leptomeningeal headache management question

afoo10027

Hello, my mother is a lung cancer patient with leptomeningeal metastases (LM). She is currently on Osimertinib, which I got for her from India. We are currently being treated overseas. (China)

After she was diagnosed of LM, I found a local self help group of 500+ LM patients. One common complaint I've noticed from members of the group is how their headaches are currently being managed. Excruciating headache is a common feature associated with LM. I know in where we are now and the States, LM headache is often dealt with by subscribing patients to opioid analgesics, tricyclic antidepressants, and/or corticosteroids. Some severe headaches are dealt with by giving patients opioid analgestics through PICC Electronic Analgesia Pump. That's about it, and guess what, it doesn't even remotely solve the problem, many of them still suffer from headaches after the above mentioned measures are taken.

LM patients are a very special and desperate group, their numbers are on the increase due to longer survival periods made possible by modern medicine. Many also commonly suffer from loss of vision, voice, and other sensory degradations/losses. It is an absolutely horrifying disease. Although due to the limited amount of research and literature available on LM, I find it extremely difficult to find any helpful information to manage their headaches. I am not even asking for longer survival for these patients at this point, but simply how to better manage their headaches. I am shaken to the core after I realize how limited the amount of support is available for LM patients. Clinical trials largely bypass/discriminate this group of patients due to their usually poor prognosis. But an increasing amount of these patients can now make it to their 5, 6th years or even longer (google Valerie Harper in case you aren't aware). The only noteworthy research made on LM in recent years is a finding published in 2017 by a MSK researcher named Adrienne Boire. But even her findings are still way too far from making drugs targeting LM a reality. There really shouldn't be any reason why this group of patients are left to suffer from headaches before they die, or anyone for that matter. So dear friends, if you know of anything I don't know already, PLEASE share. Thank you.

-- Alex