My Dad was diagnosed with NSCLC back in April 2014, he was found to have he EGFR mutation and so started on Gefitinib (Iressa) in May. He seemed to respond well and was almost back to his normal active self. However, within 3 or 4 weeks of being on Iressa he started to show confusion and memory loss. At first this was put down to a change in steroid dose and the first CT scan showed that the tumours (lung, small one in brain and tiny one on hip) had shrunk. The oncologist was pleased with results.
However there was a severe worsening of the memory loss and confusion and overall health until 4 weeks later he is a shadow of the person he was, very weak, tired, can't remember anything 5 minutes later, confused, no balance.........he has been taken off the Iressa and an MRI ordered.
Only other idea the doctors can come up with is a rare auto immune response to the cancer and so blood test for anti-gens ordered.
Does anyone else have similar experiences or any ideas? The doctors seem baffled and just say sorry they don't know what is causing this. But he has no quality of life now and its very worrying the memory loss etc might be irreversible or just get worse and worse.
Reply # - July 31, 2014, 06:14 AM
Reply To: Memory loss and confusion on Iressa
Hi rhnorth and welcome to Grace. I'm so sorry your dad is experiencing such a difficult situation.
There's been an explosion of experience and talk about the type of situation you've explained, people who have done well on TKI then progress. Below is a link to what experts in the field are doing. Too I'll ask one of our specialists to comment. She is one who is leading research and thought in this very field so may be of distinction when your dad and maybe you discuss treatment options with his doctors.
From your description it sounds like there's a possibility the brain tumor caused swelling and when the steroid was discontinued the swelling returned and caused symptoms. There are focal treatments for just one brain tumor and wbr.
I hope your dad finds relief from these symptoms soon,
Janine
Reply # - July 31, 2014, 06:18 AM
Reply To: Memory loss and confusion on Iressa
Forgot the link, http://cancergrace.org/lung/2013/01/23/acquired-resistance-algorithm/
There is much more written on the subject so please don't hesitate to ask for help finding it if needed.
Reply # - July 31, 2014, 06:42 AM
Reply To: Memory loss and confusion on Iressa
rgnorth,
I'm very sorry about his diagnosis and his recent problems.
The leading concern would be that this might represent leptomeningeal carcinomatosis (LMC), which is spread of the cancer into the "cerebrospinal fluid" (CSF) that bathes and cushions the brain and spinal fluid. This complication, uncommon but not rare in lung cancer, is among the most dreaded because it can be associated with a wide range of neurologic symtoms, often progresses rapidly (over days to weeks), and is notoriously difficult to treat.
LMC is sometimes seen on MRI but is also a challenge to diagnose definitively in many cases. The definitive way to diagnose it is to do a lumbar puncture ("spinal tap") to remove CSF with a needle between two lumbar vertebrae, looking for cancer cells in the fluid. However, sometimes cancer cells can't be seen, even when LMC is really the diagnosis, and it may just take extra lumbar punctures to find them. That said, you don't always do multiple procedures, as they can be uncomfortable and may not yield a clear answer even after 2-3, so sometimes we just work with a presumptive diagnosis.
Although there is no clearly established treatment, patients with an activating EGFR mutation have a fair chance of having their LMC respond, at least transiently, to "pulsed" Tarceva (erlotinib), given as 4 tablets (600 mg) by mouth once every 4 days. Those high doses can potentially get through the "blood-brain barrier" and into the CSF to help treat LMC.
I should underscore that all of this discussion is about a complication your father hasn't been found to have. I would just consider LMC to be the most concerning potential explanation for his symptoms.
Good luck.
-Dr. West
Reply # - July 31, 2014, 09:11 PM
Reply To: Memory loss and confusion on Iressa
Dear rgnorth
My wife, Beth, also had metastatic NSCLC with mets to bones, liver and brain. She was also EGFR positive. After 7 months treatment with Tarceva she developed headaches, weakness and unsteady gait. A lumbar puncture confirmed LMC. After the diagnosis we began pulse dosing her. As Dr. West says LMC is a possibility based upon the symptoms described, but it can be difficult to diagnose even with a lumbar puncture. I hope for your dad's sake and your family that he does not have this complication but I would certainly recommend exploring this avenue. If you have any questions about symptoms please read my thread or ask. I would be happy to assist in any way I can. God luck and my prayers are with your family.
Bob