One-of-a-kind therapies developed by the world's leaders in cancer and top class nursing are offered every moment at the Johns Hopkins Kimmel Cancer Center. But the experience of being treated for cancer is hardly routine for our patients. The following are stories of several patients, Kelly, Kristin, and Monsignor Arthur Valenzano who have shared their experiences with our readers.
Shortly after her son was born in June 2004, Kelly felt tired and ill. At first, she chalked it up to being a new mother. But after six months had passed and she still felt like she was recovering from the delivery, she addressed her concerns to her doctor, who sent her to a local emergency room for tests.
A CAT scan revealed surprising and grim news: not only did she have a blood clot in her lungs and in her left arm, but there was also a large Hodgkin's lymphoma mass in her chest. The tumor – 13 1/2 centimeters wide (about five inches) – had grown so big that it had dislocated her heart. The doctors recommended six months of chemotherapy, at which point they told her the mass should be gone.
Though Kelly took well to the treatments, the tumor did not. A PET scan following eight rounds of chemotherapy showed that the mass had grown to more than 18 centimeters (about seven inches). While her doctor recommended a trial of radiation, Kelly quickly sought out other opinions. A Johns Hopkins Kimmel Cancer Center team including Dr. Richard Jones told her she could consider radiation, though they thought she ultimately would need a bone marrow transplant.
At that point, she says, her local doctor had exhausted his options and encouraged her to seek another opinion. Kelly was only 26 years old.
“I thought, ‘I’m not done,’ ” she recalls, and she quickly called back Dr. Jones’ team at Hopkins. “They were amazing. They saw me right away and were optimistic but didn’t sugar-coat anything.”
Dr. Jones recommended a standard bone marrow transplant if one of her family members proved to be a good tissue match, or a then-experimental half-match transplant if they weren’t. But before she could be accepted for a transplant, they said, they had to stop the tumor from growing. While they set out to test her family members, they worked out a newer, more aggressive chemotherapy regimen that she could undergo close to home to try to stun the cancer. The weekly, intravenous dose of medications made her ill but still did not shrink the tumor. A second regimen finally slowed the tumor’s growth, and radiation held it at bay. Then, she got a call that none of her family members matched.
At that point, Kelly and the team decided to pursue a so-called haploidentical bone marrow transplant, using her brother Clayton – a half-match – as the donor.
“Initially I was disappointed that my brother was not a full match, but Dr. Jones felt that since Clayton was not a complete match, that his mismatched DNA may bring better ‘fighting power’ to the table than if he were a full match, so it turned out to be a blessing in disguise,” Kelly recalls.
They set a date for the procedure while Kelly started 12 weekly radiation treatments to the chest and neck, which seemed to finally stun the mass and, for the first time, show a slight decrease in size. Then, 30 days before the transplant, Kelly, who was unmarried at the time, received a call on a Friday afternoon that her health insurance wouldn’t cover any of the estimated $380,000 expense. When her fiancé realized that his insurance would cover 80 percent of the cost of the transplant, they arranged a wedding within three days, with the church, pastor and caterer donating their services.
In addition, Kelly says, many friends, family members, and coworkers not only donated money, but also put together several fund-raisers to help off-set the costs of medications and other expenses she would incur having to live at Hopkins: “They did anything from silent auctions to basket bingos to concerts and even made and sold cookie platters! I have an amazing support system and certainly am loved by many!”
On May 5, 2006, Kelly had her transplant. That night she was admitted to the hospital with a fever, but was discharged the next day to Hopkins’ innovative IPOP (Inpatient/Outpatient) program, which allows bone marrow transplant patients to receive part of their care as outpatients. While staying at a local townhouse, Kelly checked in to the clinic daily. Then, a month after the procedure, a PET scan showed the tumor was shrinking. “That was pretty monumental to us,” Kelly says.
Because of the size of the mass, and the fact that her radiation treatments had caused some scar tissue, Kelly says doctors told her the tumor may never completely go away, but it no longer has cancerous properties and it has gradually grown smaller. Her most recent PET scan showed that it’s now about a quarter of its original size.
And, amazingly, she got pregnant again after her transplant. Her healthy daughter was born in May 2008.
“I can’t say enough good things about (the transplant team),” Kelly says. “They really have touched my life.”
In 2001, Kristin was getting ready to retire from her job when she noticed she was a little extra tired.
After she mentioned that to her cardiologist, he ran some blood tests, which showed an abnormal level of M-protein.
Through a friend’s referral, Kristin came to see Dr. Carol Ann Huff at the Johns Hopkins Kimmel Cancer Center. A series of tests revealed that Kristin had a potential precursor of myeloma called monoclonal gammopathy of undetermined significance (MGUS) – a higher than normal production of M-protein by plasma cells in the absence of other signs of myeloma.
Since her MGUS did not require treatment, Kristin and her husband decided immediately to buy the RV they had talked about, in case her MGUS eventually turned into myeloma. They traveled extensively in the United States and Canada for four summers, including a five-month trip to Alaska.
Tests during a checkup in late 2004 showed Ruckdeschel’s M-protein levels had increased enough to indicate she actually had multiple myeloma. In early 2005 she enrolled in a clinical trial combining the drugs Velcade and thalidomide. After five four-week cycles of treatment, she dropped out of the trial, owing to the progressing neuropathy (painful nerve damage) in her lower legs. By then she was in nearly complete remission, which lasted for 16 months.
By October 2006 Kristin was back at Hopkins for treatment. This time Dr. Huff recommended the drugs Revlimid and dexamethazone. By February 2007, those drugs produced a complete remission.
Kristin, still in complete remission after three years, now enjoys a normal life, hiking and traveling with her husband, and spending time with her grandchildren. She returns to Hopkins and Dr. Huff every three months for blood tests and infusions of the drug Zometa to strengthen her bones.
“I’ve been very grateful to have found Dr. Huff,” she says. “I find her so easy to talk to and extremely bright…I can’t get over Hopkins and how nice everyone is.”