As a part of our Faces of Courage series, we are featuring a patient story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.
Our Patient of the Month for March is Alan Henderson. Here is his story:
Primary: KIT Exon 11 Secondary: KIT Exon 17
In November of 2011, the results from my routine blood work from the VA indicated that I had cancer. I requested another round of blood work just to be certain and the results came back the same. I had no reaction. I could not believe it, yet in my mind I kept telling myself not to worry for My Heavenly Father was in control.
Since then, I’ve had one operation and took Gleevec 400 mg a day from 2012-2016. I was not on any treatment for two years and then in November of 2018, the tumor came back. The doctors wanted to operate on me again, but I refused. I restarted Gleevec but this time I was on 800 mg. Unfortunately, I did not stay on Gleevec for long because I had progression. I started Sutent at 50 mg for 2 months but had to stop that too because of progression. Since then, I have been taking Stivarga, 160 mg a day. My next CT scan is in a few weeks. Throughout this entire process, I have had no concern or care; with my wife by my side I have just dealt with it and I leave it to my Creator.
But GIST loves the word “inevitable”, and I had setbacks. Following surgery, I took Gleevec for a short time as an adjuvant. But, within six months, two small tumors appeared in my lower abdomen, along with spots throughout my peritoneum. Renewing Gleevec shrank the tumors, and Gleevec continued working beyond statistical expectation. Yet four years later, secondary mutations allowed one tumor to start growing again, involving my small intestine and bladder. So, there was another bowel resection on November 15th, 2017, at the University of Chicago Hospital, along with removal of part of the bladder.
That reset the clock for 18 more months of Gleevec. However, a CT scan in June of 2019 confirmed that all the multiple tumors were now Gleevec-resistant and growing. I moved on to Sutent and then Stivarga. Neither stopped progression, and I had intolerable side effects of hemorrhaging and hand-foot-syndrome. Then, just when I needed it, Deciphera created an early access program for its experimental drug, ripretinib. Lucky again, I qualified last week for early access through the Cleveland Clinic. To me, the cup looks half full again.
Finally, going back to my unlucky, yet lucky, introduction to GIST, there was another silver lining. If that health check for the Peace Corps had missed the tumor, I might have taken the arc of my life even further from Appleton. If so, I would not have reconnected with my high school sweetheart, Sue; we would not have married last May; and I would not now be so happily, madly in love.
Coping with GIST
I have learned to not worry about it. I continue to live my life happy and to the fullest with my wife by my side every step of the way. I follow my doctor’s instruction and find comfort in reading the Life Raft Group GIST e-mails.
Advice for fellow GISTers
Also, always remember to encourage all your loved ones not to worry and that all will be well. Be POSITIVE in everything and put into your mind that ALL will be well. GOD is in control. Lastly, continue to do your research and try to follow all leads. Make sure to continue researching the tumor that you have and take advice/listen to those who are going through a similar diagnosis.
I enjoy spending time with my wife and loved ones as much as I can. When weather permits, my wife and I enjoy taking walks. We also enjoy reading the Bible and praying together.
Stay in the WORD. And again, be Positive and have FAITH in the Creator. Look to HIM in everything so you don’t have to worry. I myself never worry because worry does not and will not resolve your problems. Focus on what needs to be done to help your situation. Also, I would like to share that the meaning of BIBLE is Basic Instruction Before Leaving Earth.
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.
Criteria for Patient of the Month
- Patient must be a member of the LRG 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 a GIST/PRiME account
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: firstname.lastname@example.org