The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Nivolumab / Ipilimumab (Opdivo/Yervoy) concerned side effects

Forums General Melanoma Community Nivolumab / Ipilimumab (Opdivo/Yervoy) concerned side effects

  • Post

      My mum, aged 78, vaginal melanoma found Jan 2017. Surgery and radiation done april 2017. She is not NED though as surgery cannot have clear margin. 

      Found liver metastasis Nov 2017.  Fell with Pembro (Keytruda), 6 infusions. MRI shows progression at liver and bone. Seems Ketruday can't stop the beast. 

      Will start Nivo/Ipi next 2 weeks, every 2 weeks.  The doctor said will add Ipi every 6 weeks.  Any side effects I should concern for my mum.  She is very sensitive to any effects, even while having Keytruda.  Thank you you all. Also cheer you all up here.  Love we have this community.


    Viewing 1 reply thread
    • Replies

          Nivo (Opdivo) and Pembro (Keytruda) are pretty much equal in side effects and response rates. When ipi (Yervoy) is added the response rates increase, but so do the risk of side effects.  The particular side effects to all three drugs, or even the ipi/nivo combo, are all the same sort of things you are probably already aware of:  fatigue, rashes, joint pain, colitis, wheeze, pneumonitis, endocrine issues, etc.  It's just that ipi has a greater incidence of causing these problems.  Be watchful and help your mom's docs be aware of any effects that make you worried.  I will keep my fingers crossed that the combo will give her the response she needs and that she handles the therapy as well as possible!!  celeste


            Very sorry to hear about your mother. 

            Did she experience any side effects while on Keytruda?

            I'm going to assume she'll likely have similar symptoms on a combo of drugs with the possibility of things being amplified this time around given the increased dosage (via the combo of drugs).

            Most should be treatable/manageable but it's really impossible to predict. If she had things like stomach issues or fatigue in the past you might be able to get ahead of them by adjusting her diet/sleep schedule to (partially) compensate.

            In terms of rare but serious side effects, there are some potential cardiac issues that <1% of patients have experienced, myself included. 

            You'll want to keep an eye on her CK levels. If these start to rise, they can have them test her CK-MB and Troponin levels, which measures cardiac inflammation more specifically. Again, these are super rare so probably unlikely to happen but also not the first thing they look at because of the rarity.

            Best of luck to you both! 🙂

        Viewing 1 reply thread
        • You must be logged in to reply to this topic.
        About the MRF Patient Forum

        The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

        The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

        Popular Topics