Neurological effects of ...

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My husband was taking oral chemo (inlyta) for 5 weeks for kidney cancer tumours between his heart and lungs and then had a devastating neurological event.  It was initially diagnosed as stroke, then treated as encephalitis, then lumbar puncture and MRI results eventually were clear and, by that time, he had made a fairly good recovery so was discharged from hospital.  The oral chemo was stopped straight away after the event and as a consequence, he feels a lot better in himself physically.  I am noticing cognitive impacts of the event however (more than the 'chemo brain' which was evident before).

Immunotherapy has been suspended along with the inlyta until we see the oncologist next month.  In the meantime, I feel cast adrift.  The tumours were shrinking with the treatment (one of the emergency scans showed this) but the treatment has stopped now.  What might happen next?  

  • Dear OptomisticSnail

    Hello and welcome to our online community here at Macmillan, we hope you find it a supportive place to visit. My name is Gemma and I’m one of the Cancer Information Nurse Specialists at the Macmillan support line.

    I’m sorry to read of how ill your husband has been during his treatment for kidney cancer. I appreciate just how worrying and upsetting it can be to see a loved one so poorly.

    You mention that the ‘cognitive impacts’ of the event are noticeable. If theses are worsening, or have not been fully assessed, please do have your husband reviewed by his GP as soon as is possible. You may not be aware that you can call 111 for assessment, even during GP opening hours if his GP is unable to make an appointment for today.

    It’s completely understandable that you would want to know what might happen next. While we are not able to know exactly; I do hope the following information offers you some reassurance while you wait to find out your husband’s personal treatment plan.

    The local kidney cancer MDT (Multi-Disciplinary Team) will likely discuss his treatment options at their next meeting. Treatment decisions balance the benefit against the potential risks of treating the cancer and may largely depend on both your husband’s current fitness for treatment and how likely it is that he may become seriously unwell again.

    Sometimes treatment is suspended to allow the person to recover and heal enough to continue with treatment of some form.  A period of time off allows the hospital team to see whether your husband recovers some of his strength and fitness to continue; this might help them when considering future side effect risk. Your husband may like to contact his hospital team to ask whether there is anything he should or shouldn’t do during this time to aid his recovery, and hopefully increase his chance of being fit for more treatment.

    Your husband’s MDT may consider reducing the dose of one or both of the treatments, changing one of the medications, or offering different supportive medications to allow your husband to continue on this line of treatment.

    Axitinib (Inlyta®) is a tablet form of targeted therapy which inhibits cancer cell growth; it belongs to a family of medication known as TKI’s (Tyrosine-Kinase Inhibitors). There are several different TKI’s licensed for use with kidney cancer, and also available through clinical trials. The MDT may discuss whether a different TKI is likely to be an option in your husband’s situation.

    It may help to prepare your questions for when you see your husband’s oncologist next month. So that you feel confident that you manage to cover everything you need to ask and know.

    Information that is coming through the research environment is the link between a person’s gut microbiome and both the effectiveness, and side effects of immunotherapy in the individual.  This may be something to bring up at your husband’s next appointment to see whether it is useful for him, or not.

    Supporting a loved one with cancer can cause a wide range of fears and for all of you. Please do your best to look after your emotional and physical well-being; If there is anything we can do to support you too please do get back in touch.

     With kind regards,

    Gemma J, Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.