Ipi/Nivo did not work

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Iggyrip
Iggyrip Member Posts: 44
in Kidney Cancer #1

Hello All, I have not posted in a while because I was putting all my time and effort in my immunotherapy treeatmemtn  (Ipi/Nivo).  Unfortunately,  my latest  scan indicates it did not work and my doctor wants to put me  on Sutent. Anyone have luck with this therapy?

 

Thank you for your time,

Iggyrip

Comments

  • Dominick0711
    Dominick0711 Member Posts: 99 Member
    #2
    History

    Can you provide more history?  From your profile it isn't clear that your cancer had metastisized.

  • Manufred
    Manufred CSN Member Posts: 241 Member
    #3
    Worked for me

    I am a poster boy for Ipi/Nivo.  Full details on my Profile Page.

    Sorry it has not given you the same outcome.

    Best Wishes, Fred

  • Iggyrip
    Iggyrip Member Posts: 44
    #4
    Dominick0711 said:

    History

    Can you provide more history?  From your profile it isn't clear that your cancer had metastisized.

    My right kidney was taken out

    My right kidney was taken out Oct. 2016 and was Stage one. In Summer of 2018 I had back aches and during my 6 month CT scan, a new tumor was found in my lumbar spine A biopsy confirmed it and I had Radiation to shrnk it (did not work) and immunotherapy.  Sorry, need to update my profile.

  • eug91
    eug91 CSN Member Posts: 471 Member
    #5
    iggyrip-

    If you haven't already, consider signing up over at smartpatients.com. There're users there who can speak to their experience with sutent. 

     

  • EBFRCC
    EBFRCC Member Posts: 23
    #6
    Didn’t work for me either

    (I have been away from the site for awhile, sorry for the lack of updates.)

    i wanted to chime in here. I was on Ipi/Nivo for six months. I had slow, but steady progression. My clinic just started as part of the Lenvatinib plus Pembrolizumab clinical trial (https://clinicaltrials.gov/ct2/show/NCT02501096). I had my six week scan (after two cycles) and it seems to be working. Maybe it’s something you could look into. Good luck.

  • Jan4you
    Jan4you CSN Member Posts: 1,330 Member
    #7
    Welcome back, Iggy! Glad to

    Welcome back, Iggy! Glad to "see" you!

    Sorry this treatment did not work for you. What happened after your stage I, the back pain?

    Hope you get a treatment that works. Keep us posted! I'll be here for you all the way!

    Healing hugs,

    Jan

  • Bellafelice
    Bellafelice Member Posts: 57 Member
    #8
    Manufred said:

    Worked for me

    I am a poster boy for Ipi/Nivo.  Full details on my Profile Page.

    Sorry it has not given you the same outcome.

    Best Wishes, Fred

    Dear Manufred,

    Dear Manufred,

      Thank you for posting your success with Nivo. My hubby has been getting infusions of it for the past 6 1/2 months with no side effects (so far anyway). 

    My question is that he does say he has pain in his two tumor sites ( he only has two tumors in his spine as of now). I wanted to know if you ever experienced tumor pain and/or if you know anything or anyone who also had that with good results. Our oncology radiationist said he thinks its a sign that the tumors are being attacked by the Nivo and dying (we go back for more scans in June, but being impatient just wanted some info and maybe some hope).

    Thanks for being here. Sincerely-Marilyn

  • Bellafelice
    Bellafelice Member Posts: 57 Member
    #9
    Manufred said:

    Worked for me

    I am a poster boy for Ipi/Nivo.  Full details on my Profile Page.

    Sorry it has not given you the same outcome.

    Best Wishes, Fred

    Dear Manufred,

    Dear Manufred,

      Thank you for posting your success with Nivo. My hubby has been getting infusions of it for the past 6 1/2 months with no side effects (so far anyway). 

    My question is that he does say he has pain in his two tumor sites ( he only has two tumors in his spine as of now). I wanted to know if you ever experienced tumor pain and/or if you know anything or anyone who also had that with good results. Our oncology radiationist said he thinks its a sign that the tumors are being attacked by the Nivo and dying (we go back for more scans in June, but being impatient just wanted some info and maybe some hope).

    Thanks for being here. Sincerely-Marilyn

  • Manufred
    Manufred CSN Member Posts: 241 Member
    #10
    Bellafelice said:

    Dear Manufred,

    Dear Manufred,

      Thank you for posting your success with Nivo. My hubby has been getting infusions of it for the past 6 1/2 months with no side effects (so far anyway). 

    My question is that he does say he has pain in his two tumor sites ( he only has two tumors in his spine as of now). I wanted to know if you ever experienced tumor pain and/or if you know anything or anyone who also had that with good results. Our oncology radiationist said he thinks its a sign that the tumors are being attacked by the Nivo and dying (we go back for more scans in June, but being impatient just wanted some info and maybe some hope).

    Thanks for being here. Sincerely-Marilyn

    No Pain

    Marilyn,

    I never experienced any real pain throughout my whole cancer journey.  I did on occasion get little niggles throughout my abdomen where I thought some of my tumours may have been, but the doctors did not think they were anything real.  But then, I did not have any bone mets at all, only in my pancreas, a few lymph nodes and some on the peritoneum.

    Some of the niggles (not really pain, just more of a tingling sensation) were on my ribs, where I did not have any identified mets.  Maybe Ipi or Nivo like tingling bone cells.

    I hope the tumours and the pain both go away in time.

    Best Wishes, Fred

  • Iggyrip
    Iggyrip Member Posts: 44
    edited April 2019 #11
    Jan4you said:

    Welcome back, Iggy! Glad to

    Welcome back, Iggy! Glad to "see" you!

    Sorry this treatment did not work for you. What happened after your stage I, the back pain?

    Hope you get a treatment that works. Keep us posted! I'll be here for you all the way!

    Healing hugs,

    Jan

    Hi Jan, Unfortunately, the

    Hi Jan, Unfortunately, the back pain ended up being a tumor. This suprised me because I was hoping my cancer was caught early' however, cancer had other plans for me. i am now Stage Four and undergoing immunotherapy. Thanx for your kind works. I have been having trouble updating my profie, but will update it once I figure things out. 

  • Bellafelice
    Bellafelice Member Posts: 57 Member
    #12
    Manufred said:

    No Pain

    Marilyn,

    I never experienced any real pain throughout my whole cancer journey.  I did on occasion get little niggles throughout my abdomen where I thought some of my tumours may have been, but the doctors did not think they were anything real.  But then, I did not have any bone mets at all, only in my pancreas, a few lymph nodes and some on the peritoneum.

    Some of the niggles (not really pain, just more of a tingling sensation) were on my ribs, where I did not have any identified mets.  Maybe Ipi or Nivo like tingling bone cells.

    I hope the tumours and the pain both go away in time.

    Best Wishes, Fred

    Thank you

    Dear Manufred,

      Thanks so much for your caring reply. I wish you many more healthy and happy days!!
    With gratitude-Marilyn

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