The Comprehensive Roadmap for Patients
From Month 1 to Year 15
Navigating treatment can feel overwhelming, but understanding what to expect at each stage can help you feel prepared and supported. This roadmap outlines typical milestones, from the initial treatment phase through long-term recovery. Every patient’s journey is unique, and your care team will tailor these steps to your needs.
Stage 1 — First Steps: Learn & Explore Treatment Options
(0–3 months)
Understanding your options, assessing the treatment risks, and determining your eligibility before making decisions about "curative" therapies.
Questions to ask your team
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Am I a candidate? What tests determine eligibility?
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What are short- and long-term risks (fertility, organ effects, GVHD, etc.)?
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What does success look like for my specific case?
Who can help
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Your hematologist / transplant center coordinator
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Transformative Therapy Navigator for one-on-one guidance
Stage 2 — Decision & Planning
(1–3 months)
Confirm your therapy option (clinical trial or standard of care treatment), discuss fertility preservation, and map out the logistics around your treatment option.
Next Steps
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Map out your appointments, tests needed, and travel itinerary.
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Discuss fertility preservation and psychosocial support with your providers.
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Identify a suitable caregiver and make arrangements (time off work, transportation, housing near center, grocery needs).
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Checkout our Story Bank to hear lived experiences from those who’ve gone before you.
Stage 3 — Treatment Window (Day 0 → Discharge)
Safely navigate the treatment period with clear support networks on both the healthcare and personal side
Next Steps
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Maintain a treatment-day binder: contact list, medication list, emergency plan.
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Use care-navigation worksheets to track meds, labs, and symptoms.
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Ensure clear handoff plans between inpatient team and outpatient follow-up.
Practical Tips
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Ask for written discharge instructions and red-flag symptoms to watch for.
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Confirm follow-up schedule (visits, labs, immunizations).
Who Can Help
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Transplant team / clinical nurse navigator
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Our Survivor Circle can offer emotional support and immediate peer connections
Stage 4 — Early Recovery
(0–6 months post-treatment)
Stabilizing the patient medically, monitoring any initial post-treatment side effects, while assessing emotional and identity shifts that need to be addressed.
Next Steps​
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Join Survivor Socials and sign up for Wellness Lab sessions focused on rest, nutrition, and mental health.
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Work with peer mentor via Survivor Health Match for practical tips on fatigue, energy pacing, and social reintegration.
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Track symptom changes and keep routine follow-up visits with your clinic or transplant center.
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Wellness focus
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Gentle physical activity plan (per clinic guidance)
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Mind-body modules (pain reprocessing therapy, ACT, meditation) offered by the Wellness Lab.
Stage 5 — Mid-Term Survivorship (6–24 months)
Rebuilding your daily routines — work, family life, and identity — while monitoring short and long-term health outcomes.
Next Steps
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Update your medical summary and ensure it is shared with your primary care provider and local healthcare team.
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Participate in peer support groups like Survivor Circle to help process feelings of survivor's guilt or other identity changes.
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Engage in research and data collection opportunities through our Education & Research Collaborative, if interested in contributing to long-term follow-up clinical data.
Stage 6 — Long-Term Thriving (3 - 15years)
Living your life fully and using your voice as an advocate — mentoring others, contributing to research, and helping to reshape post-treatment survivorship.
Next Steps (Optional)
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Join our Sickle Survivor database and become a peer mentor.
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Submit a video diary for the Story Bank to amplify your experience and help providers better understand unmet patient needs.
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Explore leadership or advocacy roles (community education, speaker opportunities on panels or podcasts).
