My mother has NSCLC which has spread to her bones, she was on Tarceva but our doctors took her off it 4 days ago as her skin was beginning to blister quite badly.
Prior to beingon Tarceva, she would groan all day and night, very loudly. She was hospitalised and the pain control team took her through all the painkillers and settle on Naprxen which I thought had worked. She was also given Tarceva at the same time and as soon she she had it she began walking, we went on holiday and she was like her old self despite her advanced stage.
Now that she is off the Tarceva, she sits with her eyes closed the whole time, groaning. She won't talk to us, won't answer any questions and I have to force her to take her medication. I've managed to get her to tell me that she isn't in pain. All she can say is she 'doesn't feel good' and that she hasn't got pain. She says she feels weak and tired and groans virtually all day and all night.
If she isn't in pain then and she can't explain what is causing her to groan I don't know what to do. Our doctors have run out of options, they've tried all the painkillers going, but she is saying she isn't in pain.
I'm so worried, I can't eat or sleep. I wondered if anyone else has had this experience and if they can tell me what she is feeling. Our doctors are stumped and they can't help as she can't explain it, and they are good doctors. They say they will have to leave her like that for a few weeks and review whether they can put her back on the tarceva but the blistered skin was very bad.
Help!