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.

Day 4 of ipi/novo – minimal side effects. Does that mean anything?

Forums General Melanoma Community Day 4 of ipi/novo – minimal side effects. Does that mean anything?

  • Post
    Christinad
    Participant
    I had my first ipi/nivo four days ago Monday. Besides slight fatigue I feel fine. I guess I should be happy about that but I also worry it’s not working since I don’t feel anything. Is it too soon to tell? I know no symptoms vs symptoms may not mean anything.  The cancer related symptoms I had prior to starting ipi/nivo have not improved either.  I’m going to be patient and hope for some kind of change soon. I think I’m letting my thoughts get the best of me. I was hoping I’d notice some kind of difference as sign of improvement. The next infusion may be completely different. Who knows.

    Loading spinner
Viewing 2 reply threads
  • Replies
      ed williams
      Participant
      There is a reason that scans were usually performed around week 12 in the early trials, because it takes time for immunotherapy to work. also responses are broken down into categories like CR(complete responders), PR ( partial responders) category that I was placed in based on the amount of tumor shrinkage on ct scans. I stayed that way for years because tumor can shrink and tumor can still be visible on ct scans and the only way to know if what is left is dead tissue or active cancer is a PET-ct or biopsy. side effects are another mixed bag of tricks with data available on when the average patient will develop an Immune related adverse event (IRAE) but these are just averages. Some will hit patients early while some patients will develop them late. Read up on what can happen and make sure to have contact information for your medical team. The grade of side effects range from grade 1 mild up to grade 4 which will in many cases require stopping treatment and in some cases permanently. Read up on checkmate 067 survival data and side effects, each year Bristol Myer Squibb releases survival data and have done so, for the last 6.5 years. https://news.bms.com/news/corporate-financial/2021/Six-and-a-Half-Year-Outcomes-for-Opdivo-nivolumab-in-Combination-with-Yervoy-ipilimumab-Continue-to-Demonstrate-Durable-Long-Term-Survival-Benefits-in-Patients-with-Advanced-Melanoma/default.aspx. https://ascopubs.org/doi/abs/10.1200/JCO.2021.39.15_suppl.9506

      Loading spinner
      Christinad
      Participant
      Hi Ed,

      When did you finish your treatment? Have you been progression free with partial response?

      Loading spinner
        ed williams
        Participant
        My adventure with checkmate 067 starts in Jan of 2014 and ran for 5 years and 9 months until grade 3 colitis put a stop to treatments. To understand a little about the trial which was blinding for over 4 years, which meant I didn’t know what I was getting or had gotten in the way of treatment. I kind of knew that nivo was going into my arm every two weeks by how I felt afterwards, but it wasn’t until the trial was unblinded that I found out that I had been in the nivo monotherapy arm of the trial. as far as partial responder, that was based on a whole bunch of ct scans, never a PET-ct because it was not funded in the trial and I had to ask special permission to get one in Canada . My oncologist was able to get approval for a PET-ct and it showed that the tumor that kept showing up in my lung had no SUV uptake, which means the tumor was probably just scar tissue showing up. So 8 years later from finding out that I was stage 4, I and now considered NEAD (no evidence of active disease. I also had a little brain SRS treatment in Oct. of 2013 to zap 3 small little tumors in my brain which were discovered doing clinical trial protocols before starting. It was pretty sporty back in the summer of 2013!

        Loading spinner
        Christinad
        Participant
        Wow, that’s amazing. Congratulations! I’m surprised the trial medication lasted so long.

        Loading spinner
        ed williams
        Participant
        The trial was designed that you were allowed to stay on treatment with nivo until progression or side effects IRAE’s made you stop. You have to remember this was the trial that led to the combination and nivo approvals. we didn’t know much about the drugs and we sure didn’t know what would happened if you stopped as a partial responder. It would have probably been easier to stop if they would have done PET-ct once a year, so you could know if tumors were active or just dead tissue. Clinical trials are interesting and they take lots of blood samples and do lots of scans, so you feel closely watched.

        Loading spinner
        Christinad
        Participant
        Thank you for paving the way for the rest of us.

        Loading spinner
      Ireland1
      Participant
      It is so completely variable – hopefully you will be one of the lucky ones and not struggle with toxicities.  You do not need to have side effects to get a response.   The time frames on onset of side effects are so variable that I think the only strategy is a day at a time – savour the good days – and report side effects if they occur.  There are lots of graphs showing usual onset of symptoms but it really can happen within days of starting treatment – to many months after stopping it.  Diarrhoea in particular is one to watch and report!  I think the figures suggest half of those on the combination develope grade 3+ side effects – which means the other half have relatively mild manageable side effects – let’s hope you’re in that half.  And report anything that develops and it will be dealt with quickly.

      Loading spinner
        Christinad
        Participant
        Thank you for your response. This is helpful.

        Loading spinner
Viewing 2 reply threads
  • 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.