2843 E. Grand River Avenue – #230 East Lansing, MI 48823 [email protected] 303-783-0924

PATIENT ADVOCACY PEER GROUP ROUNDTABLE

Patient Messaging

Image may contain: 1 person, smiling, outdoor

I recommend that people that are newly diagnosed with any sarcoma, but certainly LMS –  seek a Sarcoma Specialist immediately. Sarcomas are difficult to diagnose in the first place, so if you have a lump or bump anywhere-   make sure to advocate for yourself to your primary care physician that perhaps seeking a sarcoma specialist’s opinion would be wise.  It certainly would be!
When you are in treatment-  many things can happen.  Make sure you are fully informed of the side effects that might happen.  They might not happen, but in case them do,  you need to be armed with information and always call your care team when you are experiencing a
side effect so they can be involved in helping you . . . communication is important with your care team!   They can’t help if they don’t know what you are going through  . . . and they want to be involved in your care all the way through to the end of treatment and beyond.
End of treatment-   a survivorship plan is important –  to know how often you will be followed, what it will entail,  how to rebuild your quality of life, for no only you, but whoever has helped be your caregiver –  both of you need to recharge your batteries and turn to a
new chapter in living  and  taking care of yourselves.
The NLMSF continues to help me through my journey and I appreciate the support all along the way – 24/7 availability.

THE SARC RESEARCH ADVOCACY COUNCIL-” “Representing Patients/Families/Caregivers”

THE SARC RESEARCH ADVOCACY COUNCIL

The NLMSF is a member of the  SARC Research Advocacy Council tobring the voice of LMS patient community  to the table through to:

*  Developing recommendations and providing input based on experience and understanding of treatment protocols.

*  Developing recommendations to enhance programs and activities that may currently be experiencing barriers to implementation.

*  Disseminating to patients available trial information and distribute research findings once trials are completed.

NLMSF RESEARCH ROUNDTABLE-“SCIENTIFIC RESEARCH THINK TANK”

NLMSF NCI MyPART Announcement-“FOR PATIENT PARTICIPATION”

 

                                                            

THE NATIONAL LEIOMYOSARCOMA FOUNDATION ( NLMSF)  JOINS THE  NCI  MyPART  NETWORK
The NLMSF has joined the National Cancer Institute (NCI) My Pediatric and Adult Rare Tumor (MyPART) Network as an advocacy partner to represent the LMS Community.
The MyPART Network is coordinated through the NCI Center for Cancer Research (CCR).
The NLMSF has joined the National Cancer Institute (NCI) My Pediatric and Adult Rare Tumor (MyPART) Network as an advocacy partner to represent the LMS Community. The MyPART Network is coordinated through the NCI Center for Cancer Research (CCR).
This program brings patients and their families together with healthcare providers, advocacy organizations, and researchers to work together to find treatments for rare cancers affecting children, adolescents, and young adults.
The National Leiomyosarcoma Foundation is going to be instrumental in helping the NCI MyPART Network in providing information and connecting patients to the Natural History Study for Rare Solid Tumors. This study will follow patients of all ages with rare solid tumors, including LMS, over the course of their disease to learn how these tumors develop and to discover treatments.
The NLMSF-SPAEN International LMS Research Roundtable will be communicating/coordinating with the  MyPART Network Initiative for mutually beneficial information sharing.  Such a collaboration will facilitate information gathering for better understanding of the LMS tumor biology and molecular makeup,  and facilitate MyPART collaboration with the NLMSF – SPAEN International LMS Research Roundtable precision studies and LMS treatment objectives.
The National Leiomyosarcoma Foundation will facilitate the exchange of information between LMS patients, healthcare providers, researchers, and the MyPART Network. This program is very important and has the potential to impact LMS tumor study and study design by the research community.   Such collective / collaborative efforts can only help in future studies to accelerate and advance new treatment options.
Patients are invited to participate in the MyPART Network Natural History Study of Rare Solid Tumors by visiting:  www.cancer.gov/MyPART to learn more.
For Patients:   Contact MyPart to participate in the program:https://www.cancer.gov/pediatric-adult-rare-tumor/about/contact
For any questions regarding participation or for more information about MyPART for the LMS Community, please contact: Annie Achee at [email protected] or 303 808-3437

                                                                           

LMS News Tracker 5/14

LMS News Tracker 4/30

LMS News Tracker 4/15

LMS News Tracker 3/6

LMS News Tracker 3/26

LMS News Tracker 3/19

LMS News Tracker 3/13

LMS News Track 2/26

LMS News Tracker 2/19

LMS News Tracker 2/12

LMS News Tracker 2/5

Rare Artist Reception Photos

The Rare Artist Reception, a most important event of  the 2017 Rare Disease Week in Washington, D.C. showcased Rare Disease artists from 2015 and 2016 entries. The artists of these beautiful artworks are patients – of all ages, in the US and Canada.  Very heartwarming messages are provided along with each art piece, making it so meaningful by the symbolic expression of the rendered artwork.

12-year-old artist from Toronto Canada honoring her service dog Tory

This self-portrait symbolizes the power of the mind to conquer a disease /disability challenge of a rare disease.

 “Ten Redefined” is a depiction of the sudden, intense pain of a debilitating disease that challenges one’s state of mind and body.

“Zebras Matter,” a revelation of the body and mind . . . what is within.

 “Comfortable in my Shell”   – from a patient who has three different rare diseases
“Waterlilies” to raise awareness about a rare disease which affected the artist and her mother.

 “Girl With a Pearl Earring.”  recreated by the artist who was inspired by a renowned artist with the same titled painting.

 

How to Survive Hospital “Nutrition”

How to Survive Hospital “Nutrition”

By: Heidi Bright, M.Div.
http://www.heidibright.com
Author, Thriver Soup: A Feast for Living Consciously During the Cancer Journey http://thriversoup.com/

Hidden Voices: Biblical Women and Our Christian Heritage http://www.helwys.com/sh-books/hidden-voices/

From 1988 to 1993 there were over 2,700 articles dealing with milk recorded in the ‘Medicine’ archives. … They were only slightly less than horrifying. First of all, none of the authors spoke of cow’s milk as an excellent food, free of side effects and the ‘perfect food’ as we have been led to believe by the industry. The main focus of the published reports seems to be on intestinal colic, intestinal irritation, intestinal bleeding, anemia, allergic reactions in infants and children as well as infections such as salmonella. … Contamination of milk by blood and white (pus) cells as well as a variety of chemicals and insecticides was also discussed…  In adults the problems seemed centered more around heart disease and arthritis, allergy, sinusitis, and the more serious questions of leukemia, lymphoma and cancer.

Robert M. Kradjian, MD

Juice, milk, something processed, sugar/corn syrup drinks and processed puddings containing artificial ingredients.

While staying in the hospital after my abdominal surgery, I was started on a clear liquid diet. Then I was moved to a “full” liquid diet. It consisted of adding dairy, wheat, sugars, and petrochemicals to the menu through milk, ice cream, cream soups, and artificial colorings and flavorings.

Fortunately, before the surgery, I was able to talk to a hospital dietitian to let her know my body does not properly digest dairy or wheat, I did not want sugar, and I needed a substitute with protein.

She suggested soymilk. Too estrogenic for me with my cancer background, I said.

She was temporarily at a loss for how to help me get something more substantial on my “full” liquid day. Then she remembered she could get me some almond milk.

That works for me, I said.

I knew this would be a problem because the last time I went through abdominal surgery I was still limited to clear liquids during the 24 hours when I was supposed to get “full” liquids. I felt like I was starving after not having eaten for more than a week. I desperately needed protein and the hospital did not supply any.

Whey protein is a dairy product. Sugar and corn syrup are hardly “therapeutic nutrition.” Note the apple on the cover, and the statement “contains no apple juice.”

The almond milk option indicated to me that hospitals are getting a little more up to speed on what actually is nutritious and what is not.

Another indicator is the hospital-floor refrigerator unit available to patients. When I stayed in the hospital years ago, those refrigerators were full of sodas. I cannot imagine anything worse for someone and who has had abdominal surgery than to add carbonated beverages that fill the abdomen with even more gas than is already added through surgery. My hospital roommate 25 years ago was drinking soda and complaining bitterly of her terrible gas pain. She did not make the connection between the soda gas and her gas pain.

So I am grateful hospitals are moving in the right direction.

However, there is still work to be done. I needed something substantial without dairy, wheat, sugar, or petrochemicals. I am grateful they did have the almond milk option.

And the hospital refrigerators… see the pictures of what they offered. Items filled with dairy, sugar, and long lists of unpronounceable chemicals. Really? For people whose bodies are so compromised they are in hospital beds?

Since when do sugar and corn syrup support advanced recovery?

Where are the fruit and vegetable smoothies? Where are the probiotic drinks? Or perhaps even trays of fresh fruits and vegetables for those ready for them?

Perhaps part of the reason the hospitals are not supplying these foods is because Americans are not used to eating them and therefore the foods might rot in the fridge unless health nuts like me come along to eat them.

And real food is more expensive than these standard options. Hospitals probably don’t have big enough budgets to provide real food for every patient.

Unfortunately, a poor diet can lead to health conditions that land one in the hospital to begin with…

Thriver Soup Ingredient:

If you are going to stay in the hospital, find someone to bring you better quality food for each stage of recovery.

Source:

Robert M. Kradjian, MD, Breast Surgery Chief Division of General Surgery, Seton Medical Centre, Daly City, CA, from http://www.notmilk.com/kradjian.html

THE MILK LETTER : A MESSAGE TO MY PATIENTS Robert M. Kradjian, MD Breast Surgery Chief Division of General Surgery, Seton Medical Centre #302 – 1800 Sullivan Ave.

 

What Does it Mean to Thrive?

By Heidi Bright
Dr. Pat Baccili, with the Dr. Pat Show, explored this topic on Monday through her radio program. Listen to find out some ways to heal one’s life.
http://www.thedrpatshow.com/play/23277/baccili-20170116-bright.mp3
During the interview, Dr. Pat said, “Only someone like Heidi can take this journey and write about. What she’s writing about is being able to thrive. What does that mean?” The Dr. Pat Show
As she talked, she had Thriver Soup in front of her. “It’s really good,” she said. “I was really, really struck by how what you’ve written in this book is really a toolkit for people that are struggling in life with many, many things.”
She said whether someone has cancer or not, “This book right here will help you…because when I go to the section on the ‘Power of Powerlessness,’ that is not a book just for people that are thinking ‘I might die.’ This is a book for those of us that know what it is like to die on the inside as well.”
She said she would use Thriver Soup for people who want to change their lives despite their history or background. “It is a book to get out of that sense of powerlessness.”
Talking with me, she said, “You do this so brilliantly in the book. You talk about looking fear in the face. I think that is so important. But I also love that you talk about looking fear in the face that all of us can do today in our lives.”