Local foundation building hope for families facing rare cancer diagnosis

CAMBRIDGE, Mass. — September 30th marks Rare Cancer Day. A cancer diagnosis is devastating to any family, but hearing your cancer is rare and there’s no real treatment, leaves many patients and their loved ones feeling hopeless.

A Cambridge-based foundation, launched by a man who experienced that first-hand, is trying to change that.

Paul Poth was just 38, a seemingly healthy new dad and successful attorney, when he was diagnosed with a rare bile duct cancer.

“He was just an amazing, hilariously funny, smart, very giving person who always wanted to give back,” said his wife, Kristen Palma. “He couldn’t understand how in Boston with, you know, the brightest minds all over the city and medicine and science, that there was really nothing going on for his cancer. So he decided he would do something about it.”

In the 21 months Paul had left in his life, he started TargetCancer Foundation.

“He hoped that maybe something would help him in his situation, but he also knew that it might make the landscape better for future patients,” Kristen said.

Now, 12 years later, Kristen and her brother Jim Palma head the foundation, and carry on Paul’s mission.

TargetCancer has provided more than $1 million for research and treatment for rare cancers. And they’ve launched an ongoing clinical trial called TRACK: Target Rare Cancer Knowledge.

“That was really formed in response to what we were hearing from the patient community and what the challenges were that patients with rare cancers were facing,” Jim Palma explained. “When patients enroll, they receive genomic testing of their tumor tissue and their blood. And then the results of those reports are sent back to TargetCancer Foundation, and put in front of a virtual molecular tumor board, which is a national group of experts on rare cancers.”

The goal is to have 400 patients in the TRACK study, and they’re on the way to meeting that. Patients across the country can have that testing done without leaving their homes.

“It utilizes something called remote consenting. And what that means is a patient can fully engage and enroll in the study from wherever they live in the country, from their home from their home computer, without having to travel like people normally do to participate in a clinical trial,” Jim Palma said.

Pathologists like Dr. Julia Elvin with Foundation Medicine in Cambridge then look at the patients’ samples to try to find each cancer’s “Achilles’ heel.”

“We’ll have a roadmap to design a strategy based on that molecular fingerprint. And that, I think, is the path to getting patients matched with really, really effective therapies,” Dr. Elvin said.

The virtual molecular tumor board of experts evaluates the patient’s medical history and provides treatment recommendations back to the patient and their physician.

“I didn’t want to stand by any more, and just, you know, look into this, this very awful crystal ball. And instead, I wanted to be part of the solution and bringing hope so even though we have this diagnosis, we also can help uncover things that will give us a better path,” Dr. Elvin added. “What we’re seeing for some patients now already is years and years of really quality life that is allowing them to actually access the next round of innovative therapy and the next round.”

TargetCancer Foundation has already helped fund research leading to an FDA-approved treatment for the type of cancer that took Paul’s life.

And it’s doing something else: providing hope and in some cases, time.

“Eventually, my hope is that we change these diagnoses from you know, that death sentence, into a plan for how to live with these tumors based on the molecular information that we can gather from testing the tumor tissue,” said Dr. Elvin.

“Every single day is meaningful. And if you’re giving an option that’s giving more time and more hope. That to me, is huge,” said Kristen Palma.

For more information on the foundation and the TRACK study clinical trial, visit TargetCancer Foundation.

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