Published on September 2, 2020
Why is it important to get NTRK Gene Fusion Testing?
Genomic Testing can identify what is driving your cancer. The NTRK gene discovery changed Susan’s medical outcome—for the better! Dr. Alexander Drilon, Chief, Early Drug Development for Memorial Sloan Kettering Cancer Center and Susan, a patient advocate and founder of the NTRK Support Group join Patient Power co-founder, Andrew Schorr, to discuss the importance of genomic testing for NTRK fusion positive patients. Dr. Drilon discusses two drugs, larotrectinib (Vitrakvi) and entrectinib (Rozlytrek) that have been approved for treatments for NTRK gene fusion patients. Susan shares her own story of finally receiving genomic testing and discovering that she had a very rare mutation. Watch to hear the full discussion.
Transcript | Genetic Testing for NTRK Fusion Positive Patients
Why Should Cancer Patients Pursue Genomic Testing?
Hello, and welcome to Patient Power. I'm Andrew Schorr. We have two important guests; joining us from Allentown, Pennsylvania, is Susan, and joining us is a renowned researcher for Memorial Sloan Kettering in New York, and that is Dr. Alexander Drilon, who is the Chief of Early Drug Development there.
Susan, first, a little bit about your story. So, you've been dealing with thyroid cancer.
Yes. Yes, so just a little background, I was diagnosed in 2004, and then approximately four years later, I had a reccurrence and my disease kept on progressing. It wasn't until I actually went on a second opinion appointment where the doctor was like, "Hey, your cancer's not acting right. Let's do genomic testing.”
I ended up starting on a clinical trial. That was in August of 2018, so I've been on it for almost two years. But what I learned very quickly is there wasn't a whole lot of information out there on this drug because it was so new. And even though I was part of thyroid groups, I lost that connection a little bit because nobody else had this rare gene fusion.
So, I started reaching out and trying to search social media and I started messaging people. And I got messages right back saying, "Hey, I'm so glad you found me. I'm so alone. I didn't know anybody as well." So as much as I found people to help myself, I helped other people as well, right? Because we had this common connection.
Dr. Drilon, so people think, "Oh, I have breast cancer. I have lung cancer.” You may have more in common with people with a cancer that's at a different site.
Absolutely. We now know that the power of genomic testing is that you find particular genes that might be driving or fueling cancers. And NTRK in particular is a gene that can be activated by what we call a fusion, and those fusions can be found across pediatric and adult cancers. It doesn't seem to matter what cancer type it is, but if you use targeted therapy that's directed against the NTRK fusion, that you see good responses across different tumors.
Treatments for NTRK Gene Fusion Patients
And there is a drug that's been developed, right? That the FDA approved in this situation.
That's right. Larotrectinib (Vitrakvi) was the first drug that was approved by the FDA, but there's actually another drug that's also approved that's called entrectinib (Rozyltrek). So now we have two options for patients whose cancers harbor these fusions.
So more cancer patients should have genomic testing.
Yeah. I agree a hundred percent. And I think that the TRK inhibitors were a good example where the FDA said, "We'll approve this drug for any cancer, any age, it doesn't matter what kind, as long as that fusion is present," but certainly there are other signatures like tumor mutational burden, MSI high status, for which the FDA has approved in a, what we call tumor agnostic fashion, the use of these drugs.
The last thing I would say is that the way these drugs got approved was because of clinical trials that explored these questions. And you may find something actually on sequencing that opens up a trial option for you.
Well, Susan, we should just make clear that getting in that clinical trial for NTRK, that made all the difference for you, right?
The nice thing about this drug, which I'm very thankful for the people who developed it, is literally, within days, I saw results. And then I had the biggest reduction within the first six months, which is very typical with this drug. People's stories on the Facebook group were absolutely amazing, where people were told to go home and get hospice ready, and were on oxygen, and basically to go home and die. And they started this drug and it cured them. And within a week later, they were walking back in the doctor's office without oxygen and doing great.
And you're very committed to educating people who are in your Facebook group. And then you have a website you're developing as well.
We have a Facebook group, NTRK support group, with about a hundred members and caregivers of course, because we also have adults and pediatrics on the site, and the parents. And then we're also going to be starting our website, which will be NTRKers.org, and hopefully patients can find resources, support, education to learn more about NTRK gene fusions.
Well Susan, I want to thank you for being a leader in this and I'm so glad you're doing well. Dr. Alexander Drilon at Memorial Sloan Kettering, thank you for all you do.
Thanks for having us.
Okay. I'm Andrew Schorr. Remember, getting the right knowledge about your cancer and then the right treatment, approved or experimental, can really be the best medicine of all.
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.