Our Patient of the Month for October is Phil Honsey. Here is his story:
GISTory
Phil Honsey, Ohio, USA, with “Miss Maggie Moo,” one of his nine grandchildren.
In October 2021, I was diagnosed with prostate cancer. Scans done for that prostate cancer showed I also had a gastrointestinal stromal tumor (GIST) with a mass of 7.7 x 10.2 x 10.7 arising in my upper stomach and extending down to the liver. I was surprised, as I was largely free of symptoms. However, since I was in a God-given healthy frame of mind, I was not crushed by the news.
Prior to my diagnosis, in January 2021, I lost my best friend. I had known John for over 50 years. We went to grade school, high school and college together. He threw a 100 mph fastball. John was my best man when I married the best girl ever (more on that later). He was exactly one month younger than me. He was in apparently good health. It was a complete surprise to everyone when he died suddenly of a presumed heart attack.
John’s death was a reset for me. It was my mortality wake-up call. This frame of mind helped me process the news when I was told I had a couple cancers. If my best friend could just drop dead for no apparent reason, then having a couple cancers wasn’t unfair to me.
Last fall, I began taking two targeted cancer drugs, Orgovyx for the prostate and imatinib for my GIST. In March and April of 2022, I underwent daily radiation for my prostate cancer at the Dana Cancer Center at the University of Toledo. The radiation has apparently been successful, to date. The Dana Cancer Center radiation folks are great!
Following that, the plan was to resect the GIST in the summer. However, imatinib did not affect my GIST in the first half of 2022. In fact, the GIST grew a bit. After reading up on recent PDGFRA Exon 18 D842V studies, I consulted with my oncologist and surgeon at the Cleveland Clinic Taussig Cancer Center. Following that discussion, I was prescribed Aykavit (avapritinib) from Blueprint Medicines and began taking it June 10. Support and follow-up from Blueprint Medicines have been extraordinary. More importantly, the Aykavit has shrunk the tumor by several cm in each direction measured. The tumor will likely be resected, along with most or all of my stomach, within the next few months, hopefully after some additional shrinkage.
Coping With a GIST Diagnosis
Meanwhile, I cope with GIST pretty well, especially because I have tremendous support from my loving and knowledgeable wife, Cindy, who is an RN with a ton of common sense. Without her, life would be tough. As with most patients, I am usually pretty tired, and I have a lot of tearing in the eyes, which is common with Aykavit. I find that it often helps to just try to push through the tired times and do some yard work or do minor projects around the house. Best of all is to take a bike ride of 5 to 10 miles on my new recumbent trike. I believe the exercise helps with the side effects of my medications. However, I am not able to be as active as I once was. That’s just the way it is. There are frustrations, there is sadness, and impatience.
Advice for Fellow GISTers
My advice to others is to try to see yourself as if you were one of your own doctors. Participate in your health care decisions. Read up on your mutation(s). You might have more time than your caregivers to zero in on the details.
On the lighter side, make the acronyms and technical stuff fun. Toss a few Exons around in casual discussion and try to impress people with protein structure analysis. Even if they aren’t impressed, they can’t be cold enough to stop you – you’ve got cancer! Use that free pass!
Motto
Because of the blessings of a wonderful family and great friends, I find it is often possible to look at the bright side of things, sometimes even when things don’t seem to be going well. And, most importantly, God is my refuge and strength. I know that I’ll be seeing John again soon.
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
Click here for ideas on how to participate in our It’s Time to Tell the Stories Campaign!
If you want to be our Patient of the Month or Caregiver of the Month, please see the criteria below.
Criteria for Patient of the Month
- Patient must be a member of the LRG GIST Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact Sahibjeet Kaur, Director of Data Mgmt. & Research, for more information: skaur@liferaftgroup.org
