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Side effects after stopping immunotherapy?
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Side effects after stopping immunotherapy?

› Forums › General Melanoma Community › Side effects after stopping immunotherapy?

  • Post
    • December 11, 2019 at 9:44 pm
    Coragirl
    Participant
      Hello all, I just have a quick question. My husband stopped his treatment with Opdivo back in March due to pneumonitis. His symptoms have been improving and he is seeing another doctor to help get his lungs feeling good again. On his last scans it showed he may be developing colitis, at scan time he didn’t have symptoms but he does now. Could this still be effects of immunotherapy?
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    • Replies
        • December 12, 2019 at 5:08 am
        Canadian melanoma wife
        Participant
          Lots of the side effects from immunotherapy are because the immune system is amped up and attacking more than just the cancer. My husband stopped treatment in July 2018 after only 8 infusions of the ipi/nivo combination and still struggles with fatigue, joint pain, headaches, rashes, intestinal issues ect. Its not a whole lot of fun but I think he prefers it to the alternative. I wish you and you husband luck and good health on your journey.
            • December 12, 2019 at 12:50 pm
            stevek1959x
            Participant
              The final month of my treatment (total 12 months) my creatitine level increased. It took about another two months before that returned to normal. Extensive vitiligo set in 2 – 3 months after treatment. If that wasn’t enough, type 2 diabetes set in 5 months after treatment (currently on insulin) which my onco believes is immunotherapy related since I’m not overweight and no history in my family. I had my glucose checked in August which was normal and bam, 30 days later it was at 500 (yep 500!). Oh yea, and the rash I had for a year. Yes, these are bumps along the way but it is better than the alternative. What is interesting is how fast these affects pop up. Some resolve others let you know you’ve had immunotherapy.
              • December 16, 2019 at 2:35 am
              Canadian melanoma wife
              Participant
                Sounds like you are having a rough go of it Steve. I hope your side effects settle down for you. Curious about your Vitiligo, ironically the least of your worries, and quite possibly a sign of good measure. They say those who get it tend to have a high rate of pfs. My husband has it as well. Started with his hair and eyelashes and then he has a small patch on his neck/cheek. It seemed to spread rapidly at first but hasn’t progressed at all in 6-8 months. Have you found yours has progressed steadily or was quick to spread and then petered out like my husbands has?
                • December 16, 2019 at 8:06 pm
                stevek1959x
                Participant
                  It spread slow at firsts (arms and back of hands). When it started on the neck, it went extremely fast. From the back of my hair line to the shoulders and around the front of the next is completely white. The last place it developed was the sides of my face (upper cheek bone). I started the UVB treatments within a week after it progressed to my face and that was the last progression I had (6 months ago).
                  Other then patchy looking skin, my main complaint is you need to wear sun screen faithfully. Five minutes of sun exposure get me burnt.
                • December 12, 2019 at 3:42 pm
                kannevans
                Participant
                  I received my last treatment in November. I had minimal side effects during treatment. End of November I started getting vertigo and broke out with this rash on my hands and face that won’t go away. My stomach is always hurting and I get frequent headaches. My muscles in my legs hurt for no reason and I’m always nauseous. But like everyone says, it’s better than the alternative. Hopefully as time goes on it will get better. Best of luck!
                  Kris
                    • December 12, 2019 at 6:42 pm
                    Coragirl
                    Participant
                      Thanks all for sharing your side effects, I am always worried it’s cancer. I wish you all the best and continued good health.
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