I figured I would do a brand new update post in one spot. To update on my dad’s insurance denial, the external review for IMRT on his chest tumor that is wrapped around the SVC of his heart was denied today as well. This was the final appeal we had and now have no more. To say I feel defeated is an understatement. I tried so hard to get my dad IMRT and it failed. The first request by dr was denied. The appeal was denied. The peer to peer was denied. The 28-page patient appeal I wrote was denied. And now the external review today was denied stating “we agree that IMRT is best, however it is still denied”, leaving his radiation oncologist confused at the meaning of the denial wording. I have done a social media campaign, Florida Blue Cross has contacted me directly based on my social media posts, but in the end nothing. I have contacted the Florida insurance commissioners office, which apparently didn’t get anywhere despite the case opened and his help. I have tagged local news stations, written state representatives and was in the process of consulting attorneys. I have asked for financial aid from the center, nothing. But time is now up. Today we drove from Orlando to Moffitt for my dad’s latest scans and what was supposed to be his Alimta maintenance infusion. His last scan showed his chest tumor wrapped around his svc of heart, was 4.9 from 4.2 cm. They didn’t fail him on chemo yet last scan. But today, since fighting for IMRT, it has gone from 4.9 to 5.6 cm and both his adrenal tumors have increased in size, making it a 37% increase in growth and a critically dangerous tumor growth increase onto his heart while fighting insurance for IMRT. Alimta maintenance has now failed.
We were informed this is now critically important he start radiation or they said he will die from the tumor collapsing the SVC. He also was pulled out of the clinical trial today. It was after all this we were informed by his radiation oncologist that the IMRT external review appeal was denied. This leaves my dad only standard radiation to accept for a tumor that is wrapped around the vein of his heart and all the risks of standard radiation next to critical organs. I am angry and I am sad and my dad is scared. I am appalled Florida Blue has treated my dad this way, even admitting they knew IMRT was better but still wouldn’t approve it. We have no choice now but to accept standard. 😔
Since he has now failed chemo, with no further metastasis but 3 out of his 4 cancer sites have a 37% total increase, the next treatment per his oncologist for second line is Abraxane, Carbo and Keytruda, but it won’t start until 2 weeks after his last radiation treatment of which he will have 15 standard 😔 radiation treatments. Does anyone have any experience with this combo? Or any info on it? This all just happened today so I am going to be researching it as well, but I am interested in any firsthand knowledge on it or any opinions at all. He was also prescribed Reglan today to see if that helps his nausea and ability to keep food down with possible gastroparesis. I appreciate everyone’s time and help in responding to my earlier posts!! 🧡 Unfortunately, insurance has failed my dad and I am sorry for this and everyone who this has ever happened to and will happen to. It is wrong on so many levels.
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I thought with all of us together. Florida Blue Cross. Would fold and approve it. If your dad doesn't make it God for bid that doesn't happen. They are a lawsuit and if it were me that's what would happen. But that's me you do what is right for you. I hope he gets some other treatments that will help
Tell him to keep hoping and don't give up There is a lot of new treatments. Don't you give up you both keep fighting. Let me know what's happening I will worry. Lisa I'm here for both of you never doubt that. Love susie
Thank you Susie Jo!! Unfortunately insurance companies can be cruel I found out and putting it off any longer will harm my dad more than anything. He is starting standard radiation this coming Tuesday. I am scared for him but we will get through this. You take care of yourself and thank you so much again for your kind words!! 🧡
Lisa, I am so sorry to hear this. I will pray the radiation does what it is supposed to do and not injure his organs.
I had carbo and Alimta but not the others. Hopefully, others on here can tell you what they know about this combination. To move forward, encourage your dad to feel hope the treatments will work. Staying positive is most helpful. I wish him well. Keep us posted as to how things go.
Thank you for your prayers, Judy! We are scared of standard radiation for him but remain positive. It’s just hopefully another bump in the road that will work out in the end. I wish we had more time to continue fighting insurance but his latest scan last week show that time is up and radiation has to happen now. He is scheduled for standard radiation this coming Tuesday. I am so nervous for him but I don’t want him to see that so I’m not showing it.
All I can add is when all doesn’t go right, it doesn’t have to all go wrong. The targeted drug that was supposed to help me caused me to go into cardiac arrest. I was afraid another drug wouldn’t be as good. It turns out, despite being unable to continue with that treatment, I was still able to go into remission. So continue to remain positive and hopeful. This treatment might be what works after all. Our bodies can respond differently than the way they are supposed to. Tell your dad to keep his spirits up! My husband used visualization while he did radiation treatments. He saw his cancer cells like a little Pac-Man game and his radiation ate his way through them. He was given 5 years to live and he is still living 25 years later. The mind is a powerful ally when it comes to healing with faith being number one!
I agree with everything you wrote! Thank you for sharing your story and your husband’s - you give us hope and I am so happy to hear you both are doing well!!! And yes, your outlook and faith is number one!!
I am very sorry this has happened. The only thing I can think of now is to appeal to Moffitt as a charity case and hope that goes through. I know you said you have done that already, but that was when there was still a possibility for the insurance to do the right thing. I would also hire an attorney and, based on their own wording that it is the best course of treatment but still denied, threaten them. Hopefully both of these will help. I worked for a psychologist and when the insurance company refused care, I threatened that they wouldn't have to worry about the family suing, I would be their worst nightmare - it did work and they covered the patient's treatment. Will be praying for you and your dad.
Unfortunately I called many attorneys who told me “we don’t deal with this” because it’s a denied authorization. I’m not sure I understand it but every attorney I called got absolutely nowhere. There is a huge injustice against so many people. I feel they look at my dad and so many others as having stage IV and weigh the chances of him and others living years from now and decide it’s not worth the effort, cost etc. My hope is that they stop going by old statistics and start treating everyone as if they will be here for many years and allow everyone the chance to fight and live that we all deserve!! I’m pretty sure I know why they won’t spend the extra money on my dad and it’s horrific to me. For him and everyone else this is happening to out there. Something needs to change.
In Buffalo, NY we have a legal service for the elderly and/or disabled. Hopefully you have something like that near you and you can go through them. See if there is a city/county services for the elderly governmental department and start there. If not, call the local Social Security office and see if they have a list of lawyers - praying you can find an attorney through one of them. This just isn't right!!
We are all sorry you and your Dad are going through this. If the powers that be at BC had lung cancer or any of their family members did...this probably wouldn’t be happening. I agree with the above comments that if they said on paper that the IMRT is the best course of treatment but still deny it...then you need to have a bulldog attorney all over them immediately. That’s an admission that they are requiring your father to have a treatment that is NOT the best course of action because they don’t want to pay for the one that is. It’s crap plain and simple. Get someone on the phone with your congressman, senators and anyone else who will listen. This needs to go viral in order for them to have no choice but to do the right thing. While all that is happening let me reassure you that my tumor was inoperable because it was intertwined with the heart muscle and a lot of the veins that come from the heart. It was the size of an orange and was crushing my bronchial tube as well as cutting off blood supply to my heart and other lung. In order to operate they would have had to remove my lung and heart from my chest to access where they needed to access and it was just too risky. Instead we opted for radiation and chemo and afterwards an immunotherapy double blind trial. At the end of radiation my tumor had shrunk from the orange side to the peanut m&m size. It was no longer crushing anything and it had released its grip on my heart and surrounding areas. As scary as this all sounds to you guys...standard radiation may not seem like the best option, but it’s still a good option. They do what they can to minimize organ and tissue damage. Most of the damage I received from rads was in my esophagus and to the fibrotic tissue in my shoulder blades and mid to upper back. Yes I have to deal with gastroperesis, GERD and three times a year dilations to my esophagus so that I can swallow properly. The alternative was death so I went with what was offered to me. Convince your Dad to do the treatments and don’t worry about what could happen from them. We know what will happen if he doesn’t do them. If the effects afterwards cause some issues, he will have the strength to deal with them because he will have shrunk the cancer. His doctors may want the IMRT but they wouldn’t do standard rads if they thought it was too dangerous. Some oncologists ONLY use standard radiation. Some only use IMRT. Some like immunotherapy and some don’t. Whichever they choose the goal is always the same. Either cure the cancer or make it manageable. Anything we can do to help aside from the prayers already being sent up...please let us know. Xoxo
You received standard radiation the whole time on the tumor wrapped around the heart vein, right? Or did it switch to IMRT after standard? You give me hope for my dad - he will start standard radiation this Tuesday but he’s 64 and 137 pounds so I’m worried even more for him. While it’s not the best option for him, unfortunately it is now the only option he has and we don’t have time left to fight insurance anymore based on his latest scans last week. Putting it off any more could kill him they said and I’d rather my dad receive standard than die fighting for IMRT. It’s horrific that he was forced into accepting something that they know will cause him issues but it’s all we can do. And your story gives me a lot of hope - thank you!! And the attorneys I called were useless, telling me they don’t deal with that!!
Goes to show you how evil these corporate b*stards are. Your Dad's life doesn't matter to them, only profits. I am being forced to change insurance coverage here in Minnesota from an expensive Advantage BCBS policy due to a federal law change in medicare. The change BCBS wants me to make is to an even more expensive BCBS similar policy. I will let them know it's not going to happen and site your Dad's case as the reason. Don't think this is making America Great. I hope BCBS goes totally broke and the politicians that get millions from them get thrown out of office. Feel free to copy this off and send this to anyone you want. Sorry and best of luck!
Yes, evil is just about how I would describe the insurance company and what they do to people! I am so angry over this but I’m trying to come to terms with it as holding onto anger isn’t good. But it’s such an injustice to my dad and everyone else out there who is going through the same thing. Stage IV should not be looked at any differently than stage I - in the end we’re all human and we all want to fight and live and insurance should give everyone the best possible chance equally as the next person!! My dad owned a small business his whole life and worked his butt off, paying $900 a month for insurance because self employed. This is what insurance got him. Standard radiation to his heart. I haven’t seen an update from you in a while - how are you doing?? I last saw you were responding well to chemo which is awesome!!
My heart breaks for you but ynkefan gives me hope.
You said you did a social media campaign. Was it Facebook or Twitter? I ask because my friend Tori succeeded on Twitter with Michigan BCBS. My friend Linnea got her Massachusetts COBRA reinstated by hitting them on Twitter and emails. Dr Jack West got approval for his patient from Washington State BCBS by hitting them on Twitter. What ynkefan said about going viral? That how they accomplished it. Should we try one more time? You supply me with some info and I will put it out on #lcsm and see if we can start something viral?
Thank you, Denzie! I am absolutely heartbroken myself and just feel very defeated and backed into a corner where we now have no other choice but to accept standard. He is set to start standard radiation this Tuesday. I am still so upset about this that I just want to cry but I’m not letting my dad see it as I told him this will be ok and we will get through this part. I did a Facebook campaign - it got shared over 200 times and blue cross contacted me over it. But in the end the lady said “we have guidelines we follow” so basically oh well for your dad. Because he is now set for standard radiation Tuesday I think it’s too late to do anything more. I wish we had more time to fight this as I want to continue fighting so badly but I don’t want my dad dying while fighting for IMRT as they said he could, so I feel we’re screwed either way now.
Do you know anything about the abraxane , carboplatin and Keytruda combination? He failed chemo now and after he gets 15 standard radiation treatments his oncologist is switching him to that combination 2 weeks after his last radiation dose for second line treatment. My understanding is that abraxane is a tough chemo, but I see this combo together is rather new or so it appears it is.
Do you think something could happen before Tuesday? He’s set for standard radiation Tuesday at 11 am and they already did the mapping for standard Friday as he was previously mapped for IMRT. I don’t have a twitter account though, but I will gladly give you any info you need to know!!
Can you provide me with a link to their homepage on Facebook? We have till Monday. The worst that could happen is they don’t do it. Also your dad’s middle initial. And his radiology doctors name. I found their Twitter account so I’ve got that.
His middle initial is W and radiation oncologist is Dr Justin Rineer. Thank you for all your help, Denzie! You’re right - the worst that can happen is what has already happened!
Also, I do know their email socialmediasupport@floridablue.com was the email they asked me to contact a few days ago and an escalations team member wrote me from that email address so it gets to someone at Florida Blue through that.
Lisa I had Taxetere,carplatin,abraxan after 3 months He took me off Taxetere and said it was killing me. So he put me on abraxan plus the carplatin. Back than the abraxan was only 5 years old they had found it went directly to the cancer and left good cells alone. Granted mine was small the Dr said it was slow growing but very aggressive it went into my lympnodes. I chose not to do radiation because I was told it would ruin my esophagus and I would have to be tube fed. Plus it would harm my good lung. They removed the upper lobe on left side and a few nodes. I had stage 3. I did altogether 6 months chemo. It has now been 6 year's cancer free. I'm a cancer survivor three times I had it in my cervix I was 22 had hysterectomy. The next was breast I had a mastectomy. Than my left lung. The reason I'm telling you this is so you and your dad won't give up keep fighting and have hope. Love susie
Thank you for sharing your experience! I pray he does well on it after radiation. You are definitely one heck of a fighter! And we won’t give up - thank you for giving us all hope!!
If you still plan to purse these, and was us to "tweet" or "email", please share the addresses and we'll continue to help you.
Makes no sense to "deny" and in the same statement state that it's the best treatment??
Have you thought about contacting the Bonnie Addario Lung Foundation, as you know they have now joined this group and they are a large and pretty powerful group and getting the world out through them, MAY also help you.
Thank you, Lisa! Unfortunately I don’t think there’s enough time to do anything as he is set for standard radiation this Tuesday. They said he will die from the tumor on his heart if we wait so I can’t justify continuing to fight for IMRT if he dies while waiting for something to happen. So we had to give in and accept standard now. I am so angry over this but everything I did got nowhere. I will look into the Bonnie Addario Lung Foundation though, thank you!!
Me again. I am so very sorry for what you and your dad and mom are going thru. It is very hard to believe an insurance company does this.
I just wanted to say my husband did chemo and Keytruda and it was not successful. In fact he had to go on oxygen during that time. Chemo does not seem to work well for him and Keytruda affected the lungs in a negative way. I do not mean this to be a downer, just want you to be aware. Some people do extremely well on chemo and/ or Keytruda. Everyone is different and the only way to know is trial an error. But, you must continue the treatments to know.
My husband was put on Opdivo when the Keytruda failed. I am afraid it is the last hope for him. He has had 5 treatments of Opdivo and the last scan said the tumor was stable. The only problem has been loose bowels which the doctor treated. We will take it and hope it continues. I have heard of people having years of immune treatment successfully.
I have been tempted to ask you about the immune drugs and if they were offered. They may be the answer
for your dad. If tolerated, They are usuallyI easier on the body than chemo. I know time is critical and many prayers are being sent for help for your dad.
Thank you, Gloria! The external review denial email came yesterday and stated basically because he is stage IV and not “curative” they won’t approve the IMRT. Makes me so upset!
That’s what I’m afraid of with the Keytruda and chemo, but his oncologist says that is definitely where he wants to go next after radiation with the Abraxane, Carbo and Keytruda combo. My dad was just on the Carbo/Alimta and then Alimta maintenance in a clinical trial where he took 9 Pirfenidone pills daily. He didn’t feel well in the trial, but was stable until August, and thought it was the chemo, but in actuality we believe it was the Pirfenidone making him sick for the clinical trial. His oncologist has stated in the past he won’t try both Keytruda and Opdivo at different times and that it’s either one or the other. So since he’s doing Keytruda with my dad it’s unlikely he will try opdivo on him as a future treatment. I hope he changes his mind later on and my dad can get opdivo if he should need it. My dad had a PDL1 of 0 in March but hasn’t been retested yet since chemo failed.
I am hoping you will get other replies from people on Keytruda. I think people have taken it successfully. There was a time I would not have recommended Opdivo as I mistakenly thought Ed could not take it. It was our last hope and his Oncologist said sometimes people blame a problem on a drug wrongly. Apparently that is what Ed did because he was coughing up blood on Keytruda and has not coughed up blood for
4 months now and tumor is stable. I asked the Oncologist how long he would be on Opdivo and he said as long as he can tolerate it. At stage 4,
We know things could change in a moment.
I was very encouraged that Opdivo started helping him so soon.
I wish there was a doctor who could/would sit down and talk to you about the difference between Keytruda and Opdivo. And again, everyone reacts differently. Ed reacts very, very well to radiation but can not have any more without a couple of procedures that I fear would be too much for him. Chemo did not help at all.
Hopefully, the radiation will buy you a little time and you can look into
both Opdivo and Keytruda. Two oncologist said Keytruda can effect the lungs badly. But, perhaps the important word is could. I think I have read that some folks on here have done well on Keytruda.
Most times when I have been frustrated, I take a minute to sit calmly and the correct answer seems to come. We changed doctors from a doctor that has a wonderful reputation in town but I knew we needed to make a change to someone we could talk to and someone who would listen to us. Sit for a while, relax as best you can and let the answer come for your future steps. Some times it feels there is no way to turn and I would be very frantic myself.
As you have heard from so many people on here, much love and hope are coming your way for you, mom and dad.
I don't know why your doctor won't do Keytruda or later Opdivo. Ed had Keytruda in April. It was stopped and Opdivo started in May. Given a choice, if the choice is yours, you might consider Opdivo first from our experience. But you need to know more.
I think there are doctors on line who are willing to talk to you. You just need more information about immune drugs.
Lisa were still trying to raise Cain and we will. Were not letting them go Scott free. There's nothing like a woman on the war path. It takes a woman to get things done. Love susie jo1948
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