I wanted to do a post series on what my dad is going through and leptomeningeal with lung cancer. Maybe, just maybe, this will help someone now or in the future. The main thing I want to convey is this - watch for these signs: nausea that doesn’t get better, nausea that comes with one bite of food, severe nausea that isn’t even explained by chemo (with or WITHOUT vomiting as my dad rarely vomited but was very nauseous) - unexplained unsteadiness, wobbly gait, feet that don’t seem to want to cooperate at times and then fine at other times - headaches, even minor ones. My dad’s headaches were not bad at first. Just minor headaches that no doctor cared about when he told them about them. These 3 symptoms (or a combination of 2) are, I believe, the biggest symptoms my dad had of leptomeningeal starting back when it could have been caught before severe progression. Instead it was missed 10,000 times over. Do not buy into the facts that leptomeningeal is a late term complication. My dad was diagnosed with stage IV NSCLC, adeno, on 2/28/18. He had NO metastasis since diagnosis. He has one chest tumor and 2 adrenal tumors and that’s it. He was stable on Alimta maintenance. And then boom, leptomeningeal. Literally out of nowhere, didn’t even see it coming. The average time to leptomeningeal is 111 months. My dad developed it in just over 7 months from diagnosis while also remaining stable and very well since diagnosis. From my research, leptomeningeal may be more prevalent than people think as it can happen so rapidly (hence my dad) and not ever get diagnosed properly. If you have a combination of the 3 symptoms above and feel something is wrong, insist on a brain MRI or EVEN better, a lumbar puncture. Question leptomeningeal. Do not assume it won’t and can’t happen to you. It is commonly not found on the first lumbar puncture, and can sometimes take 2-3 to find it. Catching it early could possibly save your life and give you the fighting chance my dad missed due to no one recognizing the symptoms, despite the head thoracic oncologist director at Moffitt being told his symptoms for so long (for which they kept trying to prescribe him anti-depressants for). It was dismissed. If you are concerned about leptomeningeal, and your doctor won’t test for it then walk into the ER - tell them you have lung cancer, tell them your symptoms and tell them your concerns. The hospital should perform a lumbar puncture on you then. If this information can help someone now or in the future, it is worth it. I will post more on this. More research needs to be done on leptomeningeal and treatments. I fear a day will come where we see more of this, especially with today’s increased length of survival, and we will have no answers on how to help and treat. I only wish that day was now for my dad. 💔
Leptomeningeal - Part 1: I wanted to do... - Lung Cancer Support
Leptomeningeal - Part 1
Aw Lisa I'm so sorry I thought the IMRT would help. I never in a million years would have thought of anything such as
Leptomeningeal never heard of it until now. Isn't there a treatment that will help. I need to know how you are. Keep on being an advocate for your dad. But you can't help him if you get sick so please take care of yourself. Wishing you and your dad better day's. Know I'm here for you and your dad. Love susie jo.
Thank you, Susie Jo! I appreciate your kind words. I will continue to fight for my dad and won’t stop! You take care of yourself and I am thinking of you!
Excellent post. Thank you for sharing in such detail. Your decision to share your dad’s story may save someone the same heartache.
Unfortunately I am finding that not many know what leptomeningeal is, how it happens or what it does. It’s not just brain metastasis cancer in the form of a tumor. What I have witnessed is so much more than that, it’s shocking to see. I knew of it briefly in the beginning but I didn’t pay much attention to it. It has made me wish my dad had a tumor, or several, in his brain instead and I never thought I’d be saying that. I think it needs to be talked about more, and researched more for treatments, so that someone can recognize it early. I would hate for anyone else to witness what we have witnessed and even worse, go through what my dad is going through.
Lisa, It is good to hear from you. Thank you for sharing so much. Your research very well may end up saving someone else. How is your dad now? Please keep us updated with what is happening.
Lauri-Anne
Thank you, Lauri-Anne. He is fighting with everything he has. Unfortunately, leptomeningeal is horrific and shocking to witness and no matter how strong my dad is or how much he fights, leptomeningeal is doing things to him he has no control over. He is a prisoner to his body, with a normal brain and a strong heart. The worst to witness is his facial muscles give out and his jaw hangs wide open. He cannot close his mouth. His jaw and jaw muscles no longer work. So he tries to talk but it’s hard to understand. Try talking with your mouth wide open in full sentences. I tried it to understand. It’s frustrating. Because his mouth can’t close, he can’t swallow. He also can’t fully close his eyes anymore to sleep. When he sleeps, his eyes are mostly open yet he is sleeping. He now has aspiration pneumonia we’re trying to get through. He had 3 more radiation treatments that are on hold. His legs no longer work. He has a little strength in them but the leptomeningeal has made the use of his legs nonexistent. There is more, but never could I have imagined that my dad would go from normal to this in less than 1 week. This makes me wish my dad has brain tumors, instead of leptomeningeal, and I never thought I’d say that.
Dear Lisa,
I am so very sorry that you are witnessing this, and more so that your dad is going through it. I had never heard of lepto before, and did a little research on my own. Wish there was something I could do! I think I can speak for everyone when I say that I find myself wanting to hear from you daily. So many of us care for you and your dad, especially in this terrible time of crisis.
I am leaving for Florida on Sunday and will be there until Nov 29. What hospital is your dad in, and what city? Maybe we can share a cup of coffee. I will be near St. Petersburg, and may end up traveling to Tampa to see my own doc, as well as Orlando and all the way up to Lake City.
Please know I think about all of you daily and you are in my prayers. I admire the tenacity you have shown in making sure your dad gets the best care possible - you are a true inspiration!
God Bless,
Lauri-Anne
Lauri-Anne, you are very kind! I just posted an update on my dad in a new post and this nightmare. I would love to meet you if I am able! Let me know when you’re in Orlando. Things are a huge mess right now and I’m feeling very run down. My tenacity has caused a lot of grief, but my only concern is my dad so it’s all okay. If you take one thing away from this, please know to never give up as long as you want to keep fighting! I am very happy you find the positive in my dad’s story. It’s not all roses but there is a lesson in it somewhere and I’m glad you found what it means to you. God doesn’t stop fighting for us, so why should we? Assuming that’s what we wish for. You are in my prayers as well ❤️
Lisa
Lisa, the new post has not yet come into my feed - I usually am a day or two behind, for whatever reason. Will be looking for it!! Don't ever give up. Miracles happen all the time, and new drugs are being approved so fast! Hopefully we can share some coffee and you can get personal support for all you have been through. I will keep you posted with when and if I will be in Orlando.
my email is anrean@aol.com if you want to get a message to me sooner.
God Bless all of you
Lauri-Anne
Thanks for sharing, this information is very important.
Lung Cancer often spreads to the brain, making any neuro changes very important concerns that need to be addressed and brought you your doctor's attention right away.
Lepto is very serious and very difficult to treat, and not as rare as others might think. Always be proactive in your care.
My heart hurts and goes out to anyone who has cancer and any of the associated illnesses.
Best wishes to your Dad.
No, I believe it isn’t as rare as we thought. And the longer we live with lung cancer, the more leptomeningeal will become a problem. And there isn’t much for treatments unless you have EGFR, so leptomeningeal really needs treatment options. I believe catching it early, though, is ones best chance. I wish I could change things and my dad had brain tumors instead of leptomeningeal. Brain metastasis tumors are bad, but I believe it would have been a better option for my dad to go through. It is a shocking, horrific, heartbreaking thing to watch what leptomeningeal is doing to him.
Thank you for taking your time to write and more than likely it will help anyone faced with these problems.
I think we all want to know how your dad is today. Every day I look for a note from you.
We care and pray for answers for you and recovery from this extra obstacle
For your dad.
Gloria
Hang in there sweetheart were all there with you. Remember we care. Love Susie jo
Much love to you Susie Jo ❤️
Keeping you and your dad close in thoughts and prayer. Continue to post when you can. We all care about you.
Judy
Thank you Judy! I just posted an update on a new post. It’s not everything but my dad’s story is so hard to condense right now with so much going on. There’s so much more I could write and tell 💔 Have you followed up with your symptoms? You’re in my prayers as well! ❤️
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