From Hospice to Healthy

4 min read  |  June 30, 2017  | 

It was while Manuel Garcia was driving his wife, Iris, home in April 2016 after a weekend getaway in Key West that cancer struck.

The Garcia family

Suddenly, I experienced terrible pain, like someone had hit me across both of my legs with a baseball bat,” he said. “I had been feeling tired, but nothing like this. I pulled over and told my wife that she would have to drive the rest of the way. I was in too much pain to continue.”

Giving in to pain was not something Garcia was used to.

The 56-year-old father of two teenage boys worked as a public service aide for the Miami-Dade County Police Department and was very active.

He didn’t know then that he was beginning a battle for his life — one he would ultimately win, but only after finding the right oncologist.

But first came the bad news. After returning home from Key West, Garcia visited his primary care physician, and then the ER at a local hospital, where it was discovered he was anemic and given a blood transfusion. The doctors there also performed a colonoscopy and found a mass in his colon that had spread to his liver. After some delay, a biopsy identified it as a perivascular epithelioid cell sarcoma, or PEComa, an extremely rare cancer — and one for which his doctors told him there was no treatment or cure.

Garcia was told he had from a few months to possibly a year to live — a devastating prognosis for the husband and father.

“We all just broke down,” he said about receiving the news with his family present. “All I could think about was never seeing my kids grow up.”

Garcia spent the summer in and out of the hospital, but he lost 70 pounds and his condition continued to deteriorate. Finally, the hospital released him to hospice.

Still, the family wasn’t ready to give up hope. Seeking a second opinion, they were referred to Jonathan C. Trent, M.D., Ph.D., a sarcoma expert at Sylvester Comprehensive Cancer Center. By that time, Garcia was so weak he was brought on a stretcher to see Trent, who immediately admitted him.

Unlike the doctors at the first hospital, Trent knew all about PEComa, which is caused by a gene deletion that activates a protein called mTOR, permitting uncontrolled tumor growth. More importantly, he also knew about a medication called an mTOR inhibitor that stops the tumor growth and begins killing the cancer cells.

“It is effective in approximately 90% of PEComa patients,” says Dr. Trent.

“It’s a routine clinical medicine here at Sylvester, and we use it all the time. The underlying issue is that PEComa a very rare disease — the average physician may not see one case in their entire career — so doctors who are not sarcoma specialists tend not to know how to manage it. We see dozens of these cases with patients from across the country and around the world.”

Garcia was hospitalized and intravenous treatments with the mTOR inhibitor began in September. A side effect of his cancer had been edema — swelling in his legs and abdomen caused by fluid retention. One day, however, a nurse noticed that the swelling was gone from his legs and excitedly began calling in doctors and other nurses.

“That was the turning point for me,” said Garcia, who finally was released in November. “That was when I knew the medication was working and I was winning the battle.”

Today, Garcia remains on medical leave from the police force and is still undergoing regular physical therapy to bring back his strength. Nonetheless, he has gained back 35 pounds, walks with a walker, and is able to enjoy life with his family again. He isn’t cured, but the mTOR inhibitor keeps the cancer at bay, giving him the precious time with his family that his first doctors told him he was going to lose. He credits both his religious faith and the skills of his care team at Sylvester with enabling him to enjoy that time.

“You can never lose hope,” he said. “You can never lose faith.”

Written by Robert Benchley for UMiami Health News.

Tags: cancer, Miller School of Medicine, mTOR inhibitor, PEComa, sarcoma, Sylvester Comprehensive Cancer Center, University of Miami

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