Real-World Avapritinib Therapy Sustains Tolerability Despite Toxicity Rate Avapritinib showed notable grade 3 and higher cytopenias but fewer discontinuations, suggesting manageable toxicity with monitoring.

#Midostaurin had similar severe adverse event rates yet markedly higher discontinuation driven by gastrointestinal intolerance and fatigue. Presented at @theacmg.bsky.social Clinical Genetics Meeting

Learn more: https://bit.ly/4bZ70sb

#RareDisease #SystemicMastocytosis #MedSky

Case Study: SM Can Mimic Metastatic Disease Through Diffuse Osteoblastic Bone Lesions A case report highlights the rare instances where aggressive SM can mimic metastatic disease through a presentation of bone lesions.

#SystemicMastocytosis (SM) can sometimes present as diffuse osteoblastic bone lesions and mimic #MetastaticCancer. Case report in European Journal of Case Reports in Internal Medicine.

Learn more: https://bit.ly/4ua0rdg

#RareDisease #MedSky

Do you have Systemic Mastocytosis?
Heal Canada is looking to hear from patients across Canada to better understand real experiences, including those who may have taken avapritinib.
Your voice can help inform treatment decisions
Please reach out to us at admin@healcanada.org
#SystemicMastocytosis

Advanced Systemic Mastocytosis Markedly Raises Five Year Mortality Advanced systemic mastocytosis (SM) increased 5-year mortality more than 11-fold compared to reference cohorts.

Advanced systemic mastocytosis (#AdvSM) was associated with a markedly elevated risk of death over 5 years compared with well-matched reference cohorts, and even nonadvanced disease conferred excess mortality.

Read here: https://bit.ly/4aZs0ym

#RareDisease #SystemicMastocytosis

Allo-HSCT Yields Durable SM Remission Despite Late AML Relapse Late AML relapse without systemic mastocytosis (SM) recurrence after allo-HSCT suggests disease-specific immune susceptibility.

Durable remission of systemic mastocytosis (#SM) despite late relapse of acute myeloid leukemia (#AML) following allogeneic hematopoietic stem cell transplantation (allo-HSCT) highlights disease-specific immune vulnerabilities.

Read here: https://bit.ly/4aqNkeF

#RareDisease #SystemicMastocytosis

Do you have Systemic Mastocytosis?
Heal Canada is looking to hear from patients across Canada to better understand real experiences, including those who may have taken avapritinib.
Your voice can help inform treatment decisions
Please reach out to us at admin@healcanada.org
#SystemicMastocytosis

Expert Conversations in Systemic Mastocytosis: Clinical Insights for Dermatology Professionals Expert-curated slides on the dermatologist’s role in diagnosing and managing care for patients with systemic mastocytosis (SM), including the latest advances on treating symptoms and employing targete...

Expert insights on diagnosing and managing systemic mastocytosis, tailored for dermatology professionals.

✨ Download the slideset for your own practice: https://bit.ly/46nD7hV

#SystemicMastocytosis #DermatologyEducation #ClinicalInsights

FDA Issues CRL for Debutepinephrine Sublingual Film for Anaphylaxis The US FDA has issued a complete response letter for debutepinephrine for the treatment of type 1 allergic reactions including anaphylaxis.

The @fda.gov has issued a complete response letter for #Anaphylm™ (debutepinephrine) for treatment of type 1 allergic reactions, including anaphylaxis, a development of particular interest for patients with #SystemicMastocytosis

Learn more: https://bit.ly/4r2AH0s

#RareDisease #MedSky

With the rise of TKIs, the treatment landscape of #SystemicMastocytosis is changing, and the future looks promising. Join us on February 10 to learn as experts discuss the latest advances in TKI therapy, safety and side effects, and more. Register at https://ow.ly/mAUb50Y1kS3
#MedSky #mastocytosis

Nemolizumab May Offer an Alternative Therapeutic Option for Refractory ISM A case report suggests nemolizumab may represent an alternative therapeutic option in refractory ISM when standard treatments fail.

Interleukin-31 (IL-31) pathway inhibition may offer an alternative therapeutic direction for refractory indolent #SystemicMastocytosis (ISM) when standard treatments fail. Case report in @cureusmedical.bsky.social.

Read here: https://bit.ly/3LZSmGT

#RareDisease #ISM #Interleukin31

Long-Term Avapritinib Use Sustains Responses in Advanced SM Four-year follow-up demonstrated durable survival, sustained responses, and disease control with first-line avapritinib in advanced SM.

#Avapritinib produced durable survival, demonstrated deep molecular and organ responses, and sustained bone benefits as first-line therapy for advanced #SystemicMastocytosis (SM), supporting long-term disease modification across SM subtypes.

Read here: https://bit.ly/49XipaM

#RareDisease #MedSky

✍️ Finding catharsis through writing

Tara Keith, SM contributor, reflects on the 10-year journey to her diagnosis, her time at the @huntsmancancer.bsky.social, and the healing she’s found by sharing her story.

Read the latest from Tara➡️: https://bit.ly/4qkXGU0

#SystemicMastocytosis #RareDisease

Tryptase May Miss Gastrointestinal Mast Cells in Systemic Mastocytosis Immunohistochemical assessment of CD25 and CD117 more reliably detects gastrointestinal mastocytosis in SM with bone marrow involvement.

Gastrointestinal (#GI) mastocytosis is predictive of #SystemicMastocytosis (SM) involving the bone marrow, but only about one-third of those patients show GI positivity for #MastCells. Study in American Journal of Clinical Pathology.

Read more: https://bit.ly/44pK6Gd

Possible Disparity Between Objective, Subjective Autonomic Disease Burden in SM A major challenge in exploring the presumed link between mast cell activation syndromes and dysautonomia is the overlap of symptoms.

In patients with #SystemicMastocytosis, as well as those with #HereditaryAlphaTryptasemia and suspected #MastCellActivationDisorder, a potential discrepancy exists in their objective and subjective measures of autonomic disease burden severity.

Read here: https://bit.ly/4p7XVAR

Case Report: Incidental Discovery of SM Following Appendectomy A rare case report discussed a patient who was incidentally found to have systemic mastocytosis following appendectomy.

A patient was incidentally diagnosed with #SystemicMastocytosis (SM) following an #Appendectomy, as discussed in a letter to the editor of @MedClinBarc

Read more: https://bit.ly/3Y8lqyo

#RareDisease #MedSky

Bezuclastinib Shows Safety, Symptom Improvement vs Placebo in NonAdvSM Bezuclastinib produced clinically meaningful improvements in SM symptom control and disease biomarkers compared with placebo, according to new research.

Researchers reported the statistically significant superiority of #Bezuclastinib to placebo in patients with nonadvanced #SystemicMastocytosis (#NonAdvSM). Results will be presented at the 67th @ash.hematology.org Annual Meeting and Exposition

Read more: https://bit.ly/4pMy4Pt

#RareDisease #MedSky

Postprandial Illness May Mask Systemic Mastocytosis: A Case Report An unusual case has been reported of a woman with indolent SM who presented with anaphylaxis following consumption of ackee fruit.

A woman with indolent #SystemicMastocytosis presented with #Anaphylaxis following consumption of ackee fruit. Case report in @annalsacaai.bsky.social

Read here: https://bit.ly/4oguPOW

#RareDisease #MedSky #Immunology

Avapritinib Linked to Sustained Improvements in Skin Manifestations of Indolent SM Patients with indolent SM and dermatologic involvement treated with avapritinib saw marked reductions in skin symptoms, skin color, and skin lesions.

In patients with indolent #SystemicMastocytosis (SM), treatment with #Avapritinib has been associated with statistically significant, clinically meaningful improvements in dermatologic manifestations of the disorder. Findings from the #PIONEER trial (#NCT03731260)

Learn more: https://bit.ly/4iqRVS0

New NLP Algorithm Accurately Detects SM Symptoms in Clinical Notes Researchers developed a natural language processing algorithm that can accurately extract SM-related symptoms from unstructured clinical notes.

Researchers developed a well-designed natural language processing (NLP) algorithm that can accurately extract #SystemicMastocytosis (SM)-related symptoms from unstructured clinical notes. Study in JAMIA Open.

Read more: https://bit.ly/4rvOyxh

#MedSky #RareDisease

Systemic Mastocytosis Can Mimic Metastatic Prostate Cancer: A Case Report This report is the first documented case of PSMA expression in systemic mastocytosis, highlighting a potential diagnostic dilemma for clinicians.

A patient with a prostate-specific membrane antigen (#PSMA)-positive PET/CT findings was ultimately diagnosed with #SystemicMastocytosis (SM) rather than metastatic #ProstateCancer, according to a recently published case report.

Read here: https://bit.ly/43tRgJf

#RareDisease #MedSky

Patient With SM Due to Rare KIT Exon 11 Mutation Responds Well to Avapritinib A male child with refractory systemic mastocytosis showed remarkable signs of improvement following avapritinib administration.

A male child with refractory #SystemicMastocytosis (SM) with AML1::ETO+ #AcuteMyeloidLeukemia (AML) showed remarkable signs of improvement following #Avapritinib administration. Case report in Frontier in Pediatrics

Read more: https://bit.ly/3WsYBVx

#RareDisease #SM #AML #Leukemia #MedSky

💜 October 20 is International Mastocytosis and Mast Cell Diseases Day

We’re sharing 5 facts about #SystemicMastocytosis to raise awareness and support faster diagnosis, research, and treatment for those affected.

📖 Learn more: https://bit.ly/3IETvCc

#RareDisease #RareSky #MedSky

Blood Count Abnormalities Predict Poor Outcomes in Advanced Systemic Mastocytosis Leukocytosis, monocytosis, and eosinophilia were consistently associated with advanced systemic mastocytosis, according to a recent study.

Elevated #Leukocyte, #Monocyte and #Eosinophil counts are adverse prognostic indicators in advanced #SystemicMastocytosis, correlating with additional mutations, specific disease subtypes and shorter overall survival. @jacionline.bsky.social

Read more: https://bit.ly/48eJtSO

#RareSky #MedSky

#Seen 🖖 and 🫂 to all cohort members.

Adding tags: #MCAS, #SystemicMastocytosis, #Fibromyalgia #AutisticSensitivites (Yes, they can and yes, they are!)

Feel free to repost & add your own. #VisibilityMatters 🖖

Natural Language Processing Streamlines Clinical Encounter Note Collection in Indolent Systemic Mastocytosis Natural language processing models could help streamline processes within clinical settings.

Natural Language Processing Streamlines Clinical Encounter Note Collection in Indolent #SystemicMastocytosis
@mayoclinic.org #LLMs
www.onclive.com/view/natural...

#Sponsored by: Blueprint Medicines

Tune in to #FAACTsRoundtable #Podcast: Finding Support with #MastCell Diseases

Listen to #FAACT's Ep. 237:
www.buzzsprout.com/848314/episo...

#MastCellDisease #MCAS #Mastocytosis #SystemicMastocytosis #Anaphylaxis #Allergy #FoodAllergy #AllergyAwareness

#Sponsored by: Blueprint Medicines

Tune in to #FAACTsRoundtable #Podcast on Indolent #SystemicMastocytosis - the #Patient Perspective

Listen to #FAACT's Ep. 236:
www.buzzsprout.com/848314/episo...

#ISM #SystemicMastocytosis #Mastocytosis #MastCell #MCAS #FoodAllergyPodcast #Anaphylaxis #Allergy

#Sponsored by: Blueprint Medicines

Tune in to #FAACTsRoundtable #Podcast on Exploring Systemic Mastocytosis (SM)

Listen to #FAACT's Ep. 235:
faactsroundtable.buzzsprout.com/848314/episo...

#MastCell #MCAS #SystemicMastocytosis #Mastocytosis #Allergy #Anaphylaxis #FoodAllergy #ShareTheFAACTs

Systemic Mastocytosis | Chanella Get more from Chanella on Patreon

www.patreon.com/posts/116005... #systemicmastocytosis #chronicbloodcancer #rarecancer #indolentsystemicmastocytosis