unexplained, untreatable nausea and headaches - 1267601

Tue, 12/16/2014 - 17:09

My husband was dx with Stage IV NSCLC in May (never smoker, PIK3CA mutation) and did really well on treatment. He finished chemo in late Sept and his mets had disappeared and the primary tumor shrunk to less than 4cm (it was like a softball). However, ever since October he has suffered from untreatable nausea. It started as light annoying nausea and now he vomits throughout the day, even if he hasn’t eaten. It seems to hit him in waves throughout the day and those waves have been getting gradually worse. About a week ago he started getting headaches, vertigo and then three days ago, difficulty moving his mouth muscles to talk (he says). During the attacks is is almost like a seizure and he cries out and is in great mental anguish. Again, it comes in waves. Drinking some juice or eating a cracker seems to slightly reduce the psychological symptoms but not the nausea.

The oncologist has tried about 6 different nausea medications, none effective. He had a CT scan and MRI two weeks ago but the radiologist didn’t report anything unusual in his brain, just more shrinkage of his primary lung tumor and no tumors anywhere else in his body.

We’re so frustrated, and scared. I’m worried about leptomeningeal metastases and mentioned it to the oncologist. He then made a referral for us to go down to the city to get a more high powered MRI at UCSF, where my husband had gamma knife on his brain mets in September. I’m still waiting for an appointment to be scheduled, and from past UCSF expereience it could be a couple weeks (plus Christmas is coming up).

Should we insist on a lumbar puncture to look for lepto? Or do you have any other suggestions for other causes of these symptoms that would not show up on a normal MRI?


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Hi mamasan,

I'm very sorry to hear of your husband's symptoms. A lumbar puncture can sometimes detect the presence of cancer cells in the cerebrospinal fluid, but in many instances it is non-determinative and often produces false negatives.

Perhaps an appointment with a neuro-oncologist would be helpful.

Forum moderator

Dr West

I'm sorry to hear about his difficult symptoms. I think it would be reasonable to suggest a lumbar puncture; the problem, though, is that there just isn't an identified effective treatment for leptomeningeal carcinomatosis if you find it, with the exception of people who have an activating EGFR mutation and can sometimes do well, at least for a while, with "pulsed" Tarceva given at a high dose once every 4-7 days.

So I think the key is to ask what the value is of finding a definite diagnosis if there isn't an effective treatment to pursue based on that answer. You could say that it would be very reassuring to get a result that shows no cancer, but that is sometimes a false negative...we sometimes don't find cancer cells until one or more additional lumbar puncture procedures have been done. Still, if you think the information would be helpful, it's a very reasonable request.

Good luck.

-Dr. West