Sticking my neck out, and saying hello...

pamstayner
pamstayner Member Posts: 111 Member
edited September 2016 in Kidney Cancer #1

Been a turtle for awhile up here on the Oregon Coast.... figured I better check in, and catch up on everyone on the board.  I just finished my 15th infusion of Nivo, and scan results from August are in....  No evidence of cancer in my brain MRI...  my oncologist did not say disease.. he said cancer... so does that mean I am NEC?  I don't know.. but I'm sticking with that... NEC.

The chest scans show that I am still "stable" so okay... NEC and stable I am.  Still only have joint pain (getting used to it) and fatigue ( lazy? ) some days I just want to sleep 12 hours... or just lay in bed for that long....

So,just read Footstomper.. that you were going to start radiation on Luke... So how does it go friend?  I asked for the three lung mets I have to be zapped ... when I started the Nivo.. and was told no... unless I was in a trial.. it still was experimental, and they will not do it.  Beginning to think that my oncologist beleives me so boring that he doesn't understand my great desire to be PRO-active in treating my cancer.  I have to admit I think with no side effects, and no progressions that I too have a "placebo" medication... so they figure why bother with her.....

I am not complaining... only commenting...I think we have half the ocean's bounty of smoked salmon to take home this year.  Will spend a few days catching up on everyone.

Thanks....  Pam

Comments

  • hardo718
    hardo718 Member Posts: 853 Member
    #2
    Great news Pam

    So happy you shared that. 

    Smoked salmon?  Sounds yummy!  What's the address?  ;-)

    Donna~

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #3
    Too soon to say

    I think the radiologist isnt so sure, but I asked my Oncologist to go ahead with it (it was his idea) and so we are. I see the radiation doc tomorrow, and then we'll see how we proceed. It is still VERY experimental, my wife ( a research oncologist/epidemiologist) could only find one overview paper which talks mainly about results in mice....I'll post on here how I get on.

    "I have to admit I think with no side effects, and no progressions that I too have a "placebo" medication" Are you sure you dont have a placebo disease?

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #4
    Good to hear from you Pam!

    Good to hear from you Pam! And with good news, to boot! Keep it up!

    Hugs

    Jojo

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #5
    Just wanted to say HI Pam and

    Just wanted to say HI Pam and glad you stopped in. Salmon.. yumm..

    Hope everything continues to be on the up and up for you!

    Hugs, Jan

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited September 2016 #6
    Immunology and Radiation

    So the radiation is stopping onMonday, the day before my next infusion. The Rad is convinced I have enough radiation in my system (they had been giving me 3x the normal dose) and they are worried about damaging my lungs. We'll see. I speak to my onc on Tuesday

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited September 2016 #7
    didja

    get that MMJ thing squared away yet? I still say thank god for it.

  • pamstayner
    pamstayner Member Posts: 111 Member
    #8
    no respect Fox..

    I cannot get MM ... figures... my oncologist also works at the VA ... so cannot write one.  He gave me OPVIDO instead... since I am so symptom side effect free (other than joint pain) I have not continued the quest.  Rest assured, if I ever have to return to a TKI... I will lobby every medical person for a perscription.  California may legalize it anyway.. so who knows?

    Lots and lots of cancer patients benefit from MM.  I intend to become one if I have to.

     

     

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