Strange neurological symptoms while on immunotherapy trial - 1268642

tkirzhner
Posts:18

Hi
I am in my first month of immunotherapy trial
(MEDI 4736 phase 1/2). Only had one infusion.
This week a strange episode happen to me. Part of my tongue,
left cheek and than fingers in left hand went numb for about 10 -15 minutes.
Immediately after this episode I went to urgent care unit in my
Cancer Center where they admitted me to the hospital,
run all tests ( MRI, ct, echocardiogram, encephalogram).
My CT and MRI were clear, as for the other tests- no reports yet.
However they discharged me from the hospital next day so I assume by now
nothing serious. They thought TIA and prescribed aspirin and plavix.
Yesterday I had the same copycat episode at the same time and same place.
Does this happen to anyone else who is on immuno trial?
Can this be a sign of progression?
I feel ok otherwise - just some fatigue.
Thank you.
Lifos

Forums

JimC
Posts: 2753

Hi Lifos,

I'm sorry to hear you're having these concerning symptoms. Since scans showed nothing it seems less likely that this represents cancer progression than perhaps side effects of your treatment or some other cause. As you can read in this post by Dr. West, immunotherapies can cause neurological side effects, and the only way to try to make that connection would be to hold the drug to see if the symptoms resolve.

In any event, although you properly went to urgent care and ultimately the hospital, you will also want to report these symptoms to your trial doctors to see if they have seen similar reactions and get their recommendations.

JimC
Forum moderator

tkirzhner
Posts: 18

Hi Jim
Thank you for your prompt response!
My immunotherapy nurse said that they see bilateral neurological side effects
Unilateral she thinks is not related to the treatment.
I was wondering if anyone else reported similar episodes
on cancer grace. Although it resolves quickly it scares and makes me wonder...
Thanks again.

catdander
Posts:

Lifos,

I'm sorry but I don't have anything to add about why this is happening.

I wanted to stress the importance of letting your team (on and off the trail healthcare providers) know each time it happens. At least until they tell you to stop. ;)

Janine