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Length of Sid effects?
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Length of Sid effects?

› Forums › General Melanoma Community › Length of Sid effects?

  • Post
    • April 17, 2017 at 11:01 am
    DocPain
    Participant

      I know that everyone responds differently to opdivo/yervoy, but how long did the side effects last for you? I would think less than three weeks given the first nfusion cycle, but that's a bit unnerving to think 12+ weeks of constant side effects for four rounds. Did the side effects abate any when you went single agent?

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        • April 17, 2017 at 12:01 pm
        daughter1
        Participant

          I am curious To read the answers because my mother is halfway through treatments.  First treatment little no side effects.  After second, she has had a fever every single day and feels horrible 

          • April 17, 2017 at 12:45 pm
          ed williams
          Participant

            Hi DocPain, I have two excellent video's for you with leading oncologist that have treated thousands of Melanoma patients over the years. The first video is focused on the pd-1 drugs and the toxicities and the second video focus is on the combination of Ipi/Nivo. I hope they help!!! From a personal point of view, I have been part of checkmate 067 trial that is double blinded and like the other 950 members of this club we don't know for sure what drug/drugs we recieved. I am pretty sure that my arm was Nivo monotherapy based on how well it worked and how quickly I responded. (educated guess) That being said, I have had really bad fatigue from almost day one and it has lasted now going on 39months. It has been a small price to pay for still being around and other wise healthy. Best Wishes!!!Ed  https://www.youtube.com/watch?v=xxAlW8g8Tu4   https://www.youtube.com/watch?v=VCOAk7i9kmU

              • April 17, 2017 at 1:32 pm
              DocPain
              Participant

                Thank you, Ed. A bit technical, but at this point the lingo is familiar.

                • April 17, 2017 at 3:22 pm
                ed williams
                Participant

                  One of the main points that I have taken from these videos and others is that it is different for every one and the lenght of time of serious side effects is usually shorter if the patients reports them to Oncologist ASAP!!! The endocrine side effects can be permanent but easily managed with meds. Good communications with Oncologist and nursing staff is extremely important. Best Wishes!!!!Ed

                • April 17, 2017 at 5:07 pm
                jennunicorn
                Participant

                  It depends on the type of side effect and obviously the age/overall health of the patient. For myself, the worst side effect I have dealt with was a 3 week fever, that was miserable. But, fatigue is always around, it's the worst the couple of days after an infusion, but it never fully goes away. I'm a young patient and I think that helps in dealing with the fatigue, since if I wasn't on these drugs my age would not play a role in being fatigued the way it would for an older patient. Joint pain is always around, some days are better than others, been taking supplements and anti inflammatories for it which has helped me not be in pain/discomfort as much as before.. but it's not totally gone, and I don't know if it ever will be. I had eczema previous to this, but because of that being linked to the immune system, it gets inflammed constantly.. I am always battling with not scratching the skin off my hands. I also developed gastro esophageal reflux disease a little over a year ago when I was on Ipi alone.. I have to take a daily pill for it, if I don't take it then it comes back with fury.. so I may have that forever. Have not dealt with the more serious side effects, but those can last longer and some can be permanent.

                  I have been on Nivo alone since Feb.. have not dealth with fevers again which I blame on Ipi.. but still deal with the side effects I've dealt with from the beginning. Nothing new, which is good. 

                    • April 17, 2017 at 7:00 pm
                    daughter1
                    Participant

                      We just left the hospital and my mom is upset that she could not receive her third treatment   she has been having fevers for the past few weeks and her levels are not where he wants them to be.  He is going to put her on steriods and give her a little break from it.  The good news is that doctor sees shrinkage and when she receives her next treatment, he is going to remove the yervoy.    this is good, right?   

                      • April 17, 2017 at 7:12 pm
                      jennunicorn
                      Participant

                        Yes that is good! I know how miserable the fevers are, had to postpone my first opdivo only infusion because of them. Never took steroids, was able to get through it without them. But, my recent scans show the combo definitely worked, so it's a good sign that her immune system is amped up and doing it's job.

                      • April 17, 2017 at 8:59 pm
                      Mat
                      Participant

                        The side effects do not necessarily abate when you move to Opdivo alone–though they main change.  The most prevalent long-term side effects (per Sloan) are: fatigue, joint inflammation and sinusitis.  However, most side effects can be managed with prednisone.

                          • April 17, 2017 at 9:35 pm
                          DocPain
                          Participant

                            I should have qualified my original question with mild/moderate/severe. Watching the videos one thing that really stood out to me is that yervoy has a cumulative effect and that just because protocol states four doses not everyone may need four doses.

                            • April 18, 2017 at 2:38 am
                            MovingOn
                            Participant

                              I hope that I am not too early in my response because I've only been through 3 Ipi infusions (anything can still happen after #4 or the maintenance doses). But for some patients the side effects are minimal (looking at the statistics the majority of patients have minimal side effects from Ipi – but there is the potential of very bad side effects so all patients on Ipi should be vigilant).

                              For me, I got a rash on days 4-7 after the first infusion. After the second infusion the rash appeared on days 3-7 and included some blistery/pimply spots. I also got a dull headache on days 10-14 (low grade headache but definitely there). It was different from other headaches I've had in my life because it was consistent (didn't go away overnight). My pituitary function and thyroid were checked like usual and they were still within range. The third infusion only brought back the rash (I take Benadryl each night and I'm going to buy some anti-itch bath stuff tomorrow).

                              Note: I am not at all fatigued. This actually worries me that my pituitary could be impacted, but I even do my lab work a day early just to make sure the pituitary tests (24 hours for results) are complete and reviewed before each infusion.

                              So for me the Ipi infusions have been fine (so far). It actually makes me worry that I'm not responding to the immunotherapy. But since I've been resected I won't really know if I'm responding. But I am grateful for immunotherapy and so glad our cancer treatments are advancing quickly.

                            • April 18, 2017 at 12:53 pm
                            Hukill
                            Participant

                              I have been on the combo/nivo alone for 10 months. I have had 5 or more side effects at the same time since the 3rd combo. If your immune system is reacting you will probably have side effects. I never expected them to stop.  I do not understand why so many fear the side effects to the point of even refusing treatment out of fear of side effects. My thinking was always side effects or death, give me the side effects. Side effects are a small price to pay for living. List of side effects, rash since 2nd week, loss of appetite first 7 weeks, fatigue since 2nd week, fever for 6 weeks, no silava for 11 weeks and still gets thick for a week after treatment, vitligo, thyriod gland gone since 6th month, insomnia, and severe joint pain. The reward, started with 7 mets in my lungs, now down to 1 that is smaller than 2mm, near complete resolution. I was so happy the second week when the rash appeared.

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