Shannon39

1. Very sad to hear this news. I always enjoyed reading Mike’s posts. His sense of humor and caring for others was always embedded in each message. He’ll be missed but not forgotten. Sending love to his family and friends during this difficult time.

Mike,
Your sense of humor, knowledge and the care you show for all of us in the melanoma community is what we all need, love and appreciate. Sending lots of love and prayers your way as you continue your journey.

Hello,
Sorry to hear about all the side effects you are experiencing. I was on this drug too and had really bad headaches…probably better described as a migraine. Also fever, chills, joint pain and high liver enzymes. Each time I had to go off drug for my liver to get back to normal which sometimes took 3 weeks. After 5 months of constant breaks and my dose being lowered over and over again I was taken off and put on Opdivo instead and had almost no side effects. For me I ended up being off the drug more than I was on the drug. I guess I would ask your oncologist about lowering your dose and see how that goes. I know it’s tough, hang in there. I was stage 3 and currently NED since the summer. Sending positives vibes your way.

This did not happen to me but happened to others on Opdivo at my infusion clinic. They were all given benadryl about 15 minutes prior to infusion and this seemed to stop the pain from happening at the 5 minute mark. Maybe see if this is a possibility for you.

This has not happened to me but the nurses at the clinic I go to have seen this happen. It is usually the 2nd or 3rd infusion about 10 minutes in. Those patients now take benadryl prior to going and the infusion is completed over a longer period of time. I hear the pain is excruciating. I hope the benadryl helps next time.

Hi Mike,
So great to hear that you are ready to fight. Sounds like your doctor is ready too. You have lots of supporters in your corner cheering you on. Will be sending you lots of positive energy. You can do this!!!
Shannon

When I was taking these drugs I often got fevers. My fevers always coincided with my liver enzymes being elevated. I’m not sure how to explain his fevers if his blood work is coming back normal. Hope the doctors can figure out something quick for your dad.

I am on these drugs as well (started in Oct.) and experience the symptoms you have mentioned. When fever hits you are to go off the drugs and not go back on them until you have been fever free for 24 hrs, at least that’s what my oncologist has advised. Usually when this happens to me my oncologist sends me for bloodwork which shows my liver enzymes are high. She keeps me off the drugs until they return to normal (takes at least 2 weeks). My dose keeps getting reduced in hopes that the fevers will stop. Soon I won’t be taking much of either drug as it keeps getting reduced and fever keeps happening. I would suggest having some bloodwork done to see what’s going on.
Shannon