Wednesday last week was a long day of his new treatment. He wore his cookie monster pants, I packed his favorite cookies and some of his favorite milk and together we got up and left our house about 6 AM. It was a long day and we didn't get back until about 7 PM. All things considered the infusion went about like we expected. There was a chance it could turn into an overnight stay, so we came prepared but it ended up not being needed.
After a whole bunch of "pre-meds" to help make things go smoother, they got the Daratumamab infusion started. They put the IV meds in a 1000 ML bag and started the infusion at rate of 50 ML per hour checking his vitals and increasing it each hour if he was doing OK. The first side effect he felt was a spike in his temp, nothing too crazy, and a cool rag worked to help him cool down. Shortly after they bumped it to 100 ML per hour he got a full body rash. It started in a few areas and quickly spread. They stopped the infusion and gave him some more IV Bendryl. Once the rash went away they started the treatment back up at 50 ML per hour. The Bendryl put him to sleep and he was able to get in a good nap. They increased it each hour by 50 ML. The monitored his vital signs on a regular basis and there were no more reactions for the rest. Once he was up to the max of 200 ML per hour things went much faster.
Our nurse Robin was awesome! She was his nurse the first day of collection and always makes us both feel welcome, she even remembers and calls me by my name. There are at least two infusion rooms that I'm aware of at the main Huntsman and we thought we were going to be in the main one however it was in the BMT infusion room. Doing the initial infusion's of Daratumamb is something apparently fairly new to the BMT infusion. Robin was a bit concerned and wondered why our infusion wasn't being done inpatient but everything went fairly smoothly and although we thought we might end up being transferred upstairs he was able to finish it in time to avoid being put in a room.
Once we got home Chris took his new chemo, Revlimid. It's a pill that he takes at home every day for 3 weeks, and then gets a week off to help his body recover. Having chemo around the house is a strange feeling. He's got to be very careful with it, it's not something I'm even supposed to touch. It also has a side effect of blood clots, so he also started a blood thinner. We thought they were going to have to be shots, but were relieved that they decided to do a pill instead that was much cheaper and easier to take. As well we now have another team watching over him, the thrombosis team. Until they figure out his dosing needs, they will be doing regular PT-INR tests every couple days to measure how thick/thin his blood is.
All of the new medications have come with a lot of fatigue. He's still pretty worn out and battling some of the effects from collection and it would have been nice to have the week off like planned, but it just wasn't in the cards. Unfortunately it also has really made him have insomnia. He has had hard time sleeping for while and is often up in the wee hours of the morning. Being exhausted and tired at the same time are two things that really don't go well together. Saturday I convinced him to go back to bed and he slept almost all day. He's felt a bit better since then, but has been again dealing with an itchy rash from the medication (a common side effect). We're both grateful that when he is awake he can often work to help keep his mind off things. There's no way he could work a typical 9-5 job, so we are glad he's able to work some here and there.
Today we are back up at Huntsman for another infusion. Our nurse this week is Amber, another one of our favorites. Instead of a 1000 ML bag, they've mixed the Daratumamab into a 500 ML bag. Starting again at 50 ML and working our way up, so far with no need to pause. He's been able to rest some this morning and the infusion room is oddly quiet. This morning as we walked in, Chris was resting in the lobby from walking in from the car. Dr Sborov happened to be walking by and stopped and came over to check and make sure he was OK. It was just something simple, but made me appreciate even more that we ended up with an amazing doctor at a time when we needed it the most. We're both so grateful and touched by his genuine concern.
No comments:
Post a Comment