My dad is still sitting in the hospital in ORMC in Orlando health since LAST Tuesday. His tests have not come back confirming or denying leptomeningeal. They say it’s still a mystery. He looked and talks like he has had a stroke which I’m wondering, however he is not confused and is alert as normal. But his eye is droppy a bit and his speech is weird though my dad says it’s because of a dry mouth. I’m not sure I agree. His sodium came up today finally to 130-134. He is throwing up when he eats but for some reason they don’t want him drinking the high calorie boosts that he was drinking. They have NO answers yet and yet they have done many MRIs and CTs, test after test. They did more brain ct scans and mris today. No answers though. They are now wanting to move him from Medical PCU to oncology skilled nursing. This isn’t setting well with me at all. Doctors shake their head and tell me I’m not getting it but frankly, I’m pissed. So very angry!!! I drove all of my dads imaging records today to Baptist MD Anderson in Jacksonville from Orlando for a Dr Cavaliere to review there in neuro oncology. I should hear back from him tomorrow but without him seeing him I’m not sure he will have full picture. Moffitt just said sorry about your luck but I still think I’m going to bring his imaging cds to Moffitt tomorrow or Thursday, though his oncologist at Moffitt is YET out of town again. I don’t know whether I should try to get a transport from Orlando to bring him to Baptist Medical in Jacksonville and have him admitted to that hospital and transferred there and take our changes with Baptist MD Anderson. Or if that would be a mistake. Honestly I don’t know what to do but he’s declining and they’re JUST watching him go down!!!!!! Edit - just got off the phone with neuro onc at Orlando health and I got angry at her. She said they did pretty much confirm leptomeningeal and they can only do chemo and not intracranial therapy or into the spine because he’s on Lovenox and blood clots. I told her what good is chemo going to do for him?! He needs Tagrisso, tarceva or Keytruda!! Maybe even Opdivo. I don’t know but I DO know chemo isn’t just what he needs!!
What should I do now???!! PLEASE help!! - Lung Cancer Support
What should I do now???!! PLEASE help!!
Lisa,
So very sorry for this development. You’ll have a more clear idea what your dealing with after you hear back from your second opinion tomorrow.
The question of transportation should be asked of the Anderson doctor when they call you. From what you wrote in your PM, I can’t help but think he may be better off in the Oncology Skilled Care ward.
I hate that he’s going through this and am lost as to what I would do if I was in your situation.
Lisa,
I too hate this situation you are in. I believe you feel like you are totally alone and need just one person to tell you what is best.
Denzie has given you really good advise. More than likely those medical people are as confused as you are. From your description of his face, Bells Palsey (might not be spelled right) came to mind, but being in the hospital, I am certain they would have checked for that.
Who told you they had decided what it was? A doctor? If he was transferred to the Oncology nursing department who would be treating him there? Certainly an Oncologist. Then, would you not discuss all of this with him?
It would seem to me he could take the drug Valarie Harper took and perhaps one of the Immune drugs. I strongly prefer Opdivo, because less side effects. I am sold on the Immne drugs if a person can take them.
Ask why he can't have the Ensure/Boost. If he is throwing his food up, it is doing no good.
Maybe you will get more answers tomorrow. Do you feel he will get better care at Anderson? Would they be willing to take him?
Reread your letter. Who put him on Lovenox? Might they be able to give him something different, accomplishing the same goal but allowing treatment.
I had the same type of experience about a heart medication prescribed in the hospital but when an antibiotic was later needed the heart medication conflicted with quite a few antibiotics. By the time the pharmacy and the nurse got their faxes sent back and forth 4 days had passed. I called the cardiac doctor and he took him off the medicine, but the patient (my husband) developed pneumonia waiting. I was beyond angry. Changed both doctors.
Still hope some clarity comes tomorrow with a definite diagnosis and a direction for you and your dad. Does your dad have a general practioner or a Pulmonologist that you could talk to?
I’m so sorry that things keep falling apart for your Dad. It seems he can’t catch a break. I know we want the doctors to know everything immediately but unfortunately...they’re just a human as we are 🙄. Eye and mouth drooping without other stroke symptoms can very well be Bell’s palsy. My husband developed that briefly after a lymes diagnosis ...luckily it went away after a few months on anti virals and corticosteroids. I’m know that sometimes they have to stop dietary supplements if they believe they might be making the vomiting worse. It’s probably better for him to just be getting iv fluids to keep him hydrated then for him to continue to eat or drink things that cause vomiting. It’s amazing how much damage can be done to your body when you’re vomiting regularly. Maybe they can try anti nausea meds before he tries eating anything? I found that making my own boost or ensure from the powder form with almond milk was much more tolerable for me than regular milk or water. Water is the hardest thing for most people to keep down when they’re nauseated. Not sure why, but it is. As for transferring your Dad...the others are right. Get the opinion of the docs at the hospital you want to transfer him too. If they believe it’s in his best interest and your dad is comfortable with it then go for it. Just keep in mind that even with prior test results..they will likely want to do their own tests again and that will take up more time. I dont know why they don’t just use the existing results if they are recent but most doctors want their own tests in their own hospital. How are your dads spirits? Is he getting frustrated? The second most important thing to good treatment is positivity. That’s so hard to maintain when you feel terrible and you’re not getting the answers you want or need..but it really is important. It’s good that you can vent on here so he doesn’t see your frustration.
I know this is a miserable thing to be going through and all of us are praying that everything goes as well as possible. We’re here for whatever you need. If they aren’t giving him an immunotherapy drug then it’s likely because they don’t have all the answers they need. I’m sure once they do then they will consider that as the next line of treatment. I wanted it right away too and my onc said no. Not until I did the 45 rads and 10 rounds of chemo first. Once that was done I started the immunotherapy infusions. Keep in mind that immunotherapy drugs, as amazing as they are; come with their own set of side effects and they need to be sure his body can handle the changes before they start them. My first two infusions wiped me out to the point of total exhaustion and I ended up getting two blood transfusions and a whole lotta procrit because my blood counts got super low. The immunotherapy drugs real a little havoc before they start to do what they’re designed to do. It always gets worse before it gets better so I’m sure they’re just trying to get all the info they need before they go that route. I’ve done a lot of rambling here but there are just so many variables and everyone is different. The key is finding the right doctor, the right facility, and having complete faith that they know what they’re doing. I lucked out. I wish everyone could see my oncologist because he cures incurable cancers. Sounds silly but it’s just the way it is. When other doctors said there wasn’t much that could be done...he called bull$hit. When my insurance said no to something, he got in the phone himself and said “approve this now or my hospital will stop taking your insurance”. No joke. He told my adjuster that she would lose tens of millions of dollars in premiums when he told all of his patients to drop coverage with them and find an insurance company that didn’t question doctors recommended treatment plans. He didn’t have billing call them when it was important. He did it himself. We call him the “General” because he runs his department like no other doctor I’ve ever seen. When Dr Harper wants something done...it gets done, and because of him I’m currently cancer free. The first hospital gave me no hope. He gave me a cure. Make sure you feel the same way about your dads doctor because he is the key to survival. Knowing when and how to use the immunotherapy drugs is as important as the drugs themselves. I have a good feeling about your Dad. He’s been through too much to not reach the finish line.
We will be praying for both of you and please keep us posted. Xox
I can’t respond to everyone yet as I’m rushing around today, but thank you all for your help and responses! It was confirmed leptomeningeal yesterday so I’m told. Today an oncologist came in and was the rudest, nastiest, most horrific man with the way he treated me in front of my dad. I was on the phone on speakerphone since I’m collecting more of his records. The doctors came in when I stepped out so my dad called me and put me on speakerphone. My aunt, dad’s sister, and mom were there with my dad in the room. The doctor treated me like I was stupid, first asking me what I think I understand. I said that my dad has lepto and it’s serious. He said yes and said they were only talking about maybe doing focal radiation but not sure. That he can’t have Ommaya port as that would mean no Lovenox for 10-14 days. He said he has no mutations so only chemo they wanted to do. I said what about Keytruda?! I said he hasn’t been tested for mutations since diagnosis. His cancer was stable and outsmarted the chemo and I said it could now maybe pick up something it first missed or one developed now. He argued with me and got smart and said no we can’t do genetic testing again! Then He talked to another guy in the room and said “Is this true? Can we test for genetic mutations again?” The guy, not sure who he was, said yes with a blood test. The oncologist said how long would that take? The guy said 2-3 days. The oncologist said “oh”. Then he said they couldn’t do that in hospital. Dad would have to be discharged for them to do genetic testing. The oncologist had an attitude with me since the beginning of the talk. I said “you’re an oncologist and you didn’t know you could do a blood test again for genetic mutations again? In front of my dad and aunt he yelled “you better cool your jets!” I said do not tell me to cool my jets, if you can’t understand where I’m coming from then you’re in the wrong profession.” He mumbles nasty stuff I couldn’t hear on speaker phone. I said he needs to try Tagrisso. He said no he does NOT need Tagrisso. I said studies show Tagrisso works on non-egfr that has progressed into leptomeningeal in 43 percent of people especially when the people couldn’t have radiation to the brain or spine as it breaks the BBB better even in non egfr. That’s the highest I have seen. He said show me the study cus you’re wrong! Then he yelled a second time show me the study! I said BLOOM study for Tagrisso in non egfr with leptomeningeal! He said then why isn’t the dr at Moffitt doing it! I said because he’s on vacation again, said sorry about your luck and to get him craniosacral radiation and then try immuno maybe later! I said we could never get a hold of him the entire time my dad was being treated by him and no one there ever called us back for months! He said so you have a problem with every doctor huh, girl?! I said no, just the ones that won’t even listen to anyone else. He said you’re on your own and so is your dad. Then he laughed and yelled “Good luck to you, girl!” And my aunt said they walked out in a huff. I’m trying to get this guys name. I want everyone to know about this oncologist!!!!!! Now my dad is sitting in there with no one helping him!!!! He hated I knew info because he wanted to talk to me like I was a little girl and an idiot!! My aunt who witnessed it all is appalled beyond belief and cannot believe it. Not to mention all this was done and said in front of my dad and he now knows no one is helping him!!! They only wanted to do chemo!! No Keytruda no nothing! He needs help now!!!
Good, good advise from ynkefan08753. Most important, you need doctors you trust, who will talk to you, who you have faith in. It would be difficult for me to deal with a doctor who was out of town so much, no matter how good he is. If he is that good, he is probably doing speaking engagements.
Wanted to tell you if you end up in Jacksonville, there are small apartments there ( mostly in the old downtown area) that can be rented for not too much. Sometimes they are apartments over an existing garage which are very nice. Families of medical patients and/or patients can be right there for treatment. We have been there twice.
I also believe there is help for your dad.
I just can't even speak of your experience there. Lisa, take a little time in the chapel there in the hospital ( probably only place you can be alone) to calm down. Everyone is depending on you so you have to be calm for not only yourself but your mom and dad. Just tell them you are going to work on getting him to the best place for his care. There is so much going on, I know it must be hard.
From here, it might be best to just present your dad's condition to the next doctors or hospital without complaining about your experiences there. They were bad but looking forward he "has quite a few very serious problems" that you need help with. Take or send the records and tell them what you have been told. Plead to them for someone to help you. There must be other doctors at that hospital in Tampa. Tho, there are quite a few in Jacksonville; Mayo, Shands and I guess Anderson, maybe a Baptist hospital, most right there close together. Look seriously at Jacksonville. When you speak to the doctor in Jacksonville, just ask him what you can do, what he would do if in the same situation.
Should you chose Tampa, what doctor would you use? You can't depend on someone who is out of town and/or doesn't return phone calls. There must be others there to help you if you prefer to stay close.
Thinking about you. You need a level head and a calm heart to do what you need to do. Get help for your dad now and write your complaints after he is on the road to getting better. Let it go for now. Better for all of you. Move forward with a positive attitude. But, move forward.
My heart goes out to you!
I hope you know more once you have the results of the second opinion.
Sending positive thoughts and prayers.
Thank you! Just wrote more above about what happened today
Lisa, excellent advice from ynkefan. And again, I will repeat your Dad needs a treatment regime to start now. From what you have told us, get him one way or another to Moffit or MD Anderson today, tomorrow latest, Then, support your Dad , but Allow that facility to finish their tests and start, continue and finish a treatment plan. All Best Wishes, judg69
I agree with everything that has been said above. Please know that you have done your very best to make sure you father gets the best care possible. You and your family are in my prayers.
Lisa,
Unbelievable! Since that doctor says your dad is on his own, then insist on transfer now. They should not be able to deny a transfer since the doctor has released him. This oncologist was angry you showed him up in front of a colleague and you knew more than he did. Some people can never admit they are wrong and thus they try to make you wrong. It is an ego thing, but it could turn into a blessing since this doctor showed himself and you can now choose who you want to treat your dad. The hospital will have to listen to you now. I hope your dad can see what a jerk he was and not take this man’s words to heart. He needs a doctor who cares and is willing to discuss options. I will pray that is who will be there for him when you receive his second opinion. After things settle and your dad is elsewhere and in treatment, I would report this doctor to his administrator. Right now, your dad is the priority but the hospital should later know how their staff is treating their patients and family. Very unprofessional behavior on his part! Praying you get that second opinion soon and your dad begins his treatment elsewhere. Don’t let this man’s behavior affect how you see your dad’s next oncologist. Believe me, there are some good ones out there! Let’s pray the next one is just that—compassionate and eager to get him started with a treatment plan. I went from chemo to targeted drugs and back to chemo after drugs caused too many side effects. That turned out to work for me. I would think the IV is preferable while he is unable to keep things down. Once things settle down with stomach and nausea, they can introduce liquids and solids again. I know it is hard right now, but try to be calm around your dad and assure him there are other doctors. He is confident you will do what is best for him. He is probably hurting more over the way the doctor treated you. You are his daughter and no one wants to see their children hurt or fussed at. As for the other issues, could the seizure be responsible? and this may only be temporary. I thought my husband had a stroke but tests showed otherwise. He slurred his speech for several months and gradually got better. Never knew what caused it but it went away. He did have some speech therapy anyway. Since it did not affect your dad’s ability to understand, then it could get better on its own. Hang in there, Lisa, and once you are away from this hospital, encourage your dad’s positivity about his treatment. Help him forget about this doctor and concentrate on a new treatment plan.
All the best,
Judy
I'm shocked and stunned that any oncologist would ever speak to you or any family member in this manner. He needs to be reported.
If he must stay there, can you ask to have a different One take over his case?
And yes there are blood biopsies that can be ordered, they do take time and you need a doctor to order them, not sure why that can't be done for an inpatient though???
Sadly there are good and bad docs out there and clearly this one is not ideal for your Dad?
Hopefully you can get him transferred soon.
Also isn't there someone at Moffitt covering for the doc who is away?
Best wishes.... praying for treatment soon
Lisa
Get him transferred. MD Anderson there can probably put him on Coumadin. That place and it’s doctors are toxic for your dad.
They wouldn’t release him. His radiation oncologist there is amazing beyond belief and he’s the only one. He started to cry. He stayed late and got my dad in for focal radiation of his brain stem tonight. He is undergoing his first one right now. 10 treatments of focal to the brain stem etc.l to try to stop or slow it down in the brain right now. Neuro onc said whole brain radiation and spine might kill him. So the idea is to slow it first and treat from there. I don’t know if that means if he gets stronger I can get him transported to Jacksonville but they wouldn’t let him go now. I had a Chinese medicine doctor come to the hospital for my dad. I know I am going against what hospitals would allow but I don’t care. This guy treats the government officials in China and is 4th generation. At this point, I will try anything. Doctors gave him 0 days to 2 months with emphasis on days. My dad said he wants the most aggressive treatment at a chance to stay here for my mom and I and live. He denied “comfort” and is willing to go through everything they said could happen. That is my dad. He is a fighter like no other and he is who I get this from. So focal radiation to slow because it’s taking over his CNS. I am waiting on call tomorrow from neuro onc in Jacksonville to see what, if anything, that can do when he’s done with the 10 days of radiation. My dad wanted to give his radiation oncologist a try first to get stronger. It won’t treat, only slow. I don’t know if this is the correct move, but I’m doing the best I can and I don’t know that I will ever know what the right thing is. I can barely breathe myself for him.
Great news! Your dad is finally getting treatment that may help! judg69
Glad to hear that he is getting some kind of treatment and that your dad is a fighter. Obviously you take after him. He knows he has the best person in his corner. Don’t doubt yourself. You are doing all you can and your dad knows it.
Judy
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