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The long-shot treatment that’s expanding Maine’s frontier of cancer care — Maine Focus — Bangor Daily News — BDN Maine

The long-shot treatment that’s expanding Maine’s frontier of cancer care — Maine Focus — Bangor Daily News — BDN Maine

Troy R. Bennett | BDN

Troy R. Bennett | BDN

Rob Leighton of Westbrook takes six tablets at a time in a medical drug trial to deal with his cancer.

By Jackie Farwell, BDN Employees •
October 22, 2018 6:00 am

Rob Leighton’s colon cancer had continued by means of a barrage of remedies when his physician advised a brand new check.

The Westbrook man had already undergone the usual remedies following his analysis in March 2016: surgical procedure, radiation, chemotherapy and even immunotherapy, a more moderen era of treatment that reinforces the immune system’s potential to battle cancer cells.

Nonetheless, the tumors continued to develop, and had unfold from Leighton’s colon to his liver and lungs.

“I was pretty much running out of options,” Leighton stated.

His oncologist requested if he needed to attempt one other strategy. Fairly than treating his sort of cancer, they might attempt to deal with his particular person cancer.

As with all different affected person with that type of the illness, the damaging cells metastasizing in his physique had originated in his colon. However the DNA inside these cells had mutated in methods specific to Leighton, ways in which may make his cancer prone to particular medicine. If Leighton and his doctor might pinpoint the distinctive mixture of genetic mutations in his tumors, a kind of molecular signature, they might then try to take advantage of them to kill his cancer cells.

They took a tiny pattern of his cancerous tissue from a earlier process and despatched it off to be analyzed. And with that, Leighton started collaborating in a statewide initiative to broaden entry to the testing, often known as genomic testing or molecular profiling.

The Maine Cancer Genomics Initiative, spearheaded two years in the past by The Jackson Laboratory and supported by a greater than $eight million donation from the Harold Alfond Basis, has now enrolled greater than 300 sufferers from hospitals and personal practices throughout the state. Past the testing, the initiative hyperlinks sufferers with medical trials and different personalised treatment choices. It’s additionally constructing a community of cancer clinicians all through Maine and giving them entry to the newest in cancer analysis.

Finally, the formidable initiative goals to assist change how cancer is recognized and handled in Maine, deploying Jackson Lab’s analysis to even rural areas of the state with hopes of bringing sufferers probably the most promising remedies. The initiative carries excessive stakes in Maine, the place an estimated eight,600 new instances of cancer are anticipated to be recognized in 2018 and the place cancer is the primary trigger of demise amongst adults, claiming lives at a better fee than most different states.

It’s too early to say whether or not the trouble has saved lives, and skeptics of this sort of “precision medicine” argue that its restricted successes have been overblown. However the initiative is bringing a brand new frontier in cancer treatment to corners of Maine which may have waited years for it in any other case, and at nearly no value to sufferers.

‘It just gives us other options’

Troy R. Bennett | BDN

Troy R. Bennett | BDN

Rob Leighton of Westbrook takes six tablets at a time in a medical drug trial to deal with his particular person cancer, slightly than his sort of cancer.

For many years, treatment of cancer has adopted at the very least one of a number of routes: Minimize it out with surgical procedure, zap it with radiation, or blast the physique with chemotherapy medicine to kill the cancer whereas hoping wholesome cells recuperate. Newer approaches embrace immunotherapy, however for a lot of sufferers these three remedies have represented the usual of care.

Now, clinicians can mine every affected person’s genetic profile for info to assist customise their treatment. Sufferers enrolled within the Maine Cancer Genomics Initiative are examined for greater than 150 cancer-related genes that Jackson Lab has recognized as “clinically actionable,” or people who docs can probably do one thing about. Any mutations that flip up within the check are run by means of the lab’s database, which spits out details about potential therapies or medical trials matching that specific mutation. The outcomes are then returned to the oncologist in a report two to 3 weeks later.

“This is basically a way to understand better what the patient’s individual cancer consists of,” stated Christopher Darus, director of analysis in gynecologic oncology at Maine Medical Middle.

Assume of it this manner, he stated: The world’s most complicated machine is damaged, and it’s essential to repair it. To try this, you need to know its internal workings.

“The cancer cell is way more complex than any machine we have,” stated Darus, a member of the Maine Cancer Genomic Initiative’s steering committee.

“What we’re looking to do is to exploit changes on the cancer cell to help kill it,” he added. “Every single cancer is different in every patient.”

Darus’ apply, together with one other gynecologic oncology group at Biddeford’s Southern Maine Medical Middle and a neuro-oncologist at Maine Medical Middle, has enrolled 95 sufferers within the initiative, probably the most of any single website.

The program is open to any affected person with strong tumors, reminiscent of lung, breast and prostate cancer, however excluding these with leukemia. Many sufferers enrolled in this system have already tried the usual remedies, comparable to chemo and radiation, and are not responding or can’t tolerate the consequences, Darus stated.

“It doesn’t change or take away our standard treatments. It just gives us other options,” he stated.

The testing, which may value from $2,00zero to $5,00zero per check, is roofed by the Alfond grant. By collaborating, sufferers comply with be half of a analysis research, offering suggestions about their expertise although surveys. Their oncologists are half of the research, too, filling out questionnaires about how the testing impacts their decision-making in treating sufferers.

Almost 90 % of the roughly 60 oncologists training in Maine have enrolled as research topics themselves, with a minimum of half additionally having sufferers enrolled, stated Jens Rueter, medical director of the Maine Cancer Genomics Initiative. The clinicians symbolize each well being system within the state and almost each oncology follow, he stated, forming a collaborative community that additionally advantages from common communication with leaders in oncology analysis. Docs in rural Maine can seek the advice of remotely with specialists — from hospitals together with Dana-Farber Cancer Institute in Boston and MD Anderson in Texas — about their sufferers’ medical circumstances and treatment choices.

The Jackson Laboratory | BDN

The Jackson Laboratory | BDN

Jens Rueter, medical director of the Maine Cancer Genomics Initiative.

“When you’re out here in the trenches in the community, it’s hard to keep up. The amount of data that’s coming out is unbelievable,” stated Allan Espinosa, an oncologist and hematologist at Cary Medical Middle in Caribou.

“We get access to world-leading researchers on specific cancers … that are able to share their views on how to treat patients. It applies directly to your patients, and at the same time it helps us keep up with what’s going on,” Espinosa stated.

Jackson Lab additionally hosts an annual discussion board that brings clinicians collectively in individual, which one longtime oncologist stated was the primary of its variety to take action irrespective of which well being system they work for, Rueter stated.

“You can really raise the care that’s given to cancer patients in Maine and in the community to a new level,” he stated. “It’s done by enabling the practices and clinicians to do this essentially themselves with our support.”

Along with the Alfond grant, Jackson Lab has made a “substantial” funding within the initiative, although lab officers declined to specify the quantity. It goals to enroll a minimum of 1,800 sufferers, with no agency finish date.

Rueter is wanting forward nicely past that date. He views the initiative as a singular mannequin, with Jackson Lab, a biomedical establishment, main the best way moderately than a well being care supplier, and bringing a kind of treatment sometimes out there on the nation’s largest medical facilities to sufferers in rural Maine, he stated.

These rural communities, in addition to these in additional populated elements of Maine, in flip, assist to direct analysis on the lab via their suggestions about its genomic testing choices.

That infrastructure might probably be leveraged to make genomic testing extra extensively obtainable, not solely to cancer sufferers, however these with different illnesses as nicely, Rueter stated.

“The shorter the transition time from lab experiment to actual treatment in the patient, the better,” he stated.

‘Not sure what’s going to occur’

Rob Leighton’s check outcomes got here again from the Jackson Lab in a few month. He was fortunate on two fronts: The lab recognized a genetic mutation in his cancer pattern, and the mutation matched one that’s the goal of a medical trial beneath approach at Dana-Farber in Boston.

In August, Leighton started the treatment. Twice a day, he takes six small, spherical tablets of an experimental drug referred to as Tucantinib. And each three weeks, he travels to Dana Farber for an infusion of an intravenous drug that’s FDA-approved for breast cancer, however has proven promise in different medical trials towards the genetic mutation present in his colon cancer.

The medical trial goes by the rugged-sounding identify of “Mountaineer.”

In early October, Leighton acquired his first scan after starting the treatment.

“My tumors have shrunk an average of 36 percent. And that’s after only nine weeks of treatment,” he stated. “The doctor was pretty impressed.”

Troy R. Bennett | BDN

Troy R. Bennett | BDN

Standing in his kitchen, Rob Leighton of Westbrook talks concerning the medical drug trial he is participating in to attempt to deal with his colon cancer. It is already unfold to different organs.

“Everything shrunk, the tumors in my lungs, the tumors in my liver, and I had a couple lymph nodes that were cancerous, and those have shrunk, too,” Leighton stated.

It’s one of the best information he’s acquired since his analysis greater than two years in the past. Earlier scans typically confirmed no worsening of his tumors, however “this is the first time I’ve gotten one where it said the drug actually impeded the tumors.”

He’s feeling nicely, although he stays on an prolonged break from his job as a supervisor at a grocery store chain.

“Hopefully the [tumors] continue to shrink and eventually go away,” he stated. “They’re really not sure what’s going to happen, with it being a clinical trial.”

Leighton’s cautious optimism is properly warranted. Sufferers who see early success in medical trials can take a flip for the more severe, if their illness progresses once more or they will’t tolerate the uncomfortable side effects of the treatment.

And regardless of its identify, “precision medicine” is usually an imprecise endeavor. As tumors develop, they proceed to build up genetic mutations, making it troublesome for docs to differentiate which of them are “targetable,” or dangerous and probably treatable with medicine. A treatment that works at some point may cease working weeks or months down the street. Many sufferers get the testing solely to have it flip up no targetable mutations in any respect.

Precision drugs typically misses the goal, with the quantity of sufferers dying from cancer regardless of such testing “still vastly outnumber[ing] the rare successes,” Liz Szabo, a senior correspondent for Kaiser Well being News, wrote in a current evaluation of the sector.

Specialists estimate that the share of individuals with superior cancer who’re eligible for such genetic testing ranges from simply 9 % to 15 %, she famous. At a current assembly of the American Society of Medical Oncology, researchers introduced 4 research on precision drugs, with two representing complete failures, and the others failing to shrink tumors 92 % and 95 % of the time, Szabo wrote.

“When considered objectively, the prospects and potential of precision oncology are sobering,” Vinay Prasad, an affiliate professor at Oregon Well being and Science College and outspoken critic of precision drugs, wrote in a September 2016 opinion piece within the journal Nature. “At best, we may expect short-lived responses in a tiny fraction of patients, with the inevitable toxicity of targeted therapies and inflated cost that this approach guarantees.”

Sufferers enrolled within the Maine Cancer Genomic Initiative are considerably shielded from the prices, because of the Alfond grant overlaying the costly testing. And whereas medical trial medicine are sometimes offered at no expense, sufferers are nonetheless chargeable for the prices of scans, blood work, and physician’s appointments.

Leighton’s spouse works as an working room nurse for Mercy Hospital in Portland, the place his oncologist is also employed, a lot of his treatment has been in-network by way of his insurer and comparatively reasonably priced, he stated.

However different sufferers wrestle with the expense. “Our office spends a lot of time fighting for the patients to get this covered,” Darus of Maine Medical Middle stated.

He laid out the challenges he sees for precision oncology.

“I think the problems are, number one, the cost: Who’s going to pay for this; will it get covered? Number two, I think it can be overused, or there can be misinterpretations of the information. And number three, the false hope that can sometimes occur, thinking that we have magic bullets, and we usually don’t. But sometimes we do, and we’re not going to know until we try. I do think the future holds more of this testing, not less of this testing.”

‘Somewhere in between’

With each affected person and each physician that the Maine Cancer Genomics Initiative enrolls comes extra info. Every time the Jackson Lab analyzes one other tumor pattern, the chances of discovering genetic mutations that may be handled with particular medicine probably inches a bit greater.

Because the database grows extra strong, Rueter hopes the initiative will assist researchers to determine extra genetic variants with remedies not but accepted by the FDA.

Even studying extra about which mutations are dangerous, regardless of whether or not they are often handled, would characterize progress, Darus stated. Oncologists typically run into the “frustrating situation” of getting a report again that states a affected person’s tumor has a “variant of uncertain significance,” he stated. Principally, the lab has recognized a mutation however can’t decide whether or not it’s deleterious. With hundreds of potential mutations occurring within the genes, some mutations is perhaps incidental, and of no actual concern to the affected person.

“Part of this is to get this information so we can continue to learn and continue to look for targets for these cancers,” Darus stated.

Rueter, who additionally treats sufferers at his follow within the Bangor space as he leads the initiative, continues to seek for further funding for this system.

“It’s not a typical health care or research investment. It’s somewhere in between,” he stated.

Rueter hopes that a decade from now the initiative could have verifiably saved or prolonged the lives of sufferers throughout the state.

Rob Leighton has his sights set on a a lot nearer horizon. He’s due for the subsequent CT scan of his tumors proper round Christmas.

That is the third piece in an ongoing take a look at the prevalence of cancer in Maine, which is the No. 1 trigger of dying amongst adults within the state. The first piece explored excessive charges of cancer amongst Maine youngsters, and the second seemed on the transportation burden many sufferers face. When you have an concept for a narrative, contact Jackie Farwell at

Maine Focus is a journalism and group engagement initiative on the Bangor Daily News. Questions? Write to