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A Conversation with Patient Advocate Mark Hoffman

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Mark HoffmanMark Hoffman

We spoke with Mark Hoffman, who has Chronic Lymphocytic Leukemia (CLL), about his medical journey. CLL is a slow progressing cancer of the blood and bone marrow. Experts believe that in some cases, there may be a genetic contribution to the development of CLL. After his diagnosis, Hoffman became an advocate for those with CLL. He works with the CLL Society, a patient information and advocacy organization, and is participating in a clinical trial to help advance treatment options for individuals will CLL.

Tell me a little bit about finding information about chronic lymphocytic leukemia after you were diagnosed. Where did you look?

When I was first diagnosed, I got some books and looked online to try to understand the condition. The one thing that’s good about CLL is that it’s slow moving, so you have time to do some research.

When I went for a second opinion with a CLL specialist, I ran into another man with CLL. He invited me to a support group, which was a real breakthrough for me. It turned out to be more of an educational forum, and there I met other people who had CLL and told me about CLL Society. The CLL Society has been a wonderful resource, as has Patient Power, which is a website with information about cancer for patients and professionals.

What advice would you give someone who is diagnosed with cancer? What are the best ways to learn about what’s happening and become an advocate for yourself?

In my opinion, the most important thing is to find the experts in your field and get a second opinion from a specialist. Other things that I found helpful: 1) Learn as much as you can about the disease, 2) Find a support group or educational group to go to, and 3) Find web resources and people that are at the forefront of your disease.

You not only sought out the latest information, but you’re also helping to develop better treatments through your participation in a clinical trial. We’re still learning so much about all diseases that have a genetic component, and medical research is critical to scientific advances. Tell me about participating in the trial and your takeaways.

People hear clinical trial and they think, "Oh, it’s dangerous." Sometimes, that can be the case. But in my situation, it feels like a win-win. The reason I wanted to do this trial was that, with my cancer’s genetics, a combination of drugs works better than just one. That’s what they’re doing in this trial: They hope to show that a combination of therapies is more effective than a single agent. I get a good treatment and they get to show that it’s effective.

You make it sound like it’s been really easy.

Well, I did have to wait for the trial to open up. I had my son’s Bar Mitzvah and unfortunately didn’t look my best because my lymph nodes were very swollen. Once I started the therapy, my lymph nodes went down within a week, so it’s unfortunate that it didn’t happen in time for the Bar Mitzvah. One of the disadvantages of the study is that you have to follow the protocols, which can mean that you have to wait for treatment.  

Your kids have been growing up as you’ve been going through this journey. What would you say they have learned from watching you in this process?

I hope they’ve learned that you really have to study everything, and be independent and figure out what’s best for you. 

You can learn more about CLL at http://cllsociety.org/.

To learn more about hereditary cancers that are more common in Jews, visit our website or contact the Sarnoff Center to speak to our genetic counselor.

Interview by Becca Bakal, MPH

Sources:

http://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/home/ovc-20200671

http://cll.ucsd.edu/

https://rarediseases.info.nih.gov/diseases/6104/chronic-lymphocytic-leukemia



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