September 21, 2021 at 9:00 am #18846Ashley GregoryKeymaster
Good morning my fellow LEMons!
Did you know that studies have been performed to study Anti-SOX1 (Anti-Sry-like high mobility group box 1) antibodies and found that having them present is predictive of paraneoplastic LEMS?
What does this mean?
We can test for Anti-SOX1 antibodies in patients that may not test positive for N-type or P/Q calcium channel antibodies to determine if they have LEMS. We can also test patients with P/Q or N-type antibodies to get a better idea of if there LEMS is caused by cancer. Positive Anti-SOX1 antibodies are “highly suggestive” of paraneoplastic LEMS.
Have any of you been tested for Anti-SOX1 antibodies?
What do you think about this?
Do you think that in the future this antibody test could be offered every 6 months to a year for those patients still undergoing cancer surveillance? Do you think it could replace a PET or CT scan?
October 9, 2021 at 9:42 pm #18934MorganParticipant
Thank you, @ashleygregory757, for this forum post.
I asked my neuro to run this lab and thankfully it came back negative! I am P/Q type antibody positive.
Yes, I think this is a good test to repeat in the future. Correct me if I’m wrong but from what I have read SOX 1 is to detect SCLC (Small Cell Lung Cancer)? If so, I would still get a PET or CT scan to make sure I rule out everything out.
October 12, 2021 at 8:45 am #18942Ashley GregoryKeymaster
Glad you found it useful! 🙂
Glad to hear your SOX1 was negative!
Yes, SOX mainly detects SCLC. Current data still recommends that LEMS patients get “cancer screening” scans (PET/CT) for the first 3 years after diagnosis.
My neurologist did a PET scan and a CT the first year I was diagnosed, and then a follow up of a CT scan yearly. Some neurologists recommend getting scanned every six months, so that part is still up for debate
- You must be logged in to reply to this topic.