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From time to time we will post studies that are being conducted to benefit cancer patients and caregivers. Here’s the latest…

The University of Wisconsin – Madison Center for Health Enhancement System Studies would like to know if those who are facing non small cell lung cancer (either personally or with a loved one) would be interested in joining a study funded by the National Cancer Institute to see if providing information and support improves quality of life and survival time. This study is currently only available at a few hospitals but we will be opening up enrollment soon.

 Please call 1-800-361-5481 to learn more about this study.

Thank you for letting them know of your interest.

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We’re starting a new feature on our blog with poetry written by cancer patients. Here’s the first one from Lynette.

Unfair

I have cancer, he does not

Until now forever one

Common life, we plan our future

With each other all the way

Cancer comes and draws a line

Separating him and me

 

I have cancer, he does not

All the focus goes on me

I’m the patient, he the carer

Doctors, scans, reports and treatment

All about my precious health

No-one asking how he is

 

I have cancer, he does not

He’s supportive, loving, patient

But it’s thrust now in our faces

That which couples always know

But they never want to look at

Death will surely part our ways

 

I have cancer, he does not

Not for us the sweet forgetting,

of the imminence of death

Every joy and love in this life

Now accompanied by this -

One day it will be no more

 

I have cancer, he does not

Feelings now are sharp as knives

Deeper love means deeper wounding

As I cherish every moment

Every look and voice and gesture

All unutterably dear

 ———

Lynette was diagnosed with ovarian cancer in August 08, at the age of 64. She had an operation and went on chemo for 6 months. It recurred in November 2010, and she is now going through her second lot of chemo. The poetry has been written since her recurrence, and the mylifeline site has been a great chance to share it with friends and family.

If you would like to submit a poem for our blog, please email blog@mylifeline.org with your poem and a short bio.

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National Conference on Work & Cancer logo

Less than two weeks away, register today!

This FREE conference will explore the complexities working people face as they try to balance their cancer treatment and recovery with employment. Space is limited so register today. This event is for both healthcare providers and survivors.  Topics will include:

Job Search Health Insurance & Legal
Medical Issues Working During Treatment
Self Employed Job Re-entry
   
WITH a Keynote by Sonia Kashuk, Creator Sonia Kashuk Beauty, Breast Cancer Survivor
AND a Special Session for Young Adults With Cancer

For details on sessions and speakers, please visit: www.cancerandcareers.org/conference. Five CEUs will be available for oncology nurses and social workers!

When/Where:

June 17th, 2011
Breakfast 8am, Conference 9am
Desmond Tutu Center – 180 Tenth Avenue (at 21st Street) – New York City (map it here)

For more information:

Email: cancerandcareers@cew.org
Phone: 646-929-8032
If you would like flyers or postcards to circulate please contact us, we are happy to send to you!

Accreditation:

This continuing nursing education activity was approved by the Oncology Nursing Society, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation.

This program is approved by the National Association of Social Workers (Approval #886534115) for five continuing education contact hours.

Presenting Sponsor: Gold Sponsors: Silver Sponsor:
Eisai Logo  Genentech logo

  Novartis logo
  Tweezerman logo
 

 

Can’t make it to the Conference?

Join us for one of our upcoming Ask The Experts teleconferences to ask questions and get answers from a career coach and a legal expert. For more info: http://www.cancerandcareers.org/en/community/events/ask-the-experts

MyLifeLine.org is proud to be a community partner on this very educationcal conference. If you plan on attending, let us know so we can follow up with you after the conference to hear your experiences from the conference.

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MyLifeLine.org Connections May 2011

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By Marcia Donziger, our Founder and Executive Director

I was 27 and thought I had a bladder infection.  Turned out to be a tumor on my right ovary. 

At first, my gynecologist was not concerned. 

“Could it be cancer?” I worried. 

“No”, she replied, “You’re too young to have cancer.”

I was married and trying to get pregnant at the time, so I scheduled surgery immediately to get it over with.  The doctor assured me the worst that could happen is I’d lose one ovary, and still be able to have children.  She was confident the tumor was benign.

On surgery day, I was wheeled into the pre-op room.  That’s when the medical assistant approached me with a legal form to sign, agreeing to the potential of having a hysterectomy.  My doctor and I never discussed this.

Five hours later, the surgery was over, and I was in the recovery room.  My body thrashed around in pain, and I still felt knives stabbing throughout my stomach and back.

That’s when my doctor broke the news. “I’m sorry, but you have Ovarian Cancer.  We had to do a complete Hysterectomy.”

Through the pain, I heard, “You have cancer.  You can’t have children.” 

The irony was that my doctor was six months pregnant.  Her belly at my eye level felt like multiple stabs in the heart.

Stage 3c Ovarian Cancer spread throughout my abdomen.  Infertility.  Followed by a bowel obstruction.  And six months of chemotherapy. 

One of things I struggled with most was keeping friends and family up-to-date with what was going on.  I felt the daily burden of not communicating effectively with those I loved who were so concerned. 

In 2007, I founded MyLifeLine.org to help all cancer patients and caregivers easily communicate with friends and family during the treatment process.  MyLifeLine.org Cancer Foundation believes a strong support community is critical for cancer patients.  We provide free, personal websites to cancer patients and caregivers to easily connect with family and friends, because no patient should ever feel alone. Learn more at www.mylifeline.org.

I would love to hear how an experience you’ve had with cancer inspired you to do something in the fight against cancer. Please share your comments.

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Today we announce the first version of the mobile optimized website. If you have a smart phone, you can view some of the main features from your phone. With a mobile optimized version, we hope that patients and caregivers can access thier website on the go and make updates even if they don’t have access to a computer.

My Updates: Patients and Caregivers can add new My Updates and friends and family can view and comment on the udpates.

Guest Messages: Friends and family can leave inspiring messages  and the patient can read all the loving messages without having to get on their computer to catch up.

Helping Calendar: Patients and caregivers can add and edit events on the Helping Calendar. As well, as friends and family can sign up to help.

Photo Gallery: The photo gallery is viewable from a smartphone, but with this version, you won’t be able to upload a photo directly to the photo gallery.

 See below for a few screen shots from the mobile version. Tell someone you know with cancer about MyLifeLine.org today.

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MyLifeLine.org is pleased to partner with Cancer and Careers on the first ever National Conference on Work & Cancer

Friday, June 17th, 2011 in New York City

This FREE conference will explore the complexities working people face as they try to balance their cancer treatment and recovery with employment. Topics will include Job Search, Legal Issues, Health Insurance, Working During Treatment, and more. CEUs will be available for oncology nurses and social workers!

For more details or to register, please visit:

 http://www.cancerandcareers.org/conference

 

_________________

MyLifeLine.org is also pleased to partner with the Cancer Legal Resource Center on the 2011 Cancer Rights Conference

 Friday, June 24, 2011 in Chicago, IL

This free event will provide patients, survivors, caregivers, advocates, navigators, and healthcare professionals with valuable information about cancer-related legal issues, including: employment & taking time off work, health, disability and life insurance options, access to health care, insurance navigation and appeals, understanding health care reform, cancer community resources, genetics & the law, legislative advocacy, and education rights of children and young adults with cancer. Don’t miss out on this free event!

To learn more about the Conference and to register today, visit:

http://www.CancerRightsConference.org

 

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If you have or know someone with Stage III/Stage IV Metastatic Melanoma or Stage III/Stage IV Renal Cell Carcinoma keep reading!

MJRC is in the process of interviewing patients with Stage III and Stage IV Metastatic Melanoma and Stage III and Stage IV Renal Cell Carcinoma on behalf of a client in the pharmaceutical industry.   

  • The goal of the study is to understand how patients learn about their treatment options and what factors influence them to choose the treatment options that are right for them.
  • MJRC is inviting patients to take part in a 30-45 minute telephone interview (depending upon the length of their answers) that will incorporate the use of the internet to view images in real time. Participants will not need to download any software, nor will they enter any information about themselves.)
  • Participants will need to be in front of a computer with an active internet connection AND have access to a (preferably) wired telephone.(versus cell phone) to take part in the research.  For these reasons, we prefer that patients not be in a treatment facility.
  • In consideration of their time, each patient will receive a payment of $100. This is on a first come first serve basis. MJRC also has eligibility requirements for the study, so contact them to see if you qualify. The study is only open for two weeks, so respond as soon as possible.  
  •  The research, being done among Cancer patients across the country, will gather opinions and insights about the process of selecting a treatment.
  • This research is not being done for the purpose of selling anything to the people interviewed.  There will be no selling, no follow-up calls, or mailed offers, as a result of participating in the research.
  • Interviews will be scheduled with patients, at your convenience, once you send your contact information to the attention of Matt Roberts at the following address: mjrc_research_project@yahoo.com. Be sure to let them know you heard about the study from MyLifeLine.org. Please cc support@mylifeline.org on the email as well.  
  • All contact information, as well as all personal information, will be kept strictly confidential and will not be shared with either the study sponsor or the public.  The anonymity of each MyLifeline.org patient will be strictly maintained at all times.

If you have any questions about the study, email mjrc_research_project@yahoo.com

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Check out this great spotlight about  MyLifeLine.org at  onclive.com . The article has a great overview of our history, features, initiatives and impact!

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This post is from Guest Blogger Taylor Dardan, you can reach him at dailydardan at gmail.com

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In recent years, there has been an increasing swing in the use of alternate and natural forms of cancer treatments, as opposed to the use of chemotherapy. This brings up a rather time old comparison of the traditional vs. alternative formats, in regards to treatment.  While chemotherapy has a proven track record in being successful, some holistic treatment has recently been proven successful, specifically with a few notable mesothelioma patients. 

Although chemo is often sometimes viewed in a negative light from outsiders, survivors of the treatment are often steadfast in their support of it. For the most part, it has a proven track record of helping many people survive cancer. Chemotherapy also provides some options wherein patients’ dosage can be altered for the desired effect, as well as usually being an outpatient procedure. It can also be applied in a number of different fashions, including creams, pills, and infusion.  Chemo is also flexible in the way that it can be used as a complimentary type of treatment.

As mentioned earlier, there have been some recent examples of the use of natural treatment in a rather positive light, specifically as complementary treatment through the use of supplements, herbs, rest, and a nutritious diet. This includes the consumption of organic fruits, vegetables, and natural juices.  The necessity and importance of a positive mental state within the approach is also important.  There are some excellent stories of survival with this type of treatment.

One great example of the natural treatment path working well is with mesothelioma survivor Paul Kraus. Kraus was diagnosed with this disease in 1997 and is still surviving today. This is a type of cancer in the lungs that has extremely severe life expectancy of a year and it’s also known for being a major litigation topic, as mesothelioma lawsuits have given a number of patient’s resources to pay their hospital bills. Paul Kraus used an alternative and complementary treatment strategy such as mediation, a daily vitamin regimen, nutrition, and spirituality as his driving forces to survive.

Chemo has a good track record of destroying harmful cells and diminishing tumors, while a holistic approach has been adopted by many as a complementary form of treatment. While these are usually two separate schools of opinion, there are certainly doctors and patients that are fusing traditional chemotherapy with some parts of the holistic approach, especially in the use of supplements in helping combat the side effects of chemo.

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