National Leiomyosarcoma Foundation

National Leiomyosarcoma Foundation Support, advocacy and research for the LMS Community as we move forward in the quest for the cure.

From the National Leiomyosarcoma Foundationwww.nlmsf.orgInformation  shared from PUB MED  about the utility of the SARAC...
08/03/2024

From the National Leiomyosarcoma Foundation

www.nlmsf.org

Information shared from PUB MED about the utility of the SARACULATOR NOMOGRAM - for Sarcoma.
This topic was covered by the NLMSF some time ago and will be revisited in a virtual presentation
in August. Wanted to share this now for possible discussion with your oncologist if applicable:

Proteomic profiling improves prognostic risk stratification of the Sarculator nomogram in soft tissue sarcomas of the extremities and trunk wall

https://pubmed.ncbi.nlm.nih.gov/39041188/

Opportunities and challenges in soft tissue sarcoma risk stratification in the era of Personalized Medicine

https://pubmed.ncbi.nlm.nih.gov/39080193

The perspectives of research clinicians who utilize the Sarcolator - nomogram to help patient treatment strategies:

Nomograms are very important and it’s important to know how to risk stratify patients so we have a better idea of whether to give them toxic therapy to prevent recurrence, or whether the risk outweighs the benefit. I think patients need a more thorough discussion about what goes into a nomogram and how it can help patients."

- Nam Bui, Stanford Medical Center

Dr. Bui is a Clinical Assistant Professor, Stanford Cancer Institute and a specialist in Sarcoma.
Member of the NLMSF-SPAGN International LMS Research Roundtable

- Nomograms do not predict how an individual will do.
Nomograms give the patient an idea how on average patients with similar clinical features have done in the past. ½ did better and ½
did worse from the average. We use the sarculator app to show a patient how others have done with similar clinical parameters

Dr Scott Okuno, Sarcoma Center, Mayo Clinic
Executive Chair of the NLMSF and the NLMSF - SPAGN International LMS Research Roundtable


The nomograms used for patients with stage 1 or 2 or 3 disease (curable). I find it useful to determine risk of recurrence and explain the risks and benefits of adjuvant therapy.
I tend to use terms like high risk or high likelihood to spread or low risk or low likelihood to spread rather than actual numbers because patients can get fixated on the numbers.
They are not used for patients that already have metastatic disease

Dr. Gina D'Amato, Sarcoma Center, Sylvester Cancer Center
Member of the NLMSF - SPAGN International LMS Research Roundtable

I am using the sarculator frequently. I don't think patients get upset discussing results to be able to move forward with a more informed treatment plan.
I use it to inform patients of the importance of adjuvant therapy in certain cases.

Dr. Kristen Ganjoo, Sarcoma Center, Stanford Cancer Institute
Member of the NLMSF- SPAGN International LMS Research Roundtable

If patients are scared to learn their prognosis, they should simply avoid to ask or use nomograms.
For all others who are willing to learn their risk instead and for all care givers/doctors who use the calculated risk to make decisions, nomograms and among them sarculator are very useful
to give better personalized recommendations. And this is a big help for patients.

Dr. Alessandro Gronchi, chairman of the soft tissue sarcoma committee of the Italian Sarcoma Group (ISG),
secretary of the EORTC Soft Tissue and Bone Sarcoma Group, and is a member of the Sarcoma Task Force
of the European Society for Medical Oncology, as well as a member of the NLMSF - SPAGN International LMS Research Roundtable

Soft tissue sarcomas (STS) are a rare and heterogeneous group of cancers. Treatment options have changed little in the past thirty years, and the role of neoadjuvant chemotherapy is controversial. Accurate risk stratification is crucial in STS in order to facilitate clinical discussions around peri-...

From the National Leiomyosarcoma Foundationwww.nlmf.orgInformation  shared from PUB MED  about the utility of the SARACU...
07/31/2024

From the National Leiomyosarcoma Foundation

www.nlmf.org

Information shared from PUB MED about the utility of the SARACULATOR NOMOGRAM - for Sarcoma.
This topic was covered by the NLMSF some time ago and will be revisited in a virtual presentation
in August. Wanted to share this now for possible discussion with your oncologist if applicable:

Proteomic profiling improves prognostic risk stratification of the Sarculator nomogram in soft tissue sarcomas of the extremities and trunk wall

https://pubmed.ncbi.nlm.nih.gov/39041188/

Opportunities and challenges in soft tissue sarcoma risk stratification in the era of Personalized Medicine

https://pubmed.ncbi.nlm.nih.gov/39080193



Annie Achee, NLMSF

Patient Empowerment through Information Sharing / Education

Soft tissue sarcomas (STS) are a rare and heterogeneous group of cancers. Treatment options have changed little in the past thirty years, and the role of neoadjuvant chemotherapy is controversial. Accurate risk stratification is crucial in STS in order to facilitate clinical discussions around peri-...

Join Triage Cancer for a FREE webinar about Benefits for Veterans with Cancer. This webinar explains veteran access to s...
05/22/2024

Join Triage Cancer for a FREE webinar about Benefits for Veterans with Cancer. This webinar explains veteran access to specific benefits, programs, and resources that may be useful after a cancer diagnosis. Email annieachee@aol.com for more information.

Guidance on what to eat during treatment / clinical trial participation and more. Ask questions of special guest Alison ...
05/22/2024

Guidance on what to eat during treatment / clinical trial participation and more. Ask questions of special guest Alison Tierney, a registered dietitian, board-certified in oncology nutrition, and a cancer thriver.  

Send a note to annieachee@aol.com to join the discussion group and ask questions.  You will be glad you did!

05/04/2024

In-Persons Patient /Family Education Forums hosted by the National Leiomyosarcoma Foundation and the Sarcoma Teams at the Sylvester Cancer Center in Miami and Moffitt Cancer Center in Tampa:
Please join us for a very information forum for the LMS/SARCOMA COMMUNITY -
Send a note to annieachee@aol.com to register for either meeting as soon as possible - we look forward to meeting you and sharing important and beneficial information - you won't want to miss!
Sylvester Cancer Center - Monday, May 13, 2024 4 - 6 pm
Moffitt Cancer Center - Thursday, May 16, 2024 3 - 5:30 pm

Some of the topics to be discussed at both:

Treatment / Management of LMS /SARCOMA - updates

Surgical / Radiation Therapy research updates

Integrative Medicine - Well-being/Nutrition during treatment, after treatment / during clinical trials.

Complimentary virtual programs and resource support of the National LMS Foundation and its Research support focus areas.

Q & A for Patients and Families

05/04/2024

PATIENT PROGRAMS - IN PERSON with The NATIONAL LEIOMYOSARCOMA FOUNDATION and the SARCOMA TEAM OF THE SYLVESTER CANCER CENTER AND THE MOFFITT CANCER CENTER:
Please join us for a very information forum for the LMS/SARCOMA COMMUNITY -
Send a note to annieachee@aol.com to register for either meeting as soon as possible - we look forward to meeting you and sharing important and beneficial information - you won't want to miss!
Sylvester Cancer Center - Monday, May 13, 2024 4 - 6 pm
Moffitt Cancer Center - Thursday, May 16, 2024 3 - 5:30 pm
Topics to be discussed at both:
Treatment / Management of LMS /SARCOMA - updates
Surgical / Radiation Therapy research updates
Integrative Medicine - Well-being/Nutrition during treatment, after treatment / during clinical trials.
Complimentary virtual programs and resource support of the
National LMS Foundation and its Research support focus areas.
Q & A for Patients and Families

04/22/2024
While only 1 out of 100 lumps and bumps will turn out to be sarcoma, a simple ultrasound can often tell the different be...
04/06/2024

While only 1 out of 100 lumps and bumps will turn out to be sarcoma, a simple ultrasound can often tell the different between harmless masses like a lipoma or a cyst, and those that need more workup to rule out cancer.

A simple rule: If the mass / a lump of ANY size, and especially as large as a golf ball or larger! If there are function problems, near the lump, or the area in question is growing, this can be a RED FLAG as well! IT CANNOT be ignored – it needs workup by a Sarcoma Specialist because you might hear that “oh it is just a fatty cyst / a lipoma.”

Limited data exist on the optimal postoperative surveillance protocol for high-grade soft tissue sarcoma, particularly r...
03/11/2024

Limited data exist on the optimal postoperative surveillance protocol for high-grade soft tissue sarcoma, particularly regarding the optimal imaging modality and imaging interval for detecting local recurrence. This study aimed to assess the benefit of short-term postoperative ultrasonography (USG) for detecting local recurrence in patients with high-grade soft tissue sarcoma. Click here to learn more: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10797984/

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