"We have time"

An update on Ben, and the life-changing promise of science

“We have time.”

Most of us take those three words for granted every day. We have time to delay cleaning the kitchen, scheduling that vacation, telling that person you love them, going for that medical follow-up and on and on.

We say we have time because most of us forget how short time can really be.

Not Ben and Beth*.

*Note. I’ve written about Ben and Beth before. Beth first approached me last spring to help tell their story, and since I’ve been honored to become friends with them. To read what I’ve written about them before you can go here and here.

Almost two years ago, Ben received a diagnosis of stage 4b colon cancer with an error found in the DNA on a gene called KRAS. Specifically he has a mutation known as KRAS G12C.

Normally, it’s the job of KRAS to help control the growth of cells. You can think of it like the brakes and gas in a car. It’s on (pushing the gas peddle) when more cells are needed, and off (pushing the break) when not. However, with the G12C mutation, KRAS is stuck “on”. This means cells keep copying themselves, even when they’re not supposed to.

This part matters, because for a long time tumors with this mutation were considered undruggable, meaning there were very few good treatment options for patients like Ben. By the time he was diagnosed his cancer had already spread to his liver and was too big to remove surgically.

Doctors were not optimistic. Many patients don’t make it to two years post diagnosis.

Treatment was hard for Ben, and left him feeling terrible. Soon though, he was able to join a revolutionary trial at MD Anderson’s Cancer Center. He felt better on it, but no one yet knew if it would make a difference.

What kind of trial?

The trial Ben is in is combining three therapies in combination for the first time – adagrasib (also known as MRTX849), cetuximab, and cemiplimab.

Here’s a bit about how each of these drugs work.

Adagrasib: I mentioned above that in patients with the KRAS G12C mutation, KRAS is always stuck on. This drug helps stop KRAS (officially known as an inhibitor), to help counteract this mutation.

Cetuximab: This is an antibody that binds to something known as epidermal growth factor receptor. This helps prevent certain signals that could lead to things like increased tumor growth, and it may also help the patient’s immune system better target the cancer.

Cemiplimab: Is another antibody therapy that binds to something called the PD-1 receptor. Sometimes, cancer cells use PD-1 to stop a patient’s immune system from recognizing the cancer and killing it. Cemiplimab helps stop this, which helps a patient’s immune system target the cancer.

Trials offer hope

Sometimes clinical trials can be life-changing, so Ben and Beth both had incredible hope when Ben entered the trial.

They hoped that it would buy Ben time, that new scientific progress would be made, and that Ben would leave a legacy of helping others diagnosed with colon cancer after him.

Then, a few months ago, they received amazing news. Ben’s tumors in his liver had shrunk enough that doctors were now able to do an innovative surgery to remove them.

Ben had the surgery in November, and they were able to remove some of the metastatic liver tumors. Following the surgery, the tumors that were removed were tested, as Ben is the first person on this protocol to ever be flipped from being a non-surgical candidate to having surgery become an option.

A member of Ben’s care team said the results showed “incredibly ridiculously amazing results”. Pathology showed that almost all of the tumor cells removed from the liver were already dead.

Ultimately, the recovery from surgery was hard, but Ben made it and has re-entered the same clinical trial.

Now, when considering what options are next, doctors have told Ben and Beth that “we have time” to figure out next steps. Until now, time was not on their side. Even the doctors have stated that Ben’s outcome is exceptional.

Ben has friends who had a similar diagnosis and didn’t make it to their two year mark. It’s easy to look and wonder why it has been different for Ben.

But, he was the one who was able to get into this clinical trial. Participating in research like this has changed his life. It has given Ben and Beth the greatest gift – more time.

This is what science is at its best.

A gift.

A series of experiments.

Years of failed and successful work.

All with the hope that what is found out will somehow be used to improve lives, the world or technology.

Cutting science cost lives

Sadly, cancer progress like this is no longer a guarantee because of the attacks on science still happening under the current administration. This includes major harmful impacts on cancer research.

Overall, less science is being funded, changes are happening to how science is funded, less staff are employed to help the process of awarding funding progress. I could go on and on (summary here).

One major change, called multi-year funding (for what this means, go here), brought the success rates of grants funded by the National Cancer Institute (one of the NIH institutes) down from 10%, to 4%. This means less research is happening on cancer, which will cost future patients progress and time.

It’s hard to remember, but the research happening today, leads to the cures and treatments you and your family may need in the future. That’s why so many of us find the cuts to science happening right now so concerning. Cancer patients often don’t have time, and we don’t know ahead of time which research will produce new options. That’s why investing in new areas is so important.

What can you do

Our elected officials have largely rejected Trump’s proposed funding cuts to science. Which is good news. But this isn’t enough. Science is still being damaged through other actions, like multi-year funding and reduced staff. These risk scientific progress and we must stay aware and vocal.

Continue to let your representatives know you want science supported and funded.

Continue to share stories, like this one, that show the value of science to everyday people.

Ben is living proof that scientific research saves lives.

Every patient deserves to hear the words “we have time.”

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