Ex­perts comment on Mc­Cain move

Sen. John Mc­Cain’s de­ci­sion to end treat­ment isn’t un­com­mon, one glioblas­toma ex­pert says.

The Arizona Republic - - Front Page - Stephanie Innes

Sen. John Mc­Cain’s de­ci­sion to end treat­ment for glioblas­toma is not un­com­mon for such an aggressive cancer.

If time is limited and the ef­fect is minimal, it’s not worth it to con­tinue treat­ment, said Dr. Michael Lawton, who is the pres­i­dent and CEO of Bar­row Neu­ro­log­i­cal In­sti­tute and an ex­pert in glioblas­toma, which has a me­dian sur­vival of 16 months.

“Doc­tors en­cour­age pa­tients to make their own choices when con­fronted with this dis­ease, be­cause it’s such a dif­fi­cult dis­ease to con­trol,” Lawton said.

When peo­ple re­ceive a di­ag­no­sis of glioblas­toma, they are of­ten very keen on do­ing ev­ery­thing pos­si­ble to treat it, he said.

That typ­i­cally in­volves surgery to remove as much of the tu­mor as pos­si­ble, then a com­bi­na­tion of ra­dio­ther­apy plus chemo­ther­apy to try and kill off or re­duce the remaining cells that haven’t been re­moved sur­gi­cally.

“They have a pe­riod of time where they can en­joy ben­e­fits of the treat­ment . ... Then they reach this point, where we are at now, where ev­ery­thing has reached the end of what can be achieved and they are fail­ing ter­ri­bly,” said Lawton, who is not in­volved in Mc­Cain’s treat­ment.

“Some will fight to the bit­ter end, and oth­ers will fo­cus on qual­ity of life. They’d rather have the best qual­ity of days, rather than quan­tity of days.”

Mc­Cain’s fam­ily on Fri­day an­nounced that Mc­Cain had de­cided to cease med­i­cal treat­ment 13 months af­ter his di­ag­no­sis.

Mc­Cain, 81, un­der­went ma­jor surgery to remove a blood clot from be­hind his eye in July 2017, and it turned out to be re­lated to a ma­lig­nant brain tu­mor. He un­der­went chemo­ther­apy and ra­di­a­tion treat­ment at the Mayo Clinic in Phoenix.

“Un­for­tu­nately, glioblas­toma, the most preva­lent ma­lig­nant form of brain cancer, does not have a cure,” said David Arons, CEO of the Na­tional Brain Tu­mor So­ci­ety. “Ev­ery pa­tient is dif­fer­ent and re­sponds to treat­ment and re­sponds to the dis­ease dif­fer­ently. Stop­ping treat­ment is most of­ten not a good sign. How­ever, we don’t know Sen. Mc­Cain’s tra­jec­tory from here.”

Stop­ping treat­ment means the tu­mor’s growth will con­tinue unchecked. At this point, pa­tients can ei­ther be at home, with ap­pro­pri­ate nurs­ing care, or in a hos­pice, sur­rounded by health-care providers.

“It’s the most aggressive form of brain cancer. Typ­i­cally surgery fol­lowed by chemo­ther­apy, ra­di­a­tion and some­times the use of what’s called tu­mortreat­ing fields can stop the glioblas­toma for a pe­riod of time,” Arons said. “But just about all glioblas­tomas come back. Of­ten, when they come back, they come back stronger, and they’ve adapted to those first-line treat­ments.”

Unlike other can­cers, glioblas­toma is not usu­ally painful when it goes un­treated, Lawton said. But the tu­mor does slowly take away one’s men­tal ca­pac­ity, which is dif­fi­cult for both the pa­tient and his or her fam­ily.

“The tu­mor keeps grow­ing, and pa­tients of­ten have in­creas­ing lev­els of neu­ro­log­i­cal deficits,” Lawton said. “In some ways, when peo­ple reach a point of en­ter­ing hos­pice, it’s a recog­ni­tion that they’ve come to peace with this hor­ri­ble dis­ease. And they can fo­cus on their fam­ily and their good­byes.”

Some pa­tients’ tu­mors are more aggressive than oth­ers, and they don’t make it to 16 months, Lawton said. “I would have to in­ter­pret the events of to­day to mean that the sen­a­tor has a more aggressive tu­mor that prob­a­bly would not get him to 16 months,” he said.

Glioblas­toma is the high­est grade of glioma, and its most ma­lig­nant form. Other high-pro­file peo­ple who have had glioblas­toma in­clude Sen. Ed­ward Kennedy of Mas­sachusetts; Beau Bi­den, the son of former Vice Pres­i­dent Joe Bi­den; and Brit­tany May­nard, the Cal­i­for­nia woman who started a na­tional con­ver­sa­tion about death with dig­nity.

Yet it’s a rare cancer, ex­perts stress. Be­tween 15,000 and 18,000 Amer­i­cans are liv­ing with glioblas­toma, and there are no spe­cific risk fac­tors, nor is there early de­tec­tion or known preven­tion of the deadly dis­ease, Arons said.

The five-year sur­vival rate for a pa­tient di­ag­nosed with glioblas­toma is less than 5 per­cent, said Michael Behrens, deputy di­rec­tor of the Trans­la­tional Ge­nomics Re­search In­sti­tute, or TGen, in down­town Phoenix.

Choos­ing to end med­i­cal treat­ment is in no way a ca­pit­u­la­tion to the dis­ease, he said.

“I salute them for be­ing trans­par­ent and coura­geous in how they are nav­i­gat­ing the cir­cum­stance they are in,” Behrens said of the Mc­Cain fam­ily. “I’ve been so im­pressed by the legacy of Sen. John Mc­Cain, how he has not let the hard­ships of life de­fine him.”

Sur­vival statis­tics have not sig­nif­i­cantly im­proved over the past three decades. Yet Behrens says there is hope. In a re­cently pub­lished study con­ducted at Bar­row Neu­ro­log­i­cal In­sti­tute and ini­ti­ated by TGen, for ex­am­ple, a drug called AZD1775 was shown to pen­e­trate glioblas­toma cells .

“When I was a young man en­ter­ing brain-tu­mor re­search, the typ­i­cal sur­vival for a brain-tu­mor pa­tient with these high-grade glioblas­tomas was on the or­der of 12 months. And now it’s around 16 months,” Behrens said.

“It’s about a 30 per­cent im­prove­ment. There’s also been im­prove­ment in qual­ity of life . ... While it’s not the kind of progress we’ve seen for other, more com­mon can­cers, it is still mov­ing in the right di­rec­tion.”

Some “ex­cep­tional re­spon­ders” are show­ing up in clin­i­cal tri­als, he said, citing CAR T-cell ther­apy, which uses an en­gi­neered im­mune cell from the pa­tient to fight cancer.

“We have these in­stances where there are sig­nals of good re­sponses,” Behrens said. “They are not com­mon, but if we can fig­ure out how to match ther­apy to the pa­tient’s in­di­vid­ual tu­mor, that’s re­ally what’s go­ing to be what changes the out­come for pa­tients with this ter­ri­ble dis­ease.”

Arons, of the Na­tional Brain Tu­mor So­ci­ety, re­mains hope­ful, too,

“When you think back to HIV in 1982, it was a ter­ri­ble epi­demic. Over time, with bet­ter sci­ence and bet­ter medicine, we were able to turn that into a chronic, man­age­able dis­ease,” Arons said. “Not quite cured yet, but it is quite man­age­able. We’d like to see the same fu­ture for glioblas­toma and for other brain tu­mors.”

“I salute them for be­ing trans­par­ent and coura­geous in how they are nav­i­gat­ing the cir­cum­stance they are in. I’ve been so im­pressed by the legacy of Sen. John Mc­Cain, how he has not let the hard­ships of life de­fine him.” Michael Behrens

Deputy di­rec­tor, Trans­la­tional Ge­nomics Re­search In­sti­tute

JUSTIN SUL­LI­VAN/GETTY IM­AGES

Sen. John Mc­Cain of Ari­zona looks on dur­ing a July 2017 news con­fer­ence to an­nounce op­po­si­tion to the “skinny re­peal” of the Af­ford­able Care Act. Mc­Cain’s de­ci­sion to stop brain-cancer treat­ment isn’t un­com­mon for such an aggressive form of cancer, an ex­pert says.

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