The Paul and Susan Hutter Advocacy Program

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A letter from Paul Hutter

October 25, 2021

Dear Family and Friends,

Today I am sharing my lung cancer story with you because I believe it has been far from ordinary.

I have directly benefited from an organization, ICAN — International Cancer Advocacy Network, a 501(c)(3) cancer charitable organization, dedicated to advocating and assisting patients diagnosed with rare cancers. I am certain that I am here today because of them. They made me aware of a clinical trial I did not know existed when my doctors could offer little hope. This clinical trial is working for me. Like other small charitable organizations, ICAN is underfunded. For this reason, I ask you to support this organization and the amazing work they do. Your contribution, of any size, will be used to advocate for research on rare cancers like mine and steer patients to the treatment that offers them the best hope.

The Facts:

As my doctor told me during my diagnosis, “If you have lungs, you can get lung cancer.”

I always believed lung cancer was a disease of smokers. The American Cancer Society has educated us on the dangers of smoking. Lung cancer rates are decreasing as fewer people are smoking. Despite this, lung cancer remains by far the leading cause of cancer death in this country (see chart below). For reasons unknown, the actual incidence of lung cancer in never-smokers is increasing. In fact, if lung cancer in never-smokers were a separate category, it would be in the top ten cancers in the U.S. for both incidence and mortality.

Projected US Annual Deaths by Cancer Type
source: National Cancer Institute, April 2021
Cancer Type Projected US Annual Deaths
Lung 131,880
Colon and Rectal (Combined) 52,98
Pancreatic 48,220
Breast (Female-Male) 43,600
Prostate 34,130

My Story:

I have Stage 4 Non-Small Cell Lung Cancer. Through molecular testing I learned the reason for my cancer is I developed an EGFR exon 20 insertion mutation. The cause of this mutation is unknown, although it is mostly seen in never-smokers like me. The good news is that it cannot be passed along to my children. The bad news is that it has historically been considered untreatable. exon 20 patients were getting worse on whatever was being given to them—chemotherapies, immunotherapies, or targeted drugs. While there has been progress in the exon 20 clinical trials pipeline, with two FDA-approved drugs for exon 20 just this year, far more progress needs to be made to drive this still very lethal cancer toward cure. So I am faced with the fact that I have lung cancer, and that the lung cancer I have is a bad one.

I was blindsided by my diagnosis in early 2019. I was a never-smoker, had no symptoms, was fit and felt healthy. My cancer was found incidental to another routine medical test. While everyone fears it, nobody is prepared to be told they have cancer. Now I know that 4 in 10 people will be diagnosed with some type of cancer in their lifetime.

After my diagnosis, I was a frequent visitor to the UNC Lineberger Cancer Hospital. I underwent surgery, chemotherapy, and radiation. I tolerated these well and continued, as much as possible, to live a new normal life. The most important lesson learned from my regular hospital visits was that cancer does not discriminate. I saw people of all ages, all colors and every economic status. Cancer is an equal opportunity afflicter.

For 18 months I was considered NED (no evidence of disease). In truth, it was likely that my cancer would return. I was hopeful that I would be one of the lucky ones, but that was not the case. In September 2020 there were changes to my quarterly CT scan. New spots flared up in my lung and lymph nodes. I had fluid buildup around my lung which required draining every other day. These changes came with a Stage 4 diagnosis. The most difficult part of this diagnosis was breaking the news to my family.

My very caring oncologist at UNC reviewed these new findings and said they were obviously not what she was hoping for. She ordered additional tests and an appointment was made for a few days later to discuss a treatment plan. She offered me two options—neither of which were very promising for my difficult to treat exon 20 mutation. (The survival rate for exon 20 patients receiving standard of care treatments is about 7 months.) We left her office feeling less than hopeful. On the drive home we decided to seek a second opinion. I pulled the car over and called the Duke Cancer Center. Fortunately, I was able to schedule an appointment the next morning with a specialist whom I had seen early in my cancer journey. Things finally seemed to be going my way but this was short lived. The second opinion from the Duke oncologist held no more promise than the day before. In my mind, I was offered another “Hail Mary” option. The news we had received over those two days was not good. Our ride home from Duke was quiet.

Finally, Some Hope:

Getting home from Duke, I remembered that ICAN has a Facebook Support Group for people having the same exon 20 lung cancer as me. Logging onto Facebook, I saw that ICAN had just posted the preliminary results of a Stage 1 Clinical Trial for an experimental medicine designed to target my “untreatable” exon 20 mutation. The early results of the trial seemed promising—none of the seventeen patients enrolled had disease progression after starting the medicine and minimal side effects were reported. I immediately emailed the principal investigator at the clinical trial site nearest me (Fairfax, Virginia) to inquire about joining the study. Within minutes I received a response. Yes, there was one opening in the trial. To be officially enrolled I had to provide all my medical records for verification—not easy. It took over six weeks to get everything in order. This is an agonizingly long time when the cancer clock is ticking.

Luckily, that is all behind me. As I write this letter, I can happily report that I have been a participant in the Clinical Trial since November 1, 2020. The trial is a targeted medicine called CLN-081. It is a pill, which I take every morning and evening. I have had positive results from this medicine. My tumor load has shrunk and the fluid buildup around my lungs has cleared. I have virtually no side effects. Most importantly, no new cancer spots have appeared. Throughout my treatment I continue to feel good, exercise hard, live well and enjoy life! I feel so thankful and blessed to have found this new and novel treatment for what was previously an untreatable cancer.

Without ICAN, I would not have found this treatment. And I know that ICAN will be there for me if my cancer comes back, as they are continually dealing with pharma companies, clinicians, and molecular labs to expand and accelerate a far more robust drug pipeline for exon 20, working with patients at the next pivot point in their cancer journey.

This incredible organization has served more than 15,000 Stage 4 metastatic cancer patients across the United States and in 54 countries. Although the organization is small, they work relentlessly and effectively on behalf of their patients. They truly are angels. Incidentally, approximately 93 percent of ICAN’s functional expenses are allocated to Patient Programs (versus Management or Fundraising—the three basic categories used to evaluate optimal use of resources and mission focus by nonprofits). So, you can be confident that your donation will be put to good use. ICAN maintains the highest rating—Platinum—for transparency and accountability on, the top clearinghouse for all 501(c)(3) charitable organizations.

Thank you so much for taking the time to read my story. As you can tell, as a beneficiary of the work ICAN is doing, I am a truly passionate supporter. Any contribution you make will benefit those of us diagnosed with, and fighting, rare cancers.

Paul and Susan Hutter Advocacy Program:

Contributions to the Paul and Susan Hutter Advocacy Program may easily be made via this link: Donate to the Paul and Susan Hutter Advocacy Program! (In the Named Programs section of that page, select "Hutter, Paul and Susan".)

You may also mail a check if you prefer to ICAN at 27 West Morten Avenue, Phoenix, AZ 85021-7246

Thank you so much for your thoughts and prayers, and your support of ICAN.

Warmest Regards,


The Paul and Susan Hutter Advocacy Program
is a vital part of ICAN's Cancer Patient Advocacy and Clinical Trials Program Advocacy Services.

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