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

Support Provided by Foundation

COVID-19 Q and A

Someone in our patient community said that before the pandemic we as a society had stopped looking into peoples’ eyes. Now that everyone is wearing a mask we have the opportunity to really notice peoples’ eyes, look into them and see people in a deeper way. Perhaps at a time that it is more important than ever, we will truly start to see others like we never have before.    We have seen tremendous strength in our patients who have been tested in a new way. While this seems a bit premature, I want to acknowledge our patients who have been infected with COVID-19 and report that they have all survived, from 35 to 95 years old! Additionally, we are grateful to all of our patients who have endured the “Stay at Home” orders for themselves and to honorably protect their community, and wish to recognize you. The past few weeks have been no small feat. Random Suggestions:

  • If you find yourself awake tonight unable to sleep from insomnia, worry, or just restless, take a good look up at the sky. The moon, Jupiter and Saturn will “closely” approach the earth.
    • On May 27th, Comet Swan will be arcing across the sky and will be visible to the naked eye.
  • As we head back to busier in-person schedules, don’t try to tackle everything at once. You are not personally responsible to catch everything up.
  • Some days are hard. Acknowledge it. Even when doing the right thing, there is uncertainty. 
    Know you are doing your best and that is all you can do.

 Questions for Dave and I:

  1. It is getting very hot to wear a mask. None of my neighbors are wearing masks anymore and lots of people are gathering. Do I really need to keep wearing a mask?

We remain big fans of wearing masks when you are around other people to limit the spread of cough, sneezes, and other spittle that we project from our mouths. A cough releases 3,000 droplets, a sneeze 30,000 droplets, speaking 500-5000 droplets and a Pat Riley quote: Complacency is the last hurdle standing between ...breath 50-5000 droplets. Each droplet might contain 1000 virus particles… I’ll let you do the math. We also need to make sure that simply wearing a mask doesn’t lull us into complacency. We can’t just go back to our former lives wearing masks. We need to continue to limit large gathering and contacts. 

  1. Where am I most likely to get infected?

 Restaurants, birthdays and social gatherings, weddings, funerals, workplaces especially those with open floor plans, conferences, indoor sports, churches, public transportation. In common, they are all indoor events with people closely spaced, talking, singing, or yelling for a duration of time. Spaces that are well-ventilated (like outdoors) and that you move through quickly (like the grocery store) pose a lower risk. 

  1. How dangerous are people with no symptoms who don’t know they have the virus (COVID-19)?

 44% of all infections have come from asymptomatic or pre-symptomatic. 

  1. Is it safe for me to go get my hair and nails done at the salon?

 Unfortunately, we cannot guarantee your safety or that the situation is going to be better in a few weeks or even a few months. However, we need to find the safest ways of returning to the activities that are of most value to us. If getting your hair and nails done at the salon is one of those activities for you, then wear a mask, wash your hands before and after your visit, avoid touching your face and spend as little time in the salon as possible. Also, make sure that your salon is being COVID-19 responsible. Are they wearing masks? Are they wearing them properly? Is the salon crowded? Are they wiping down stations between clients? Etc. 

  1. Is it safer for my hairdresser to come to my house to do my hair if she wears gloves, mask and shoe booties?

 Yes, it is safer for you to have your hair done at home. After you hairdresser leaves, wipe down the areas that he or she was working with >60% alcohol or diluted bleach and any touched surfaces, such as door knobs and faucets. 

  1. I have a dental appointment and an appointment for a mammogram scheduled. I have no doubt they are taking great precautions, but I’m still feeling reluctant and would appreciate your advice.

 First, please don’t delay necessary care. Dave and I have been in the office throughout the entire pandemic and will continue to be available to you. A few people have gotten very sick because they didn’t want to bother us. If you are sick or have a chronic condition that is worsening, please call us! We don’t want to see anyone get sick unnecessarily.

The same applies to going to the dentist. I hate to see a cavity turn into a root canal or a root canal turn into an abscess or a tooth extraction. Unfortunately, the situation with the pandemic is not likely to improve for a while. Take precautions and continue to take care of yourself, including getting your mammogram and dental cleanings. 

  1. Does the scar tissue in my lungs mean I am more apt to die if I get COVID19?

 Not necessarily. People can have scar tissue in their lungs for many reasons. People with extensive lung scarring from diseases like IPF (idiopathic pulmonary fibrosis) or CF (cystic fibrosis) are at greater risk of more serious lung complications from the disease.  Someone who has scarring from an old infection, such as tuberculosis, probably wouldn’t be at higher risk. People with lung diseases that scar and result in flare-ups, like COPD (chronic obstructive pulmonary disease), are more likely to struggle because in addition to COVID 19, they are likely to suffer from a flare-up of their underlying disease at the same time. The biggest risk factors in general include: high blood pressure, diabetes, high cholesterol, coronary artery disease (plaques or stents or heart attacks), atrial fibrillation, serious heart disease, COPD, asthma, people on dialysis, cancer and congestive heart failure. (in that order) You will notice that lung conditions are not even on the top of the list.   While likely not your biggest concern, several people have noticed changes in their skin from the continuous masking of their beautiful faces. Fortunately, also thanks to the mask, others cannot see the new pimples, blackheads and wrinkles trying to decorate your chin and cheeks. Since the Skin Care talk will be cancelled, I’ve summarized the talk and included it along with this email for your “Safer at Home” reading pleasure. It will also be available along with previous talks on Jeannette’s website at www.jeannetteguerrasiomd.com.     As always, feel free to send questions for the next email update on COVID-19 or skin care! Your faithful team, Jeannette and Dave David L Mellman MD & Jeannette Guerrasio MDDavid L Mellman MD, PLLC   Jeannette Guerrasio, MDInternal Medicine Concierge Primary Care

NLMSF Cell Line Proposal

SUBJECT: LMS CELL LINE MODELS COLLABORATION with the INTERNATIONAL LMS RESEARCH ROUNDTABLE

Dear LMS Research Roundtable Member,

At the first The INTERNATIONAL LMS RESEARCH ROUNDTABLE in September 2019, three workgroups were established. One of the focus workgroups is addressing cancer cell line models and patient-derived xenograft (PDX) of LMS. The initial effort is to locate as many of the available LMS cell lines as possible and then to characterize them using a standardized RNA sequencing protocol.

The goal: To perform standardized transcriptional profiling of diverse LMS cell lines and PDX models and to draw comparisons between these models and primary tumors. This will facilitate the characterization and identification of the most relevant model systems for preclinical studies.

We are asking individual laboratories interested in participating in this project to prepare RNA in a standard fashion from available LMS cell lines and submit samples for commercial sequencing. Dr. Matthew Hemming, the leader of this Roundtable Workgroup, has established a protocol for sample preparation and submission, and subsequent collaborative data analysis. If your laboratory does not have the resources to submit your samples for testing by the commercial lab for sequencing, the National Leiomyosarcoma Foundation has agreed to pay for the testing.

The raw profiling data will then be uploaded to a public repository, and analyzed collaboratively to identify models with features that most faithfully recapitulate the leiomyosarcoma gene expression program. These models will collaboratively be made available to members of the Roundtable or anyone else interested in conducting LMS research.

Standardized characterization of existing cell lines and PDX models, verification of which of these models truly represent the primary LMS tumors they were derived from and then the public sharing of these data for all researchers to use will result in an extremely valuable resource for anyone doing LMS research.

Attached is the standardized protocol for this project. For additional information and questions please about this project, please contact Dr. Hemming at: [email protected]

Thank you for contributing to this important research initiative on behalf of the LMS International Research Roundtable.

Dr. Scott Okuno                          Dr. Matthew Hemming

NLMSF Executive Committee Chair  NLMSF Executive Committee
NLMSF SPAEN International LMSRoundtable Workgroup Leader-Cell Lines
Research Roundtable       NLMSF SPAEN International LMS Research Roundtable

    

      

                   

The Roundtable Workgroup descriptions:

SARCOMA TELEMEDICINE INFORMATION AND THE NLMSF MASK PROJECT:

TO:  LMS COMMUNITY
FROM:  THE NATIONAL LMS FOUNDATION


We have information on sarcoma telemedicine capability in some of our sarcoma centers of excellence.   Please contact me if you would like to have more information on this:  303  808-3437 or 303 783-0924.  Each center has its restrictions and protocols, so please contact me for more information.
Also, we are filling orders for our handmade masks for sarcoma/LMS patients and vulnerable elderly as well.   If you would like a mask, please call me or email me  [email protected].


More volunteers to help the Foundation fill orders for our MASK PROJECT welcomed.   Call me if you would like to volunteer to make masks.  I have two online resources for guidelines on how to make the masks.   I can send you a donation in kind letter from the Foundation for tax purposes –  for your gracious donation of masks.   Thank you all so very very much.  
The NLMSF is passionate about making a difference for the community during this health crisis – to help immunocompromised individuals to keep safe.  Masks are failsafe –  continued vigilance with the 6 ft apart and preferable stay and home policies from our respective states must prevail.   But at least it is some form of facial barrier for short trips to pharmacies, grocery stores, waiting rooms for appointments if that is still available.  Dr. Fauci this morning said the same thing.    THE NLMSF TEAM IS THINKING OF YOU AND ALWAYS THINKING OF WAYS TO HELP YOU.    CALL ANYTIME.     Thank you –  Annie and Mitch  Achee of the NLMSF.

Dr. Fauci Video on Wearing a Mask in Public News

Masks for LMS Patients and Caregivers

Surgical mask | Etsy

M A S K S   FOR  L M S   P A T I E N T S   &  C A R E G I V E R S                          for your oncology appointments 


H E    N LM S F   WANTS TO HELP YOU –  SEND A NOTE TO [email protected]  or call 303  808-3437  if you would like a mask sent to you.   Send your address for mailing. These are cotton, washable masks.


Denise Reinke, CEO of the Sarcoma Coalition for Research                           Through Collaboration is sending her HANDMADE MASKS –  She has a big heart!  The NLMSF SALUTES DENISE for helping Rare Cancer Patients in this way.  


A CAREGIVER’s Grandchildren –  also handmade masks coming our way for YOU.
 

We Are Here for YOU in any way possible!

Uplifting Message

What the short story “Exodus” shows us about ourselves | Chasing The Sun

* Peace can be an anchor . . . a place of power from within*  Choose to try to temper and balance positivity in the face of the current reality –
  Certain to be a challenge but it is possible 

*  Make the most of the day – from the time you wake up – start the day with something that can give you a ray of hope and grace for the day and for tomorrow and the next day after that . .  . .

*  Think about the good in your life that you have experienced and those around you that made difference and enriched your life, past and present.*  Give yourself the chance to reprioritize what is important in your life –      reconnecting with family members;  friends – reaching out to them is a gift you give yourself

*  Make way to re-order our lives –  helping someone and by doing so we are rewarding ourselves, knowing we were able to make a difference for others, and, by helping them get through a challenging time – we are able to create a different perspective to manage our fears, anxiety, and worry by caring enough to care about others.

*We have courage, hope, resilience, and strength – as survivors of disease . . . we have what it takes – more than we know.

Medicare and COVID-19

How Medicare is covering coronavirus:

Medicare Coverage –  Medicare (Part B) will cover lab tests to detect COVID-19, but only if your doctor or other health care provider orders it.  You will pay no out -of-pocket costs for such testing.  Additionally, Medicare covers all medically necessary hospitalizations. This includes if you are diagnosed with COVID-19 and might otherwise have been discharged from the hospital after an inpatient stay, but instead, you need to stay in the hospital under quarantine.When a vaccine for the COVID-19 becomes available, it too will be covered by all Medicare prescription drug plans (Part D).   If you happen to be under the Medicare Advantage plan, you will have access to these same benefits, in addition, many Advantage plans,  have expanded coverage of telemedicine, which allows beneficiaries to consult with medical professionals without having to go to a doctor’s office.  Check with your plan for coverage for such coverage details.

When you Call Your Doctor –  Older adults, age 60 and especially older, and people with chronic medical conditions like diabetes, heart, lung, or kidney disease are at a higher risk of serious illness if they contract coronavirus..  Be vigilant If you are in any of these health risk categories.  Contact your primary care if you experience symptoms of shortness of breath, fever, cough, as these symptoms can lead to pneumonia, acute respiratory syndrome, kidney failure and death.  Your doctor will tell you if he or she feels you need to be tested.
Just a Reminder
. . .

Prevention Tips – To steer clear of COVID-19, the CDC recommends:
– Avoid close contact with anyone who appears to be sick; avoid crowds;
–  Reduce nonessential travel within your community; remain at home as much as possible; stock up on supplies, medications, groceries with the help of family/friends/neighbors. young club/church/synagogue volunteers
–  Avoid poorly ventilated places;- clean and disinfect your home – doorknobs, cell phone, computer keyboards, tv remotes, handles on faucets, tables, light switches, sinks . . . everything you can think of that you touch routinely;
– Washing your hands with soap and water (at least 20 seconds) often, especially after being away from your home and out in the public, blowing your nose, coughing, or sneezing.  Use hand sanitizer (that has 60% alcohol) if your water and soap are not readily available.

Last but not least:   Send your questions to:  Savvy Senior
Attn:   Jim Miller   P.O. Box 5443    Norman, OK  73070, Attn:  Jim Miller
Jim is a contributor to the NBC Today show and author of : The Savvy Senior” book.    


FOR MORE INFORMATION ON THE COVID-19:  Visit Coronavirus.gov.

Meal Delivery- Tips for Families

MEAL DELIVERY –   MEAL PREPARATION TIPS FOR FAMILIES AND FRIENDS  –   TO HELP CANCER PATIENTS IN NEED


MEAL DELIVERY / PREPARATION GUIDELINES / FAMILY-FRIENDS ONLINE SIGN UP TO DELIVER MEALS  –  GOOD INFORMATION TO BE AWARE OF DURING THIS CHALLENGING TIME IN OUR LIVES –   TO HELP CANCER PATIENTS IN NEED – and if you have other resource information where you live please send me information via my email address:   [email protected].  If you have more information to share with me, please call me at 303  808-3437.  Glad to connect with you to enhance resource information on this subject.   We can all help each other!
Thank you in advance –    Annie Achee,   National LeioMyoSarcoma Foundation

A model for families to help fellow-family members  diagnosed with cancer – to deliver meals – family /friends/neighbors coming together to help – “many hands make light work!”
https://www.signupgenius.com/home/meal-sign-up-calendar.cfm
https://takethemameal.com/help.php

How to Fix Meals for Cancer Patients: 5 Steps (with Pictures)

https://www.wikihow.com/Fix-Meals-for-Cancer-Patientswww.wikihow.com/Fix-Meals-for-Cancer-PatientsIf patients are undergoing chemotherapy, there are still plenty of vitamin C-rich foods that are not highly acidic and still soft enough to chew or mash for easier consumption. These include cantaloupe, banana, cauliflower, sweet potatoes, cherries, mango and pears.

  1. Nutritious and Delicious Meal Delivery for Cancer Patients:  We work with leading chefs to create fresh, delicious cancer-fighting meals using all-natural meats, poultry, fish, dairy, fruits, vegetables, and grains. Our fresh, home-delivered meals provide a well-balanced diet and can meet the needs of a body receiving chemotherapy, radiation therapy, or other cancer treatment
  2.   .https://savorhealth.com/meal-delivery-2/
  3. Cancer Support Meal Delivery – Moms Meals:  https://www.momsmeals.com/our-food/nutrition/cancer-support/www.momsmeals.com/our-food/nutrition/cancer-supportThe cancer support menu options from Mom’s Meals all contain at least 600 calories and 25 grams of protein per meal. Each of the meals has been developed with input from registered dietitians specializing in oncology and in accordance with guidelines from the American Institute for Cancer Research.
  4. Home | Magnolia Meals At Home:  http://www.magnoliamealsathome.com/
    Magnolia Meals at Home is a meal delivery program that aims to help patients by providing nourishing meals to households affected by cancer so loved ones can spend quality time together. The program is currently available in and around Woodcliff Lake, NJ, Andover, MA, Raleigh-Durham, NC and New Haven, CT (as well as areas in New York, New Hampshire, and Boston, MA).
  5. Meals at Your Door | PearlPoint Nutrition Services®:  https://pearlpoint.org/meals-your-door-2/pearlpoint.org/meals-your-door-2To find: Search “home meal delivery for cancer patients.”. A variety of home meal delivery services will pop up when you conduct this simple internet search. Some services provide fresh meals planned specifically for persons with chronic medical issues like cancer.
  6. Providing Nutritional Meals for Cancer Patients:  Meals to Heal offers five- and seven-day meal plans, which include breakfast, lunch, dinner, and two snacks per day that cost around $8 per meal/snack. Meals can be ordered online at www.meals-to-heal.com. Ordering is tailored to the patient and his or her needs. Bratton says the company “serves all types of cancer patients
  7.  https://www.indiegogo.com/projects/meals-to-heal-healthy-home-delivered-meals-and-support-for-cancer-patients#/
  8. Get Meals – Open Arms of Minnesota:   https://www.openarmsmn.org/GetMeals/www.openarmsmn.org/GetMealsGet Meals. If you’re living with HIV/AIDS, cancer, MS, ALS, ESRD, CHF or COPD and would benefit from assistance with food, Open Arms can provide you delicious meals free of charge. We cook and deliver fresh, high-quality meals that sustain and nourish you.

FROM THE NLMSF WEBSITE –  FOUNDATION RESOURCE ASSISTANCE:  Assistance for meal plans to address treatment side effects : The following resources provide customized assistance for important phases of a cancer journey, from initial diagnosis to after treatment/maintenance. Visit the websites to learn more; direct telephone contact information is provided:

  1. Cooking with Cancer.org   (205  978-3570)
  2. Meals to Heal.org  (888-721-1041)

These organizations offer meal preparation according to your request to help minimize the side effects of chemotherapy treatment.  Certain foods have been found to reduce side effects such as loss of appetite, loss of taste and smell, fatigue, constipation, diarrhea, and more.There is consultation on foods that will boost the immune system and reduce inflammation. Online recipes and recipe videos, plus e-books are available to assist patients and offer customized nutritional counseling and meal planning. This is a support tool to take control of your nutrition to stay strong during and after treatment, and may enhance your body’s response to treatment.

Positive Patient Perspectives

Remote Site Second Opinion Information Listing

Getting a second opinion-   tips from the American Cancer Society https://www.cancer.org/latest-news/getting-a-second-opinion.htmlhttps://www.cancer.org/content/dam/CRC/PDF/Public/8438.00.pdf
When do you need a second opinion and why –  WebMD:https://www.webmd.com/cancer/dx-next-steps-16/cancer-when-do-you-need-a-second-opinion-and-why

Integrative Oncology Essentials https://integrativeoncology-essentials.com/2015/08/should-you-get-a-second-opinion-in-your-cancer-care/
MAYO CLINIC’S ADVICE ON GETTING A SECOND OPINION
https://connect.mayoclinic.org/champions/advice-on-second-opinions/

Getting a second opinion- tips from the American Cancer Societyhttps://www.cancer.org/latest-news/getting-a-second-opinion.htmlhttps://www.cancer.org/content/dam/CRC/PDF/Public/8438.00.pdf
When do you need a second opinion and why –  WebMD:https://www.webmd.com/cancer/dx-next-steps-16/cancer-when-do-you-need-a-second-opinion-and-why

Integrative Oncology Essentials https://integrativeoncology-essentials.com/2015/08/should-you-get-a-second-opinion-in-your-cancer-care/


MAYO CLINIC’S ADVICE ON GETTING A SECOND OPINION
https://connect.mayoclinic.org/champions/advice-on-second-opinions/


N L M S F  LISTING OF ONLINE SECOND OPINIONS:
CITY OF HOPE CANCER CENTERS https://www.cityofhope.org/breakthroughs/the-power-of-the-remote-second-opinion


CLEVELAND CLINIChttps://my.clevelandclinic.org/online-services/myconsult

COLUMBIA CANCER CENTERhttps://www.nyp.org/secondopinion

DANA FARBER CANCER INSTITUTEhttps://stanfordhealthcare.org/second-opinion/overview.html

JEFFERSON UNIVERSITY HOSPITALS ( Sidney Kimmel Cancer Center)https://hospitals.jefferson.edu/diseases-and-conditions/hepatitis-c/remote-medical-second-opinion.html

JOHNS HOPKINS – Sidney Kimmel Cancer Center http://brand.hopkinsmedicine.org/assets/pdfs/best/takeones/Medical_Second_Opinion.pdf

MASSACHUSETTES GENERAL HOSPITAL https://www.massgeneral.org/second-opinions/?source=post_page————————–


MEMORIAL SLOAN KETTERING CANCER CENTERInternatiional Patient Remote Online Second Opinion Service https://www.mskcc.org/experience/become-patient/international-patients/requesting-medical-records-review-mail

STANFORD HEALTH CARE https://stanfordhealthcare.org/second-opinion/overview.html

UNIVERSITY OF CHICAGO COMPREHENSIVE CANCER CENTER https://www.uchicagomedicine.org/cancer/patient-care/second-opinion

UNIVERSITY OF COLORADO HEALTH SCIENCES – Anschutz Cancer Pavillion https://www.uchealth.org/services/cancer-care/remote-second-opinions/


UNIVERSITY OF MICHIGAN –  ROGEL CANCER CENTER https://www.rogelcancercenter.org/health-providers/remote-second-opinion

PATIENT-CAREGIVER ADVOCACY ROUNDTABLE

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