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Immunotherapy

  • By bcmc1987

    Hello all. I have just finished chemo and radiation for NSCLC Stage III adenocarcinoma. I have been told the tumor did shrink and I responded well to the treatments. The doctor is going to start me on Immunotherapy for 6 months. My biopsy was not tested for DNA, etc, so I wonder how he would know which Immunotherapy to give me. Is there anyone out there that has had a similar experience? I would like to learn from others who have lung cancer what you know.

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    • By bcmc1987

      Hi Cathy. I am a Patient Financial Services Director and I have a lot of experience with insurance companies. You need to call their insurance company and find out if this will be covered and they can also tell them an estimate of their out of pocket. If you call you will need the policy owner with you so they can give permission for BCBS to speak with you. BC usually has a pretty good website where you can look up what they cover but it is always best to go straight to your own plan and ask those questions. If they have a Medicare advantage plan it should cover whatever Medicare covers but your out of pocket might be different. My husband has Medicare and a supplement and that should cover his Imfinzi. Also, the oncologist office should be able to tell you. I would think they would have someone who keeps up with the insurance and gets pre-authorization for any service that may require it. I do this all the time for people who do not know what their policy covers. I would doubt that they would give her the drug without informing them of their cost, but it is the patient’s responsibility to know their policy (I find many people just struggle with reading their policies, so calling the member number on the card is the best thing to do). Sorry, hope I am not rambling too much.

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  • By Donna Fernandez Moderator

    Hi @bcmc1987,

    I have NSCLC Stage IV adenocarcinoma. My tumors also responded to my first-line treatment, but as soon as we stopped the chemo, the tumors quickly grew back to their original size.

    My then-oncologist suggested that I consider joining a clinical trial. I did … and it turned out that it was for immunotherapy. My tumors had not been tested for PDL-1 either, but the immunotherapy drug I was given doesn’t require a certain level of PDL-1.

    With that said, I am no doctor, but I am a strong advocate for tumor testing. I pushed my doctor to do genetic testing because I wanted us to have the best possible information available when deciding on treatment choices.

    Here is some really helpful information about tumor testing that you might want to consider:

    https://lungcancer.net/living/tumor-testing/

    I have been getting immunotherapy for over 4 years. It has quite literally saved my life. Some people have their tumors disappear altogether. Mine didn’t shrink or go away, but they remained stable for 4 years. One tumor finally outsmarted the treatment so I had radiation to it. Then, I went back on immunotherapy.

    I hope you have as good an experience as I have with immunotherapy!

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    • By sgmk

      Hi. I’m so happy to see that you are experiencing some positive results!

      My partner was diagnosed with Stage IIIb last Nov. and has been on Imfinzi for 4 months. So far, so good.

      My question is: Her insurance will cover one year. Could you share your experience with cost issues surrounding a four year treatment?

      Do you have any guidance for helping her to continue treatment after her year is up, if she is still responding well to the treatment?

      Thank you so much!

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    • By Donna Fernandez Moderator

      Hi sgmk,

      I am so happy to hear that your partner is doing so well on Imfinzi! That’s GREAT news!!!

      I was in a clinical trial for 4 years. My insurance company only had to pay for “standard of care” treatment. It didn’t have to pay for the nivolumab.

      I had to leave the trial a year ago, so my insurance has had to pay for all care for the past year. My doctor intends to keep me on the treatment until it quits working (and it hasn’t really quit working in 5 years so who knows how long that will be). To my knowledge, my insurance company has not complained (I am on Medicare as my primary insurance).

      I am an insurance dummy. I hate dealing with it. So far, my clinic has done everything for me.

      I would think that maybe your doctor will be able to make a plea with your insurance company if she or he believes your partner should continue her treatment. From what (very little) I know, appeals happen all of the time and doctors can often persuade the companies to change their minds.

      Otherwise, I really don’t know. I’m hoping someone way more knowledgeable than I am can help!!

      Again, I am thrilled that your partner is doing so well. That’s GREAT news!!! Here’s hoping she’ll be NED by the time her insurance wants to quit paying for her treatments!!

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  • By bcmc1987

    Donna, thank you for your response. Very helpful. Since this is stage III there are certain treatments not approved and paid for by Medicare. The doctor said I would have to be stage IV for DNA testing or other treatments not working and so far they are working. I have asked the doctor about testing the biopsy for additional information and that was his response. At this time I am doing so much better so I am currently on Imfinzi every two weeks for six months. I am praying that it works for me. I will have another CT scan in a few weeks to determine the status of the tumor. I am so excited to hear you have had a wonderful experience with Immunotherapy.

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  • By Donna Fernandez Moderator

    Hi bcmc1987,

    I learned something today! I didn’t realize you have to be stage 4 before Medicare will pay.. I could get on a soapbox about that, but I guess I won’t.

    I am so, so glad that your treatments are working!!!! I hope and pray that continues for many years into the future!! Please come back and let us know the results of your scan.

    In the meantime, i am going to start lobbying for the approval of earlier testing!

    Have a great weekend!!!

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  • By bcmc1987

    I want to clarify that I am assuming that it would not be covered because of what the doctor said. He made reference to being approved for my stage so I just assumed it would not be covered by insurance. I know insurance has rules on when they will pay for certain treatments. I know the doctors realize most patients cannot afford to pay for the drugs unless they are covered. Imfinzi is approximately a 180,000 for a year of treatments. No way I could pay that out of my pocket even with a big discount.

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  • By Donna Fernandez Moderator

    @bcmc1987,

    I run fast in the opposite direction when insurance is mentioned. Nothing frustrates me more. I never understand it.

    I totally get what you are saying about cost of drugs! I was in trial for 4 years so wasn’t charged for my treatment drug. I was dumbfounded when i got the first bill for a month’s infusions after getting off of the trial. It was something like $52,000 and that didn’t pay for anything but the drug and maybe having it infused. Wow.

    I know my doctor has said that if there are two, nearly equal treatments, but one costs far less, he will try the least expensive first. With that said, i had severe nerve pain recently. He chose to prescribe Lyrica (about $1200 A MONTH) over gabepentin, which would have been about $20
    He felt the side effects were less with Lyrica. I nearly had a heart attack at the cost difference.

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  • By cathym

    Hi all! My Mom has adenoidcarcinoma stage 3a lung cancer. She is finishing up chemo-radiation on 2/7/2018. The oncologists are recommending Imfinzi every 2 weeks for a year. My father is a bit stressed about the cost of immunotherapy.. I heard some insurance companies are starting to pay for it. They have BCBS. I tried to talk them into true Medicare with a secondary but she had just been diagnosed the last day of open enrollment and they were overwhelmed. Does anyone know if insurances, what insurances, are covering Imfinzi for ling cancer? Any advice?

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  • By bcmc1987

    Just to clarify my husband is who I signed into this website. I read and write everything for him. I am the one who works as the Patient Financial Services Director. We want to connect with others and learn all we can together. He does not care too much for technology 🙂

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    • By Margot Keymaster

      Hi @bcmc1987,

      It is wonderful that he has you to help with all of this! Thanks so much for sharing and being a part of our community – we are so happy to have you here, and hope that you will be able to connect with others and learn as much as you wish to! Thanks so much for sharing the helpful info above!

      Best,
      Margot, LungCancer.net Team Member

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