Leptomeningeal

[Lisam81]

The doctors today came in at the hospital and they are leaning towards leptomeningeal with my dad and I am crushed. That is the worst news I could have heard today. Please someone tell me this isn’t all bad! What do we do, where do we go if it is? I have to get his records to Moffitt quickly. It’s not confirmed but he said the oncology team in Orlando at hospital is leaning that way. Test isn’t back yet. How would this have happened?? He’s been stable since diagnosis and then boom this?! (I included a picture of my dad. Since you all have helped him so much and fought for him for IMRT, I figured I should at least include his picture!)

[Denzie Moderator Volunteer]

Lisa, sometimes it takes a couple attempts to confirm lepto. Valerie Harper was diagnosed with this in 2013 and is American Lung Association spokesperson. There are a couple of different treatments for it. Harper has been using pulsed Tarceva. Please keep us posted.

[Lisam81 in reply to Denzie]

So Tarceva is a treatment that can be used for lepto even if he doesn’t have EGFR? Thank you for the hope! I didn’t realize that’s what she had as well.

[ThePurplePlace]

Lisa

I am very sorry to hear this. I don't know a lot about this, but know it's quite serious.

I've read some posts on Inspire about Lepto, you may also want to post or search there. I personally have no experience.

I'd definitely want a second opinion with a Neuro Oncologist. Even if you have to do a remote one.

Sending prayers....

Lisa

[Lisam81 in reply to ThePurplePlace]

Thank you! Today his vision has gone blurry a bit so they are doing another brain CT tonight to see if there’s any further change. What I’m confused on is how could his cancer be stable since diagnosis and then just a little enlargement on 9/7 and 9/27 but no mets and then boom, lepto suddenly??? That blows my mind and makes no sense but none of this does. I am trying to help him but I don’t know what to do anymore and I’m so upset.

[ThePurplePlace in reply to Lisam81]

Unfortunately, that's how this horrible Illness seems to be act at times? I wish we knew more and had better treatments and diagnostic abilities.

Hoping you get more answers today. He'll continue to be in my thoughts and prayers.

[GMC1]

He is handsome! Lisa, he is young enough to get through this. Age helps. My Ed is 82 but he tells me all the time that he isn't going anywhere, and I count on that.

Be positive. Tomorrow might be a better a day.

[Lisam81 in reply to GMC1]

He is, Gloria! He’s the strongest man I know. He’s 64. But he’s in such bad shape right now. I don’t even know what is happening because it’s just happening so quick. He stopped the clinical trial at Moffitt and then boom. I don’t know. I just don’t know how to help him

[judg69]

Hi again Lisa, your Dad is a fighter and does have age on his side. My best advice now is to get your Dad admitted into Moffit in Tampa as soon as possible if there is any way operationally this can be done. I would start by contacting his oncologist in Tampa tomorrow am and being pleasant , but insistent that you speak to him directly for guidance. While I am sure the Orlando Facilities and Doctors are excellent, Moffit unquestionably is one of the finest cancer treatment centers in the U.S. My own oncologist did his residency at Moffit and is excellent. While Moffit cannot guarantee a positive outcome, I would better trust the odds there . Please give your Dad a kiss and hug from all of us here as we are all pulling for him, and for you. All Best Wishes, judg69

[Lisam81 in reply to judg69]

Thank you for your help! I am still awake researching everything I can because I can’t sleep. He has been going to Dr Scott Antonia (thoracic oncology department director) at Moffitt, however we also have Baptist MD Anderson in Jacksonville that is the sister to MD Anderson in Texas. I am torn between Moffitt and Baptist MD Anderson in Jacksonville. He was seen there in March for a second opinion before we chose Moffitt. We also have Mayo in Jacksonville, but I’m not fully considering that. I know MD Anderson in Texas does the direct spinal port and drills a small hole into the brain to put a port in. I am not aware that Moffitt does the brain that way and wondered if Baptist MD Anderson in Jacksonville would. Should I try the others or should we stay with Moffitt? If this is lepto, my dad needs the place with the best possible chance he can get and I don’t know where that is. He’s also only still in Orlando because he was admitted into the hospital through the Er after the random, sudden seizure which prompted all of this. I don’t think the hospital will discharge him yet until an answer is determined, and I agree he needs to be somewhere else ASAP once it’s figured out. I plan on driving his records and imaging cd to Moffitt today or tomorrow when his oncologist will talk to me. His oncologist knows he was admitted last Tuesday into hospital, but to date no one from Moffitt has called my dad or us to even check on him or for an update. We don’t have much of a relationship with his oncologist at Moffitt, though he is good in the field of immunotherapy.

[Ncpoet]

Thanks for the picture, Lisa. He looks young for his age. I think M.D. Anderson has been doing research on this. Maybe your dad’s oncologist might know what they have discovered. I would think he needs to see a neuro-oncologist to determine best treatment for this new complication. I believe you said you were an only child. I am, too, and it is hard not to have siblings to help you with his care. I was solely responsible for my parents’ care and that does put a lot of stress on you. Right now, it is all about your dad and helping your mom. But don’t forget to get the rest you need so you can stay strong. I will always believe in hope and pray for miracles.

Judy

[Lisam81 in reply to Ncpoet]

Hi Judy, thank you! I am waiting to call his oncologist this morning to try to get a hold of him (is it normal to never be able to get a hold of your oncologist or wait days for a return phone call from the nurse???) once I speak to the doctor that’s going to call me. The fuss we made last night about his swollen arms that caused the nurses to not care for me, well they did an ultrasound on his arms because of it and found a blood clot in his arm now. They are leaving it and starting him back on Lovenox. Another thing to worry about now. The hospital left him off his Lovenox for 3 days because they weren’t in a hurry to get the lumbar puncture done. He does have a neuro onc watching him in the hospital but not at Moffit.

Yes, I am an only child. I have my fiancé by my side on this, and my mom, but neither are good with medical so it’s up to me solely pretty much. I end up having to explain to her afterwards in terms she understands once I speak to doctors. And everything is deferred to me. The doctors even request to just speak to me. It’s a heavy load to carry and overwhelming. I broke down last night for first time - I think I needed a good cry. I’m just so scared for him. I’m sure you can relate with this with being an only child. I got 3 hours sleep because I was up researching. I’m doing the very best I can for him.

[judg69]

Lisa , you are doing a great job, and doing all you can . You are probably tired of my advice by now, as are others also , but here goes anyway : stay with Moffit or go with MD Anderson , both are excellent cancer research and treatment specialists. Only concern with MD Anderson, Jacksonville is that it is a branch as opposed to the main research and treatment facility in Houston. As for Mayo , Jacksonville, I have been to Mayo, Rochester, MN , and was impressed, but I took my late daughter to Mayo, Jacksonville , and was totally unimpressed ( seemed like all they did and cared to do was play ping pong with my gravely ill daughter, endlessly bouncing her from one specialist to another different specialist to no avail. And yes, unfortunately, it can be a major, almost insurmountable , challenge to get a top flight cancer specialist on the phone. Keep trying , and also ask, PLEAD , to speak directly with his nurse as she/he may prove your best conduit to the Doctor. Only Best Wishes for You and Dad, judg69

[Lisam81 in reply to judg69]

I am definitely not tired of your advice!! The more advice I can get the better!! After speaking with the dr again today, they are definitely leaning towards leptomeningeal and I am terrified. My dad told me he doesn’t want to leave us and it seems like we never go forward and only backwards. I told him not if I can help it. My heart is broken. Shattered actually. He has deteriorated a bit. His vision is blurry. The lepto is taking hold of his CNS. Trust me, I am feeling so helpless right now that it helps to be able to talk to you all about this. His insurance won’t go out of network unless it’s an emergency. If his radiation oncologist here in Orlando did a letter of medical necessity stating why he needs to go to MD Anderson. If insurance approves it they would pay for MD Anderson. After the fight for IMRT with insurance I am not holding out much hope on this happening. I did finally talk to the nurse at Moffitt who advised me it could be a while for my dad to be seen by neuro oncology at Moffitt and if Orlando health can treat him now, do it. I am not okay with this without knowing if this excludes him from a possible important clinical trial. Orlando health told me today they want to treat my dad. I’m not sure I’m okay with that. But Moffitt is telling me they don’t know how fast they can start treatment. This is so messed up and I just want someone to help him!!

[gibdonnalee Community Superhero]

Hi Lisa, I am so sorry your Dad is going through this. I don't have any experience with it, I have stage 4 lung cancer and am 4 years in.

Your Dad is young and looks strong. Although I know looks can be deceiving. Stay strong, (I know your trying).

I will be praying for him and your family to get through this. This is a great group and people here will be helpful and lend an ear whenever you need it ..

Donna ❤️❤️

[Lisam81 in reply to gibdonnalee]

Thank you Donna. He’s not as strong now as he was. It has happened so quickly within 2 weeks. Thank you for your prayers. 4 years is great!! Many prayers for 50 more!! God bless you and all my best to you

[Ncpoet]

Lisa, I am glad you were able to have a good cry. You have been carrying quite a load and even the strongest of people have to have a release. Crying doesn’t make us weak. It only makes us human. You are doing a great job of caring for your family. Don’t ever forget that. And although we have never met, even I am proud of all you have done and are doing for your father. Continuing to pray for your family.

Judy

[Lisam81 in reply to Ncpoet]

I’m trying! I’m flipping out right now! I yelled for someone to please take a chance on him and help him! I need to get him out of this hospital and to Baptist MD Anderson in Jacksonville but they won’t let me! His oncologist at Moffitt offered nothing other than wbr and spinal radiation and then maybe later try immunotherapy. That won’t work!! He needs someone to help him now!!

[Ncpoet in reply to Lisam81]

Hang in there. That’s hard to do when you feel the panic coming on. ACbeatsCA is one who knows about this first hand. We all want to help and right now all I can do is pray that you find the answers you need and you feel some peace as you have to wait for things to happen. I noticed Michelezeh also had some good suggestions.

Judy

[ACbeatsCA]

I have leptomeningeal disease and stage 4 lung cancer ( Egfr exon 19 deletion and T790M driver mutations). Your father definitely needs a neuro-oncologist in addition to his lung cancer oncologist. There are various treatment options and they can guide you and your father about which one(s) to try. I don't know all the treatment options, but you can ask about Temodar, which is brain cancer oral chemo. Methotrexate IV is another option. High dose Tagrisso (160 mg- off label use) has also been suggested. Stay calm in the midst of this storm. Wishing you love and prayers

[Lisam81 in reply to ACbeatsCA]

First let me say, I’m so sorry you’re going through this! Secondly, I’m so happy you wrote me! I am flipping out at the hospital right now. My dad has not had any genetic testing done since diagnosis in March of this year. He has NO mutations found then but he hasn’t had any further testing since then. Does that rule him out for Tagrisso and tarceva? Also he is on Lovenox and has blood clots, so they’re telling me this makes intracranial therapy with a port in brain and/or spine not an option. He is at Orlando health and I need to get him somewhere else but they won’t let me right now! He is so swollen he doesn’t even look like himself. His oncologist at Moffitt offered nothing other than whole brain radiation and spinal radiation and then maybe later on he could try immunotherapy. I have an appointment for him at Baptist MD Anderson now to try to get him help but he’s deteriorating so much they won’t let me take him so I’m trying to get an ambulance transport but the hospital is fighting me as they keep telling me there’s nothing they can do that Orlando health cannot. Thank you so much for writing! My prayers are with you as well!!

[Michelezeh Administrator]

Hi Lisa, I think you should reach out to Dr. Alice Shaw at Mass General she works with leptomeningeal alot. If you need to stay in the Florida area I would recommend at Moffitt Dr. Jhanelle Gray or if travel in florida Dr. Raez at Memorial Cancer Institute in Hollywood Florida. If it is Lepto they have treatments that are responding well for people so lets get a diagnosis and then next steps. It is always good to get a second opinion and once they confirm it start treatment ASAP. Sending hugs and please keep us posted what the exact diagnosis is.

xo

[Lisam81 in reply to Michelezeh]

Thank you. Unfortunately I’m very aware of Jhanelle Gray at Moffitt. She works closely with my dad’s oncologist there who is the director. Moffitt left my dad to hang. The only option they gave him was get wbr and spinal radiation to buy him some time and “maybe” they could do immunotherapy to see what would happen. He doesn’t even recommend intracranial chemo for lepto there. They have nothing to offer my dad if it’s lepto. Didn’t even look at his records here to see what they could do. His insurance won’t let him go out of state or we would run somewhere quickly.

[judg69]

I feel for you and your Dad. Unfortunately, time is now of paramount importance, thus I still say Moffit or MD Anderson, one or the other absolutely ASAP. Praying for you both, judg69

[Lisam81 in reply to judg69]

Moffitt left my dad to hang. His oncologist (director of thoracic oncology) was flying out today. Won’t be back until Friday. He just got back from vacation a few days ago after being gone for over a week and now he’s gone again. But he only offered wbr at Orlando health and spinal radiation and then maybe a month or more down the road he can “maybe” try some immunotherapy to “see what would happen”. But that Moffitt doesn’t do intracranial chemo or have any other options for him as he said “nothing really helps lepto”. He only offered “this is a bad situation, sorry”. I can’t get him to MD Anderson because his insurance won’t allow out of network. I called md Anderson today and they said to self-pay they need all the money up front or they won’t treat. We can’t do that. So that leaves Baptist MD Anderson in Jacksonville. I got him an appt there Thursday but it looks like my dad won’t be discharged unless they transport him and admit him there. Moffitt already said sorry about your luck so instead I am driving his imaging cds to Baptist MD Anderson in the morning in Jacksonville from Orlando. I can’t get anyone to help him other than everyone is just waiting and watching.

[judg69]

Lisa, you are doing all you can. Strong suggestion for you, physically get his imaging cd’s into the hands of a NURSE in the appropriate specialist department. I have had some bad experiences with charts/cd’s getting lost/misplaced if just mailed or given to the receptionist or other non-medical personnel. Thoughts & Prayers, judg69

[anrean]

Dear Lisa,

My heart is breaking for you and your family as you struggle through all of this. Sorry I don't know anything about lepto, but am sure you will be an expert in no time. Please just remember you are only one person and there is a limit to what you can do. You need to also take care of yourself so you don't burn out and end up not being able to be there for your dad. Cancer has an agenda of its own, and sometimes all we can do is fight to the best of our abilities. You are a wonderful daughter - and I am sure your family knows that! Fight to the best of your abilities, and remember to take care of yourself, too. All of you are in my prayers. God Bless.