The Heroes Among Us – The Research Scientific Think Tank
* Moving forward with work groups addressing major topics identified for proposed studies
* Work groups taking action between annual meetings * 2020, 2021 Scientific Research Think Tank Roundtable meetings planned
* Advancing research initiatives is the goal of the Roundtable and work begins!
THE NLMSF-SPAEN INTERNATIONAL RESEARCH ROUNDTABLE – 2019
THE HEROES AMONG US- the NLMSF – SPAEN International Research Roundtable –
Researcher Think Tank membership who attended the inaugural NLMSF-SPAEN International Research Roundtable for 2019. The Research Scientific Think Tank is moving forward to 2020 and 2021. The meeting format, with its strong mission and purpose, was felt to be an important step forward in LMS focused efforts to move the needle forward for research study and trial design. Research Workgroups to tackle the proposed studies identified during the Roundtable discussions will begin, for reporting progress in 2020.We are humbled and honored for this level of support of the Foundation’s signature initiative. Support of the LMS Patient Community through a robust Research Roundtable / Think Tank involvement is a testament to the dedication and commitment of the Research Community… This is a major step forward in LMS-focused efforts to “move the needle forward” for LMS research, and the attendee testimonials confirm this…We stand behind the Research Community, the LMS Patient / Family Community in partnership with the Sarcoma Patients EuroNet. – Annie and Mitch Achee, NLMSF.
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.
New Research Shows Progress Toward Identifying Predictive Biomarkers for Immunotherapies Information to be aware of as talking points with your sarcoma oncologist regarding LMS tumor-specific analysis/profiling – from the Cancer Research Institute
Oncolytic Virus Immunotherapy for Sarcomas – Ask a Researcher
Survivorship Care Planning- why it is important and resource information its potential impact for you
Living with Cancer- Patient / Caregiver information resource, plus a free mobile app – Living with Cancer
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.
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
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.
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?
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.
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?”
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.”
Psychosocial Support in Cancer Care
By Heidi Bright, www.thriversoup.com
Psychosocial support in cancer care was addressed briefly Oct. 8 at the National Leiomyosarcoma Foundation patient symposium in St. Louis, Mo. This was one of several cancer treatment topics that I have been reporting about.
Dr. Yasmin Asvat, clinical psychologist at the Siteman Cancer Center, said, “What is a healthy emotional response to a diagnosis? All emotional responses are valid and appropriate. They’re human responses.”
Initial emotions can include sadness, anger, shock, disbelief, denial, and for a few, acceptance.
“Our bodies are looking for balance to be restored,” she said. “If we are not getting to adjustment and acceptance, how can we live well through this journey?”
Thirty percent of patients experience chronic distress after a diagnosis. “To what degree is the distress interfering with the ability to cope effectively?”
Normal feelings like sadness, fear, and vulnerability can become disabling feelings like depression and anxiety.
“Distress can be experienced throughout the cancer care trajectory,” she said.
Dr. Asvat sees her role as partner in balancing patients’ goals with fears. She tries to provide physical interventions and strategies for fatigue, pain, insomnia, and developing a healthy lifestyle.
1. Predicting problems, strategizing solutions – patients worried about financial strain when initially diagnosed, should raise their
concern early in their treatment. Asking the doctor if someone on the clinical team to walk them through what bills they should
anticipate, as well as an availability of financial resource entities is beneficial.
2. Patients do better and regain some sense of control if they are able to harness a proactive problem-solving approach and be
able to generate solutions to address financial concerns.
3. Several aspects of the Affordable Care Act (ACA) may affect the cost of cancer care in the long run, as the law did not go far
enough, as the true costs of actual care delivery were never specifically addressed; many feel that insurance companies needed to provide more coverage for cancer surveillance. Cancer care data were not included in a recently released report by Medicare and Medicaid Services on what different hospitals charge for certain services. Therefore, a cost comparison for cancer care is difficult to establish.
4. The financial ripple effects can linger long after treatment ends. A 2012 study found that of the 23% of patients with medical
debt, the average accrued debt for cancer care was $25,860. The vast majority of patients reporting debt – 81% – were still carrying some of it more than a year after diagnosis.
5. Financial strain cannot only erode patients’ well-being, but also their ability to fight cancer, according to a study published in The Oncologist in 2013. 57% of patients who did discuss costs with their medical care team said the conversation led to a decrease
On a different note …
6. Going back to work: A different topic but one that sometimes can cause angst for a patient returning to work: A licensed clinical
psychologist practicing near Denver suggests the following when patients are worried about how much to reveal to co-workers,
how much information to keep private, and how many times can the same questions be responded to . . . the advice: to
develop a short script before that first day back to work- one that is courteous, but does not invite further questioning. If a
conversation starts turning awkward, perhaps it may be possible to turn it into a more pleasant discussion about common
work/project goals and expressing “All of the support I have received has meant so much to me . . . and I’m glad I to be back.”
Again, if you have questions that you would like to have answered from any of the highlights shared in these three installments, please send them to me via email.
Thank you –
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