Paraneoplastic neuropathy?: I have been... - The Roy Castle Lu...

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Paraneoplastic neuropathy?

Neil-SueD profile image

I have been on Gefitinib successfully for 15 months now, but have recently started to experience a sporadic discomfort in my midriff region. It's difficult to describe, but feels rather like a tightening or straining of the muscles there. I experienced similar to this prior to starting on Gefitinib when the lung cancer had returned about 18 months after having the upper left lobe removed after my first lung cancer diagnosis and surgical treatment. Through my own online research, I am of the opinion that this discomfort is paraneoplastic peripheral neuropathy, although the oncologist rather played this down when I made the suggestion prior to being prescribed Gefitinib after proving positive for the EGFR mutation. I have never had chemotherapy and so any neuropathy is NOT caused by chemo. The neuropathy I have experienced has also caused numbness or tingling in my legs, hands and feet, although the midriff discomfort is strongest and at times rather debilitating. My concern is that the Gefitinib is no longer working. I am due my next CT scan in about a month's time and will raise these concerns with the oncologist when I see them next week regarding the next monthly consultation and review of Gefitinib prescription renewal.

Has anyone else experienced this type of disease progression or even the same neuropathy symptoms as me? Apart from this, I have luckily never really had any major symptoms of having lung cancer as only scans have ever shown anything to be wrong.


5 Replies
RoyCastleHelpline profile image

Dear Neil

Sorry to hear about the symptoms you are having; I have placed a link below from Macmillan cancer support on peripheral neuropathy (which can involve the nerves from the digestive tract) and can be caused by some anti-cancer drugs.

This link is an informative article about paraneoplastic peripheral neuropathy

It is great that you have been well on Gefitinib for 15 months, and hopefully your next scan will show some good results for you.

You could perhaps discuss this with your lung cancer nurse specialist prior to your Oncologist appointment.

Our free nurse led helpline number is 0800 358 7200 if you wish to chat about anything.

All the best

The Roy Castle Support Team

Thank you for such a quick response and contact details! I am familiar with the BMJ article as it is the one I have used to draw the likely connection between my cancer and the unusual feelings. Interestingly, my original cancer specialists and a neurologist did not comment about a likely link despite me questioning it.


Hi Neil,

I had surgery (left upper lobectomy) in Dec 2010 and also experienced pins and needles/pains in rib cage, arms/hand and feet a few years later. Occasionally I get sharp pain/spasm around left rib cage (especially when bending) even now and put this down to nerve damage from the major surgery (open thoracotomy) One of these experiences was in my left hand/arm (following a hospital stay in June 2015) was found to be a trapped ulna nerve which was suspected to be caused by a return of the lung cancer. Thankfully in my case it wasn't and I ended up with surgery to reposition the ulna nerve as it was badly affecting the hand with which I write, change gear, etc etc. Following hospitalisation earlier this year with chest infection, I have again experienced more painful spasms in my hand/arm but have been told it is likely to be side effects of the various drugs I was put on. I'm no longer on them (apart from inhalers and montelukast) and the symptoms have decreased considerably. Just letting you know that it may not be sinister - sometimes our heads can't help themselves going to that place after our diagnosis - but do hope you get sorted out soon. I would not have believed the amount of pain I had both in 2015 and this year. I was put on amitriptilyne when it first occurred but couldn't got on with this medication. I too did not have chemotherapy so at first my doctor was somewhat dismissive but worth persevering as the physiotherapist told me post surgery that the trapped nerve I had deteriorates quickly. It took almost 18 months to recover full action in my hand/arm.

Neil-SueD profile image
Neil-SueD in reply to JanetteR57

Hi Janette,

Thank you for your response and sharing your experiences. You've had a lot to cope with. You're so right about our heads going to "that place". Your surgery sounds more difficult than mine was, but the good news for others is that it's now quite some time since your operation and that is a very positive thing to hear if you've recently been diagnosed, understandably worried and in the position of facing major surgery for a serious condition as is the case with lung cancer of course. I had a VATS procedure and it was as trouble free as I could possibly have hoped, as was recovery. Fingers crossed about what the future holds ... for all of us!


Too true. I consider myself very fortunate as many do not even have the chance of surgery. I now undertake advocacy and cancer research roles almost in memory of those no longer with us and on behalf of those unable to speak up for themselves. Hope your neuropathy is resolved before too long.

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