Since the oncologists in Orlando refused to do another genetic testing on my dad (his only was at diagnosis in March) I called foundation one and applied for financial assistance yesterday as self-patient pay. Less than 24 hours later he got approved for 100 percent assistance. Does anyone here have any experience with their genetic testing and is it pretty accurate? He is in no shape for a tumor biopsy so all we can do is the liquid genetic testing through blood. But it’s something. Now I have to get his radiation oncologist to fill it out and obtain it because every medical oncologist at UF Health is refusing to treat my dad because of the one nasty doctor the other day who walked off when we disagreed.
Foundation One genetic testing - Lung Cancer Support
Lung Cancer Support
They are very well known and exactly who I would use and plan to use if I have progression and need further treatment.
That's wonderful he was eligible for free too.
It makes me sick that ANY hospital would refuse him treatment....? How can that be allowed??
Hope he can be transferred soon...
I did it!!! He got 100 percent financial coverage and his radiation oncologist got the blood from him today and out in the mail overnighted and they will start the test tomorrow at foundation 1!!! NO ONE would do genetic testing on him and I found a way around it!! Technically inpatient in the hospital he can’t get it done and technically wasn’t allowed, but patient self-pay with full coverage and his amazing radiation oncologist came up and got it himself! It will take up to 14 days but if my dad can hang on and get better his blood is on its way. He cannot get a tissue sample as he’s too sick. He may not have a mutation found still after this, but I’m certainly going to try to find one despite everyone telling me no. They think I’m crazy there but what they don’t understand is no way will my dad ever fight this alone. I told them I am fighting with him, for him, this is his wish and I will not allow him to go down alone fighting. I have a lot of people there who do not like me. I don’t really care. It’s about my dad and no one else right now.
Hoping for the best....! You are a force....it's clear you live your Dad very much.
Keep us updated...
I love him so much, Lisa. He’s the best father I could have ever asked for. I am just like him. He taught me to fight for what I believe in and never accept otherwise. I don’t know what the outcome will be to this, but one thing I do know is my dad will never fight alone. Until he tells me he is done fighting, I will never give up on him when he’s not giving up on himself. He hasn’t fought this alone since diagnosis and I won’t give up on him now. I told him tonight how strong he is. He said he doesn’t feel very strong right now. I said you are the strongest man I know. I had a trip paid for 6 months ago and my fiancé and I were leaving tomorrow, but we cancelled it. I won’t leave my dad and he won’t fight alone. He will fight to the end, and so will I.
I am so impressed with your perseverance in advocating for your dad. He must feel so proud of you and comforted by knowing you are looking out for him. It is great he is being tested again. Have you heard back from doctor at M.D. Anderson?
Prayers still going up,
It was Baptist MD Anderson in Jacksonville and the neuro onc did call me. He said the only way he treats it is intrathecal chemo and Keytruda but even then he isn’t optimistic with leptomeningeal. I was figuring out about transport for my dad from Orlando to Jacksonville when his radiation oncologist here urged to start focal brain radiation on the brain stem to slow or stop what’s happening. My dad has declined right in front of my eyes and we can’t stop it. The neuro onc in Jacksonville, nor his nurse or staff, did not return my next call and it’s been days now with no return call. Because of this, it left me with the only option of radiation so my dad was immediately sent for focal brain and spine radiation. But the lepto is brutal. One day in the hospital he was eating and talking and fine. Then his voice started to sound like a stroke patient. This has gone on for several days until today he is now communicating with a pen and paper because we can’t understand him much anymore. He’s frustrated and wants out of the hospital room. They are putting a tube down his nose for feeding as he can no longer swallow food. He tries but he has no muscle control over his throat. And his hands and arms are starting to move around like someone with a brain injury. He is still 100 percent alert and 100 mentally there. He is still trying to joke around despite all this. The leptomeningeal is unlike anything I have witnessed. He has only had 3 focal brain radiation treatments and it’s weekend now so nothing. Monday I am going to see about possible whole brain radiation instead. It seems at this point we have nothing to lose...
When I need it done I will be using Foundation One as well. I love the end run you made around the doctors. I’m curious too about Ncpoet’s question. Have you heard back from MD Anderson yet?
What about seeing a Palliative Care Doctor while you’re there? They have extra training in managing side effects of treatment.
What policy was the doctor following when he walked away from treating your dad. Have them put that down in writing.
That’s reassuring to know so many would choose foundation one for themselves, as I was hoping I made the right decision on that place. I wrote Ncpoet above on Baptist MD Anderson so you can see. Basically he has declined so rapidly, combined with that doctor not returning my call again, made me have to choose focal radiation for fear I would get my dad to Jacksonville only to be told sorry, we can’t treat him. This is horrific and I wonder if he should start whole brain radiation Monday instead of the 3 out of 10 focal brain radiation treatments he has had to the brain stem. He is declining daily and the radiation has not stopped it. St least not after 3 yet. And now no radiation because of weekend.
They won’t do anything in writing but I am going to be asking again. I don’t know the policy they were following, only he came at me nasty in the beginning because he received word I “have a problem with doctors”. Which isn’t the case unless a doctor is doing something or not doing something in regards to my dad that I disagree with. And we diagreed over genetic testing, he yelled at me and said no. I found a way around that. Then he yelled at me about a study and screamed show me the study. He got sarcastic and in front of dad said “just why isn’t Moffitt treating him?” I said he’s stuck in your hospital in Orlando! He was nasty and we disagreed. I said you’re not the doctor for him then and he yelled very loudly “good luck to you, girl, and good luck to him!” So in turn I was told if there is an issue between one oncologist at UF Health cancer in Orlando then they all have issues with you and won’t have anything to do with my dad. They won’t write it but that’s what I was told. His radiation oncologist found an outside oncologist to come see my dad at the hospital next week but it might be too late. His rad onc also called and talked to dad’s oncologist at Moffitt and his oncologist there said he would treat my dad with immunotherapy but he would need to be a cog of 2 or e cog of 2. Not sure the exact term he used. He said right now my dad is a e cog of 3-4. So it appears my dad won’t even have the chance to receive immunotherapy or be treated beyond radiation. This is all so heartbreaking. I’m thinking of maybe seeing if they can do whole brain radiation to my dad Monday instead of continue focal. They said it could be devastating to my dad, but it’s either try that or watch him decline neurologically and die. I don’t know what else to do.
Never mind, I just got word the outside oncologist that was supposed to come see my dad and us will not be coming to see my dad and wants nothing to do with my dad as “he has nothing to offer him.” He is an outside doctor, but apparently the other doctor who doesn’t like me got to him as well as the hospitalist. He has no help here except his radiation oncologist and he’s too neurologically sick for me to get him anywhere else. The hospitalist who informed us today the outside oncologist would not be coming to see him is the same hospitalist who informed me no oncologist in UF Health would be seeing my dad after the disagreement with the one oncologist.
Did they say why the whole head would be devastating for your dad? Maybe because he is too weak? My Ed just had that and did well for the 3 weeks but he is stable and he does better with radiation than chemo.
I am glad I don't live in Orlando and ever need an Oncologist.
What does your rad. Oncologist think about whole head?
Please continue to keep us posted.
There’s varying opinions. His oncologist at Moffitt said that’s Moffitts standard of treatment for leptomeningeal is craniosacral radiation. His radiation oncologist didn’t seem to agree with it as the “potential” of what it could do. At this point I see no other option because after 3 focal radiation treatments to brain, shouldn’t there be slight improvement? Instead he is declining neurologically each day still. I feel like we have nothing to lose anymore by trying whole brain radiation. I have to get him to e cog 2 or Moffitt won’t treat him systemically. I told my dad this and I said we have to get you better because I have to get treatment into you. So today he wanted so badly for us to wheel him outside in a wheelchair and go to the cafeteria. But they won’t let him
Surely a nurse could take him outside for even 5 min. I asked once a while back but will ask again. Who diagnosed him the first time? A general practioner or a Pulmonologist? Is he too weak to be moved if you had a different doctor in a different city?
Having been in the medical field and now being on the other side of it, I understand that a doctor could get frustrated with your questions but THAT is his job to defuse your frustration and assure you they are on your side and will be working for your dad's best interest. You know some people legitate at the drop of a hat and maybe he has had a bad experience. NOT making excuses for him as there are no way excuses.
You are one tough lady. As you see, you have lots of people thinking about you, hoping you are able to get health for your dad.
Think the idea of getting in writing their refusal is a good one.
Keep notes, you may decide to write a book one day.
I’m not feeling very tough right now, but thank you. And I definitely have more than enough material for a book, however it would be quite a heartbreaking one.
Been reading through this thread, and from the beginning have wondered why you have not contacted the CEO of the hospital. I was forced to do that and the change in hospital doctor's choices was amazing. Never did grow to like me, but finally did what my doctor wanted. Long story short, I had fallen off my horse and fractured my back in 3 places. After surgery hospital doctor kept insisting that I get up and walk or at least sit in the chair, while the orders my doctor gave me (visiting surgeon) were that I would be bed-bound for a minimum of 9 months. Lots of threats from hospital doc, and I called the CEO from the hospital room and stated the facts. The hospital doc was doing rounds about an hour later and instead of trying to force me to get up was all about making sure I was comfortable: were the sandbags enough support, was I getting enough pain med, did I need anything, etc. Whatever the CEO said, it clearly made a difference. Maybe that is another avenue you have to chase down to get the oncs to do their job!
Journal absolutely everything with date. time, who and what. Doctors who refuse to treat properly can be sued for malpractice. It also makes docs think twice about their decisions instead of being stupid.
We are all in your corner! Your love for your dad is great inspiration for all of us.
God bless and watch over you and your dad
I did. It didn’t get anywhere yet nor was I able to speak to the ceo. He was just moved to the oncology floor. They are much nicer here so far
Been following you from the beginning - you are absolutely amazing and your dad is so very blessed to have a champion like you! Praying that with the move he will receive better care all around.
Thank you, Lauri-Anne. I don’t feel very amazing right now. I truly feel I failed my dad and I told my dad this yesterday. He said you did not fail me, Lisa!! And yet I just feel that way. He was going to beat this cancer until lepto. And lepto 7 months from diagnosis? I can’t believe this is happening. He told the nurse tonight I’m his medical advisor. He has all the faith in the world in me whether he beats this or not, and I just wanted to cry.
Lisa, please stop beating yourself up. You have done so much more than others would even think of doing! I am so sorry you have had to go to such exhausting lengths to get good care for your dad. He knows you are fighting hard for him, and that is so important - if you take anything away from all of this, always remember how much your dad loves, trusts and appreciates you! When you feel down, please listen to the rest of us who know just how amazing you are! Too many of us wish we had someone in our corner with one tenth the fight you have!!
I love the fact your dad is still trying to joke around. Humor really helps with healing if not the body then certainly the spirit. Sounds like the radiation oncologist is certainly on your dad’s team. He is a keeper. I don’t see how a hospital can get away with not having an oncologist treating your dad. Your dad or you didn’t dismiss the doctor. Denzie’s suggestion to get it in writing is a good one. Doctors are not gods and they should be able to handle questioning from patients or family. You were talking intelligently about treatment options and that would not have offended my oncologist and would not have offended other doctors. Calling you a little girl shows he has a lot of other issues going on and wonder if he would have talked that way if you had been a son asking. But that is neither here nor there. Your dad is still number one and I am sure he is glad he has a daughter like you.
As always prayers going up,
Thank you so much, Judy. Oddly, this oncologist on a YouTube video states he became an oncologist because he has had loved ones with cancer and he’s compassionate. He does have praise ratings from some, but apparently I am one of the unlucky ones who saw a different side to this man. Or no one has ever questioned him before and he couldn’t take it from a female. Bottom line - every. Single. doctor. Gave up on my dad once it was determined leptomeningeal. Every doctor except his radiation oncologist.
Glad you and your dad are still hanging in there. You are part of our family here.
I'm sorry he's declining.... sending prayers for you both. it