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Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLymphomaTeam Member asked a question 💭
Jacksonville, FL

I was diagnosed with Stage 4 Mantle cell lymphoma (bone marrow and all lymph nodes) a year ago. We are watchful waiting as my platelets slowly decrease but at least my lymphocyte count is steady. I also have the TP53 P278H mutation that turns off the tumor fighting gene. Anyone else in the same boat?

February 28 (edited)
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MyLymphomaTeam

How should you approach watchful waiting with stage 4 mantle cell lymphoma when platelets are decreasing but lymphocyte counts remain steady?

Watchful waiting can be appropriate for some people with mantle cell lymphoma, particularly those with indolent (slow-growing) forms. During this approach, your healthcare team Show Full Answer

How should you approach watchful waiting with stage 4 mantle cell lymphoma when platelets are decreasing but lymphocyte counts remain steady?

Watchful waiting can be appropriate for some people with mantle cell lymphoma, particularly those with indolent (slow-growing) forms. During this approach, your healthcare team monitors the disease through regular visits to catch any progression early and start treatment promptly if needed.

Your decreasing platelet count (thrombocytopenia) needs attention, as it can indicate:
- Bone marrow involvement from lymphoma
- Potential bleeding risks
- Need for closer monitoring

Low platelets may cause symptoms like:
- Easy bruising
- Excessive bleeding from minor cuts
- Muscle weakness or pain

While your lymphocyte count staying steady is encouraging, the dropping platelets suggest your doctor should evaluate whether watchful waiting remains the best approach. They may recommend treatment if the platelet decline continues or if you develop bleeding complications.

Keep attending your regular checkups and blood work appointments. These are crucial for catching changes early. If you notice unusual bruising, bleeding, or other new symptoms, contact your oncology team right away rather than waiting for your next scheduled visit.

February 28

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