What should I bring to my first Mantle Cell Lymphoma appointment

What to Bring to Your First Mantle Cell Lymphoma Appointment

Here's a practical checklist to help you prepare for your initial consultation:

[ID removed] & Test Results

Essential documents:

• Any pathology reports (biopsy results that confirmed your MCL diagnosis)
• Lab work results (CBC, metabolic panel, LDH levels)
• Imaging reports (PET/CT scans, CT scans with contrast)
• Previous bone marrow biopsy results (if you've had one)
• Any genetic testing results (TP53 sequencing, Ki-67 proliferation fraction, SOX11 status)

Why this matters: According to NCCN Guidelines for Mantle Cell Lymphoma, your oncologist will need to review specific diagnostic tests including immunophenotyping, Ki-67 proliferation fraction, and TP53 mutation status to determine your disease stage and prognosis. Having these results available speeds up your evaluation.

Personal Health Information

• Insurance card and photo ID
• List of current medications (including supplements and over-the-counter drugs)
• Allergy information (especially drug allergies)
• Family history of cancer (if relevant)
• Hepatitis B and C test results (if available) — NCCN Guidelines note that hepatitis testing is essential before starting immunotherapy or chemotherapy

Questions & Notes

• Written list of symptoms you've experienced (fatigue, night sweats, weight loss, swollen lymph nodes)
• Questions you want to ask (see suggestions below)
• Notebook or device to take notes during the appointment
• Contact information for your primary care doctor

Questions to Ask Your Oncologist

Based on NCCN Guidelines for Mantle Cell Lymphoma, consider asking:

1. "What is my disease stage and what does that mean for my treatment?" (Stage I/II vs. Stage III/IV affects treatment approach)

2. "What are my specific biomarkers, and how do they influence treatment options?" (Ask specifically about TP53 mutation status, Ki-67 proliferation fraction, and SOX11 status — these determine whether you're classified as "classical" or "indolent" MCL)

3. "Am I a candidate for aggressive induction therapy, or would a less aggressive approach be better for me?" (NCCN Guidelines outline different pathways based on fitness and disease characteristics)

4. "What are the treatment options available, and what do you recommend?" (Options range from active surveillance to chemotherapy combinations like RCHOP, ibrutinib-based regimens, or other approaches)

5. "What are the potential side effects, and how will we monitor for them?"

6. "Do you recommend any clinical trials for my specific situation?"

7. "What is the follow-up schedule after treatment?" (NCCN Guidelines recommend clinical follow-up every 3-6 months for 5 years, then annually)

Optional but Helpful

• Bring a trusted friend or family member to help you listen and take notes
• Calendar to schedule follow-up appointments
• List of pharmacies you use (for medication coordination)

Before You Go

• **Request your complete [ID removed] from any previous providers at least a week before your appointment
• Write down your performance status — how well you're functioning day-to-day (able to work, limited activities, mostly in bed, etc.)
• Note any B symptoms you've had: fever, night sweats, unintentional weight loss

---

Pro Tip: If you don't have all your records before the appointment, don't worry — your oncology team can request them. But having them available helps your doctor make more informed recommendations during your first visit.

This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.