I finished my 2 year clinical trial with pembrolizumab after a few scrapes, emotional bruises, and two new scars on my head (one from surgery, another from a seizure). That is 40 plus trips to Chicago which included labs, an appointment, and then a 30 minute infusion of pembrolizumab. All that took about 3 hours with 7 hours on the road. That’s not including pre and post-op testing or MRIs every 9 weeks (plus a few extra MRIs for questionable findings).
So, what are you doing now, Dr. Alguire? Well, I am so glad you asked. After consulting with my PCP (dad) and primary oncologist (sister), I will be continuing pembrolizumab off label.
I always said I would wait until the end of the trial to decide on my future treatments. Now, I don’t think I could do anything but continue. If I had recurrence off pembro, I would be kicking myself. When my primary oncologist prescribed it, Priority Health promptly denied it as an experimental therapy. Next, we applied to get it as compassionate usage directly from Merck. It was promptly approved, and so I can continue on the medication without paying for it (at $12,000 a dose every 3 weeks, it adds up pretty quickly). Unbeknownst to me, my Mom was thinking about selling my childhood house on Lake Avenue to pay for these treatments if not covered by Merck.
“I hate cleaning this big old house anyway.” Well MK, you gotta keep on cleaning.
Honestly, I do not know if it is actually helping me. In theory, with a high burden of mutations in my GBM, my immune system would only need a nudge to recognize these cells as abnormal and wipe them away. Yay for extra malignant mutations! In practice, it is really uncertain if it works in GBM or for me. There were only 4 patients in my phase 1 clinical trial. That is 4 as in four. Two of us are still without recurrence at the end of the trial. That’s 50% survival without recurrence at 2 years.*
These drugs usually work really well in a small percentage of patients in other cancers (ie, specifically melanoma and non-small cell lung cancer). So, I will travel to Lemmen-Holton Cancer Pavilion, right across the street from my work at Meijer Heart Center, and get my 30 minute infusion. I can actually bike there, but I do not think Staci will let me for my first infusion. I may even be able to work on those days. Nah. I will still travel to Northwestern for my MRIs, but that will be every 2 – 3 months or so.
Figure: Upper left, an old picture of Connor and me while I get my infusion. Bottom left, best nurse ever, Lily Santana. Right, Chicago from the 21st floor of Northwestern University (the oncology floor).
In other news, I had several visitors from Ann Arbor: Sara Saberi, Scott Visovatti, Brahmajee Nallamothu, and their Uber driver, Peter Hagan. After a 2 hour drive from Ann Arbor, we went out to dinner at the Grove, and then back home for them. I’ve been replaced in Viso’s life with Brahmajee, but I am okay with that (you may remember Viso from earlier photos at my first surgery). I am actually happy for them. Brahmajee is a great guy. Hagan reminisced about days in the echo lab that made me laugh so hard, I started crying. It was about an article in the Ann Arbor News about a naked man at a local library and our discussion in the echo lab afterward. As he said, if you are explaining, you are losing, so I’ll just stop there. Trust me, it was really funny. Sara reminds me of my neurooncologist in Chicago: that’s the highest compliment I can pay to either of them.
So, there you go, Viso. You got your shout out. Thanks for visiting.
Figure: Left, the visitors from Ann Arbor. Right, the last time I saw Viso was after my first surgery (with Shelley Schmidt on my left).
A Brief Note About my Blog
wordpress.com, the website that hosts my blog, gives me stats about who visits the site and where they are located. I’ve had about a 100 a day or so over the last few weeks. But I have had one visitor from Finland daily for about a month. Whoever you are, here is your shoutout, too.
River Bank 2018
Spectrum has replaced Metro Hospital as one of the title sponsors for River Bank Run 2018. 5th/3rd is still a title sponsor as well, but they no longer ‘own’ the race. In addition, Amway is a new title sponsor with Spectrum. What does this mean? Not a whole lot except as a sponsor, we provide medical support for the race. David Wohns was asked to represent SHMG Cardiology, and as any good leader, he delegated me as a adequate cardiology representative. I feel so honored at those meetings. My only condition was that I could still run the 25K. I’ll be available for cardiology care during the race if you are going about my pace, but Todd Chassee is an ER doctor, so probably doesn’t need me. Maybe we’ll wear our volunteer T-shirts while we’re running in case anybody around us needs help. After I finish, I plan to help at the end of the race for all those behind me. If you beat me? Well, don’t expect any cardiology care.
The key to running a really fast River Bank is three fold. Run it a couple of times to get used to the distance. Start out kind of slow, and try to negative split (go faster the second half of race then the first). Over a few years, start your fast tempo a little earlier in the race until you can run the same, fast pace (for you) the whole time.
The second piece of advice is interval training. Start and stop. Run as fast as you can for a short bit, and then rest mixed in with longer runs and tempo runs. We almost always do this in the pool, and I incorporated into my running. This training will maximize your endurance (or minimize your time).
The third piece of advice is to throw out the training plan as recommended on the website over the last few years. It is just too much running. Better yet is to cross train with biking, swimming, and weight lifting. Or, that’s just what I do.
Let me take you back to October, 2015 when I was first diagnosed. Allison was 10, Connor was 7, Ella was not even Queen Elizabeth, yet. Mia was still a baby sucking on a pacifier(s). I really did not think I would feel this normal in 29 months. In fact, I kind of thought I would not feeling anything at all. Now, I am training for the River Bank Run (again). Recovering from a running injury (or just older). All is well.
Allison is doing well in school. I do not know what she does in her room at night, but seems to be working out okay. Connor, our most emotional kid, is swimming and playing soccer like a champ. He had the game winning shot in his last rec basketball game. This came after a wide open lay-up that he missed with about 45 seconds left and down by one. They got the ball back, ran the same play, and he nailed it on his second chance. He went from crying to jubilation over a short period of time. He also has the perfect swimming birthday in late March, right after the state meet. Not so much for my December bday Allison, and let’s be honest, girls swimming has traditionally been a lot more competitive in the younger age groups. Ella, or Queen Elizabeth, won the 25 free at the WMSL A meet and quickly shut it down for the year. She likes to be read to while she does her crafts at night. I cannot tell if she is really paying attention, but when I quiz her, she usually answers correctly. And Mia is just a craftaholic. She must get that from her Grandma Alguire.
Figure: Left, the 9-10 boys and 11-12 girls 100 IM champions (and cousins) at the JO meet. Ella with her co-champion at the WMSL meet Kate Blake (Ella won the 25 free, Kate the 50 free). Middle right, my sissies and me volunteering at a swim meet. Right, Connor stops by after his 100 IM to get positive feedback from Staci. He loves positive feedback.
Figure: Upper left, at Grandma Constant’s 90th birthday part, the youngest great grandchild stole the show. Middle top, I went with Connor on his 4th grade field trip to Lansing to see the capital. Middle right, my fat tire bike. Lower pics: left, all the Alguire cousins. Right, Connor has special time with Anna Ackerman.
In conclusion, all is well at our house. There are no Stormy Daniels out there in my past that I have paid hush money too (that Staci knows about), but if I keep doing well, I may need to spice up this blog a bit.