Mesothelioma: Information & Resources

Malignant mesothelioma (sometimes referred to as “mesothelioma” or simply “meso”) is an aggressive form of cancer that affects tens of thousands of people worldwide. Generally associated with long-term exposure to materials that contain asbestos, mesothelioma can grow and spread with alarming speed, which is why early diagnosis is so crucial to a good prognosis. However, the time from initial asbestos exposure to the time of becoming symptomatic is often extremely long—sometimes, the latency period lasts for several decades before someone with mesothelioma begins to feel ill. These factors combine to present clinicians and patients alike with a major dilemma.

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Malignant mesothelioma (all sites): Number of deaths, crude and age-adjusted death rates, U.S. residents age 15 and over, 1999–2010

Types of mesothelioma

Mesothelioma typically affects the linings of the heart, lungs, abdominal cavity, and in rarer cases, the reproductive organs.

Pericardial mesothelioma

One of the more rare mesothelioma types, pericardial mesothelioma affects the lining of the heart. The most popular treatment option for this form of mesothelioma is surgery to remove the cancer and sometimes, the lining of the heart itself.

Peritoneal mesothelioma

One of the more common mesothelioma types, peritoneal mesothelioma affects the lining of the abdominal cavity. It is thought to be caused by swallowing of asbestos or asbestos-like fibers, and popular treatment options include surgical tumor excision, radiation therapy, and chemotherapy.

Pleural mesothelioma

The most common form of mesothelioma affects the lining of the lungs. This form of mesothelioma is typically associated with inhalation of carcinogenic fibers, often on a daily basis over a long period of time (such as while working with asbestos insulation). Treatment options for pleural mesothelioma are varied and depend upon the stage of the cancer at the time of diagnosis.

Testicular mesothelioma

Testicular mesothelioma is extremely rare, with fewer than 100 people across the globe reported as having the diagnosis. The most common method of treatment for mesothelioma of the lining of the testes is surgical removal of the testis affected by the tumor.

Treatment options

There are a variety of treatment options available for people who are diagnosed with malignant mesothelioma, depending on the location and stage of their cancer. Treatments may be curative—that is, intended to remove the cancer and send the patient into remission—or they may be palliative—that is, intended to ease the pain or discomfort experienced by the patient in order to restore quality of life.

Curative treatments

Radiation therapy, surgical treatment, and chemotherapy are often used as potentially curative treatments, with the hopes of removing most or all of the cancerous tissue from the body, either by physically removing it as in surgery, or by delivering cancer-killing radiation or chemo treatment to the tumor. Curative treatments have the best prognosis when the cancer is still localized and has not spread to distant organs in the body.

Palliative treatments

For individuals whose mesothelioma is at a later stage by the time of diagnosis, curative options may be extremely limited. These people still have options, though, to help them reclaim quality of life while living with mesothelioma. For example, surgery to drain excess fluid in the lungs due to pleural mesothelioma may be conducted to make a patient’s breathing easier, and pain medications may also be prescribed to reduce the pain caused by the growth and spread of the cancer. More information at http://mesothelioma.net.

A Leadership Conversation with Dr. Marty Tenenbaum and Dr. Josh LaBaer

AZBio-DorothyFoundation

March 19th, 2015 11:00 AM – 1:00 PM at Phoenix Country Club

Join AZBio and Members of Arizona’s Healthcare and Life Science Community for

Big Questions – Big Data – Big Science:

A Leadership Conversation with Dr. Marty Tenenbaum,

founder of Cancer Commons and

Dr. Josh LaBaer  of the Biodesign Institute  at ASU

It’s been said time and again that when it comes to science and research, Arizona’s pioneering spirit and youthful energy, makes it a perfect place for collaboration.

With the advance of big data, open science, crowdsourcing and the like, do we have the right people, ideas, tools, resources and motivation to accelerate cures and

bring solutions to people? What’s stopping us now?

Two ‘big idea guys’ will join us on March 19th to share their experiences, their successes – and yes, their failures.

When:  Thursday, March 19, 2015

11:00 AM –  Registrations and Networking

11:30 AM – 1:00  PM – Program and Lunch

Where:  Phoenix Country Club

Tickets:  $75 for Members*, $100 for Non Members, $750 for a table of  10    REGISTER

Elected Leaders and the Media receive complimentary registration to this educational event.

* Member pricing is extended to  Members of AZBio, the Arizona Technology Council, and the Arizona Hospital and Healthcare Association.

Every year 1.6 million Americans are diagnosed with cancer and nearly half of those cases are considered incurable. But many of those “incurable” cases may be beatable by exploiting biological features unique to each individual’s cancer. Join us as we explore the  convergence of recent developments in genomics, big data informatics, social networks, and personalized medicine that is transforming the landscape of cancer research and treatment. In this new paradigm, cancer is managed as a chronic disease using an evolving cocktail of targeted- and immunotherapies individualized for each patient, much like HIV. Every treatment event is considered as a probe that  simultaneously treats the patient and provides an opportunity to validate and refine the models on which the treatment decisions are based.

Cancer: The Emperor of all Maladies

Cancer Video Picture

Movie Premiers on PBS on March 30th, 2015

Cancer: The Emperor of all Maladies

The Emperor of All Maladies by Siddhartha Mukherjee and winner of the Pulitzer Prize, and now a documentary from Ken Burns on PBS. The book  is a magnificent, profoundly humane “biography” of cancer—from its first documented appearances thousands of years ago through the epic battles in the twentieth century to cure, control, and conquer it to a radical new understanding of its essence. Spurred by a personal tragedy, America’s foremost documentarian is tackling cancer. According to the Associated Press, Burns collaborated with Dr. Mukherjee to bring the historical work to PBS in spring 2015.
Stand Up to Cancer co-founder and legendary film producer Laura Ziskin envision creating a documentary about cancer for years. In 2010 she came across The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee. From the first time she laid eyes on the book, Laura knew it should be the basis of the documentary she still wanted to make. She was the driving force behind the film’s production and her spirit is very much part of the completed product.

 

Don’t Ask, Do Tell!

Stand Up 2 Cancer Caregiver tip.  

After a cancer diagnosis family and friends frequently feel powerless to help. It is difficult to know how to provide support to your loved one, especially when you may feel like you don’t know what to do or where to start. Stand Up 2 Cancer shares the suggestion that it may be helpful to make a list of things that you think you can do, based on your own availability and skills. Then you can reach out to your loved one with these suggestions. It can include providing rides, running errands, or bringing a book to read or music to listen to.  More suggestions can be found at http://showthatyoucare.org/index.php/dont-ask-do-tell and the list below:

Don’t Ask, Do Tell | Show That You Care

  • Make appointments
  • Save important doctor and clinic numbers to your loved one’s cellphone / make a notebook with numbers for the patient, caregivers and family members to use.
  • Go to appointments with themDon't Ask, Do Tell
  • Prepare a chemo care kit:
    • Bottled water
    • Sweaters, blankets, socks, layers, things to keep warm
    • A list of current medications
    • A cooler with ice, popsicles—or just bottled water (helps prevent mouth sores)
    • Sugarless candy
    • Chapstick
    • Toothbrush
    • V-neck or button up shirt for access to port (cotton)
    • Mad Libs, crosswords, trivia games, things to pass the time
    • Books, magazines, tablets
    • A selection of items that currently smell good to your loved one such as essential oil
  • Grocery shopping
  • Cook or arrange meal drop offs
    • Set up an online calendar for friends and family to sign up for meal deliveries
    • Adjust meal requests overtime as you better understand when meals are most needed
    • Remember that the sense of taste often changes during treatment. Friends delivering meals are always happy to hear what foods will be most appreciated
    • Request that food is delivered in dishes that do not require washing and returning
  • Write the thank you notes so your loved one does not have to
  • Babysitting
  • Arrange play dates or offer rides for children
  • Pet care (feed, walk, bathe, bring them to the vet)
  • House cleaning and maintenance
    • Consider arranging house cleaning while a loved one is at treatment
    • Create volunteer calendar for household and yard chores, putting out the trash for collection, etc.
    • Gather funds from friends and families to hire a cleaning service
    • Have friends and family wash and return folded laundry
    • Help with seasonal house maintenance like cleaning gutters, raking leaves, cutting grass.
  • Research support groups
  • Attend a support group
  • Pick up prescriptions
  • Take cars to fill up the gas tank or for maintenance

 

Cauldron of Love has been released!

Front Cover

After two years, thirty contributors, artwork, one trailer, edits, proof reading and more, Writers Unite to Fight Cancer is proud to announce that Cauldron of Love our WUFC Cookbook is available! The full color coil-bound version with 190 recipes $24.95. Break bread with us and celebrate life.

Buy Your Copy Today! 




List of Contributors: Anna Arnett, Anna del C Dye, Brenda Novak, Bridgette Crosby, Caroline Porter, Cheree Alsop, Connie Sokol, David Calvert, David Lee Summers, Donna Dustin, Doreen Bloomer, Emily Larsen, Jadi, Karly Blair, Kebba Button Buckley, Kerry Blair, Lisa Finder, Liz Adair, Louise Laughlin, Margaret Larsen Turley, Marilyn Hartness, Marina Martindale, Morgan Vanessa Harbinger, Ora Smith, Penny Freeman, Sarah M. Eden, Serena Freewomyn, Shari McClaws,Vanessa Joy.

Cauldron of Love features eighteen categories with  international family favorites, remedies, delicious gluten free and dairy free cuisine, comfort food for patients battling cancer and other tantalizing morsels.

100% of the profits from cookbook sales will be donated to Cancer Research.

Email  or call Margaret for other payment options at: writersunitetofightcancer@gmail.com / 480-586-7902.

NBTS Tulips Against Tumors

Tulips_EmailHeader_2013National Brain Tumor Society partners with EcoTulips once again for this year’s Tulips Against Tumors program. Each bulb planted will honor all those who have been affected by a brain tumor, and help raise awareness and critical funds for promising research across the United States. 50% of the funds raised through these EcoTulips bulb orders go directly to support the work of the National Brain Tumor Society.

Hysterectomy Procedure May Spread Undetected Cancer!

leiomyosarcoma

http://aftercervicalcancer.blogspot.com/2012_09_01_archive.html

Women who have hysterectomies for non-cancerous reasons my end up with leiomyosarcoma (LMS) and die within 2 – 3  years after their procedure.  On April 17th, 2014 the FDA issued a warning to health providers stating: “When used for hysterectomy or myomectomy in women with uterine fibroids, laparoscopic power morcellation poses a risk of spreading unsuspected cancerous tissue, notably uterine sarcomas, beyond the uterus.”

Power morcellators are medical devices used during various laparoscopic surgeries, such as hysterectomies and myomectomies, that aggressively cut uterine tissue into small pieces. This permits the tissue to be removed through a small incision site, with proposed benefits that include: shorter recovery periods, and fewer complications. However according to the Society of Gynecologic Oncology (SGO) power morcellation or other techniques that cut up the uterus in the abdomen have the potential to disseminate an otherwise contained malignancy throughout the abdominal cavity. For this reason, the SGO asserts that it is generally contraindicated in the presence of documented or highly suspected malignancy, and may be inadvisable in premalignant conditions or risk-reducing surgery.

The American Recall Center gives the following statistics:

  • Hysterectomy is the 2nd most common surgery among women in the United States
  • By age 70, one out of three American women will have had a hysterectomy
  • 90% of these surgeries are done to remove Fibroids (non-cancerous tumors found in the uterus)
  • The average life span following accidental morcellation of sarcoma is only 24-36 months
  • Only 15% of women who have leiomyosarcoma (LMS) that has spread (stage 4) will be alive after 5 years
  • Women with sarcoma who are morcellated are about 4 times more likely to die from sarcoma than if they had not been morcellated.

Some women undergoing Laparoscopic Supracervical Hysterectomy, Robotic Hysterectomy,  or Laparoscopic Myomectomy (Uterine Fibroid Removal) procedures may actually have undiagnosed sarcoma, which doctors are unable to detect prior to the uterine fibroid surgery. A potential side effect of morcellation for these women, which has not been adequately disclosed, is the risk that the morcellator may cause the spread of cancerous tissue throughout the abdomen and pelvis.

Three things women can do to prevent spread of LMS.

  1. Ask your health care provider to discuss all the options available to treat your condition and discuss the risks and benefits of each.
  2. If laparoscopic hysterectomy or myomectomy is recommended, ask your health care provider if power morcellation will be performed during your procedure. Ask if an abdominal or vaginal hysterectomy would be a safer option for you.
  3. If you have already undergone a hysterectomy or myomectomy for fibroids, tissue removed during the procedure is typically sent to pathology to be tested for the presence of cancer. If you were informed these tests were normal and you have no symptoms, routine follow-up with your physician is recommended. Patients with persistent or recurrent symptoms or questions should consult their health care provider.

Brain Tumor Awareness Month

BrainTumorAwarenessMonthToday nearly 700,000 people in the United States are living with a primary brain tumor, and more than 69,000 others will be diagnosed this year. Brain tumors are often deadly, impact quality of life, and change everything for patients and their loved ones.

My daughter is currently battling her second brain tumor.  After completing six weeks of radiation followed by a year of Temodar (oral chemotherapy most effective for brain tumors) her MRI showed a new brain tumor developed in addition to the original tumor only being reduced by 50%. She is a warrior and is determined to win the war against this invasion of her body that causes frightening seizures and periods of disorientation with memory loss. She is a very intelligent young woman in her early thirties. It was devastating to see her reduced to an infantile state, not knowing how to do basic daily activities. With excellent care from a neuro-surgeon, naturopathic oncologist, neuro-oncologist, epileptologist, neuro-radiologist, speech therapist, counselor and support groups plus other medical team members, family and numerous friends she was able to regain her memory and speech.

Treatment for the new tumor so far includes an intense radiation called stereotactic radiosurgery, a surgically implanted central venous port for the administration of intravenous chemotherapy, and she receives IV Avastin every two weeks. When she was first diagnosed she had no insurance. After several months she qualified for the PCIP, Pre-existing Condition Insurance Plan . Now she has insurance coverage through her spouse’s employer. Thanks to a multitude of people who have held fundraisers, others who have given monetary and service donations  and frugal habits have prevented my daughter from experience bankruptcy so far. Ongoing labs, diagnostic procedures, medications and treatment continue to accumulate costs such as travel to and from appointments, co-pays, deductibles and multiple items not covered by insurance.

All brain tumor patients face the same challenges. Not all have necessary resources. It is important to  increase public awareness of the need for improved treatment, better quality of life and access to care.

Please consider donating to one of the following brain tumor research, education and / or service organizations during May – Brain Tumor Awareness Month:

American Brain Tumor Association

Children’s Brain Tumor Foundation

National Brain Tumor Society

 

 

American Brain Tumor Association – Real Progress, Real Hope

ABTAlogoForty years ago, a national organization committed to funding brain tumor research and improving brain tumor care was a bold notion. Back then, there was little promise or hope for those diagnosed with a brain tumor. Today, thanks to the generosity of a generation of supporters like you, we are seeing real progress and experiencing real hope in our efforts to advance the understanding and treatment of brain tumors. Your gift today will allow us to continue this momentum. [Read more…]

May is National Brain Tumor Month

factsaboutbtinusThis year, nearly 70,000 new, primary brain tumor diagnoses will be made in the U.S. alone. My daughter is one of this number. Your support of the National Brain Tumor Society will drive cutting edge research and bring us closer to a cure.

At the American Association for Cancer Research’s (AACR) Annual Meeting in Washington, D.C.  on April 6 through 10, 2013, Dr. Markus D. Siegelin, M.D. was named the 2013 recipient of the AACR-National Brain Tumor Society Career Development Award for Translational Brain Tumor Research.

Blog readers can contribute to toward finding the cure by:

Donating to the National Brain Tumor Society,

or participating in various NBTS fundraising events:

One can also volunteer with NBTS and or become an advocate.

By clicking the links below, you can visit NBTS financial and insurance information, view their expansive link library of brain tumor resources, find information about joining an online support community.

A brain tumor diagnosis can be scary and overwhelming. Connecting to others is an important way to find information, support, and hope. This section on brain tumor support groups includes information to help you and/or your loved one find the support you need to stay strong.