Opdivo

Sadiestorm
Sadiestorm Member Posts: 1
in Kidney Cancer #1

I've been opdivo for about a month and a half. Just wondering if anyone else is. I have stage 4 rcc. I'm wondering what side effects people are having and what their experience is. Also is it working for you? 

Comments

  • penitent
    penitent Member Posts: 79
    #2
    Opdivo

    My SIL has stage IV, grade 4 SRCC and has been on Opdivo for probably 6 months or more.  He basically reports extreme fatigue and now, most recently elevetaged liver enzymes which can be a possible SE of Opdivo (hepatitis).

    BUT, that aside, it has worked well and kept tumors at bay along with some SBRT.

    Keep it up!

  • rhominator
    rhominator Member Posts: 233 Member
    #3
    Not NED, but Good

    Hi Sadiestorm, I've been on Opdivo for 8 months after being on Votrient for ~3 years. Just got my PET/CT scan results today. Not NED, but mostly good: all mets have reduced with the exception of two bone lesions.

    My most notable side effect has been skin rashs. I switched to off-the-shelf moisturing, sensitive skin soaps to abate that problem.

    So far, it works for me!

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #4
    A friend on Opdivo for lung cancer

    She had most of the truly bad SE after about a year plus.  Fatigue, unable to eat or have a desire to eat and the worst was the problems with vision.  She saw an Opthalmologist who looked up all the side effects and determined that they were caused by the cancer drug.  She's been off it for about 4 months and is doing OK, with all the SE going away.

    donna_lee

  • Manufred
    Manufred Member Posts: 241 Member
    edited September 2017 #5
    Opdivo (Nivolumab)

    Sadiestorm,

    There is a fair bit of information on Opdivo efficacy and side effects on this discussion baord - read the threads on Checkmate 214 and BMS for a start.

    My own expereince has been nothing short of miraculous (so far).

    Best of luck,

  • angec
    angec Member Posts: 924 Member
    #6
    I  have seen people on it

    I  have seen people on it with very little or no side affects.I hear that the first scans after you start can show things lighting up but is only a reaction/ inflammation from the drug. Not an indication of progression.

    Rhominator, will they radiate the bones?  All the best!

  • rhominator
    rhominator Member Posts: 233 Member
    #7
    angec said:

    I  have seen people on it

    I  have seen people on it with very little or no side affects.I hear that the first scans after you start can show things lighting up but is only a reaction/ inflammation from the drug. Not an indication of progression.

    Rhominator, will they radiate the bones?  All the best!

    Radiation is on tap

    Yep. Ready for the next round.

  • larry54
    larry54 Member Posts: 14
    #8
    Why Opdivo

     

    I also have stage 4 RCC diagnosed at the end of 2016.  It was several months from diagnosis before going on meds (I had surgeries etc.), but when I did it was Votrient.  My doc told me that was the medication of first choice so I guess I am just curious why your doctor put you on Opdivo?

     

    I have had one scan since starting the regimen, and Votrient seems to be working.

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited September 2017 #9
    If you find time

    read back to when i joined this forum. I posted a pretty detailed history of being on opdivo/nivo.

    larry, nivo vs votrient are 2 different drug mechanisms. nivo uses the immune system. Votrient is a blood vessel growth inhibitor. There are indications for each. It's good to know about the treatments available so you can choose them with your doctor. This is important because one is a potential cure, and the other is just a tumor suppressor.

  • Manufred
    Manufred Member Posts: 241 Member
    edited September 2017 #10
    Nivo v/s Votrient

    Larry,

    I was given Nivo (in combination with Ipilumumab for the first three months) as part of a Stage 3 open label trial called Checckmate 214.  This compared Nivo/Ipi against Sunitinib, also an angiosupressor like Voltrient, for clear-cell mRCC.  The trial has been completed and was reported recently at European Society for Medical Oncology (ESMO) - Google that and Checkmate and read the presentation.

    I understand from the people running the trial at my local hospital that the Nivo worked better for more people than the Sunitinib, and the overall report confirms this especially for people with well-advanced disease, but of-course everyone is different. 

    The angio-inhibitors can limit tumour growth but cancer is smart and often mutates to eventually win the day.  The Nivo option enhances your own immune response to recognise and kill cancer cells, and for me that has apparently been succesful as no tumours now show on my scans. 

    I too suggest you discuss this potentially alternative treatment with your oncologist.

    Best of luck

  • larry54
    larry54 Member Posts: 14
    #11
    foxhd said:

    If you find time

    read back to when i joined this forum. I posted a pretty detailed history of being on opdivo/nivo.

    larry, nivo vs votrient are 2 different drug mechanisms. nivo uses the immune system. Votrient is a blood vessel growth inhibitor. There are indications for each. It's good to know about the treatments available so you can choose them with your doctor. This is important because one is a potential cure, and the other is just a tumor suppressor.

    Thanks

    This is not one of the treatments recommended  to me as far as I remember.  The Votrient seems to be working thus far, but the fatigue is severe at times (like today).  My next meeting with the doc is in October and will ask him.  I will look into this myself as well.  The only other treatment was Interluekin which is pretty severe with limited success.

  • Qt34167
    Qt34167 Member Posts: 41
    #12
    SE of Opdivo

    Just finished my third treatment.  SE are minimal compared to Sutent I was on.  I do have liver problems thoughand currently have a liver drain which is draining lots of bile.  This was a problem prior to Opdivo.  Thhey tell me it doesn't effect the liver bt the brochure says different.

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