Nivolumab (Obdivo) on going side effects

This topic has 15 replies, 8 voices, and was last updated 4 years, 7 months ago by lkb.

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- September 3, 2019 at 4:00 pm
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BKPmax
Participant
Stage 4 Melanoma to current remission.
Total Infusions: 1 of Nivolumab & Yervo, then 14 Nivolumab alone.

It’s been 4 month after being taken off Nivolumab (Opdivo) and I still get rashes, numbness, etc. It feels like Opdivo is still racing around my system. Some symptoms are even more strong than before!
(Numb / weak hands). What’s the knowledge base of side effects post Nivolumab treatment?
Thanks!
Blake

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- - September 3, 2019 at 4:20 pm
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  BKPmax
  Participant
  Dang….Wish there was a way to edit my posts! (SP errors!)
- - September 3, 2019 at 4:28 pm
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  mandyjill
  Participant
  I know it’s different for everybody, but I experienced significant side effects for about 10 months after completing the treatment.
  - September 4, 2019 at 12:59 am
    
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    BKPmax
    Participant
    
    Thank you! you give me hope !
- - September 3, 2019 at 5:23 pm
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  Hukill
  Participant
  I had 5 combos, 52 nivo and has been 13 months since my last. I still have all the side effects I had while on treatment. The only one that may have change is the fatigue and it has gotten worse, totally controls my life.
  - September 4, 2019 at 12:56 am
    
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    BKPmax
    Participant
    
    Gosh, no fun. Sorry for your difficult fatigue. Hoping you improve.
  - September 6, 2019 at 2:33 am
    
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    lkb
    Participant
    
    Hukill, please forgive me if you thought of this maybe 11 centuries ago, but have you tested for seemingly unrelated levels? I recently learned I’m iron-deficient, which might or might not explain my RLS/fatigue/cold extremities and might or might not be treatment related. (Only 3% of people become anemic while on Pembro.) Currently waiting for iron infusions, which will give more info. Wishing you the best..
- - September 3, 2019 at 7:46 pm
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  JudiAU
  Participant
  Hello, I’m stage 4 and starting “the combo” Friday. Can you give me an idea of intense this numbness? Is it constant? Is it intermittent w/o warning? Do you feel safe to drive or use a kitchen knife?
  
  I feel like I’m walking into the jaws of a lion because I am symptom free but also recovering from unrelated brain tumor/stroke.
  - September 4, 2019 at 12:52 am
    
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    BKPmax
    Participant
    
    My numbness is fairly constant and not very bad. I can function 100% with it. Hoping the best for your treatment.
- - September 3, 2019 at 7:51 pm
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  Cindy Lou
  Participant
  I took 12 treatments of Opdivo, the last one in May of this year. Opdivo was discontinued due to severe side effects, only after I consulted a melanoma specialist at Mayo in Jacksonville who advised my local oncologist to do so. So, after 3 months, I still have a severe itchy rash, the fatigue is less, and I have not had a recurrence of diverticulitis/ colitis since June. Good luck to you, my fellow melanoma warrior!
  - September 4, 2019 at 1:01 am
    
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    BKPmax
    Participant
    
    My best to you Cindy Lou!
- - September 3, 2019 at 8:41 pm
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  GeoTony
  Participant
  Hi Guys,
  I managed 3 out of 4 double dose’s (Ipi/Nivo) due to rash/breathing issues, also the fatigue was bad, but I then then followed up with the full 52 nivo dose’s without any issues, well no serious issues, eyelashes/eyebrows/beard went white. I achieved stable, currently on targeted CDK4/6 trial, still stable but can’t shake the beast totally.
  So it’s really different for everybody.
  Tony
  - September 4, 2019 at 1:03 am
    
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    BKPmax
    Participant
    
    Thanks Tony,
    Hope you shake that beast!
- - September 3, 2019 at 8:42 pm
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  MelanomaMike
  Participant
  Your right on schedule brother Blake, pro’s & con’s of Immunal, Chemo and all other BioChemo oncology drugs, iv been off (cancelled rather) from my last med Opdivo (started with the combo of Yervoy) after Opdivo bag #20, i was stopped due to disease progression, but, what im gettin at, my Pituitary is still Kentucky Fried from the Yervoy, ill be treated with Hydro’s for the duration of my life, i STILL dont produce Cortisol on my own! Still!.. pros & cons brother, pros & cons….
  - September 4, 2019 at 12:53 am
    
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    BKPmax
    Participant
    
    Thank you!
  - September 4, 2019 at 12:53 am
    
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    BKPmax
    Participant
    
    Thank you!