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Living with cancer· Appointment prep

Appointment sheet: Systemic mastocytosis

One page to bring and write on: your details, the questions for Systemic mastocytosis plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Systemic mastocytosis

Prepared with OnCo (onco.cc/prep/systemic-mastocytosis/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

17 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example Serum tryptase, KIT D816V by high-sensitivity ddPCR in blood, Marrow mast cell aggregates with CD25, CD2, CD30 expression, C-findingsdefining advanced disease, SRSF2, ASXL1, RUNX1mutations; MARS and IPSM prognostic scores), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Indolent SM, symptomatic
  1. 5.For my situation (indolent sm, symptomatic), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Avapritinib, and what side effects should I expect?
Advanced SM, first line
  1. 7.For my situation (advanced sm, first line), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Avapritinib, Midostaurin, and what side effects should I expect?
Advanced SM, subsequent lines
  1. 9.For my situation (advanced sm, subsequent lines), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Cladribine, Midostaurin, Avapritinib, and what side effects should I expect?
SM-AHN
  1. 11.For my situation (sm-ahn), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Azacitidine, Avapritinib, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Avapritinib, Allogeneic stem cell transplantation, Elenestinib?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “Avapritinib carries intracranial bleeding risk at low platelet counts and cognitive effects; bezuclastinib and elenestinib are designed to avoid them”. How does that affect my plan?
  5. 17.I read that “The associated neoplasm in SM-AHN, not the mast cells, usually determines survival; combination strategies with hypomethylating agents and transplant are being studied”. How does that affect my plan?

The words I may hear

Tests and results to bring

Biomarker results to ask for: Serum tryptase (adjusted for hereditary alpha-tryptasaemia), KIT D816V by high-sensitivity ddPCR in blood (allele burden tracks response), Marrow mast cell aggregates with CD25, CD2, CD30 expression, C-findings (cytopenias, liver dysfunction, hypoalbuminaemia, malabsorption, lytic bone lesions) defining advanced disease, SRSF2, ASXL1, RUNX1 (S/A/R) mutations; MARS and IPSM prognostic scores, Platelet count (avapritinib eligibility in AdvSM).

Scans and tests linked to this cancer: Histopathology & immunohistochemistry, Liquid biopsy (ctDNA), Multiparameter flow cytometry MRD.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

  • Indolent SM, symptomatic: H1 and H2 antihistamines, cromolyn, leukotriene antagonists, omalizumab for anaphylaxis, epinephrine autoinjector, bone protection; avapritinib 25 mg daily for moderate to severe symptoms uncontrolled by these (PIONEER). (Avapritinib)
  • Advanced SM, first line: Avapritinib 200 mg daily (platelets above 50 x 10^9/L) as preferred agent; midostaurin as alternative or where platelets are low. (Avapritinib, Midostaurin, KIT, Small-molecule kinase inhibitors)
  • Advanced SM, subsequent lines: Switch between avapritinib and midostaurin; cladribine; clinical trials (bezuclastinib, elenestinib); allogeneic transplant for mast cell leukaemia or high-risk SM-AHN. (Cladribine, Allogeneic stem cell transplantation, Midostaurin, Avapritinib)
  • SM-AHN: Treat the dominant component: KIT inhibitor for mast cell burden plus the standard therapy for the associated CMML, MDS or AML (hypomethylating agents, intensive chemotherapy, transplant). (Azacitidine, Allogeneic stem cell transplantation, Avapritinib)

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call