New here, husband has stage 4 kidney cancer

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  • Jeffris1
    Jeffris1 Member Posts: 41
    #22
    Looks like I'll go bankrupt

    Anybody know how to get help with the cost?

  • saintmont
    saintmont Member Posts: 63
    #23
    keep going

    Hi, I was told when I had my RCC I had less than 20% chance to make it 5 years its now 6 1\2, I was stage 4. There are new treatments out there and new ones coming. I have just had my last RCC removed from my neck so I am in remission. So keep going

    Regards saintmont 

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    #24
    Jeffris1 said:

    Looks like I'll go bankrupt

    Anybody know how to get help with the cost?

    One thing at a time

    Your question about cost and your concern about bankruptcy remind me of a close family member who had heart surgery 25 years ago. I had promised them that I'd go down to the hospital's patient financial office to ask a list of questions while they were having surgery. I dutifully wandered around, found the right office, talked to someone, and was introduced to the department manager / VP. "How long ago was their surgery?" "Oh, they just got taken in about 30 minutes ago."

    Imagine my surprise that I was escorted out of their offices, provided with a cup of coffee, shown where the cafeteria and the chapel were, then handed off to the family liaison in the surgical waiting area. "One thing at a time. Wait until we all know what sort of follow-up there'll be. For now, this is where they'll call you post-op with info." 

    We didn't go bankrupt, although it wasn't RCC surgery. He may end up participating in a trial (or not) and you won't know what you need to track down until you know what you have to track down. There's assistance, there's payment plans, there's different things that are covered in different medical centers, and drug companies do sometimes discount drugs or make them available for free. 

     So anyway... No sense standing in line for an E-ticket ride yet when the park doesn't open for another month. Keep us posted - !

  • Manufred
    Manufred Member Posts: 241 Member
    #25
    Standard prognosis

    When I was diagnosed with mRCC (which is by definition Stage 4 inoperable) I was also told 2 years but probably not five.  Obviously the standard response, with no consideration of your individual physiology or condition.

    That was three years ago, and I have been in complete remission for the last 18 months.  Regardless of what happens next, I reckon I'll see five years, unforeseen events excluded.

    No one ever knows.  Shame however that finances come into these things. You should not have to buy life.

    Stay positive, you never know how things will turn out.

  • Jeffris1
    Jeffris1 Member Posts: 41
    #26
    Thanks all.

    LLooks like 25,000 so far out of pocket.

  • Bellafelice
    Bellafelice Member Posts: 57 Member
    #27
    Jeffris1 said:

    We talked to the doctor about immunotherapy (Ipi/Nivo)

    We talked with the doctor about the immunotherapy (Ipi/Nivo), and he said that it looked like a good match for what he has.  He said it is terminal, but he could live for quite some time.  It is Stage 4 with proabably T2.  That is all we know so far. I also asked about the kidney cancer vaccine, but with him getting his kidney out next week there isn't enough time to look into that.  It is very new.  But I have to try to get him to think positive.  After the doctor said it is terminal he crashed.  The doctor said 2 years min, but who knows.  After talking to you all, I see that he could have many more. 

     

    Some advice from another wife in same situation

    Dear Jeffries1-Here is so help for you. 

    1. Go to the online site Smart Patients-join the kidney cancer support group. Massive amount of information about new drugs for RCC-beyond helpful in all ways.

    2.Make absolutely certain to consult an RCC SPECIALIST-not just an oncologist. It makes a huge difference when you see a specialit in kidney cancer as many oncologists have very limited knowledge of RCC as it is a much rarer form of cancer. The Smart Patients members can advise you where to go in your state.

    3. There are indeed many people who have lived 10 years and more  after being diagnosed. My hubby had his kidney removed 10 years ago-at age 54. Some mets discovered and treated last year-so far he is doing very well-he had SBRT (Radiation) to spinal mets and has been on Votrient and responding well. Dont even go into thinking of this as Stage IV end of life. Many people are seeing it as a treatable chronic disease.

    Please fee free to write back anytime, and I am more than glad to talk at length with you.

    Most sincerely-Marilyn 

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