Michael Matthews

Michael Matthews fought to survive

the time gap between clinical trials

In the summer of 2001, Mike Matthews is dying. He becomes part of a small group of cancer patients whose gastrointestinal stromal tumors dramatically respond to an experimental drug, STI571. The tumors that were about to take his life begin to shrink until they are more than 80 percent gone. In early 2002, U.S. officials approve the drug, now called Gleevec, in record time. What’s left of Mike’s tumors remain stable until December 2002 when a new tumor appears. Surgery in March 2003 appears to wipe the slate clean. But nine months later, new tumors are discovered, this time in his liver. It is January 2004. March brings the promise of the new phase III clinical trial for Pfizer’s SU11248. As fate would have it, Mike gets the real drug, not the placebo. But he doesn’t respond. His tumors continue to grow and multiply at an aggressive rate. It is clear that SU11248 is not helping and he is taken off the trial. It is May 27. What now? Mike is as determined a fighter as I have seen, and he begins to explore other treatment options. He and his wife, Valerie, traveled in April to the Life Raft Group meeting in Orlando, Fla., and had spoken a number of GIST specialists there. He’d heard that the new Amgen drug, about to go into phase II clinical trials for GIST patients, is too similar to the Pfizer drug that had failed him and he is therefore not eligible for the Amgen trial. (We have since learned that although failure on the Sugen drug will preclude entry into the phase II Amgen trial, the two drugs may not be that similar and Amgen should not be precluded from helping Sugen-resistant GIST patients in future.) A panel of the world’s GIST experts reviews the available options for patients in Mike’s situation and concludes that only traditional disease holding actions are available, including higher doses of Gleevec, surgery, and chemo embolization -- none of which are applicable to Mike’s situation. Finally, as the meeting draws to close, he hears about a new Bristol Myers Squibb (BMS) drug about to enter phase I trials at Dana-Farber. By early June, Mike is back at home in Nova Scotia trying higher doses of Gleevec — 800 mg., 1,000 mg., 1,200 mg. Side effects get worse and his tumors continue to grow. At the June 5-8 meeting of the American Society of Clinical Oncology, Dr. George Demetri of Dana-Farber Cancer Institute and I discuss Mike’s options, particularly whether he can get into the coming BMS trial. The trial has not yet started and patients are lining up for the few slots. Mike is not a Dana- Farber patient and is not a U.S. citizen, so he will have to pay more than $100,000 just to get into the door, in addition to travel and lodging. I call Mike and we discuss the situation. Mike decides to try the higher doses of Gleevec a while longer, and in the meantime make an appointment at Dana-Farber. It is June 6. Weeks go by. Mike’s tumors continue to grow. I call Demetri about the BMS trial. There are far too many patients for the handful of slots at Dana- Farber, and Demetri suggests trying Scotland. I track down the principal investigator in Glasgow and contact Mike, Numerous phone calls and e-mails follow. There is an obstacle: Mike is not a U.K. citizen. More exchanges. Mike’s local oncologist gets involved and finally Mike gets a July 27 appointment to see Dr. Jeffrey Evans in Glasgow for a pretrial consult. He has missed the July trial slot by a few days but there is a potential slot open on Aug. 19. Mike then flies to Dana-Farber to see if there is something, anything they can do for him. There isn’t. So he continues making plans for Scotland. It is July 17. Mike’s tumors continue to grow. He is getting weaker. His liver enzymes are rising to the point where they could exclude him from the Scotland trial. He sees his local oncologist, Dr. Lori Wood. She schedules a blood test to check his liver enzymes. Mike also meets with his lawyer, and writes to the Life Raft Group: “… I will be meeting with palliative care as well to discuss pain management and other end-of-life issues. I am so close. I just need to get through the next few weeks. I am doing everything I can; your thoughts and prayers will be greatly appreciated.” It is July 23. Valerie calls. Mike’s liver enzymes are too high. Mike asks if I can come to his going- away party. Saturday, July 24: Mike’s friends have arranged a flight to Halifax, Nova Scotia. Halfway to La Guardia airport the radio tells me the expressway ahead is closed. A secondary route gets me to the airport. Unfortunately, I have no passport (sent it off to be renewed) and I’ve mistakenly taken a copy of my birth certificate rather than the original. My ticket, booked less than 24 hours ago, my 14-hour stay in Nova Scotia, and the buzzing alarm clock in my overnight bag earns me the attention of various security officials. A fellow with my name on a sign greets me at Halifax airport. Neither of us knows where we’re going, but a few phone calls fixes that. We arrive at Purcell’s Cove Club outside of Halifax. Valerie greets me and we go inside. Must be over 150 people here. After dozens of hello hugs I am led to where Mike is sitting. He has no idea that I was coming and the look on his face is one of complete surprise. Mike gets up from the living room chair that his friends brought from home to make him comfortable, and we hold one another tight, the tears rolling down my face. The party is really something, complete with a rock band playing my kind of music from the ’60s. I am part of the Matthews’ extended family and spent the next few hours being passed from one tearful hug to another. Everyone had heard about Mike’s Life Raft Group and I am asked to say a few words. Then Mike gives instructions to his friends about the fundraiser he wants them to throw for us. Two moments will forever remain with me. The first is when Mike got up from his chair and danced with Valerie. Only music and heartbeats could be heard as we watched, each of us with the same thoughts and feelings. The second was when Mike had to sit down and take off his shoes. His eldest daughter, Ashley, kneeled by his side and gently massaged his feet. After the party, it’s off to Mike and Valerie’s home for a very late meal with a few close friends and their daughters, Ashley and Laura, two of the sweetest girls I have ever met. We talk and I have a chance to spend some private time with Mike. The setting is peaceful and surreal. Their home is on a cove with the ocean off to the right and tall ships passing by in front. Many goodbyes and hugs later, and I head to a friend’s home for a few hours’ sleep before rising with the sun to fly back home. I pack many bittersweet memories, honored to have been invited and overwhelmed by the experience. Tuesday, July 27: It is the day Mike was supposed to be in Scotland, seeing a doctor, getting on a trial. But at 6:45 a.m., as the sun rises over the Atlantic and tall ships pass by, Mike Matthews’ fight ends. The lethal time gap between clinical trials was too much.