Has anyone had, have, or heard of paraneoplastic syndrome with lung cancer? Today my dad’s radiation oncologist, who spoke with the neuro oncologist about my dad’s abnormal brain MRI, and they feel he may have a paraneoplastic syndrome from the lung cancer that is mimicking Multiple sclerosis in his body, though he said he has never seen it mimick MS before. This came on rapidly, with most symptoms within the last week of loss of muscle coordination and balance, low urinalysis output, severe low back pain with electrical shocks down his leg, migraines, shaking with other symptoms. He ordered a spine and sacral MRI to see if the spine matches the brain and/or cancer but he said the brain mri isn’t showing cancer and he suspects the spine won’t either. They feel confident it’s paraneoplastic syndrome where the cancer is tricking the body and mimicking MS and causing abnormal brain MRI and doing something bad to his spine. They started him on pain medication today for the severe low back pain. So far everything is showing the cancer hasn’t spread since diagnosis of the 2 adrenals, 1 tumor by his heart for which he’s getting IMRT and a small portion of a rib. They also did a blood test last Friday to rule out rhomboencephalitis and confirm or deny paraneoplastic syndrome. Since my dad is no longer on systemic cancer treatment since 9/7 while undergoing radiation (they didn’t do the chemo on 9/27 as he failed the trial with tumor enlargement but not spread), my concern is that he needs to resume treating the cancer internally because of what is going on now. Anyone have any info on this? The paraneoplastic syndrome is a new curveball I’m not familiar with yet.
Paraneoplastic syndrome with NSCLC??? - Lung Cancer Support
Paraneoplastic syndrome with NSCLC???
Lisa, that’s a new one to me. I went through four months of balance problems. I was never dizzy. I did the MRI on the brain and had a spinal tap. No cancer there but couldn’t tell me what was happening to cause my balance issues. It came on overnight and and four months later started to go away. Never did find out what caused it. The only abnormality was lesions on parietal bones in skull which no one seemed concerned about. Cancer is such a tricky fellow and our bodies can react weirdly. All I can say is it sounds like everything is being done to find out what is causing these symptoms. You and your dad hang in there. Maybe when his oncologist returns you will have better answers. Praying all turns out well. Keep us posted.
Judy
Thank you, Judy! Unfortunately I have been with my dad at the ER since 11:30 am as he was taken by ambulance. They are going to admit him into the neuro unit soon and he is getting a million tests run. He had a follow up with his pulmonologist today and was sitting outside on a bench when he apparently had a seizure for the first time ever, fell off the bench and slammed his head and face multiple times against the concrete. A PA watched my dad repeatedly hitting his head and face on the concrete and held my mom back from helping him, while she was screaming, and he never helped his head from slamming into the concrete. So my dad is banged up, bloody and bruised and doesn’t remember anything. They are checking for a brain bleed, fractures and now they are doing so many mri and ct scans from slamming his head with the seizure. And maybe a lumbar puncture. His oncologist thinks this is an infection. His radiation oncologist thinks paraneoplastic syndrome so we don’t know what’s going on, other than he now had a seizure on concrete outside and no one would help him from slamming his head into concrete 15 times and held my mom back from helping him. He looks like he was in a car accident. This is a rough time right now. And it happened so suddenly within the last week and he has no history or family history of this.
This is going to be tough to understand but when someone is having a seizure the best thing to do is to not touch them until the seizure has passed. Trying to help the patient or to restrain them to prevent harm usually causes more damage than allowing them to seize. It’s horrible to watch but they did the right thing.
One of my housemates has epilepsy with grand mal seizures and I have been told not to touch him during one. It’s ugly, I know.
It’s awful that your dad has been through this. Please keep us updated on test results and new developments.
I do understand some of that as my fiancé is a law enforcement officer and that’s their policy at work, too, except they are told to put a towel or something under their head so the person does minimal damage to themselves if it is possible. Being that my dad was having a seizure by a parking lot on concrete outside of a hospital building, they had access to a towel to put under him to cushion his head. Instead they watched as he repeatedly slammed his head face first into the concrete knowing he’s on Lovenox and was 2 hours into his latest shot, with lovenox not being easily reversed with a bad bleed. The ambulance put a towel under him when they got there and stated they couldn’t believe they allowed him to slam into the concrete repeatedly on Lovenox. That’s the part I don’t understand. Even the internal medicine doctor who came in and saw him in the ER questioned the PA who happened to witness it and said it should have been obvious to the PA he was having a seizure. Instead the PA held my mom back saying is he having a seizure? There’s a question now of a brain bleed from slamming the concrete and with Lovenox it’s even more concerning. He’s being admitted but he’s still in ER getting emergency tests. Today has been terrifying. Absolutely terrifying. He is getting a spine mri and brain mri tonight. They already did a brain ct earlier. Tomorrow he will have an EEG and a lumbar puncture. There is differing opinions between his oncologist and radiation oncologist between infection like meningitis and paraneoplastic syndrome. They disagree on it but he won’t be coming home until it’s figured out I believe.
Hi,
I've only just come across your posts regarding paraneoplastic syndrome (PNS) and your father's unfortunate experiences. He's certainly having a rough time of it and I hope he is recovering from the injuries caused by the seizure. It's been upsetting for all of you.
I was trying to find if others had made any reports of PNS because despite being under a very renowned hospital, it's only now the specialists seem to be acknowledging this is what I have and what is giving me the most difficult problems with my nsclc even though it's rather indirectly a result of the cancer. I hate to say it, but I've been "telling them" it looks like PNS and this was being met with considerable indifference. Fortunately, my most recent specialist is marvellous and really getting things moving between oncology and neurology. I felt like I'd fallen into some kind of no-man's land between the two specialisms and if it wasn't exclusively to do with cancer progression, they weren't very interested. Side-shows weren't their thing.
My symptoms first appeared when the cancer returned in 2016, but seemed to slacken when I was (fortunately) put on Gefitinib that July. I've been successfully on this medication since then, but the PNS has recently returned with something of a vengeance and my walking and peripheral neuropathy are now a problem. It does tend to vary in intensity day to day and almost hour to hour. I walk with a stick and nowhere near the distance or speed I once did. At some point, the effectiveness of Gefitinib will fail, although scans show no rapid progression of the cancer.
I'm due for plenty of tests in the New Year as the concern is whether the cancer has spread or is it "just" my body's own defences attacking itself. Someone have a word with it please!
There is the possibility that if tests show the cancer's EGFR mutation has mutated again, being moved onto Osimertinib might help. One can only hope, which seems to be the universal character of living with cancer.
Neil
Hi Neil,
I have been away from the forum for a bit to just take a small break as my dad did recently pass on 11/20 and it’s been rough. I have not checked my email in a while but just did and saw your post. A few things with your post concern me so I’m curious, HAVE you had a lumbar puncture? If you have not, my advice would be to insist on one for your peace of mind. I don’t want to alarm you so please don’t be, but I just feel very strongly about this test considering your symptoms and the concern for paraneoplastic syndrome. They originally thought my dad had paraneoplastic syndrome. He had no cancer progression ever but when chemo was stopped in September so he could undergo radiation, things rapidly progressed. After he went into the hospital on 10/16 they ended up doing a lumbar puncture on my dad. They found that what they thought could be paraneoplastic syndrome turned out to be the rarer leptomeningeal disease (free-flowing lung cancer cells that found its way into the cerebrospinal fluid with or without cancer tumor progression anywhere else in the body). Leptomeningeal will manifest with neurological symptoms, loss of balance and coordination, possible headaches, possible slight speech changes, possible nausea, possible tingling and pain in back and certain areas, spontaneous seizures (though not always) etc. For my dad the loss of coordination and walking were one of the first symptoms he had and it wasn’t constant. It came and went. Also nausea and an abnormal brain MRI that did not indicate cancer, but was ruled as they didn’t know how to interpret it. He was dismissed many times by his oncologist with “but there’s no cancer progression and no reason for your symptoms.” I think they thought he was crazy. It didn’t happen all the time and first was intermittent. When it progressed, it progressed rapidly. My advice to you is to be safe and ask to rule out leptomeningeal disease. Insist on a lumbar puncture - see a neuro oncologist. If they cannot do it quickly enough sometimes you can walk into the ER, tell them your cancer type and symptoms, tell them your concern for leptomeningeal and from what I understand they do lumbar punctures in the ER a lot of the time. This could expedite the test if you can’t get one quick enough otherwise. Unless you have had tests confirming for sure paraneoplastic syndrome, I would strongly urge you to rule out leptomeningeal. It very well may not be a concern and may very well be something else, but for your peace of mind and wellbeing. I wish a doctor had done a lumbar puncture on my dad way before October (and my dad went to Moffitt since day 1 and his oncologist, who is also the director, missed every sign of leptomeningeal. My dad had been telling him the classic symptoms so I later found out and it was still overlooked) so I am giving you the exact advice I wish my dad had received much earlier than 10/16. It is a possibility the treatment you’re on is keeping it at bay just enough or it could be something completely different but rule it out. Paraneoplastic syndrome testing is a blood test. They could have started that on you already. Leptomeningeal is found through a lumbar puncture. You know your body best. If you feel something is wrong, and no one else seems to take it as seriously as you are, fight until you get answers. Get a neuro oncologist and not just a neurologist. Get the blood test for paraneoplastic syndrome. Get the lumbar puncture asap for leptomeningeal. Best case, you rule those out, have peace of mind, and continue on to figure out what’s wrong. I apologize for the long response - I just feel very strongly about this after my dad and I’m giving you the exact advice I would have wanted to be told from a doctor long ago for him. Hindsight is 20/20. Hopefully this small bit I learned with my dad will help you rule out these 2 things. I wish you all the best and please update me on how you are doing!
Lisa
Hi Lisa,
Thank you so much for your very thorough, informed, wise and kindly given reply. It's such a pity your knowledge had to be arrived at through the decline and sad passing of your clearly beloved father.
The "good" news for me is that a lumbar puncture is all lined-up for 3rd January, so my specialists are now actually doing something more investigative. This is along with MRI scans and my usual 3 or 4 monthly CT scan. I'm pleased my condition (from my increased insistence) is being taken more seriously. I put this down to being seen by a different, more junior, but nonetheless excellent oncologist who possesses people skills. Let's hope she stays that way during her career!
Anyway, in a month or so, I may know something worth reporting and I'll let you know. In the meantime, thank you once again for your reply. My wife and I are glad your vigilance on this excellent forum prompted you to share your experience and knowledge, particularly now you are deserving of some peace after the loss of your father and the understandable rawness of the whole experience.
Neil
Hi Neil,
Checking in on you to see how you are, how your tests went and if you have your results back yet? I’m assuming you did the lumbar puncture and did you get the paraneoplastic blood test done? Thinking of you and your wife.
Lisa
Hi Lisa,
Thank you for asking. You're very on-the-ball and it's kind of you to think of me.
Lots of tests done this last week including lumbar puncture which wasn't as bad as I'd perhaps imagined. Phew!
By subjecting me to lots of small electric shocks, the neurologist confirmed I have quantifiable neurological degeneration, although she said simply seeing me walk shows that. it just confirms what I've been saying, but now they've got numbers.
My next visit to the oncologist is this coming Monday and we'll be interested to know what they have to say although I think I may only get to hear about the most recent CT scan (disease progression?) which may indicate whether another attempt at biopsy is called for to check for EGFR cancer mutation and a consequently approved change of medication from Gefitinib to Osimertinib perhaps. The National Health Service structuring and funding in the UK means Osimertinib is not yet first-line treatment, so comparing the approach taken in the USA is of considerable interest to us. It could be argued we are a little backward, although I see why this is so.
The lumbar puncture results may well come under the neurology department's watch. Admittedly it's the same (huge) hospital, but this departmentalisation aspect doesn't always result in a joined-up approach and that'll be my battle. It'll be interesting to see just how joined-up it will be and I'm primed with my leptomeningeal question thank you.
Watch this space!
Neil
I’m happy to hear you finally got your tests done! And yes, I should have told you that too - my dad was concerned about the lumbar puncture and said it wasn’t as bad as he expected as well. The neurological degeneration confirms what you’ve been trying to tell them - it also doesn’t rule anything out yet either. Both paraneoplastic and leptomeningeal cause neurological degeneration AND just the treatment meds can cause it too! So anything could be the cause. It will be the more definitive tests that will hopefully answer more for you and if and when everything is ruled out then it’s probably going to come down to it’s a side effect of the cancer treatments you’ve been on. I still would encourage you to request the paraneoplastic blood test. In the US we have a test that can check 200+ things for paraneoplastic with just a blood test - I’m assuming it’s the same in the UK but I don’t know. Also the lumbar puncture will not definitively say leptomeningeal but they should pay attention to how it comes back. In leptomeningeal it is common to find high protein, low glucose and WBC in the cerebrospinal fluid they collected. This will give them an indication that something is wrong. And if they find malignant cells in the fluid that’s a sure sign. The lumbar puncture is 50-60% sensitive on the first time, and the second lumbar puncture is 80% sensitive. So a second lumbar puncture may be needed if they still suspect something is wrong or if they have no answers for you yet. In my dad’s case though, his first lumbar puncture was 100% sensitive. I have been told that’s not always the case. If this was my dad, I would call the doctor or hospital and ask if his results came back yet for the lumbar puncture and I would request the results if they have them. I did this many times for him as I was listed to be able to pull his records. Many times I got his results before the doctor told us. It took about 4-5 days for his results to come back. Even if the doctor tells you it’s fine, request a copy of your results and review them anyways and keep them in a folder. I did this for my dad. Many times it came in handy as I pulled certain test results, blood work or doctor’s notes from it later on. The doctors dropped the ball with my dad a few times and I caught it. Do you or did you ever have the EGFR mutation? Anyways, all this info may or may not apply to you now but after my dad, I say it is well worth knowing about this up front and beforehand, trust me! You will be armed with this knowledge should you ever need it later on to know what to look for early on. Praying you get everything ruled out!
Lisa
Hi Lisa,
I do have the EGFR mutation and have been on Gefitinib since July 2016, so not bad going really. Because the lesions in my lungs are slowly growing, it's thought the cancer is mutating, but here in England, a biopsy has to definitely show the "correct" mutation has occurred before the next possible drug (Osimertinib) is prescribed. I believe in the US Osimertinib is now the first line treatment and not second line like here. Ironically, some years ago before my lung cancer and my retirement, my job as an industrial R&D chemist involved producing some of the precursors to these EGFR drugs and I remember wondering if I'd ever have recourse to these remarkable drugs!
A blood biopsy was inconclusive and simple needle biopsy wasn't possible at that point. That situation may have now changed depending on what the latest CT scan says. This coming Monday's consultation may tell me more on this.
Neil
My dad’s tumor started growing slowly again after being held stable since his diagnosis. When he passed, he still had no further tumor metastasis than he had when he was diagnosed. Because of the slow growth on 2 out of the only 3 tumors he had I wanted another genetic testing as he has no mutations at diagnosis. They said no. I wanted a tissue biopsy and they again said no. I was pushing for it with Moffitt at the time he went into the hospital with the sudden seizure. So I went around it and had an outside company do a blood test for genetic testing. The results came back a few days before my dad had cardiac arrest and was put on life support. But the blood test showed no mutations that had a treatment. He did have something I’ve never heard of but there’s no treatment for it. I still wonder what the tissue biopsy would have showed but from what I can tell even though my dad’s tumor was slowly starting to grow but no metastasis since diagnosis, he still had none of the common mutations. I was actually praying it would find EGFR! Opt for a tissue biopsy over blood test first if you can get it.
Hi Lisa,
My first needle biopsy was in 2014 showing I had NSCLC. When the six-monthly x-ray monitoring showed the cancer had returned in 2016, a second needle biopsy confirmed the type and the terminal diagnosis and all I could be offered was platinum-based palliative chemotherapy - which I declined. I didn't see the point in getting sick in the hope of living a little longer. Just because doctors could offer something, did it make sense that I should go along with it? A short while after that, I was told the cancer had this EGFR mutation which is most frequently found in oriental and, now I learn, even more so in Peruvian women in particular! That's how come I was offered Gefitinib. If I'd accepted conventional chemo, would I have then been offered Gefitinib? I may never know and frankly, it's an imponderable topic.
More recently I was told the tumours are too small and awkwardly positioned behind ribs to locate by needle biopsy. One surgeon offered to open me right up and have a dig around for a sample! I declined, in the understanding that if these things grow, they should be more easily accessible by needle biopsy. Interestingly, the fairly recent blood biopsy showed inadequate DNA of either "ordinary" or newly mutated cancer. The procedure seems to be a bit hit-and-miss and I can understand your reticence regarding your father's situation. My current position is therefore what might be termed watchful waiting. My wife would like to see me moved onto Osimertinib in the hope it will curtail the neurological problems, but the NHS demand definitive proof of mutation to the "correct" form before buying this relatively expensive drug from the manufacturer. Arguably, Gefitinib is still having some effect. How drug funding is approved and allocated in the UK is a most interesting exercise ... if "interesting" is the right term! In Scotland, I wouldn't be given Gefitinib (Scotland's own policy I might add). I'm glad I live in England therefore.
Neil
Hi Neil,
How are you? Did you find any answers? I’ve been sick, but I didn’t forget about you!
Lisa
Hi Lisa,
Hope you're feeling better now and it's kind of you to be thinking of me.
Sort of reasonable news last week in that the CT scan showed little change in the lungs and the MRI scan showed no evident movement of cancer into the spine. I still await for some results from the lumbar puncture from the neurology people, but the oncology guy (a very good Irish doctor) tells me there is a raised protein level, but it was not leptomeningeal. He mentioned that with no prompting from me ... maybe that's one of the numerous reasons I have a lot of time for this particular guy. You don't always see the same doctor each time here. I have the neurology consultation on February 1st.
Blood was also taken to see if my EGFR has mutated and, importantly, the test was performed better this time. They had obviously taken on board the fact the test was run badly last time, possibly giving nothing at all useful. I'm still awaiting results from this, but monthly consultations tend to mean information comes in monthly chunks! I assume the tumours are still too small and awkwardly positioned to obtain tissue (CT guided needle) biopsies otherwise they'd be going for that.
So, as I say, it's kind of good news and that'll do for me. The nerve damage is still ongoing, but let's see what the neurologist says next.
Best wishes,
Neil
Hi Neil,
Happy to hear your good news on scans!
But... the lumbar puncture concerns me with the raised protein level and concerns me even more that you were told that rules out leptomeningeal... it does not. There is no way to rule out leptomeningeal by CSF fluid that has a raised protein level unless they have definitively found the cause of that raised protein level. In fact, what it means is you actually need further work up to rule it in or out because one of the most suspicious results for leptomeningeal on first lumbar puncture is elevated protein level. At no time should your CSF fluid have elevated protein if there’s not something going on. Typically an elevated protein level in CSF fluid means there is a central nervous system issue, which means it could have absolutely nothing to do with leptomeningeal but also means it could. It could be a number of things, but it needs investigating further. Typically with leptomeningeal, the first lumbar puncture is only 50-60 percent accurate because it’s free-flowing fluid, you don’t always get a concentrated collection. When someone who has cancer, has an elevated protein level in the CSF fluid, it warrants more investigation, including leptomeningeal as a possibility to be ruled out as that is the initial hallmark sign for it on first collection. You also need to find out - did they JUST run the protein level only? Or did they do the glucose levels and cell levels also? On top of having the neurologist, I strongly urge you to establish with a neuro-oncologist and have them review as well - they are different in knowledge from the neurologist. You also need to find out your protein level number, find out about the glucose level, find out why they believe your protein level is elevated, because it should not be and it’s not considered normal for it to be (indicative of central nervous system issue) and if this were my dad, I would request a second lumbar puncture with full analysis as the second is typically more accurate than the first. There is also no “yes or no” test, it’s a process of elimination. Either way, the elevated protein level found in CSF fluid corresponds to your neurological issues. Now you just need to push for everything to be ruled out so you can figure out what is going on. But it’s bad info he gave if he meant you can tell it isn’t leptomeningeal by an elevated protein level on first puncture. Establish with a “neuro-oncologist” , especially if the neurological issues may be a cancer treatment side effect. Hope this info helps! You can never be too informed and also may help others in the future reading this! All my best
Lisa
I'm not sure what tests on the spinal fluid were done or are ongoing. Quite a raft I believe. I'm sure the oncologist must be aware of more than he was letting on and only mentioned the word leptomeningeal in his follow-up letter to my GP (copy to me) and he pointedly told me he would not comment on matters the neurology people would be raising with regard to possible treatment, etc. I think if there was anything urgent it would be flagged-up. One has to trust this is the case over here and particularly that I am under what must be one of the most advanced hospitals in this country (Addenbrooke's if you're interested, which is the Cambridge University hospital. It's huge). It isn't very straightforward to request a "neuro-oncologist" when you are an NHS patient as I am. One is not a paying customer as such. Our system is different to the US, which is why I'm so pleased to say my local hospital is no lesser place than Addenbrooke's. There is another smaller one locally, but no thanks!
The Irish doctor I mentioned originally said his interest was with neurological matters (although he is actually a senior oncologist) and it was he who first did anything at all after my first oncologist rather dismissed my complaints regarding difficulty with peripheral neuropathy as being "an existing condition" which it certainly wasn't. I think it was simply an area she wasn't familiar or interested in. I certainly feel something of a rare or unusual case despite the large numbers of people with lung cancer the hospital deals with. This is when you start to realise that whilst there are generalisations to be made in disease, lung cancer suffererers virtually have their own personalised disease.
All the best,
Neil
Hi Neil,
Just keep my info in the back of your mind and ask questions. My dad went to Moffitt in Florida. It’s like the top 5 or so nationally ranked cancer hospitals in the US, so it’s very good. Moffitt missed the leptomeningeal and brushed it aside until it was too late. My dad’s oncologist is the top speaker and researcher at almost every lung cancer convention and research convention both US and World conventions overseas. He missed it as well, despite saying later he had dealt with it a lot. So it never hurts to be informed. My dad started having symptoms of leptomeningeal long before October but the cancer treatment he was on held it partially at bay. When the treatment was stopped end of September for radiation it allowed the leptomeningeal to go full blown. All my best and hope you get answers soon!
Lisa
Hi Lisa,
As I now have some proper information, I thought it was time I got back to you.
After all the tests, the neurologists suspect I may have chronic inflammatory demyelinating polyneuropathy (CIDP) and have started me on infusions of immunoglobulin which I understand is obtained from blood obtained from prisoners in the US ... so thank you guys!
It's a little early to say if it will work, but there may be some very slight signs of improvement to my walking, particularly later on during the day.
Best wishes,
Neil
Hi Neil,
I am so happy you have a potential diagnosis! I mean not happy that you have it, but that you at least have a possible name for what is going on so they can start to treat it! And how interesting that the blood comes from our prison system - who knew?! What were your lumbar puncture results btw? I know you mentioned the protein was elevated, but did they find white blood cells in the fluid and was the glucose level of the lumbar puncture normal or elevated? The slight improvement in your walking is a positive first step!!
All my best,
Lisa
Wow,I know that was hard. Glad they are going to do comprehensive tests and hope he heals from his injuries very soon. Sorry this happened to him but maybe the seizure will be the clue to help them discover what has been really happening to him. I am praying for your family as you wait for results.
Judy
Brain metastasis
Mother has NSCLC 
Stage IV NSCLC - Very Agressive
