SPEAK UP -  ASK QUESTIONS - to make the most of appointments:

. If you have questions or concerns, or if you do not quite understand everything that has been discussed. You are important. Don't be afraid to ask for more information or more clarification. Don't be embarrassed to ask questions. If something does not seem quite right, be sure to express that.

 to the care you are receiving. Make sure you are getting the correct treatments and medications. Carefully read any information provided to you. Write down questions you have for your healthcare team. Take notes or bring someone with you to take notes during your appointments.

 about your diagnosis, the medical tests you are undergoing, and your treatment plan. Carefully read any information provided to you. Reading as much as you can gives you an opportunity to formulate your questions and to know more about what to ask.

 about your care. You are the center of the healthcare team. You and your care team should agree on each step of your care. Know who all the care team members and how they interface with you and the rest of the care team members. This resource can help: 

http://nlmsf.org/navigating-leiomyosarcoma-treatment-after-treatment/

 about the quality or safety of your care to your care team.  

None of this is easy. Taking someone with you is most helpful. A support person to be with you at stressful appointments is valuable.

Articles

How patients can be their own advocates and maximize their care team appointments by speaking up and asking questions.

Patients as Self-Advocates

The National Leiomyosarcoma Foundation and the Life Raft Group (Gist) Announce a New Collaboration

to provide a valuable resource to the Leiomyosarcoma Patient-Family-Care Partner (caregiver) Community:

On May 5th, the National Leiomyosarcoma Foundation (NLMSF) and the Life Raft Group (LRG) came together to provide valuable assistance through the LIFE RAFT GROUP 's SideEQ tool -  a free interactive platform that provides information on cancer treatment side effects and management. 

SIdeEQ tracks side effects based on similarity of patients, their current LMS diagnosis, and quality of life indicators. In addition, vital information is provided by the patient and clinical experts on how to manage side effects.

The National Leiomyosarcoma Foundation is most grateful for this graciously extended collaborative opportunity.  Such bridging of resource assistance for patients is the hallmark of the NLMSF's mission focus, along with patient education and advocacy, as well as research support.

It is with great pride that Side EQ  can now be offered to the LMS Community, and we salute the LRG for its visionary focus in having provided this valuable patient/family support system.

For more information about Side EQ and how it can help patients: 

If you have any questions concerning this program please contact Annie Achee at 

.  I hope patients utilize this really special/helpful program that is designed to contribute to a patient's ability to know what they might face with beginning a treatment protocol, during the treatment journey, and after treatment is completed. It is a patient driven program that can mean so much to so many.

National Leiomyosarcoma Foundation has collaborated to bring resources to family, caregivers and patients with leiomyosarcoma.

New Patient Support Program: SideEQ Patient Registry for Side Effects and Information on How to Manage Their Patients

Rare cancer patients can donate tumor samples to benefit future research on their disease using the new online service, 

. The National Leiomyosarcoma Foundation is joining this project to advocate for LMS patients.

Pattern.org is offering an innovative research program for rare cancer patients. This program allows patients with rare cancers to donate their fresh tumor tissue through surgery or biopsy.

Patients consent directly online, then participate from their chosen hospital without having to change their treatment plans or fly to a new location for medical care.

Tissue donated through Pattern.org is sent to the Broad Institute of MIT and Harvard where it is used to create cancer models called cell lines. These models are a critical tool needed by scientists to research, create, and test treatments for rare forms of cancer. In a survey of cancer researchers from January 2017, lack of access to these cancer models was cited as the top impediment to research.

Several rare cancers were chosen to be included in the initial phase of this new cell line effort, including Leiomyosarcoma (LMS). The

 National LeioMyoSarcoma Foundation (NLMSF)

 has partnered with Pattern.org, the Rare Cancer Research Foundation, and the Broad Institute’s Cancer Cell Line Project to advocate for LMS patients in this novel patient-to-research program.

LMS patients expecting to undergo a surgery or biopsy can now visit 

 and learn about the option to donate their tumor tissue to LMS research. By visiting the Pattern.org website, patients learn:

More about the Broad’s Cancer Cell Line Project

Why tumor tissue donation is valuable to research

How Pattern.org helps patients provide voluntary consent to donate their tumor tissue

Once an LMS patient submits a consent to donate their tumor tissue through the site, their role is done. The rest of the process will be handled completely by the Pattern.org team who work directly with the patient’s surgical oncologist or biopsy staff to coordinate the tissue donation.

To protect patient privacy, the tissue sample will be de-identified according to strict guidelines established by the Broad Institute and corresponding HIPAA regulations. After removal of all personal information, Pattern.org transports the tissue sample directly to the Broad Institute for processing. There is no cost to the patient for participating in this program and the patient will receive no diagnostic or other information from Pattern.org or the Broad Institute regarding their tumor tissue sample.

If a successful cell line model is created from donated tissue sample, the model and any associated data will be made available to any qualified researcher in the world. By openly sharing data, patients’ donations provide an invaluable resource for researchers to better understand rare cancers like leiomyosarcoma— potentially aiding in the discovery of treatment options.

Pattern.org is a website that allows cancer patients to donate their tissue samples to further research on that cancer type. It is a direct-from-patient online platform, working with top cancer labs across the country to build research tools to advance cancer research. The project is entirely built and maintained by the Rare Cancer Research Foundation, a non-profit organization based in the US.

The National LeioMyoSarcoma Foundation is committed to LMS patient-family/caregiver education and support, patient advocacy, research funding and organizational collaborative partnerships in order to support the LMS community and advance treatment breakthroughs.

National Leiomyosarcoma Foundation joins Pattern.org in an effort to collect tumor tissue form patients with rare cancers.

The National Leiomyosarcoma Foundation is Joining a Tumor Sample Project to Advocate for LMS Patients

If you have questions or concerns prepare for your appointments because many times time is short or things may be rushed during your oncology or care team appointment. Be organized, be prepared before your appointment to get the most out of your appointment.

Speak up! Don’t be afraid to ask a question or pose a concern.  You have the right to ask and get a response from your care team.  On 

 your “Patient Compass” you will see what questions to ask when, and who to direct a particular question to on your care team. This guidance should be helpful to you.

Take someone with you to your appointments, if you can, to help be an extra pair of eyes and ears, and take notes for you as you receive answers to your questions, and as other information is given to you that you will want and need to remember. If you don’t understand a medical term, ask what it means to get immediate clarification. After you get instructions or an explanation repeat back what you thought you heard so you can reconfirm your understanding of the information.

Make sure that any key facts our doctor tells you are written down so you won’t forget.  Have an organized notebook, with pocket folders, to house your lab tests, CT scan reports, questions you want to ask, notes taken during appointments. If you would like such a notebook already assembled for you email: 

 or call me 303-783-0924. You can see what the notebook looks like on the website under the merchandise page.

Additionally, a word to the wise: If you are in the hospital make sure that the nurses and doctors are

checking your ID bracelet to make sure you are getting the correct medications and medical assessment.

Tips from the National Leiomyosarcoma Foundation for making the most of your appointments and care.

Take Charge of Your Care

Oral complications can occur with patients receiving chemotherapy (roughly 40%), receiving radiation for head and neck malignancies (approx. 75%). Some complications only occur during treatment; others such as dry mouth, may persist for a long time after treatment and lead to oral issues as a result.

Your mouth's major protection system comes from three pairs of salivary glands. Cancer treatments can cause dry mouth/salivary gland dysfunction increasing the risk of oral infections, which can affect speech, chewing, and swallowing.

A teaspoon of Oral Balance Moisturizing gel or a similar type of product prior to meals can be helpful to swallow more easily.

Persistent dry mouth also  can increase decay, demineralization of the surface of teeth, bleeding from decreased platelets, gum disease. Loss of taste can also happen.

Use a toothpaste that is specifically formulated for cancer patients such as Biotene or something similar, which contains natural salivary enzymes that boost and replenish the oral defense system, and inhibit harmful microorganisms associated with gingivitis and oral irritations. products that do not have sodium lauryl sulfate is best because this can also promote canker sores and mouth ulcers.

Using an extra soft toothbrush after every meal and before bed to brush teeth, gums, tongue will help as well. Using a product that helps relieve dry mouth ( a saliva substitute such as a mouth moisturizing gel) can help.

Keep in contact with your dentist if you are starting cancer treatment, and especially before you start treatment -- at least two weeks prior to the start of cancer treatment visit your dentist. Teaming up with your dentist can help sidestep oral complications. The fewer side effects the better to not compromise your cancer treatment schedule. Alert your dentist/ cancer care team if you are experiencing  oral complications during your treatment phase.  

Also, be sure to ask your oncologist about how to avoid/minimize mouth sores if you are to begin chemotherapy treatment.

Sometimes you will be given something for that or there is a special mouth wash recipe for this, to use after each mean, after brushing your teeth. Let me know if you are interested in the recipe for the mouth wash.

If you end up having a mouth sore, take small bites of food, chew slowly, and sip liquids with meals. Avoid sharp, crunchy foods that could scrape or cut your mouth. Always alert your care team and dentist.

Hopefully your oncology care team will have already counseled patients on this.

Oral Care before, during and after cancer treatment.

Oral Care for Oncology Patients

Helping Children When a Family Member Has Cancer

CANCER FAMILIES — PROCESSING A CANCER DIAGNOSIS – TOGETHER:

How can children be told about a parent/family member’s cancer diagnosis?  How will children react to the discussion?

It all depends on how the adults close to them are able to handle the crisis.  There is stress, intense feelings of fear, and uncertainty about what lies ahead.

How do parents continue to prepare their child/children for what lies ahead with treatment and beyond?

Hopefully,  the following resource information can offer guidance and help to answer these important questions:

American Psychological Association — Psychologists/ new interventions are helping cancer families cope. 

http://www.apa.org/monitor/2010/07-08/cancer.aspx

The National Cancer Institute offers an information advice resource to assist children/teens in coping with a family cancer diagnosis: 

http://www.cancer.gov/publications/patient-education/When-Your-Parent-Has-Cancer.pdf

Cancer affects the entire family and often times children need help to understand and receive coping support within the family as well as with their friends. Click 

 to obtain extensive information from the

 on how to help children understand and deal with cancer.

Cancer.Net —  another good resource for parents /primary guardians/grandparents/teens to know and understand coping mechanisms  and helpful advice for all:  

http://www.cancer.net/coping-with-cancer/talking-with-family-  and-friends/talking-about-cancer/talking-with-your-teenager

WHAT ABOUT ME?  A booklet for Teenage Children of Cancer Patients. 

When Your Parent has Cancer:  A Guide for Teens.

  It Helps To Have Friends: When Mom or Dad has Cancer.

 Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis

http://www.cancercare.org/publications/49-

.  Helping Children When a Family Member has Cancer.

 helping_children_when_a_family_member_has_cancer

Note: If you are looking for books for adults or children (age 3 — 5), a list of books is available by emailing 

Youth Coping With a Family Cancer Diagnosis

When you have had a chance to get back on track after a treatment therapy regimen but may not still feel like yourself, try to get your strength back by slowly building energy through an activity that can refresh, if you are able, especially as it relates to your psyche in between treatment regimens such as chemotherapy cycles.

Fatigue, changes in skin, nails, loss of calcium in bones, swelling (lymphadema) or lymph nodes from radiation, nerve pain, tingling, numbness, changes in cognition (a neuropsychologist can help), most all of this gradually can improve to some degree.

Physical therapy can greatly benefit cancer patients who are struggling with post-treatment complications. It all about improving quality of life to help work through residual side effects with issue such as peripheral neuropathy, lymphadema- stimulating the lymph system with massage, range of motion exercises, to reduce swelling, and address orthopedic changes from treatment, soft tissue/range of motion exercises may help.

It is never too late to improve quality of life, to regain independence and emotional well-being as a result, and thrive.

"Still the mind" — focusing on living best during chemo through having dominant thoughts of positive energy, through meditation and positive mental imagery. Keep a journal of how you are feeling. You may eventually refer back to your journal to see how far you have come since that journal entry.

You will get through this, as hard as it may seem at the time, you can make it. You have family and friends around you to support the goal of "making it through."

Your positive attitude can also be a great inspiration to others as well, especially if you are in a support group, but also your friends and family who are there to support you, will feel your strength and courage through your positive attitude. As a caregiver, I have witnessed this, felt it, experienced it. It is real. You can make it happen — you have the POWER.

National Leiomyosarcoma Foundation