Fred Baron update: Biogen caves in to human decency

October 16, 2008

Mesothelioma titan Fred Baron will receive the last chance drug he needs to fight back what is likely terminal multiple myeloma, despite Biogen’s initial reluctance to provide the drug for off label use even with FDA approval, immunity from suit, and the plea of senators, ex-presidents, and tort giants like Mark Lanier.

“Thanks to the persistence and hard work of so many friends, Fred has received Tysabri,” Baron’s wife, Lisa Blue, said in an e-mailed statement. “The Mayo Clinic working with the FDA found a legal basis for this use. We have every expectation of a positive result.” The whole story is here.


Mesothelioma science wrap-up

May 9, 2008
1. Genetic susceptibility to malignant pleural mesothelioma and other asbestos-associated diseases
2. Diagnostic value of carcinoembryonic antigen in malignant pleural effusion
3. Worker produced health education material for the construction trades
4. Efficacy and safety of Pemetrexed in combination with cisplatin for malignant pleural mesothelioma: a phase I/II study in Japanese patients
5. Individual versus standard quality of life assessment in a phase II clinical trial in mesothelioma patients: feasibility and responsiveness to clinical changes
6. Cytotoxic responses and potential respiratory health effects of carbon and carbonaceous nanoparticulates in the Paso del Norte airshed environment
7. Prediction of mesothelioma and lung cancer in a cohort of asbestos exposed workers

Trimodality treatment of malignant pleural mesothelioma

May 5, 2008

1: J Thorac Oncol. 2008 May;3(5):499-504

Batirel HF, Metintas M, Caglar HB, Yildizeli B, Lacin T, Bostanci K, Akgul AG, Evman S, Yuksel M.

Marmara University Hospital, Department of Thoracic Surgery, Istanbul, Turkey.

INTRODUCTION: Multimodality treatment has achieved significant success in local control and treatment of early-stage malignant pleural mesothelioma patients. However, its favorable effect on survival is questionable. METHODS: We have instituted a trimodality treatment protocol consisting of extrapleural pneumonectomy, adjuvant high-dose (54 Gy) hemithoracic irradiation, and platin-based chemotherapy in a multi-institutional setting. Preoperative pulmonary function tests, echocardiogram, chest computed tomography, and magnetic resonance imaging scans were performed in all patients. Twenty patients have been treated with this protocol during 2003-2007. Seventeen had a history of environmental asbestos/erionite exposure. Clinical stages were T1-3N0-2. RESULTS: Median age was 56 (41-70, 8 female). There was one postoperative mortality (% 5) due to ARDS. Morbidity occurred in 11 patients (% 55). Histology was epithelial in 17, mixed in 2, and sarcomatoid in 1. Sixteen patients underwent extrapleural pneumonectomy. Microscopic margin positivity was present in 14 patients with macroscopic complete resection. Twelve patients completed all three treatments. Median follow-up was 16 months (1-43). Overall median survival was 17 months (24% at 2 years). Eight patients had extrapleural lymph node involvement (internal mammary [n = 3], subcarinal [n = 2], pulmonary ligament [n = 1], diaphragmatic [n = 1], subaortic [n = 1]). There was better survival in patients without lymph node metastasis (24 versus 13 months median survival, p = 0.052). Currently, 7 patients are alive, 6 without recurrence, and 2 patients at 40 and 45 months. CONCLUSIONS: Trimodality treatment in malignant pleural mesothelioma seems to prolong survival in patients without lymph node metastasis. Novel techniques are needed for preoperative assessment of extrapleural lymph nodes.

California soccer mom in tough match with meso

April 7, 2008

Gloria Serrins is a 54 year-old mother of three beautiful daughters who lives in Mission Viejo with her husband, Phil, to whom she has been married for 31 years. Outgoing, vivacious, and completely dedicated to her family, Gloria now finds herself in a scenario that on one could have predicted.

In July, 2007 Gloria realized that something was wrong with her health. Vigorous, athletic, and normally full of energy, she could feel that something was out of synch, but didn’t know what it was. At first Gloria thought it might be the flu, but that didn’t explain the constant discomfort she felt whenever she was seated.

The discomfort caused her to fidget, and ultimately to have problems sleeping. Since Gloria always slept on her right side, it was too painful to lie down.

Trouble in paradise

Gloria and Phil were approaching their 31st wedding anniversary and he had set up a cruise to Alaska. Normally engaged and excited to be doing things with “the love of her life,” Gloria simply couldn’t muster any excitement about being away from home. The trip was extremely important to Phil so that they could celebrate their marriage, and also because Phil’s father had died at an early age after a lifetime of hard work. “I made up my mind early on that I’d take those extra minutes, hours, and days to be with my family. I miss my father every single day, and vowed that the only thing we really have in life—time—I would share with Gloria and the girls.”

Phil Serrins adores his wife, and he had sacrificed an 80-hour week career track to lead a lifestyle that would let him be there for them. Whether it was the school play, a family weekend trip, or traveling for soccer games, Phil and Gloria pulled together for thirty-one years, always in the same direction, always with the same goals in mind, always bound together by love.

Gloria vowed not to say anything to Phil about the pain because she knew that if he had any inkling, he would cancel the cruise and have her in front of a doctor immediately. The cruise was terrible, with Gloria’s discomfort descending into misery, compounded by an inability to sleep more than a couple of hours each night. Gloria was still afraid to say anything because Phil had developed a pain in his right eye during the trip and she was petrified that they would both be sick at the same time. Unable to withstand the pain any longer, she told Phil when they returned to California, after having endured almost unbearable pain and sleep deprivation on an ocean-bound cruise.

Web detective

Just as she had known he would, Phil whisked Gloria to St. Joseph’s, where a CT scan, MRI, and x-ray revealed spots on her lung. Dr. Brian Palafox was unable to conclusively diagnose, so Phil took charge. He got on the Internet and began consulting with doctors who he knew through his chiropractic practice.

Dr. Palafox affirmed that the only way to get a conclusive diagnosis was via a tissue biopsy. On Oct. 15 Gloria went in for surgery and, and the surgeon performed the biopsy and a talc pleurodesis. Subsequent immunohistochemical staining confirmed mesothelioma, biphasic type. When the Serrins learned that the oncologist recommended by Dr. Palafox only saw one mesothelioma case per year, they decided to continue looking.

Gloria was diagnosed with bi-phasic pleural mesothelioma on October 16, 2007.

Following her diagnosis, Gloria consulted with Dr. Cameron in Los Angeles, and Dr. Rusch and Dr. Pass in New York. All three surgeons determined that Gloria as not a candidate for surgery because of the cell type and advanced stage of her disease. Gloria began treating with one of the nation’s leading medical oncologists, Dr. Vogelzang at the Nevada Caner Institute in Las Vegas.

Despite an aggressive and arduous regimen of chemotherapy, Gloria consulted with Dr. Cameron again after her doctors determined that the Alimta/cisplatin regimen was not working. Unfortunately, she was still ineligible for surgery. Although a different chemo cocktail showed no progression of the tumor, it failed to show that the tumor had shrunk, either.

Chemotherapy has been discontinued, and five weeks from now she will do another CT scan to look into additional treatment. Gloria is struggling her hardest to keep the cancer at bay.

An American family

Gloria was born in 1953 in Goeppening, Germany, the daughter of a U.S. WWII army veteran and a German national. Her father, Francisco “Frank” Carillo, brought the family to the U.S. that same year, and the family relocated in southern California.

Gloria and Phil’s first daughter, Ricki-Ann, was born in1980. The family moved to Mission Viejo because Phil was studying to be a chiropractor. Gloria and Phil’s second daughter, Stacy, was born in 1981, and their daughter Lindsey was born in 1984. After Lindsey’s birth, Gloria became a full time housewife.

The dynamic and loving Serrins family has been built in large part by the unstinting love and devotion of Gloria. The unique character of each daughter was carefully nurtured so that each grew up to be a mature and responsible adult. Ricki-Ann loved being outside, and never played with dolls but liked sports, bikes, and action. Ricki-Ann played little league baseball as the only girl on her team, and later became an accomplished soccer player. Stacy loved play with Gloria’s jewelry, makeup, and clothing. At age three she entered dance school, and learned tap and ballet. Gloria would drive Ricki-Ann to soccer practice and Stacy to dance class and had to coordinate the transportation so no time was wasted. Stacy danced until she was twelve. The family never missed going to one of Stacy’s recitals.

Like her older sisters, Lindsey was always busy with sports and dance, and Gloria spent all her time taking care of the three girls. Gloria would volunteer at the girls’ elementary school until eventually she was at the school every single day. With three daughters at the same school at the same time, she helped the teachers any way she could. Gloria took care of other children as well, and when she became familiar with the kids and their parents she’d set aside Friday as the day to take her daughters and their friends to lunch at Taco Bell. The kids loved having Gloria in the classroom, and Phil would often come by the school on his lunch break. The daughters loved having their parents around at school.
Ricki-Ann graduated from the University of Maryland on a soccer scholarship.

Ricki-Ann is an assistant soccer coach at Tulane University in New Orleans. Stacy attended Santa Barbara City College where she studied art and dance. Stacy graduated from beauty college and works as an esthetician at the Montage Resort at Laguna Beach. Lindsey was recruited to UCLA for their crew team, and graduated in 2005 as a history major. She now works as an elementary school teacher in New Orleans, near her older sister. All three daughters attribute their success to their nurturing, involved, and tireless mother. Gloria’s devotion and dedication to her family, and her extraordinary toughness, are exemplified best when she says, with no trace of pride, “All three of my girls were natural childbirths. I didn’t want it any other way.”

After thirty-one years of marriage, Gloria and Phil have grown together spiritually and emotionally. They both love to garden and spend their weekends together in the yard. With numerous flowers in the yard, the centerpiece is Gloria’s rose garden. Gloria loves crafts, decorating, wildlife, and dogs. She has a blue-gold macaw that chatters gregariously in their home, and two Australian shepherds, Berkeley and Mac. She and Phil love to take their daily promenade around the neighborhood, and they enjoy walking along the nearby nature trails and wilderness areas.

“Gloria always kept things in check and kept me on track,” Phil says in disbelief, shaking his head at the catastrophic calamity that has befallen his family. “She was the one who was reasoned and even-handed with the kids. She never rushes to judgment or breezes past things. Gloria sees life, where most people just run through it. If she’s on skis, she won’t race down the mountain, but will stop and look at the trees and the animals, and even at the snow. We go to movies all the time. While the kids were growing up it was about Gloria being there to see them and raise them. We went to every school function, not just to be supportive but to be together. And now…” his voice trails off, “…this.”

Asbestos-related illnesses on the rise in Japan

March 31, 2008

JAPAN: The government has grudgingly released the names of 2,167 companies and offices around the nation where workers received compensation in connection with asbestos-related illnesses.

The Ministry of Health, Labor and Welfare has been under pressure from groups supporting those suffering from such respiratory illnesses as well as family members to release the names quickly.

The list would enable those who lived near the companies or who had family members who worked there to get checked for diseases such as mesothelioma, a disease of the lungs which is invariably fatal.

Read the complete story here.

Japan: 45 more cases linked to asbestos exposure

March 31, 2008

TOKYO, JAPAN: A further 45 people have been confirmed with health problems after exposure to asbestos from a former factory site in Ota Ward in Tokyo, the ward office said Saturday (29 Mar).

One man in his 70s died in October of pericardial mesothelioma–a form of cancer caused by exposure to asbestos–and seven other people developed health problems after inhaling asbestos, according to the ward office.

Read complete story here.

Weight loss after chemo/surgery for mesothelioma

March 27, 2008

One thing that mesothelioma patients have to contend with after undergoing chemotherapy and/or surgery is weight loss. A loss of 30-40 pounds isn’t uncommon, and although there are plenty of people who have weight to spare, the issue is much more difficult for patients who start off lean. Since the surgery, chemotherapy, and the cancer itself can all work to greatly depress appetite, lean patients who shed 30 pounds may find themselves losing most, if not all, of the natural padding on their backside.

Lois Schwarting, meso spouse and caretaker extraordinaire, invented a solution for her husband Marty that makes it much easier for him to sit down: what she calls a “butt pillow.” By stacking several layers of eggshell foam and enclosing it with a pillowcase, Marty has a lightweight, portable, and eminently comfortable cushion that he can use whenever he sits. Lois has sent the photo below to show the type of foam, as well as instructions about how to make the pillow:

“Here’s pics of how I built a butt pillow for Marty. Then I made a pillowcase right size to slip over and stitched end closed. Use some E6000 glue to hold the pillows in place, and then draw yarn through the 3 layers (loop of yarn in the valley part of foam so not irritate skin. Just tie in a bow on the bottom layer to help hold in place! Marty’s “butt pillow” is usually in a recliner which he usually sits in, but it or the “spare one” is taken with them when leaving house and ….. (he uses it in the other places)

“Some people have weight loss and body wasting caused by cancer even before diagnosis and it continues during surgery or chemo, so this can really make life more comfortable.

“Here are dimensions of the foam pieces:
Purchase 1-1/2 thick egg-crate foam.
Cut four pieces 6 inches by 9 inches.
Cut one piece 9 inches by  18 inches.

“E6000 glue works great, as it will not “melt” or “eat” the foam. Apply a few drops of glue to the “bumps” of the eggcrate side of the foam in a couple of places. Stack the foam pieces together as pictured. For added stability, run some yarn from the bottom piece of foam up through the small pieces, making sure loop yarn is in the middle, and pull back through to underside and tie in a knot or bow.

“Caution: Even a small bow made a ‘red bump – sore spot’ on Marty’s skin when I’d tied yarn in a bow in the depression of the top foam! I made a pillowcase-type cover, slipped it over foam and stitched the end closed. I made two “butt pillows” so that when one gets squashed from a lot of use, I replace it with the second and let the squashed one plump back up. My first ‘prototype’ was for a trip to Alaska. I had folded over some fabric alongside the length of the 17-inch foam and drew cord through it. I slung it  on my shoulder and had it ready to put on a bus seat, train seat, or wheelchair seat. I had made that one with only two layers foam, but he likes the 3-layer foam pillow better! For back comfort, we have a piece of foam 15 inches by 21 inches and 1 inch thick, which is slipped inside a pillowcase and used behind Marty’s back when he travels.”
“Butt” pillow

Pillow foam

Finished pillow 1

Finished pillows, upper and lower

Finished pillow 2

Sweet doggie not included!!!