Two different neuropathies
- Acute (the first 2-5 days of each cycle): cramps and tingling triggered by cold in the hands, feet, mouth and throat; sometimes a feeling of not being able to swallow when drinking something cold. It is unpleasant but goes away on its own and leaves no lasting damage.
- Chronic or cumulative: appears after a certain total dose (around cycles 6-8), is persistent, does not depend on cold, and can progress to loss of feeling, loss of fine control (doing up buttons, writing) or pain. This is the one worth preventing.
What protects most: speaking up in time
The only measure with proven effectiveness for avoiding severe, permanent neuropathy is reducing the dose or pausing oxaliplatin as soon as the tingling becomes persistent (what doctors call "grade 2"). In metastatic disease the stop-and-go strategy (OPTIMOX study) is common: oxaliplatin is withdrawn for some months while 5-FU continues and, if needed, is reintroduced. In the adjuvant setting, for low-risk stage III, 3 months of CAPOX are as effective as 6 and cause far less neuropathy.
Do not wait for your next appointment: mention it as soon as it starts. Many people keep quiet for fear of having treatment taken away; in reality, the earlier it is adjusted, the more treatment you can complete.
Practical measures
For acute (cold) neuropathy
- Gloves for the fridge and freezer; a scarf over your mouth if it is cold outside.
- Drinks and food at room temperature for the first 5 days of the cycle. No ice cream or ice.
- Lukewarm water for washing your hands and face.
For chronic neuropathy
- Exercise: walking, balance and gentle strength work. It is the non-drug measure with the best data for reducing symptoms.
- Safety: beware of burns (you do not feel heat well), watch where you step, closed shoes, a light on when you get up at night.
- Neuropathic pain: duloxetine is the only drug that guidelines (ASCO, ESMO) recommend with evidence. Gabapentin/pregabalin and creams are used, but with less proof. Do not self-medicate: ask for it at your appointment.
- What has not been shown to prevent it: vitamin E, intravenous calcium and magnesium, glutamine, acetyl-L-carnitine (which may even make it worse). Do not spend money or hope on them.
- Some hospitals try cooling or compression of the hands and feet during the infusion (more studied with taxanes than with oxaliplatin); ask whether they offer it.
Does it recover?
In most people the neuropathy improves within 6-12 months of finishing oxaliplatin, although it can worsen slightly in the first 2-3 months after the last dose (the "coasting" phenomenon). Some patients are left with a degree of permanent tingling or numbness, especially if a high cumulative dose was reached.
What to ask at your appointment
- What grade of neuropathy do I have, and what is the plan if it gets worse?
- Can I do 3 months instead of 6, or pause oxaliplatin and keep the rest?
- Do you recommend duloxetine or another treatment for the pain?
- Is there rehabilitation or physiotherapy for neuropathy at the hospital?