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Thursday, March 28, 2013

Mesothelioma Treatment Facilities: How We Match Patients with Doctors

One of my greatest goals is to enable all people diagnosed with cancer to find the best team and treatment for their cancer.  There are many fantastic doctors out there; not every one of them is right for every patient.  Furthermore, not every therapy is right for every patient; we are all individuals with individual bodies, cancers, circumstances and needs.  The following is a guest post by the Mesothelioma Center, who seems to share a common goal. 


At The Mesothelioma Center, one of the most important things we do is match our patients with a mesothelioma specialist. But we don’t just randomly pair people with any health care professional. Our patient advocates consider multiple personal and diagnosis-related factors to make sure patients are getting the best care for their individual case.

Facility Factors – First and foremost, our Medical Outreach Director visits each facility to learn about how they operate. We ask questions like:  

·         What technology do they have?

·         Do they have a designated asbestos-related disease department?

·         What about an integrated care team with nutritionists, counselors and rehabilitation specialists?

·         What does the facility do to set itself apart from other centers?

Once we know the ins and outs of how each facility works with its patients, we can make personalized recommendations that we feel comfortable standing behind.

Doctor Specialties – Even if the facility is nationally recognized for mesothelioma care, they may not have a doctor who specializes in each subtype of the disease. For instance, some centers have pleural mesothelioma specialists, but not peritoneal mesothelioma specialists.

We know how important it is for people to work with a confident, experienced doctor. That’s why our advocates make sure to match patients with surgeons and oncologists who know who to best treat their specific diagnosis. 

Patient’s Diagnosis – On a similar note, we consider a wide range of variables related to the patient’s diagnosis. We try to match patients based on the stage and location of their cancer, the tumor cell subtype, and their overall health. Some treatment centers specialize in early stage mesothelioma, while others specialize in certain subtypes of the cancer. Some patients may like to know how to improve their prognosis after their diagnosis. Our goal is to help patients get the most individualized care for their unique situation.

Patient’s Preferences and Resources – We know that the best doctor for a patient may not be in their city – or even their state. But we also know that most patients can’t simply uproot themselves from their families and daily responsibilities to travel across the country for medical care. That’s why we match patients with doctors that are as close to their geographical region as possible. We also help arrange travel services and grants (often on a free or reduced fare) for patients who do need to commute to their specialist.

We also understand that patients may not wish to use conventional medicine or current practices. That’s why we also match patients with clinical trials and offer information on complementary and alternative medicine (CAM). The clinical trials provide access to innovative, not-yet-available treatments that researchers hope will be the next big thing in mesothelioma treatment. And CAM therapies can offer relief for patients whether they elect traditional treatment or take an all-natural approach. Each patient has their own path, and we do our best to support them along the way.

Author bio: Faith Franz has spent two years researching and writing for The Mesothelioma Center. As an advocate for alternative medicine, she encourages patients to explore all of the treatment options that could potentially save their life.

Elyn

~~If you don’t know your options, you don’t have any~~

Elyn Jacobs is a breast cancer survivor, professional cancer coach, radio talk show host, speaker, and the Executive Director for the Emerald Heart Cancer Foundation. She is also on the peer review board of the Natural Standard Database. Elyn empowers women to choose the path for treatment that best fits their own individual needs. She mentors women who are coping with issues of well-being associated with breast cancer and its aftermath; she is passionate about helping others move forward into a life of health and wellbeing. Elyn has been featured on CNN Money, Talk About Health and more and has contributed to Breast Cancer Answers as well as written for the Pink Paper, Breast Cancer Wellness, Natural Healing-Natural Wellness, Integrative Oncology Essentials, and other publications and newsletters. Elyn lives in New York with her husband and two young boys.

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Wednesday, March 27, 2013

My Parent Has Cancer: Why Write a Book?


The following is a conversation with Marc and Maya Silver, authors of My Parent Has Cancer and It Really Sucks, the first guide for teens whose parents have cancer. Maya was 15 when her mom, Marsha, was diagnosed with triple-negative breast cancer. Marc, Maya’s dad, is an editor at National Geographic and the author of Breast Cancer Husband. His wife, Marsha, is now in good health.  

Marc and Maya, what inspired you to write this book?

Marc: I wish I could say the book came to be because I had an epiphany: Families like ours – two teens, mom diagnosed with breast cancer – need help.

But that is not the truth. In 2001, our family muddled through Marsha’s months of cancer treatment. It never occurred to any of us that our kids might need help coping.

Then, a few years later, our dear friend Anna Gottlieb, the founder and director of Gilda’s Club Seattle, called me to share some essays from the group’s annual essay contest: “It’s Always Something.” Teens are invited to write about how they’ve been “touched by cancer.” Many of them wrote about a parent’s cancer with intense feelings that defy the stereotype of the sullen, uncommunicative teen.

“This has to be your next book,” Anna said.

 She was right. But it took a bit of doing. I soon realized that I needed a co-author who had in fact faced a parent’s cancer as a teen. Our older daughter Maya is a phenomenal writer -- creative writing was her major at Oberlin, where she earned the Diane Vreul's Fiction Prize in 2008.

 
Maya: I have to admit that at first I wasn't crazy about the idea. My mom's cancer is something I never fully dealt with. Even in my early 20s, it was a topic I didn't like talking about. Pouring myself into a book project about it would not only require me to confront the experience head-on, but to live, breathe and dream about cancer as we spent months in research, interviews, writing and editing. On the flip side, I knew that there was a gap in resources for teens dealing with a parent's cancer. I understood that a book like this probably would have helped my sister and me. 

 
Marc: So we began working together to shape a proposal. We realized that the book needed to reach out to teens, but we also knew that parents would probably be the ones to buy the book. So the main narrative would be aimed at teens, but there would be a special section of advice for poor, beleaguered mom and dad.

Many publishers passed on the idea. They didn’t “get it.” Is this a health book? A young adult book? What kind of book is it?

 Maya: Our answer always was: It’s a book that is sorely needed. A study published in the journal Cancer states that nearly three million U.S. kids live with a parent who’s a cancer survivor, and about a third of the kids are teens. Yet there are very few resources for this 12-19 demographic. As we found out when we put together our proposal, teens in particular need a lot of help coping. They’re at a stage when they’re separating from the family, striking out on their own. Suddenly, mom or dad’s cancer diagnosis pulls them back to the family. The result: A teen who may be resentful, who may hate being looked at with “pity eyes” by friends at school, who has to deal with problems far more pressing than those of friends who worry about break-ups and break-outs and buying the latest video game.

 
Marc: Fortunately, our agent was a tireless advocate for the book, and the editorial staff at Sourcebooks understood why this book is an important addition to cancer literature. And so we began our year of intense work on the project, interviewing some 100 teens, parents as well, and many mental health experts. We hope the book can serve as a support group for teens who don’t have anyone to turn to. We want teens to know that what they’re feeling is probably normal. It’s normal to worry still about who’s going to drive you to the prom. It’s normal to be embarrassed by a parent who’s bald from chemotherapy. It’s normal to have a closer relationship with one parent than the other, and to secretly wish that the other parent was the one with cancer.

 Maya: We set two rules for our book: Teens, don’t feel guilty. You have your own way of coping, and you don’t have to behave like any other teen in this book.

And parents, do not use the book to make your teen talk if he or she doesn’t want to. 

 Marc: And we think Bailee Richardson, who was 12 when her mom was diagnosed with cancer, says it all when she shared this advice: “Stay strong. Don’t let it ever get the best of you.”

Maya, you are right, this is a book sorely needed.  Being a teen is hard enough; being a teen whose world is rocked by cancer, well that is a whole other ballgame.  We all know how hard it is to be a caregiver, and we certainly know how hard it is to be a patient, but we just don’t know or appreciate just how hard our own diagnosis on our teens (think communication, expression, social woes, and hormones). I often worry about the emotional side, the temporary and lasting physical tolls that are really somewhat unknown.  Thank you both for this guide and for sharing it with us.

To read more about their journey, please visit My Parent Has Cancer and it Really Sucks

Elyn
www.elynjacobs.wordpress.com

~~If you don’t know your options, you don’t have any~~

Elyn Jacobs is a breast cancer survivor, professional cancer coach, radio talk show host, speaker, and the Executive Director for the Emerald Heart Cancer Foundation. She is also on the peer review board of the Natural Standard Database. Elyn empowers women to choose the path for treatment that best fits their own individual needs. She mentors women who are coping with issues of well-being associated with breast cancer and its aftermath; she is passionate about helping others move forward into a life of health and wellbeing. Elyn has been featured on CNN Money, Talk About Health and more and has contributed to Breast Cancer Answers as well as written for the Pink Paper, Breast Cancer Wellness, Natural Healing-Natural Wellness, Integrative Oncology Essentials, and other publications and newsletters. Elyn lives in New York with her husband and two young boys.

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Friday, March 8, 2013

Magical Mushrooms; the Sequel


Perhaps you have Read my post on Magical Mushrooms: How they Reduce Breast Cancer Risk.  Here is some more fun mushroom wisdom.

Coriolus mushrooms are actually the source of PSK, a compound used in drugs used to treat a wide variety of cancers.  PSK seems to work in multiple steps of the malignant process by inhibiting adhesion, invasion, motility and metastatic growth of tumor cells in animal models of cancer.  Also called Turkey Tail, Coriolus PSP (supplement form that differs slightly from the drug PSK) offers significant immune support.  In fact, the “cold remedy” suggested by my oncologist is to take Coriolus PSP, oregano oil, chaga and grapefruit seed extract (all in supplement form) for three days.  I wouldn’t take oregano oil for too long or too often as it is estrogenic properties, but as part of a quick cold remedy, it works well. 

Via Mark Kaylor, Mushroom Wisdom:

“In many parts of the world, Turkey Tail extracts are used as adjuvants in cancer therapy, both as prescription items for instance in Japan, or as dietary supplements taken by patients along with conventional treatment …As a cancer-preventive agent used on a regular basis Turkey Tail may inhibit carcinogenesis by reducing the effects of some carcinogens, such as those occurring in tobacco smoke, on susceptible host cells; it has shown anti-tumor activity in many cancers (shortened for this post).

The use of these extracts during conventional cancer treatments, such as chemo and radiation therapy, have a rational basis because some research shows that it might reduce the possibility of secondary malignancies induced by radiotherapy and cytotoxic chemotherapy.  Turkey Tail may also protect healthy host cells during radiation and chemo treatments by either directly or indirectly acting as an antioxidant, reducing the effects of oxidative stress.”

A note about medicinal mushrooms:  After 3-4 months using a single extract at a high does, a small number of people will experience a slight “tailing off” in terms of immune support.  Using two extracts simultaneously creates a far more powerful immune response than using any single extract alone.   (JHS Natural Products).  When using mushroom extracts for preventive immune support they can be used at a lower dose as compared to use for immune challenges, so the “tailing off” is not experienced.   The best choice over the long term may be to rotate between two different mushroom extracts, using one extract at a time, and then rotating to a different extract every six months.  Even though the “tailing off” is not experienced at lower doses, it may be best to keep coming at the immune system from different directions, changing up the protocol to keep it fresh.  That said, this is all a very individual choice and I have had good luck with using maitake and shitake first and then switching to chaga and shitake.  Recently I added in meshima too.   It is best to speak with your medical provider for advice on the best combination for your body. 

Nothing in this post represents medical advice, and I encourage you to discuss this information with your integrative oncologist or naturopathic doctor. I have compiled this information solely for those seeking information on medicinal mushrooms and their ability to support the body against cancer.   

For more mushroom wisdom:









Elyn


~~If you don’t know your options, you don’t have any~~

Elyn Jacobs is a breast cancer survivor, professional cancer coach, radio talk show host, speaker, and the Executive Director for the Emerald Heart Cancer Foundation. She is also on the peer review board of the Natural Standard Database. Elyn empowers women to choose the path for treatment that best fits their own individual needs. She mentors women who are coping with issues of well-being associated with breast cancer and its aftermath; she is passionate about helping others move forward into a life of health and wellbeing. Elyn has been featured on CNN Money, Talk About Health and more and has contributed to Breast Cancer Answers as well as written for the Pink Paper, Breast Cancer Wellness, Natural Healing-Natural Wellness, Integrative Oncology Essentials, and other publications and newsletters. Elyn lives in New York with her husband and two young boys.

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The Power of Hemp Seeds



In my post Chia Seed: The New Superfood, I spoke of the virtues of chia and flax seeds.  However, I really should have included hemp seeds, another fabulous super-food.  Hemp seeds are not only a complete protein (like flax), but they also contain Vitamin E, fiber, iron, zinc, carotene, and plenty of other vitamins and minerals; they also have a good balance of Omega fats and contain GLA, both of which help reduce inflammation.  Eating hemp may also boost the immune system.  One more thing…unlike flax and chia, hemp is not actually a seed (it’s a fruit) and does not contain phytic acid (that pesky anti-nutrient found in wheat, nuts, etc. that prevents us from absorbing minerals).  And no, for better or for worse, hemp seeds will not make you “high”.  Try them in cereal, smoothies and oatmeal; eat them in good health. 


Elyn


~~If you don’t know your options, you don’t have any~~

Elyn Jacobs is a breast cancer survivor, professional cancer coach, radio talk show host, speaker, and the Executive Director for the Emerald Heart Cancer Foundation. She is also on the peer review board of the Natural Standard Database. Elyn empowers women to choose the path for treatment that best fits their own individual needs. She mentors women who are coping with issues of well-being associated with breast cancer and its aftermath; she is passionate about helping others move forward into a life of health and wellbeing. Elyn has been featured on CNN Money, Talk About Health and more and has contributed to Breast Cancer Answers as well as written for the Pink Paper, Breast Cancer Wellness, Natural Healing-Natural Wellness, Integrative Oncology Essentials, and other publications and newsletters. Elyn lives in New York with her husband and two young boys.

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