Monthly Archives: September 2011

What are symptoms of Lymphoma?

As September comes to a close, we have our last awareness blog. September is also Lymphoma awareness month, read on below for statistics, symptoms and resources.

 In 2011, approximately 66,300 people will be diagnosed with Non-Hodgkin Lymphoma (NHL) and about 19,300 will die from NHL (source).

 Symptoms of Non-Hodgkin Lymphoma:

  • Swollen lymph nodes
  • Chest pain
  • Unexplained weight loss
  • Recurring Fevers
  • Night sweats
  • Fatigue / Lack of energy
  • Rashes
  • Lower back pain
  • Sore lymph nodes after drinking (source)

In 2011, approximately 8,800 people will be diagnosed with Hodgkin Lymphoma and about 1,300 will die from Hodgkin Lymphoma (source).

Symptoms of Hodgkin’s Lymphoma:

  • A painless swelling in the lymph nodes in the neck, underarm, or groin
  • Unexplained recurrent fevers
  • Night sweats
  • Unexplained weight loss
  • Itchy skin (source)

Check out the resources below devoted to helping people with Lymphoma.

 Patients Against Lymphoma: Lymphomation http://www.lymphomation.org/index.html

“Our primary mission is to provide support and timely access to information on lymphoma and its treatments, helping patients and caregivers to become informed and active partners in their care.”

Lymphomation is laid out in very user friendly way to find exactly what you’re searching for.

 Lymphoma Research Foundation  http://www.lymphoma.org

Our Mission

The Lymphoma Research Foundation (LRF) is the nation’s largest non-profit organization devoted exclusively to funding innovative lymphoma research and providing people with lymphoma and healthcare professionals with up-to-date information about this type of cancer. LRF’s mission is to eradicate lymphoma and serve those touched by this disease.”

“LRF Programs and Services

LRF assists members of the lymphoma community by providing comprehensive, disease-specific programs and services to more than 35,000 people each year, including:

  • Clinical Trials Information Service
  • Disease-Specific Publications and Websites
  • In-person Workshops and Educational Forums
  • Lymphoma Helpline
  • Lymphoma Support Network
  • Online Resources, Teleconferences and Webcasts/Podcasts
  • Patient Aid Grants
  • Professional Education
  • Public Policy and Advocacy
  • Volunteer Chapter Network (source)

LymphomaInfo.net   http://www.lymphomainfo.net/info/org.html 

Lymphoma.net is a general information sight for patients looking for answers to general questions. Upon searching a topic Lymphoma.net will make recommendations for further resources. Lymphoma.net also has a community for patients, family and friends to blog and ask questions on forums to one another about lymphoma.

What are Symptoms of Leukemia?

September is also Leukemia Awareness Month. In 2011, approximately 44,600 people with diagnosed with some form of leukemia and approximately 21,000 will die from a form of leukemia (source). There are many forms of leukemia and they have different symptoms associated with them.

“For Acute Myeloid Leukemia and Acute Lymphocytic Leukemia, early symptoms of leukemia can include: 

  • Fever
  • Fatigue
  • Frequent infections
  • Painless lumps in the neck, underarm, stomach, or groin
  • Pain or feeling of fullness below the ribs
  • Paleness or pallor
  • Easy bleeding or bruising
  • Loss of appetite
  • Tiny red spots (called petechiae) under the skin
  • Bone or joint pain. “ Source

“Common symptoms of chronic leukemia include:

  • Feeling very tired
  • Weight loss for no known reason
  • Night sweats
  • Fever
  • Pain or a feeling of fullness below the ribs on the left side.” Source

Check out a few respected organizations that provide resources for leukemia  patients and caregivers:

Leukemia and Lymphoma Society  http://www.lls.org/

“The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families.

LLS is the world’s largest voluntary health agency dedicated to blood cancer. LLS funds lifesaving blood cancer research around the world and provides free information and support services.

Our Key Priorities will ensure that: The Leukemia & Lymphoma Society helps blood cancer patients live better, longer lives.http://www.lls.org/#/aboutlls/mission/

Check out their get information and support page.

Leukemia Research Foundation http://www.leukemia-research.org/

“Since 1946, the Leukemia Research Foundation has raised more than $48 million in pursuit of our goals: To conquer leukemia, lymphoma, and myelodysplastic syndromes while enriching the quality of life of those touched by these diseases. 

Our strategy to achieve these vitally important ambitions is to fund worldwide medical research into the causes and cures of blood cancers, provide patient financial assistance and offer educational/emotional support programs.” (Source)

Check out their patient information page.

How to do a Thyroid Self-Exam

Thyroid Cancer Awareness Month is in September as well. Approximately 48,000 people will be diagnosed with thyroid cancer in 2011, and about 1,700 will die from the disease (source).

Thyroid cancer is hard to detect. Most symptoms occur with thyroid nodules, but not all nodules are cancerous. Some symptoms that occur in thyroid nodules include the following (source):

            -Lump in the neck

            -Swollen Lymph nodes

            -Hoarse voice

            -Difficulty swallowing or breathing

            -Neck pain

            -Throat pain

Check out How to do a Thyroid Self -Exam from 15-40 Connection.

One of my favorite organizations to follow on twitter is http://dearthyroid.org/ ,you can follow them on twitter http://twitter.com/#!/dearthyroid

A few organizations to check out this month:

The American Thyroid Association www.thyroid.org

The ATA is the leading organization focused on thyroid biology and the prevention and treatment of thyroid disorders through excellence and innovation in research, clinical care, education, and public health. The ATA publishes news regularly that has recently been discovered that pertains to thyroid cancer. The ATAs’ website also contains information that is valuable for all patients concerning: patient support, on-going clinical trials, treatments and finding a specialist. Physicians and professionals are also strongly encouraged to get involved and the ATA provides several ways for everyone whether a physician, professional or patient to get involved to educate or become educated. 

Thyroid Cancer Survivors’ Association  www.thyca.org 

The Thyroid Cancer Survivor Association is a leading organization that contains valuable information for any person that has survived thyroid cancer or has been diagnosed with thyroid cancer. The Thyroid Cancer Survivor Association website contains: Support Services, information About Thyroid Cancer, How to Help, News and About ThyCa.

“This website has been created and is maintained by thyroid cancer survivors.  Since October 1995, we have been developing a network of services that link thyroid cancer survivors and health care professionals around the world.  Our mission is simple:

  • To Educate, so we and our families better understand our disease.
  • To Participate, so others learn from our experience.
  • To Communicate, so we and our health care professionals better understand each others’ needs.
  • To Support Research, for a future free of thyroid cancer. “

What are Symptoms of Prostate Cancer?

September is Prostate Cancer Awareness Month. About 241,000 men will be diagnosed with prostate cancer in 2011 and approximately 33,700 men will die from the disease (source).

Symptoms can include the following (source):

  • -Problems during urination.  Frequency , urgency, hesitancy, pain during urination, blood in the urine
  • -Difficult in penile erection, painful ejaculation or blood in the semen
  • -Pelvic discomfort
  • -Persistent pain in back and lower extremity bones and muscles in the back and hip region
  • -Swelling in the legs
  • -Swollen lymph glands

A well-known Prostate Cancer Organization is US Too International. Us Too is very informative and user friendly. Us Too provides numerous services such as: Getting Involved, Chapters and Support Groups, several ways to search out information about prostate cancer, several programs and services. “Us Too is a registered 501(c)(3) non-profit prostate cancer education and support network of 325 support group chapters worldwide, providing men and their families with free information, materials and peer-to-peer support so they can make informed choices on detection, treatment options and coping with ongoing survivorship. The organization was founded in 1990 by five men who had been treated for prostate cancer.” (http://www.ustoo.com/About_UsTOO.asp)

The mission of Us TOO is to help men and their families make informed decisions about prostate cancer detection and treatment through support, education and advocacy.

“In addition to providing education and support programs, Us TOO is an active advocate for patients. We are committed to making sure patients have access to the programs, medications, treatments and health care professionals they need for the best possible outcomes.” (http://www.ustoo.com/About_UsTOO.asp)

Us TOO Programs & Services include: Special Patient Education Resources, Support groups, Web based Communities, Newsletters, Newly Diagnosed Patient Resource Kits, Advocacy, Volunteer Opportunities, Awareness, a Toll Free Patient Support Line, and a Minority and Underserved Populations Outreach program.

Us Too Programs & Services also include:

John Moenck Memorial Resource Center: Resources related to the diagnosis, treatment and research of prostate cancer are available on loan from our headquarters. Books, video tapes, journals and other materials are available for viewing at no charge.

Circles of Love: This program is especially for companions and families of those with prostate cancer. The program provides resources such as books, brochures, web based resources and even inspirational music for companions and families struggling to support their loved one.

Another notable organization is the Prostate Conditions Education Council . They are dedicated to expanding awareness and education about prostate cancer; each September it coordinates and organizes activities across the USA to support Prostate Cancer Awareness Week.

“Our mission is to save lives through awareness and the education of men, the women in their lives as well as the medical community about the prevalence of prostate cancer, the importance of early detection, available treatment options and other men’s health issues. To conduct nationwide screenings for men and perform research that will help the detection and treatment of prostate cancer and other men’s health issues.”

Prostate Conditions Education Council is organized around educating the community of the risks of not getting checked early for prostate cancer. “Since PCAW was initiated in 1989, nearly 60% of new prostate cancer cases are discovered when they are still localized and potentially curable, indicating a dramatic increase in awareness among the general public about the importance of early detection.”

The PCEC also includes information to educate the patient about prostate cancer. This includes diagnoses, treatments and general information that is critical to the patients recently diagnosed with prostate cancer. Physician and Screening site information is also made available on the PCEC site along with programs and events.

Special Announcement from the Founder of MyLifeLine.org

MyLifeLine_Logo
Special Announcement from the
 
 Founder of MyLifeLine.org

_____________________________________________________

September 15, 2011 

Planning for the Future

Marcia photo
Marcia Donziger

In July 2005, my friend, Lori Arquilla Andersen, lost her battle with brain cancer at the age of 35.  During the prior two years of treatments, her friends – who owned a web company in Chicago – created a personal website for Lori and her husband, Erik, to easily connect with loved ones around the country to get the emotional support they needed. 

As a cancer survivor since 1997, I joined Lori’s online community and immediately understood the benefits of using a website to communicate health updates.  During my own struggle with advanced ovarian cancer at age 27, I did not have a good way to streamline communications, which added significant stress to my recovery process.  

After Lori passed away, I couldn’t stop thinking about the impact she made by sharing her experiences and expanding her support network via a personal website.  Her mom, Linda, once told me that Lori’s website was their family’s “lifeline”.  

That word stuck with me.  LIFELINE.  That’s when I knew how I could make lives better for people diagnosed with cancer, and their entire support networks.  

MyLifeLine.org Cancer Foundation began to organize in August 2006, our non-profit charity was incorporated in March 2007, and the first personal website was launched in May 2007.  

Since then, over 41,000 people – patients, caregivers, friends, and family – have registered to use MyLifeLine.org.  In this year alone, over 630,000 visits have come from 146 countries and territories.

I am extremely proud of the progress we have made towards achieving our goals of helping families affected by cancer.  This has been a true team effort of hundreds of smart, loyal, and caring people – board members, staff, volunteers, donors, and sponsors – all committed to our mission.    

In celebrating the organization’s success, I’m also cognizant of where and how the organization still needs to expand.  As I look forward to the year ahead, I’ve made the personal decision to step down as the Executive Director. Because of the tremendous growth we are now experiencing and expect in the future, I feel that a full-time director is critical.  

It has been my greatest honor to steward the growth of MyLifeLine.org.  In addition, this transition will give me more time to raise my two young children, so I strongly believe this is the right decision for the organization and for my family.   

My decision makes way for new talent with the experience to help MyLifeLine.org make even greater strides in the non-profit arena for years to come.

As a founder, I will remain an active volunteer on the Board of Directors. My passion about MyLifeLine.org grows with every family we serve, and I am committed to accelerating the momentum towards accomplishing our mission.

A search committee has been designated by the Board of Directors to begin the hiring process in late September with the goal of hiring someone by the middle of November to allow for training and transition by January 2012.  During the transition, I will remain the Executive Director of the organization.

I truly appreciate the support of the Board, staff, members, and of course, my wonderful family, in making this very difficult decision.  I know I will have your support as we look to serve more people in the future.   Please feel free to contact me with any questions at all; I am happy to share this news with you in greater detail.

With much gratitude,

What Are Symptoms of Ovarian Cancer?

 September is Ovarian Cancer Awareness Month. About 22,000 women will be diagnosed with ovarian cancer in 2011 and approximately 15,400 will die from ovarian cancer (source).

Symptoms of Ovarian Cancer (source):

  • Bloating
  • Pelvic or abdominal pain
  • Difficulty eating or feeling full quickly
  • Urinary symptoms (urgency or frequency)

The Ovarian Cancer National Alliance is one of our nonprofit partners. They offer many great services for patients. Check out their programs and services. Also, check out Ovarian Cancer National Alliance’s KISS and Teal Campaign http://www.avonromance.com/kissandteal/

Another notable organization devoted to ovarian cancer is the National Ovarian Cancer Coalition’s. Their mission is to raise awareness and promote education about ovarian cancer. The Coalition is committed to improving the survival rate and quality of life for women with ovarian cancer.

 National Ovarian Cancer Coalition Programs:  

    * NOCC 1-888-OVARIAN (1-888-682-7426) toll free information and help line

  * Comprehensive on-line ovarian cancer resource www.ovarian.org

    * Publication and distribution of informational literature about the disease, its symptoms andrisk factors, treatment and care issues, and community outreach to diverse populations and healthcare providers throughout the United States

    * Availability of peer-to-peer support

    * Special education and awareness projects

    * Distribution of a national newsletter circulated to a grassroots national network of women living with ovarian cancer,families, friends, healthcare professionals, physicians, NOCC Chapters, supporters and the interested public

    * Physician and health care professionals education through a Symptom Card program and Continuing Medical Education (CME) programs

    * Aggressive September Ovarian Cancer Awareness Month national public information campaign and special public awareness and education projects

What Are Symptoms of Childhood Cancer?

September is Childhood Cancer Awareness Month. According to the American Cancer Society, about 11,200 children (under the age of 15) are diagnosed with cancer every year and sadly that number is increasing (source).

The Ped-Onc Resource Center Website  has a list of symptoms that are most common in childhood cancers.

Symptoms of Childhood Cancer

Continued, unexplained weight loss
Headaches, often with early morning vomiting
Increased swelling or persistent pain in bones, joints, back, or legs
Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
Development of excessive bruising, bleeding, or rash
Constant infections
A whitish color behind the pupil
Nausea which persists or vomiting without nausea
Constant tiredness or noticeable paleness
Eye or vision changes which occur suddenly and persist
Recurrent or persistent fevers of unknown origin

 ———-

If you know a family that has been affected by childhood cancer, be sure to share these resources with them.

Alex’s Lemonade Stand

www.alexslemonade.org

Alex’s Lemonade Stand Foundation (ALSF) emerged from the front yard lemonade stand of cancer patient Alexandra “Alex” Scott (1996-2004). ALSF is now a national fundraising movement, raising more than $30 million and funding over 125 research projects. As of 2010, ALSF has expanded to providing free resources to help get families to treatment. Notably:

  • The Travel Fund program provides transportation, lodging and meal accommodations for families traveling to 20 major cancer institutions
  • A Treatment journal to help families stay organized and track appointments, side affects, medications, etc.
  • Annual Childhood Cancer Symposium.
  • An Answer Center that answers many questions related to treatment.

Curesearch

http://curesearch.com/index.aspx

CureSearch for Children’s Cancer is a national non-profit foundation whose mission is to fund and support children’s cancer research and provide information and resources to all those affected by children’s cancer. CureSearch raises funds for promising research conducted at more than 175 hospitals across the nation. These hospitals participate in National Cancer Institute sponsored clinical trials conducted by the Children’s Oncology Group.

Coping with Cancer resources from Curesearch

National Children’s Cancer Society

http://www.thenccs.org/home

NCCS provices financial, emotional, and educational resource for families that can’t make ends meet when their child is diagnosed with cancer. Since inception, they’ve provided more than $51 million in direct financial assistance to more than 28,000 children nationwide, and they work closely with over 200 hospitals and pediatric oncology units throughout the US.

2011 Cancer Rights Conference

MyLifeLine.org is pleased to partner with the Cancer Legal Resource Center for the 2011 Cancer Rights Conference on Friday, September 23, 2011, in Washington, DC. 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:

 

 

70,000 Young Adults and Adolescents are Diagnosed with Cancer Every Year

An up and coming organization called SeventyK has launched a new campaign to raise awareness for adolescent and young adult cancers.

 

THE STOP A DOC VIDEO CONTEST LAUNCHES!

Patients and Healthcare Professionals Get Rewarded for Creativity That Can Increase Cancer Survivorship for Adolescents and Young Adults

Orange, California – August 29, 2011

Meet Carey Moyer.  “I work at a place called ‘The Happiest Place on Earth’, Disneyland, the place ‘where dreams come true’.  But 18 months ago my own dreams came to a sudden stop.”   Carey is a 32-year-old project manager at Disneyland; she is also a breast cancer survivor and part of the adolescent and young adult cancer segment known as AYA.  “I had lost my mom to cancer when I was little, and I had just gotten married, then blammo – stage three breast cancer.  Now the mastectomy, chemo and radiation are behind me.  I want to empower other young adults with the awareness to know their own bodies in health, so that they can tell when something subtle is wrong, and have the confidence to let their doctors know about it.  Early detection saves lives!”

Seventy thousand Americans aged 15 to 39 year olds are diagnosed with cancer every year.   “I wish someone had done Stop A Doc on my doctors.  Just two years ago, the first doctors I saw examined me and said, ‘It’s a lump but it’s not cancer – you’re only 31.’  Then I met Dr. Leonard Sender.  His diagnosis probably saved my life.”  Misdiagnosis is a significant problem with AYA cancers.  Patients have special needs and challenges, early diagnosis and fertility preservation.

For over two decades the survival rates for adolescent and young adult cancer patients has stayed the same.  SeventyK is fighting to change that” says Dr. Leonard Sender, Founder of SeventyK and Medical Director of the Adolescent and Young Adult Cancer Program in the Hyundai Cancer Institute at CHOC Children’s and UC Irvine’s Chao Family Comprehensive Cancer Center. Dr. Sender, known as “Lennie” by his patients, has an unflagging passion to better health outcomes for this under-served cancer segment.

How is SeventyK going to improve the survival rates of AYA cancer patients?  “Education is the beginning”, says Sender.  Moyer agrees.  “To healthcare professionals – there are five things you need to know to understand the basics.  We are on a mission to educate you.  We’re speaking up.”

The Stop A Doc campaign features a video contest.  Everyone is encouraged to enter a video to win a cash prize and have your video become a featured SeventyK Stop A Doc public service announcement.

Get the details and download your Stop A Doc entry kit at StopADoc.org.   Make a difference and STOP A DOC today!

________________________________________________________________________

 

SeventyK has also launched a free wellness network for AYA patients and healthcare

professionals at https://www.mybridge4life.com/seventyk

SeventyK is a 501(c)3 non-profit medical charity dedicated to changing the course of AYA cancer.   http://www.seventyk.org/

_____________________________________________________________________

Bios:

Leonard Sender, MD, is board certified both in Pediatrics and Pediatric Hematology/Oncology with professional interests strongly centered on the diagnosis, treatment, and epidemiology of adolescent and young adult (AYA) cancer (patients aged 15 to 39).  Dr. Sender is Medical Director of the Adolescent and Young Adult Cancer Program in the Hyundai Cancer Institute at Children’s Hospital of Orange Co., and UC Irvine’s Chao Family Comprehensive Cancer Center.

Carey Moyer works as a creative entertainment project manager for the Walt Disney Company at Disneyland.  But she first met cancer at the age of 9 when her mother was diagnosed with a rare melanoma.  A decade later she lost her mom to that cancer.  Carey feared that someday she too might have to battle cancer, but never imagined that battle would come so soon.  Not long after her marriage, at 31, she was diagnosed with stage three breast cancer.  Her journey has included fertility treatment, chemotherapy, a mastectomy and radiation.  She now shares her story with young adults everywhere.  Her goal is to teach that knowing our bodies “in health” can enable early detection – a lifesaver.