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Neuropathy

Tupelohoney
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Oxaliplatin neuropathy starting early — what can be done?

My husband is receiving CapOx (oxaliplatin and capecitabine) plus trastuzumab (Herceptin) for HER2-positive oesophageal cancer. He has now had two cycles.

After his first treatment, he developed soreness and discomfort in his feet around day 12. After the second cycle, the symptoms appeared much earlier, around day 5. His feet can become red, hot and painful after even a short walk, and he is now noticing symptoms in his fingertips too.

The hospital has examined his feet and said they look fine, but he is definitely experiencing discomfort.

We’re worried that this will progressively get worse with each cycle. What options are there for managing or preventing oxaliplatin neuropathy? Can the oxaliplatin dose be reduced or changed if symptoms are already developing, and does this necessarily mean stopping his cancer treatment?

Could this be neuropathy, hand-foot syndrome from the capecitabine, or possibly a combination of both?

I’d also be interested to hear from anyone who has experienced something similar with CapOx and trastuzumab, particularly whether their symptoms improved after treatment.

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    Hello,

    yes l get the oxaliplatin workover.By cycle 4 l could hardly walk and my hands had difficuty gripping.l was receiving treatment on an offshore island with consultant mainland based.Unfortunately he retired and a locum took over who was reluctant to lower the dose. As a result l finished the last two cycles on a full strength dose which left me with neuropathy in both hands and feet.

    The hands recovered after a year, the feet are permanent. It took two years to stop tripping and falling over,and three years for my control centre to stop constantly informing me that they hurt. We have now lived with each other for twelve years and l regard them as the fee for paid up membership of life.

    l had a stage 4 diagnosis ,bowel and liver surgery just in the nick of time, with pre and post chemo and radio,all things considered hitting my invader hard led to a better outcome than the alternative.At the time l felt l was going through misery and to ease back and give the advantage to my foe for the sake of feeling slightly less miserable seemed like a job half done is no job done at all,so no neuropathy or no cancer

    Your husbands timings would match my experience, so yes it would appear to be neuropathy, but for most it will ihave mproved by six months after treatment.Keep your team updated at each cycle

    David

  • Hi Tupelohoney and thank you for your post. 

    I am so sorry to hear about your husband’s situation, this must be such a difficult time for both of you.

    What you describe could be caused by oxaliplatin-related neuropathy, capecitabine hand-foot syndrome, or a combination of both.

    Oxaliplatin can cause tingling, numbness, pain or altered feelings in the fingers and toes. Hand-foot syndrome can cause redness, heat, tenderness and soreness of the hands and feet, especially after walking or pressure on the skin. 

    Before each treatment, your husband should have a check-up with his cancer team. The team should also check how much his symptoms are affecting him. Peripheral neuropathy is usually graded.

    Although the link is for myeloma the grade and management of peripheral neuropathy are the same for any type of cancer. 

    Management for peripheral neuropathy, depending on the grade,  can sometimes be to reduce the oxaliplatin dose, delay treatment for a short time,

    or make other changes to help manage the symptoms. Developing neuropathy does not automatically mean treatment has to stop.

    It is important that your husband tells the doctors how his symptoms are affecting his daily life.

    This will help them understand how severe his symptoms are and make sure they are assessed correctly.

    We have advice on tips to cope with nerve changes on our website.

    Many people find that oxaliplatin-related nerve symptoms improve after treatment finishes, although recovery can be slow and some symptoms may take months to settle.

    Hand-foot syndrome also usually improves when treatment is reduced, delayed or completed.

    Please get back to us if you need any more information or support

    It might help to talk things through with one of our nurses on the helpline. You can call for free on 0808 800 4040, Monday to Friday, 9am to 5pm.

    I really hope you’re able to get some clarity and reassurance soon.

     Kind regards

    Tina

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