Jeanne unfortunately it was so advanced. He received palliative and then hospice care. He lived about four months. 🙏🙏
May 17
Thank you for your reply. What was the treatment? How long did the person live?
May 15
It is very rare. We did have a support group member who had it go to the brain. 🙏🙏
May 15
It's understandably worrying to think about myeloma spreading to the brain. The good news is that this is quite rare — only about 0.7% of people with myeloma experience this. When it does happen, it's referred to as central nervous system (CNS) involvement.
Symptoms to watch for include:
- Headaches
- Dizziness
- Vision Show Full Answer
It's understandably worrying to think about myeloma spreading to the brain. The good news is that this is quite rare — only about 0.7% of people with myeloma experience this. When it does happen, it's referred to as central nervous system (CNS) involvement.
Symptoms to watch for include:
- Headaches
- Dizziness
- Vision problems
- Confusion or memory issues
- Weakness on one side of the body
- Seizures (rare but serious)
If any of these occur, it's important to contact a doctor right away. It's worth noting that myeloma can also affect thinking and memory without actually spreading to the brain. This can happen due to:
- "Chemo brain" — a side effect of certain treatments
- High calcium levels in the blood
- Abnormal proteins interfering with blood flow
These are more common than direct brain involvement and are often manageable with the right care. Treatment for CNS myeloma involvement is highly individualized, so a specialist — ideally a myeloma expert — would be the best person to guide those decisions. Treatments may include radiation therapy, targeted medications, or adjustments to existing treatment plans.
Connecting with others on MyMyelomaTeam who've had similar experiences can also be a great way to hear firsthand accounts of what others have been through and how their care teams responded.
May 13
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