Six weeks from surgery and it appears to be back

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Comments

  • Deanie0916
    Deanie0916 Member Posts: 616 Member
    #22
    Tom thanks for sharing.

    Hope you can get on the best treatment soon.My follow up scans have showed small nodules in my lung and one in my remaining kidney but they are super small and haven't changed. Good thoughts and prayers are with you.

  • Deanie0916
    Deanie0916 Member Posts: 616 Member
    #23
    Tom thanks for sharing.

    Hope you can get on the best treatment soon.My follow up scans have showed small nodules in my lung and one in my remaining kidney but they are super small and haven't changed. Good thoughts and prayers are with you.

  • Sunono
    Sunono Member Posts: 26
    #24
    My prayers and good prognosis

    My prayers and good prognosis!

  • Manufred
    Manufred Member Posts: 241 Member
    #25
    TomHop said:

     Hi Fred, thanks for the note

     Hi Fred, thanks for the note. I had a radical right kidney nephrectomy on 2/7/19. This past Monday I went in for bloodwork and a scan for the purpose of entering a clinical trial Ipi/Nivo for patients out of surgery (12 weeks or less), with a high risk for recurrence. My pathology was stage 3, grade 4 tumor. While it was extensive-my right kidney, renal vein and vena cava, it hadn't spread anywhere else based upon my scans. Additionally margins were clear and nearby lymph nodes were also clear My scans this past Monday showed a few small nodules 4-5 mm in my lung and another 1 cm in a nearby lymph node. So the trial is on hold until I have a bronchoscopy and biopsy this coming Wednesday. I won't have solid confirmation until after Wednesday but I am not optimistic. By the way, did you experience any side effects?

    Tom

    Side Effects

     Tom,

    I was lucky with only minimal SE's.  My thyroid was destroyed by the Ipi so I now take thyroxine tablets daily (no big deal).  I also experienced a skin rash that is quite common with Nivo, and again no real trouble to me.  Just a few red spots here and there every now and then - treated with a steroidal cream.

    I hope they do try Ipi/Nivo on you.  Yours seems to me the perfect situation for immunotherapy to mop up what was left after the Op.

    Hope it work out well for you,

    Fred

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited April 2019 #26
    Waiting for results is

    Waiting for results is difficult.  I certainly pray that your results will be good.  Whatever happens, make sure that the doctor presents all of your choices re any treatments or follow ups.  Our experience has been that we were initially only told what that doctor could do, and what the facility had available.  We had to seek out other specialists at other facilities.  My husband saw an interventional radiologist, and also saw a pain specialist.  I just think it's important that you are given all your options.  

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