National LeioMyoSarcoma Foundation

helping to empower and educate about leiomyosarcoma a rare smooth tissue cancer

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In Appreciation of a Caregiver

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Thoughtful ways to show your appreciation- 

caregiver

  1. Make your loved one’s home health aide a holiday dish or meal. Home health aides do wonders for both the patients they care for and the patients’ families. Patients who can stay home instead of living in a facility are generally happier and better-adjusted, while their families often feel reduced stress, knowing that their loved ones are in a place where they feel comfortable. Show your appreciation for a home health aide or nurse by bringing them one of your favorite holiday dishes, or make a plate for them and share a meal together. Having a moment to talk and connect will make both of you feel good.
  2. Accompany a small gift with a handwritten letter. Gifts are certainly a lovely holiday tradition, and a thoughtful one can go a long way toward showing that you care. But a handwritten note or letter can be even more meaningful. Even if you thank your loved one’s caregiver daily, taking the time to write something out will mean the world to him or her, and give the caregiver something tangible to hang on to and look at when they’re feeling overwhelmed or sad.
  3. Give the gift of time off. For family caregivers, like siblings or spouses, time off can be an incredibly precious gift. Get together with family or friends and arrange to provide whatever care is necessary in order to give the regular caregiver a day, or two, or three off. If there’s one thing caregivers need, it’s a chance to replenish their emotional stores—time free of those responsibilities will give allow them to do just that. You could even give them a weekend away, either alone or with a spouse or close friend. Who among us would turn down a mini-vacation, after all?

You will be able to think of more thoughtful things to do to express your appreciation to your family / caregiver .  . .share your ideas with us on the blog / facebook

Newly Diagnosed?

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We want you to know that there is hope and a way forward. Leiomyosarcomas are uncommon malignant tumors that grow from immature smooth muscle cells, accounting for up to 20 percent of all soft tissue sarcomas. They appear most often in large blood vessels and the pelvic area, including the uterus, and, to a lesser extent, in the extremities like the thighs. In its metastatic state, leiomyosarcoma most commonly spreads to the bloodstream, lung, and liver. Age is considered a high-risk factor for this disease.  It can affect people of different ages.

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Finding A Cure

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The National Leiomyosarcoma (LMS) Foundation meets the needs of patients, caregivers and families through education, resources and the funding of research geared towards fighting this disease.

Our mission is to advance research in order to accelerate treatment options and offer supportive resource assistance to patients and caregivers throughout the diagnosis and treatment journey. We work together to inform, to inspire and finally, to empower those battling this cancer. What we can do today can affect what happens tomorrow! Help us find a cure by donating, volunteering and advocating for those with LMS.

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Patient Program

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The NLMSF collaborates with major sarcoma centers of excellence to bring important and special educational opportunities to the LMS Community annually.

The following list of patient programs reflects the current programs offered this year, as well as a history of the programs from the past, some of which have been recorded and available for access.

Survivorship

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Why is Survivorship Care Important?

The good news for cancer survivorship is that the numbers are growing, with an estimated 17 million survivors living in the United States alone. Unfortunately, cancer treatments are not without consequence and these survivors are dealing with the long-term effects of treatments with little guidance. The Institute of Medicine (IOM) researched the state of care for cancer survivors and found that little guidance is available for survivors and their healthcare providers to overcome the medical and psychosocial problems that may arise post-treatment. The IOM suggests that once a person has completed cancer therapy, he or she should be provided with a summary of the treatments received and a follow up “care plan”. This care plan should summarize the potential late effects, their prevention, symptoms, and treatment, recommendations for cancer screening; psychosocial effects, financial issues, recommendations for a healthy lifestyle, genetic counseling, referrals for follow-up care and a list of support resources. While this plan is extremely important, the resources required to create it have made it hard to incorporate into practice.

What Information Do I Need to Create a Care Plan?

The OncoLife Survivorship Care Plan is a “survivorship care plan” that is individualized based on the answers you provide in a brief questionnaire. In order to develop the most accurate plan of care, you may need to talk to your oncology team to have some details of your cancer therapy available:

  • Type of cancer
  • If you underwent surgery, what procedures were done?
  • If you received chemotherapy, what medications were received?
  • If you received radiation therapy, what type of cancer was this done for?

What Should I Do with the Plan?

This care plan is meant for you to review and discuss with your healthcare team (both oncology and primary care). Keep in mind that every case is different and the risks of some side effects vary based on the actual dose of radiation or chemotherapy that were received or the techniques that were used to administer these therapies. It is very important to review your plan of care with the oncology team to further clarify your risk. 

Related Resources (click titles for more information):

NOTE:  Partnering with your oncologist/oncology care team for your continued care is important in rebuilding quality of life after treatment with a survivorship care plan in place.

Survivorship Care Planning Models for Various Sources for General Guidance:

Please visit the following sites to become acquainted with what will help you to navigate issues during treatment, as well as after treatment is completed. This information is helpful to discuss with your oncologist / medical care team.  Cancer.Net and the Americal Society of Clinical Oncology (ASCO) have put together wonderful, helpful guidance that will benefit you after treatment and enhance your survivorship through careful, ongoing connection with your oncology/medical care team:  The following links will take you to this important information: https://www.cancer.net/survivorship/what-survivorship

Coping – Follow-Up Medical Care – National Cancer Institute

www.cancer.gov/about-cancer/coping/survivorship/follow-up-careOnce you’re done with cancer treatment, you should receive a follow-up cancer plan from your doctor. … All cancer survivors should have follow-up care

Patient Resources

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Within the LMS community, everyone has a unique experience and sharing our narratives empowers the storyteller and all those who listen. Within the sarcoma community, those individual voices unite to serve as a core transformative component for the care paradigm with an emphasis on patient experience. This network can generate recommendations for changes to the standard of care—from initial diagnosis to end of treatment—that will create a legacy for those patients and caregivers who come after us.