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LEMS Antibodies
Good morning all!
There was an interesting article yesterday posted on Lambert-Eaton News, Titled “LEMS Patient Positive for Cancer Marker, But Shows No Sign of Tumor.”
The article talks about an antibody called Type 2 antineuronal nuclear antibody (ANNA-2), which is typically associated with cancer. This antibody was found in a LEMS patient who underwent malignancy testing for two years, but no malignancy was ever found. They are continuing to monitor the patient for malignancy for the next two years, although most patients with paraneoplastic antibodies for LEMS are recommended to be monitored for two years.
But this brings me to another thought… How many of us have other antibodies not related to LEMS? And could they possibly be related to our LEMS, like in this patients case.
What do you guys think?
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6 Replies
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I saw that article as well. It was interesting. I know that out of every test they ran on me (almost $10K in labs), the only one I tested positive for was the VGCC antibody (which was done almost 6 mths later at my suggestion). And without looking through each lab, the only thing I’m sure that they were looking at were autoimmune diseases.
Let me digress for a short story. About a month ago, a dear friend of mine lost her father-in-law. He had symptoms like we all do but no one ever tested him for LEMS. He started having a difficult time breathing and after having a CT, they found he had a tumor in his lungs. Of course, they sent him to an oncologist. Here is where it gets interesting. Apparently, this doc told my friend that he had LEMS and wish that he had been referred to her earlier.
But, this is my point…most oncologist will not see a patient until a tumor presents in the body! And I’m not sure any tests are run for other antibodies that may be related to LEMS, such as CA. I am very blessed to have a PCP and a neurologist, that although they had never had a LEMS patient before, they have been great in exploring the disease, treatments, and prognosis along side of me and they have taken my input on how I want my treatment to go. Only one difference and that is on the CT/PET scans. I have read articles that encourage scans every 3 months for first 2 years and then every 6 months for 3 years, which is what I want done for myself. My current physicians feels 1 times a year is plenty. I don’t want to be a statistic! I have called numerous huge oncology centers that list LEMS on their website, but to my surprise I found out that most of them weren’t even familiar with LEMS. I called the oncologist that my friend’s father-in-law saw and explained that I have been diagnosed with LEMS and wanted to know if that doctor would see me even though my most recent scans were clean. Within an hour, the office called back and they are scheduling me an appointment.
I believe that every patient that is diagnosed with LEMS should be seeing an oncologist along side their other doctors, considering the risk of CA with this diagnosis.
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@mhudakcollins I’m trying to remember my cancer screening protocol after the LEMS diagnosis. We immediately did a full body CT with contrast. Nothing showed. About the same time we did a PET Scan as well. Again, nothing suspicious. We followed with CT lung scans every 3-4 months for the first year. After two years of nothing, I told my neurologist I thought we could stop the frequent scans and she agreed.
The literature says LEMS is triggered by a cancer in 50-60% of cases. While I agree on early screening as was done for me, I don’t think an oncologist is needed unless imaging dictates that. Thanks for your thoughtful reply.-
I agree that an oncologist may not be necessary, but I am interested in seeing one for two reasons…1) My neurologist wants to leave the scheduling of scans up to my PCP and neither of them feel a scan is needed other than 6 mths or a year. I’m not satisfied with that at this time. 2) I have been told that the particular oncologist I’m going to see has recommended LEMS patients take Keytruda as a precautionary measure.
I don’t know enough about the Cancer side of this disease yet, nor have I seen any research done regarding meds taken to prevent tumors. I’m awaiting my visit with her so I can get all the information together. At least I know that she will order a scan every 3 months for the first couple of years.
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@mhudakcollins
I also have not seen any oncologist for LEMS. I did see one for hematology reasons relating to my lupus and problems with low blood counts.
I’ve yet to hear about any LEMS patient taking Keytruda for prophylaxis for cancer. It costs about $150,000 yearly. If you have literature on this, I would love to read and learn more about this!
I only got scans every six months for the first year and then yearly for 3 years after my LEMS diagnosis.
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Currently, I have no information regarding this but will be happy to share once I see and talk with her (the oncologist).
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@mhudakcollins
Sounds good! Looking forward to hearing more about this
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