in there, and trying to get access to information was a horrible experience.
Kyle: Covid presented its own challenges. It took a long time for my parents to be able to come from Canada.
Shannon: Before they got the results back they were getting Kyle’s permission to sign off on certain clinical trials because I think they were suspicious it was glioblastoma.
Kyle: They wanted to do genetic sequencing as well. I was extremely lucky with the care that I got. I had my surgery at The Huntsman Center in Salt Lake City and it went very well — they got a full resection which was excellent. And I believe the surgeon who I got access to was one of the best in the country.
Shannon: They were able to perform a full resection with no deficits and we were told he’d probably go through radiation and chemotherapy, and then get an MRI once a year.
Kyle: As I was recovering they scheduled a call with us to give me the results of the genetic sequencing, which had taken some amount of time, and to talk about my treatment path. This was about two weeks after my surgery and it was a difficult call because they were also confirming it was glioblastoma.
My neuro-oncologist told me the median lifespan for people in my position was 10 months and, you know, that was his way of saying that I should really just enjoy life in the meantime. Meanwhile I was asking what I could do to help: what exercise should I do? What food should I eat? But he said something like ‘If I was in your position, I would just eat cookies because there’s not much you can do’. That was difficult to hear at the time but we got through the call and moved on from being treated in Utah to being treated in New York.
I think it is important to hear the truth from your neuro-oncologist but in retrospect I think what would’ve been helpful in addition is that median lifespan varies depending on your genetic condition and other things.
Having hope is extremely important because it motivates you. Balancing hope with a realistic view of what’s possible.
So they explained that the best practice was 12 cycles of radiation and then 12 cycles of chemotherapy. But they also recommended getting involved in a clinical trial. I initially applied for clinical trials at Utah because it’s easiest to apply from within the same hospital because they have all the connections right away.
Shannon: But ultimately he decided he didn’t want to stay in Utah. He didn’t want to live his life there —we wanted to be in New York. So we looked at options in New York and they referred us to Memorial Sloan Kettering.
Kyle: Memorial Sloan Kettering is where much of the training of neuro-oncologists takes place. The doctor I’d had the call with in Utah had done his training there.
Another neuro-oncologist called Dr. Alexis Demopolis was the friend of a friend of mine and he put us in touch. Alexis got in touch with me right away — he lived a walkable distance from me in Brooklyn and came over to our apartment. Alexis is an awesome person and very positive, but also very straight with you. He is really someone who balances that straightforwardness — the reality — with hope, and he also has a great sense of humor.
He helped me navigate my discussions with my neuro-oncologist and told me what I could expect at each appointment, and what the next step should be.
Shannon: Alexis also asked to see Kyle’s most recent MRI and his genetic profiling. He had printed it out at his office when he came over and pulled it out and was like, ‘Oh my God, this is so much better than I expected’. He explained that because of Kyle’s genetic profile and because of the resection they did [getting the entire tumor, and not leaving anything behind other than scar tissue] everything looked good. He wasn’t making any promises but he told Kyle he was in a really good spot.