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Mesothelioma Survivor Stories: Bonnie

14 Years of Survival in the Face of Multiple Malignancies

BonnieThe Early Years

Bonnie Anderson has made a name for herself in the mesothelioma community. She is a mesothelioma warrior and a strong patient advocate who is capable of overcoming the greatest challenges. Bonnie has survived peritoneal mesothelioma for 14 years and has also been challenged with three additional cancers ­-- hairy cell leukemia, lung cancer, and breast cancer. Nonetheless, she is continuing to fight and enjoy her life. As she prepares for a three-week trip to Australia with her husband John before undergoing further treatment, Bonnie has welcomed the idea of sharing her story with the community.

The year was 1974 when Bonnie graduated from college with a dual degree in Elementary Education and Library Science. Because the Vietnam War had caused low enrollment in primary schools, the teaching position promised to her had been cut. At the same time, a local oil refinery posted openings for mechanics, and Bonnie applied for the job. She was surprised when she was hired; even though it was part of that era's national program to bring women into new positions in business and industry.

Bonnie completed the three-year training program and became, she believes, New Jersey's first female industrial electrician. For twelve years she worked in the strenuous environment of heavy industry before returning to her love of teaching and research. She became a middle school librarian and never looked back.

First Symptoms and the Long Road to Diagnosis

Early in 2001, Bonnie began to experience severe stomach pain, diarrhea, and other general symptoms. These were treated as irritable bowel syndrome. Treatment, which included anti-spasmodics and pain medication, proved ineffective. She underwent numerous tests: blood work, gynecological work-ups, a scope of her bladder, and both upper and lower GI endoscopy and colonoscopy. After performing the latter, her gastroenterologist suggested exploratory surgery, but the surgeon thought it unnecessary. A barium enema followed by an X-ray also revealed nothing.

Her primary physician referred her to another gastroenterologist, who ordered a CAT scan. The doctor noted some abnormal streaking on the scan, but other than suggesting a possible relationship to a complete hysterectomy Bonnie underwent in 1988, he couldn't determine its cause.

By December of 2001 Bonnie's abdomen filled up with ascites. Again a CAT scan was ordered, and her gastroenterologist attempted to remove the fluid. Bonnie found the procedure so painful that the specialist had to end it before he was able to withdraw all of the fluid. Tests taken from the fluid returned negative for any cancer cells. But Bonnie was still in pain, and described the pressure as "horrible" and "unreal."

In February of 2002, her gastroenterologist sent her to a surgeon for a laparoscopy. The surgeon removed 6 liters of fluid and was able to see what he described as indoor-outdoor carpet spread all over the lining of the abdomen. Before Bonnie left the operating room, he asked the hospital's pathology department to confirm that he was indeed viewing what he suspected -- mesothelioma. Pathology confirmed his assessment. Though he had been in practice for many years, the surgeon confessed that he had never seen mesothelioma other than in a textbook.

When Bonnie woke up, she and her husband John received the news. Since they had never heard of mesothelioma, only the word "cancer" registered.

Mesothelioma Treatment Begins

Though the process of arriving at the correct diagnosis had been so long and difficult, Bonnie's story then took a serendipitous turn, one that quite possibly saved her many months of searching before arriving at an effective treatment.

Her surgeon's partner had done his residency under Dr. John Chabot. Bonnie immediately received a direct recommendation to the team currently at the forefront of research and treatment for peritoneal mesothelioma: oncologist Dr. Robert Taub and his treatment partner, surgeon John Chabot, both of Columbia Presbyterian in New York City. Dr. Taub visited Bonnie immediately while she was still in the hospital seeing Dr. Chabot.

Later, Bonnie saw Dr. Taub at Columbia Presbyterian, and from slides acquired during the laparoscopy, Dr. Taub identified her mesothelioma cells as both epithelial and sarcomatoid (biphasic disease). He informed her that generally, epithelial cells are less aggressive and grow on the outside of the peritoneal lining and organs. Sarcomatoid cells, he said, are woven throughout the lining like thread through a fabric. They are more aggressive, and usually considered to be inoperable. But because Bonnie had a mixture of the two types of cells, the team decided to try surgery.

Cutting Edge Treatment and Surgery #1

At this point, in order to comply with her insurance coverage, Bonnie sought treatment within her home state of New Jersey and saw two oncologists there. The physician considered to be the top oncologist in NJ informed Bonnie that his treatment plan would consist of one operation followed by chemotherapy with gemcitabine. With her investigative spirit Bonnie quickly discovered that patients treated in this program showed an 18 percent chance of surviving for five years. Surely, she thought, there existed better, more cutting edge treatment than this. She returned to Dr. Taub's protocol and the multimodal approach, which was reporting an approximately 35% four-year survival rate for those who successfully underwent treatment. Mary Hesdorffer, the current executive director of the Meso Foundation was at that time the research nurse assigned to Bonnie’s care.

From Bonnie's insurance provider, Dr. Chabot got pre-certification to perform surgery on April 2, 2002. Prior to surgery she was feeling very apprehensive, and got the names of two other patients who had successfully undergone the same aggressive protocol with Drs. Taub and Chabot. During the initial surgery, Dr. Chabot found no mesothelioma on her organs and no large masses, though little tumors were spread all over the lining of her abdomen like shotgun pellets. He also found that the cancer was not as advanced as the team had previously thought, so Bonnie's surgery took only one and a half hours.

Dr. Chabot scraped out what he could of the visible tumor, removed Bonnie's omentum and installed the peritoneal ports used to administer chemotherapy. While healing and waiting for the staples to be removed, Bonnie joked and kept up her inquisitive attitude. "I have no idea what to expect minute to minute," she said. "I feel like I'm in Star Trek, going where I have never gone before."

Meanwhile, Dr. Taub had obtained the HMO's permission to begin chemotherapy. Bonnie began the first of eight sessions of a three week cycle: the first week receiving treatment for two days; the second week, treatment for three days; and the third week off. The three-week sessions consisted of Doxorubicin one week alternating with Cisplatin plus Gemcitabine the next. "You're just about feeling fairly decent when you had to start over again," Bonnie remembers. When the sessions ended six months later, she began four weeks of gamma interferon, once per week.

Insurance Issues Arise

At this point, right in the middle of receiving the treatment she and her doctors believed could save her life, Bonnie faced another enormous obstacle. Her insurance provider once more informed her they would not provide coverage outside of New Jersey. Bonnie's treatment with Dr. Taub suddenly ceased. Again she considered the statistics she had been given: 18% survival rate versus 35% with Dr. Taub's second clinical trial. Of course, there was only one choice.

Bonnie, her husband, and their daughter Darcy mounted a "major campaign" to get the coverage she needed to complete Dr. Taub's protocol. They contacted their senators, congress-people, the governor's office, the Department of Banking and Insurance and every federal and state agency or advocacy group they could turn up. At last they found someone at the Department of Health and Senior services that would help arm them with the resources to convince the insurance company to cover Bonnie's case.

After directing letters, documentation, and phone calls from both Dr. Taub and her own primary physician to the insurance company, Bonnie arrived at a pivotal moment. She spoke in a conference call directly with a director and the appeals board of the insurance company. She told them if they didn't allow her to continue treatment at Columbia Presbyterian, she was going to die. The appeals board said they would "take her case into consideration." Bonnie was shocked when she received their written determination: denied.

"Talk about depression!" Bonnie remembers. For three or four weeks she was in a panic, but still did not give up. Finally, Dr. Taub spoke with the state-level director and was able to convince the company that all of the components of his clinical trial had already been tested; the only experimental element was that he had put the pieces together. At last the company acquiesced, agreeing to cover treatment partially at first, then completely with just a co-pay. Ecstatic, Bonnie was completely back in the protocol. She finished the cycles of chemotherapy, completing them in August of 2002.

Surgery #2

Bonnie underwent the second surgery of the protocol in October of 2002. Dr. Chabot's observation indicated that everything looked good. He removed the ports and obtained four random biopsies. Of these, two showed no cancer cells, while two did. The surgeon was hopeful that the hot chemo belly wash would have flushed these two out. It wasn't until January that Bonnie was sufficiently recovered from the surgery to begin radiation. After five and a half weeks of radiation, Bonnie broke out in a rash that no one could identify and they halted the treatment. She finished radiation in early March of 2003, and Drs. Taub and Chabot consider her to be in the 43% of those who will survive after completing the 2nd stage clinical trial.

And now…

Six months after she finished the protocol, Bonnie felt 100% better than she did a year before. Today, Bonnie is a 14-year mesothelioma survivor. She still deals with major medical issues, symptoms of chemobrain and fatigue, and has spots of mesothelioma that continue to slowly grow, but she is grateful for the caregiving and help she receives from her husband of 49 years, John. In addition to mesothelioma, Bonnie has also combatted hairy cell leukemia, which has been in remission since treatment 11 years ago, and she is now facing lung cancer and breast cancer.

With four malignancies, Bonnie’s advice to other patients is to see a specialist no matter what type of cancer they are facing. Bonnie is currently receiving treatment for breast cancer, lung cancer, and a rare lung disease from two doctors who are at the same major hospital, which allows both doctors to have her up-to-date medical records on hand due to the integrated system. However, it becomes more difficult when she sees her mesothelioma specialist and her leukemia specialist, who are based at two different major hospitals. Bonnie does her best to ensure she provides each doctor with any new information, and she has a supportive primary physician to help her out. “It can be a little disconcerting to me if I think the doctors are not communicating. I make it my business to give them complete notes just as I reconfirm all major scan appointments. It's part of being my own advocate,” Bonnie says.

Bonnie is currently recovering from a partial lung removal, but that is not stopping her from preparing for a three-week trip to Australia. “Looking forward is hard, but I just can't let these diseases keep me down or I'd be hiding under the covers,” Bonnie says.After her trip, she will begin treatment for breast cancer. For now, she is focusing on enjoying her vacation and continuing to be the fighter and survivor that she is known as in the mesothelioma community.

Bonnie’s motivation to keep fighting comes from her granddaughter of 11 years. As she continues her treatment, she focuses on getting better so that she can be as much a part of her granddaughter’s life as possible before she grows up too much. She also gains strength from the support of John. “We have great times together when I'm strong enough, and when I'm not he helps get me through,” she says.

One of Bonnie’s passions was always horseback riding. She was able to spend time riding with her quarter horse T.J. through his old age, but she had to give up her hobby when she had a hip replacement. As Bonnie says, “Sometimes we have to let go to survive.”

Along with John, Bonnie has become an active member of the mesothelioma community, a political advocate for mesothelioma funding and awareness, and a supporter of the Meso Foundation. To date, Bonnie and John have funded $200,000 in mesothelioma research grants through the Meso Foundation.

Bonnie is a regular attendee of the Meso Foundation’s annual International Symposium on Malignant Mesothelioma, and she is already planning to attend the conference in March as long as she is healthy enough. One of her first Symposium memories was when she got in the hotel elevator and was joined by a man with a Symposium name tag. They chatted briefly about the day’s sessions and went their separate ways. “The man was Dr. Harvey Pass. He greets me to this day like an old friend and is now my lung surgeon,” Bonnie notes. Her favorite thing about the Symposium is the open interaction between patients, doctors, researchers, caregivers, and everyone else affected by mesothelioma.

She continues to encourage other mesothelioma patients to believe that every minute is worth fighting for, and when facing treatment, to adopt a "Just do it!” attitude. "That's the way I've always lived my life," Bonnie says. “I’ve learned not to take any day for granted, to enjoy doing what I can do and to learn how to live a more limited life. I do whatever it takes to get this disease under control (naps included).”

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