My husband (3c, 43yrs) has been on the ipi vs nivo trial for a little over 3 months. All seemed to be going well and he completed the 4 possible ipi doses last month. He has been only on the possible novo for the past month.
He was doing well – only suffering constipation issues, hemmeroids and fatigue until the last 3 weeks – his mood has changed drastically and recently his arm has begun to swell and turn purpleish (from shoulder to finger tips). We ended up in the ER yesterday because we were on a trip and the on-call doctor wanted him to be evaluated for blood clot possibility (because of the swelling, we were afraid to fly 3 hours home. No blood clots were found and no one can tell us why this swelling is occurring. It comes and goes randomly but his arm never fully goes back to "normal". This is his "good" arm – the other arm is the site of the lymph node removal. The side that is swelling is, however the side that has the port.
He is not dealing with this very well. I believe the drugs are impacting his ability to handle things appropriately so I am here trying to figure out if anyone has heard of this arm swelling as a side effect? If so, is it temporary or permanent?
I am grateful he is getting treatment, but it seems the docs are sometimes as clueless about the side effects as we are. They just don't seem to get the amount of fear and disruption this can have on daily life or a family system.
The weary wife of a warrior…..
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