Jamaica Gleaner - - FLAIR FASH­ION - – AP

cen­tres far from home is cum­ber­some at best. Pa­tients sick or dy­ing from their dis­ease face ad­di­tional hur­dles.

This project is dif­fer­ent. Pa­tients sign up on­line, mail in saliva kits for ge­netic test­ing, and al­low use of their tu­mour tissue sam­ples and med­i­cal records. Re­searchers use so­cial me­dia to keep them posted about progress, and pe­ri­od­i­cally in­vite par­tic­i­pants to visit the Cam­bridge, Mas­sachusetts, lab where their spec­i­mens are be­ing an­a­lysed.

The Me­tastatic Breast Can­cer Project is run by scientists at Har­vard and Dana-Far­ber Can­cer In­sti­tute, and was launched last Oc­to­ber with fund­ing from the Broad In­sti­tute of MIT and Har­vard, an in­de­pen­dent non-profit group. Us­ing word of mouth and so­cial me­dia, it has al­ready en­rolled more than 2,600 pa­tients – a pace nearly un­heard of in med­i­cal re­search.

“I en­rolled from my re­cliner in my liv­ing room. I did my spit tube in bed,” Cald­well said.

The mother of two turns 40 on Thurs­day, and can­cer has reached her brain, lungs, bones and liver. She tries to stay pos­i­tive, but Oc­to­ber “is a month where I just want to hide un­der the cov­ers and check out,” Cald­well said. “I just don’t want to be con­fronted with all this pink garbage.”

Lara Macgre­gor, who runs a Louisville, Ken­tucky-based non­profit group for can­cer pa­tients, said she feels the same way.

“Ev­ery­thing about breast can­cer is about sur­vivors and beat­ing can­cer,” Macgre­gor said. “And we’re sit­ting in the wings say­ing, “I’m never go­ing to cel­e­brate the end of treat­ment.’”

Macgre­gor was preg­nant when di­ag­nosed with early-stage breast can­cer in 2007. She had both breasts re­moved plus chemo­ther­apy, and went on with her life think­ing she was cured un­til two years ago, when tests for nag­ging back pain re­vealed can­cer had re­turned and spread to her bones.

Now 39, Macgre­gor read about the project on­line, de­cided im­me­di­ately to take part, and emailed dozens of friends and con­nec­tions who also signed on.

Be­fore she mailed her saliva kit, “my eight-year-old drew a pic­ture on the box and said, ‘thanks for help­ing my mom’,” Macgre­gor said. “I hope that real data about real peo­ple is go­ing to lead to bet­ter treat­ment op­tions,” she said. “My life de­pends on it.”

More than 200,000 peo­ple, mostly women, are di­ag­nosed with breast can­cer nationwide each year. Most are di­ag­nosed when can­cer is at an early, po­ten­tially cur­able, stage. For about six per cent, or 15,000 pa­tients, the dis­ease has al­ready spread at di­ag­no­sis.

And for about 30 per cent of pa­tients di­ag­nosed with early-stage breast can­cer, the dis­ease will even­tu­ally re­cur in dis­tant parts of the body. The av­er­age sur­vival for pa­tients with me­tastatic dis­ease is about three years.


Ac­cord­ing to a 2014 anal­y­sis from an al­liance of breast can­cer ad­vo­cacy groups, less than 10 per cent of gov­ern­ment and non-profit groups’ in­vest­ment in breast can­cer re­search in re­cent years went to study­ing me­tastatic dis­ease.

“Me­tastatic breast can­cer in gen­eral is an un­der­stud­ied area,” says Marc Hurl­bert of the Breast Can­cer Re­search Foun­da­tion. “We don’t know, for ex­am­ple, how the tu­mour has changed. Is it the same make-up as it was be­fore? Do cells have a dif­fer­ent molec­u­lar pro­file than can­cer that started first in the breast?”

By gath­er­ing large num­bers of tissue sam­ples and in­for­ma­tion about how the dis­eases pro­gresses in dif­fer­ent peo­ple, the project may be able to un­cover use­ful trends. It has pro­duced a few en­tic­ing clues al­ready, in­clud­ing small groups of pa­tients who have re­sponded un­usu­ally well to stan­dard chemo­ther­apy or to new im­munother­apy drugs – some have sur­vived for 10 years or more. The re­searchers hope DNA analy­ses will help ex­plain why and lead to treat­ments that will im­prove the odds for all pa­tients with the dis­ease.

Data will be posted on a spe­cial on­line site and with the Na­tional Can­cer In­sti­tute’s ge­nomic data pro­gramme – mak­ing it avail­able to other scientists and boost­ing the odds of find­ing bet­ter ways to treat pa­tients with me­tastatic dis­ease.

And proof that crowd­sourc­ing can draw thou­sands of pa­tients to med­i­cal re­search is an im­por­tant dis­cov­ery it­self, given how hard that can be, said Dr Nikhil Wa­gle, a project leader and an as­sis­tant pro­fes­sor of medicine at Har­vard and Dana-Far­ber.

“This project makes them feel em­pow­ered, makes them feel like they are mak­ing a dif­fer­ence – if not to help them­selves, then maybe the next gen­er­a­tion of pa­tients,” Wa­gle said.


Thou­sands of peo­ple form a gi­ant pink rib­bon dur­ing an event mark­ing the start of Breast Can­cer Aware­ness Month, in­side the grounds of a mil­i­tary camp in Mex­ico City.

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