I think it was Cheryl who introduced herself first, and I was delighted to hear she was from my home state, Alabama, about two and a half hours north of Montgomery, in Anniston. When I told her I was from Montgomery, she was ecstatic to finally find someone with a meso connection in her home state.

Cheryl lost her husband, Virgil, to mesothelioma on May 31, 2005, just two days after their 40th wedding anniversary. She began attending the Meso Foundation conference almost immediately, urgently needing to connect with others who might understand what she was going through, and to make sense of a disease that took her best friend and love of her life before either of them fully realized what was happening.

Virgil first began to notice something was wrong in late March 2004, when he had a severe pain in his side. His hobby was restoring vintage automobiles, and he had been working on a friend’s car, so he thought he had possibly just bruised a muscle while working. But shortly after that he developed a terrible cough.

“It was a whole-body cough,” Cheryl recalls. “Like from head to toe.”

Virgil went to see his doctor, who thought the cough might be related to a drug he was taking following a heart catheterization, which he’d had earlier that year.

“The doctor said it would take 60 days or so to get the drug out of his system, so basically for two months we did nothing,” Cheryl says. “The pain in his side persisted, and the cough got worse. Right up until this time, after his heart problems, he had been dedicated to cardiovascular exercise and eating right. He was probably in the best shape he’d been in for years. He would actually get onto to me about exercising more and eating right,” she recalls with a laugh before turning sober again. “So this was just odd. He kept feeling sicker and sicker.”

He went back to the doctor, thinking maybe there was something wrong with his heart. Tests showed his heart was fine, and doctors sent him home and told him to just continue to exercise and eat right.

But Virgil began having trouble breathing. It was September by now. He visited the doctor again, and was referred to a pulmonary specialist for a thoracentesis. They found fluid in his lungs, but tests came back negative for cancer or any type of infection. But the fluid came back almost immediately.

Cheryl was getting really worried.

“He was used to being active, but now he could hardly get around. He had no energy,” she remembers. “We had requested referrals to see some doctors in Birmingham, because he was dying in front of me. I knew there was something more going on, and I couldn’t understand why nobody could tell us. We had two more thoracenteses and still no diagnosis. The local doctors said they didn’t know what was wrong with him.”

At this point, Cheryl decided to call Birmingham, and talked to a nurse at UAB Medical Center. She got a referral for a pulmonary specialist, and made an appointment for Virgil the following week. But when they got to see the doctor, he said Virgil actually should see a thoracic surgeon, and gave them another referral. They gathered all Virgil’s test results and visited the thoracic surgeon on December 14. An initial theory was that Virgil might have a collapsed lung and scar tissue.

“Virgil had really gone downhill,” Cheryl said. “He was aging. Things had fallen apart in nine months, since the first symptoms.”

Doctors decided to do a thoractomy, but because it was Christmastime, they decided to wait until January, telling Virgil and Cheryl to go home and enjoy the holidays with their family. He finally had the surgery Jan. 4, and they first heard the word mesothelioma. But the diagnosis still wasn’t definite until about 10 days later.

“At that point it was stage 2+ or 3-. It was already advanced. We were referred to a doctor for chemotherapy, but still nobody was really telling us much about what this diagnosis meant. We had no idea.”

Virgil underwent a series of chemotherapy treatments, and then on April 20 began receiving radiation at a cancer center in Birmingham.

“By then, his breathing had deteriorated and they’d put him on oxygen,” Cheryl said. “He’d really not been able to lie flat since September. He had to prop up in a recliner or on a pallet on the floor.”

On May 19, a Thursday morning, Virgil woke Cheryl and told her something was wrong and that he felt he needed to go to the hospital. They went to UAB. On May 21, the doctor came in and told them Virgil was not improving, and that he didn’t have long to live. She estimated two and half to three months, and advised them to get their affairs in order.

“This was the first time anyone really talked to us about dying. Everyone was telling us he had time, that there was all this time.”

They called in Hospice care, and their daughter, Pam, came to visit, bringing their grandson and making a video of Virgil and the boy. On May 30, Virgil began doing worse, and passed away the next day. This was just nine days after they’d first been told that Virgil’s condition was terminal, and about 15 months since his first symptoms.

Cheryl was in shock. “He was 60 years old and had been in prime health,” she says. “When he died, he looked like he was 90. I didn’t even realize how bad he looked because I guess I saw him every day. Months later, I watched the video Pam had made just before he died, and then I really saw it.”

Virgil’s illness had been such a whirlwind; Cheryl wasn’t quite sure what to do after his death. She still couldn’t quite believe it had even happened. She was angry, that Virgil went so long with no diagnosis and no treatment. She felt guilty, like she ought to have somehow known more, or done more. And she felt alone.

Some time after Virgil was diagnosed with mesothelioma, Cheryl found the Mesothelioma Applied Research Foundation, a non-profit organization dedicated to the elimination of mesothelioma through outreach, education and funding research efforts to find a cure. She also connected with Sue Vento, the widow of Sen. Bruce Vento of Minnesota, after whom the pending “Bruce Vento Ban Asbestos and Prevent Mesothelioma” legislation before the U.S. Congress was named.

“She emailed me and I think called me, too,” Cheryl says. “She sent me a book on meso as well. She was the calm in the middle of my storm, and has kept in touch with me during this time via emails.”

Following Virgil’s death, Cheryl decided to attend the Meso Foundation’s annual International Symposium on Malignant Mesothelioma, and packed her bags for the trip to Washington, D.C. Many of her friends couldn’t understand it, but she says it was something she had to do.

“I somehow found MARF and the main reason I went to the conference that first year was to have someone to share this pain, and try to come to some conclusions,” she said. “You feel like you didn’t do something you should have. We had never heard of the word until they told us the diagnosis.

“I really felt like … when you lose your husband, who had been my friend, before he was my sweetheart – we’d known each other since we were 12. I felt if there was some way I could reach out to someone else it would help me as much as maybe I could help them. I felt there was that need in my heart, to find out as much as I could about the disease,” Cheryl says. “It was wonderful to know that people were surviving. But it makes me angry that Virgil didn’t have a chance.”

She had a chance to meet her “rock,” Sue Vento, at that first conference as well. Since that time, Cheryl has attended the Symposium for three years in a row, where she is active, joining others in visiting Capitol Hill to ask Congress to ban asbestos, and to fund mesothelioma research. She is also active in her community, talking to people about the dangers of asbestos exposure and about mesothelioma. She takes brochures about mesothelioma to doctors’ offices, hoping to increase knowledge among the medical community, hoping that someone else may be diagnosed early enough for treatment.

“Now I have contact with more people who are battling mesothelioma, and I learn that most people also have never heard of it. At the time, you just have to hang in there, and you can fall apart later. So I try to connect and just try to help someone, to let them know that someone is there who understands what they are going through. And it helps me too,” she says.

“I share my story every chance I get. I wear an awareness pin. People need to know asbestos is out there and it’s killing people.”

Outreach is hard. Every time she shares Virgil’s story, the pain is fresh again. But Cheryl is determined, and she’s willing.

“Mesothelioma patients and their families are victims,” Cheryl says. “They are victims of asbestos. And all of this COULD and SHOULD have been avoided!”

SOURCE: myMeso › Victims of asbestos — Virgil and Cheryl’s story

Treating Mesothelioma

Because this is such a rare cancer, it has been hard for doctors to compare the value of different treatments. Since many doctors have little or no experience treating this disease, you may be referred to a specialist at a large medical center.Treatment options include surgery, chemotherapy and radiation therapy.One problem with treating mesothelioma is that it does not grow as a single mass. Instead it tends to spread along surfaces, nerves, and blood vessels. This makes it hard for one or more types of treatment to get rid of all of the disease.While surgery is not likely to cure the cancer, it might extend the patient’s life.Depending on the type and stage of the cancer, chemotherapy may be given as the main treatment or along with surgery. Chemotherapy for this disease is given to relieve symptoms, not to cure the cancer.As a rule, radiation treatment doesn’t help much for mesothelioma, and the need to treat a large part of the lung leads to problems with lung damage. But radiation can be used along with surgery to kill small areas of cancer that cannot be seen and removed during surgery. It can also be used as a way to ease symptoms such as shortness of breath, pain, bleeding, or trouble with swallowing. If fluid builds up in the chest, radioactive drugs can be put into the space after the fluid is drawn out. This might help keep the fluid from coming back.

New in Mesothelioma Research

There is always research going on in the area of mesothelioma. Much of this research has focused on learning exactly how asbestos changes normal cells and their DNA to cause cancer. Understanding how these fibers produce cancer might help us find ways to prevent those changes.Now that we know about the dangers of asbestos, we can limit or stop its use in homes, public buildings, and the workplace. But rules to protect people from asbestos are much less strict (or they do not exist at all) in some other countries.Research is also going on to learn about the role (if any) of a virus (SV40) that has been linked to mesothelioma in some studies.Because chemotherapy drugs have not worked very well against advanced mesothelioma, several new ideas are now being studied. These include drugs which kill cancers by stopping their blood supply and drugs which interfere with the ability of some cancer cells to grow quickly.Doctors are always learning more about the best way to treat people with mesothelioma. Treatments that combine surgery, radiation therapy, and chemotherapy are now being studied and may provide the most promising option for some patients.New drugs, along with other types of treatments, are now being tested in clinical trials.Another new approach is a type of gene therapy. This treatment uses special viruses that have been changed in the lab. The virus is injected into the space around the lungs where it infects the cancer cells. When this happens, the virus in turn injects a gene into the cancer that may help immune system cells to attack the cancer.

Research at UAB

The University of Alabama Birmingham (UAB) Comprehensive Cancer Center is a research and teaching hospital, and is currently conducting a number of studies on the treatment of mesothelioma.In 2005, UABs Spring/Summer magazine published information about ongoing studies being conducted by Katri Selander, M.D., Ph.D., a Cancer Center Associate Scientist, and Pierre Triozzi, M.D., about the effects of bisphosphonates on cancer cells.Bisphosphonates are drugs that are commonly used to treat and prevent osteoporosis. They also are used to treat metastatic breast and prostate cancers.The UAB article reported that Drs. Selander and Triozzi “have examined the effects of bisphosphonates on cancer cell cultures and in animal models, and have found that the drugs kill mesothelioma cells in both.” Further results of these studies were reported in the May 1, 2006 issue of Clinical Cancer Research, Vol. 12, 2862-2868; and in the European Journal of Pharmacology, Volume 559, Issue 1, dated March 15, 2007. Key points of the article in Clinical Cancer Research said that “the diagnositc use of radioactive bisphosphonates has revealed the accumlation of bisphosphonates in mesothelioma” and said that results of the studies “support further study of bisphosphonates in the management of mesothelioma.” The European Journal of Pharmacology report states that “Pre-clinical studies indicate that bisphosphonates also ihibit the growth of various cancer cells in vitro” and “in … mouse AB-12 mesothelioma cells.” For more information, visit UAB’s Comprehensive Cancer Center.

SOURCE: myMeso › Mesothelioma Treatment Options

There are links on this page to a number of web sites that provide medical information and information about asbestos, exposure to which is the leading cause of Mesothelioma. Check back regularly, as I will be adding to that list of links in addition to posting new information here.

Here is a good general definition, from the University of Alabama Birmingham (UAB) Medical Center, which has a Mesothelioma Clinic at its Comprehensive Cancer Center :

Q: What is mesothelioma and who is at risk?

A: Mesothelioma is an aggressive form of cancer in which cells of the mesothelium (the membrane that covers and protects most of the internal organs) become abnormal, form tumors, and grow without control or order. The disease usually affects the surface of the lung or less commonly the lining of the abdomen. It is relatively uncommon, with 2,500-3,000 new cases diagnosed in the United States each year. The major risk factor is working with asbestos, but the disease has been reported in some individuals without any known exposure to it. An experimental drug, Pemetrexed®, has shown promise in treating advanced mesothelioma. The UAB Mesothelioma Clinic and Comprehensive Cancer Center offer clinical trials for treating the disease. Early referral for the best treatment is important after diagnosis.

UAB is a research and teaching hospital, and is currently conducting a number of studies on the treatment of mesothelioma.

In 2005, UAB’s Spring/Summer magazine published information about ongoing studies being conducted by Katri Selander, M.D., Ph.D., a Cancer Center Associate Scientist, and Pierre Triozzi, M.D., about the effects of bisphosphonates on cancer cells.

Bisphosphonates are drugs that are commonly used to treat and prevent osteoporosis. They also are used to treat metastatic breast and prostate cancers.

The UAB article reported that Drs. Selander and Triozzi “have examined the effects of bisphosphonates on cancer cell cultures and in animal models, and have found that the drugs kill mesothelioma cells in both.”

Further results of these studies were reported in the May 1, 2006 issue of Clinical Cancer Research, Vol. 12, 2862-2868; and in the European Journal of Pharmacology, Volume 559, Issue 1, dated March 15, 2007.

Key points of the article in Clinical Cancer Research said that “the diagnositc use of radioactive bisphosphonates has revealed the accumlation of bisphosphonates in mesothelioma” and said that results of the studies “support further study of bisphosphonates in the management of mesothelioma.”

The European Journal of Pharmacology report states that “Pre-clinical studies indicate that bisphosphonates also ihibit the growth of various cancer cells in vitro” and “in … mouse AB-12 mesothelioma cells.”

For more information, visit UAB’s Comprehensive Cancer Center online at www3.ccc.uab.edu or click on the link in my list.

SOURCE: myMeso › Mesothelioma Research