ipilimumab and nivolumab Updates

dancnbear1
dancnbear1 Member Posts: 86
in Kidney Cancer #1

Been a while since I last posted but the bottom line is last CT Scan (About 3 weeks ago) showed some shrinkage, a little growth but that was on a site that had shrunk prior, elimination of a small nodule on lung, nothing has grown larger then when I first started program in Feb of 2014, and no new sites. Overall about a 20% reduction in total volume being measured. Not bad considering the side effects that I had and the fact that I never was allowed to have all 4 shots. I am/was in cohort that got maximum of both drugs and unfortunatley I have had numerous issues/side effects that required multiple hospital stays (about 20 days over a 30 day period). Now working to get off steriodsand having issues with that. So I have had side effects to the infusion drugs and side effects to the drugs that were there to help me with the side effects of the infusion drugs or something like that. SO CONFUSED.

Will know in a couple of weeks if I can get into maintenance but with what happened with the first 3 shots I am not confident.

Comments

  • angec
    angec Member Posts: 924 Member
    #2
    Glad to see there was some

    Glad to see there was some shrinkage and stability... Sorry for all you have been going through.  Soon the  Nivolumab will be available by itself.. Keep your chin up and never lose hope...

     

    http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/anti-pd1-opdivo-nivo-approved

  • dancnbear1
    dancnbear1 Member Posts: 86
    #3
    Looks like the one adrenal

    Looks like the one adrenal gland that I have is not working so well so I now have to take hydrocortisone to get my levels to normal which are now non existant.

  • Raine22
    Raine22 Member Posts: 33
    #4
    Nivo/ipi/remaining adrenal

    My case similar to yours.   last week I had 2nd set of scans after 4 infusions of the combo, which pretty much matched the first scan, although there was more growth to the tumor in the remaining tumor.  They went ahead and gave me Nivo only infusion as planned, but said the trial radiologist will have to determine if I continue on the trial or get kicked out.

    They also had to increase my thyroid meds s t3 and t4 continue to drop.  Ive very little enery, i ache all over, feel fevery, but no fever, extreme night sweats.

    Anybody out there been thru this or thoughts on getting kicked out of trial and next poossible drug?  I was trying to save the remaining adrenal in case i need stronger drugs in future, because i understand if you are steroid dependent,  then you may not qualify for some of the drugs available.

    Thanks,

    Lorraine

     

     

  • dancnbear1
    dancnbear1 Member Posts: 86
    #5
    Raine22 said:

    Nivo/ipi/remaining adrenal

    My case similar to yours.   last week I had 2nd set of scans after 4 infusions of the combo, which pretty much matched the first scan, although there was more growth to the tumor in the remaining tumor.  They went ahead and gave me Nivo only infusion as planned, but said the trial radiologist will have to determine if I continue on the trial or get kicked out.

    They also had to increase my thyroid meds s t3 and t4 continue to drop.  Ive very little enery, i ache all over, feel fevery, but no fever, extreme night sweats.

    Anybody out there been thru this or thoughts on getting kicked out of trial and next poossible drug?  I was trying to save the remaining adrenal in case i need stronger drugs in future, because i understand if you are steroid dependent,  then you may not qualify for some of the drugs available.

    Thanks,

    Lorraine

     

     

    Lorraine:
     
    I was told that a

    Lorraine:

     

    I was told that a few of us in the trial have gone from Hyperthroidism to Hypothroidism (thyroid levels dropping). That is what happened to me so I am now on Levothyroxine to level things out. Seems to have worked (The ycheck my levels via giving blood on a weekly basis). I did have sweats which I believe was do to the steroids they put me on. Once they changed my steroids to decadrone that stopped. For me I had issues with some type of infection that put me in the hospital for 20 out of 30 days but after a soild week on anti biotics I was Ok (that was why I was on steriods). I too lack energy and sometimes ache but that is most likely do to the infusion or cancer. I just try and get as much rest as I can and slip in naps over the weekend. I started to trial in February.

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