We interviewed Marc Rosenzweig, a long-term ALK patient and founder of the ALKtALK program that has become a wonderful resource bringing the ALK community closer.

1. Tell us a little about yourself, your personal and professional background, and your journey with ALK-positive lung cancer so far.

I am a proud father of two sons, Jacob and Sammy (Sammy is our graphic designer for the ALKtALK calendar and website). Both live in Chicago. I live with my wife Carolyn in West Bloomfield, MI, a suburb of Detroit. I was a real estate developer and general contractor. My cancer life started in 2013 when I was diagnosed with Stage 3b Hodgkin’s Lymphoma. I went through 6 months of chemotherapy. I was scanned every 90 days after I finished treatments. I started coughing up blood 7 months later after my last Hodgkin’s treatment, and I was diagnosed with Stage 4 ALK Positive Lung Cancer in November 2013.

2. What would you advise a newly diagnosed patient? What do you know now that you wish you knew back when you were first diagnosed?

I would advise a new patient to access our ALK Positive YouTube site, https://www.youtube.com/@ALKLungCancer and educate yourself. Start with our ALK #101 five-part series, then listen to other leading ALK experts who appeared on other ALKtALKs or Summit videos. Back in 2013, when I was diagnosed, patients had very limited access to information about their disease. A patient can join a local support group along with an ALK Healing Arts Program and our Facebook support group. The ALK Positive website is also a great resource to empower you to be the best advocate for yourself.

I regret not getting a second opinion back in 2016. I wanted to enter the Alectinib trial, but I was talked out of it by my doctor. This was a critical time in my cancer journey. I ended up being prescribed Ceritinib (Zykadia) which was FDA-approved at the time, but it was proven years later that it did not protect the brain as well as Alectinib did. That fork in the road changed my life forever. I had brain progression, which forced me to have brain surgery in October 2016. GET A SECOND OPINION.

3. You came up with the idea of ALKtALK, set it up, got it up and running, and today it is an amazingly successful program that is also a wonderful resource, and it has brought the ALK community closer together. How did you come up with this idea, and what inspired you to get involved? How did you come up with all the different types of free sessions and resources the ALKtALK program offers?

The idea of the ALKtALK Healing Arts Programs came from my Men’s cancer support group which was meeting during the Covid pandemic via Zoom. I thought it was amazing that we could talk to each other through technology. By accident the idea came to ALK Positive. I was trying to set up a fundraiser for ALK Positive and couldn't set it up properly. I received a call from the late Gina Hollenbeck who was the President of ALK Positive at the time. We spoke for an hour about our experiences living with ALK, and I approached her with the idea of setting up similar group meetings. She loved the idea, and she set up a Zoom meeting with Rhonda Jones Meckstroth who runs our Facebook support group. They both liked the idea and promoted it on our Facebook support group. I started recruiting instructors to run our monthly group workshops. The Healing Arts workshops launched in October 2020. The first time I opened the Zoom room, people from around the world joined our first support group. It was amazing to have real dialogue with others and hear their voices as opposed to reading Facebook posts. The ALKtALKs launched in December 2020. Gina, with a twinkle in her eye and southern accent, said, “Marc I have lined up Dr. Shaw and Dr. Camidge to kick us off for 2021”. Only Gina could’ve done that! As of April 2023, we’ve had 43 ALKtALKs with over 6,000 live attendees and 23,000 YouTube views.

Marc (R) with his two sons, Jacob & Sammy.

4. Has getting involved with ALKtALK and volunteering for ALK Positive given you a new sense of purpose? Does it make it easier to cope with your diagnosis on a mental and emotional level? What would you advise someone who would like to volunteer for the organization but doesn't know how?

Yes, I never imagined that I would turn cancer support into my profession. It’s my mission to give back to others and provide education to ALK patients around the world. Volunteering has been a game changer in my mental wellbeing. The Healing Art workshops bring real connections which lead to lasting friendships. We learn from each other which helps us navigate through our cancer journey. The Healing Art programs have been developed by the late Linda Webb, Lara Vaz Pato, and Gina Hollenbeck. Our current instructors are Sarah O’Connor, Suzanne Remington, Hanka Mosher, Dana Dell, Dan Wilson, and Heather Smith. Dana Querido is our monthly Healing Arts Programmer, and Summer Farmen is our Sunday ALKtALK coordinator. We’re always looking for new ALKtALK ideas and volunteers for our workshops. These programs are led by patient volunteers and have no funding. To my knowledge, our ALKtALK Healing Arts calendar provides more support groups and patient resources to patients around the world. Check out our monthly calendars and zoom link at alkpositive.org look under the ALKtALK tab. Email us at ALKtALK@alkpositive.org.

Interview by: Christina Weber

Patient Spotlight: Marc Rosenzweig, West Bloomfield, Michigan