Update from Elyse

Message from Elyse explaining her treatment schedule and help she might need in the next few weeks.

This is what we know so far:

I’ve been randomized to the experimental immunotherapy treatment, and my tumor profile is immune positive which indicates it’s highly likely to respond well to this treatment, but still unknown because it’s so new. The drug is called ivonescimab.

I will be on this drug for at least 3-6 weeks (on the trial, this is called Treatment Block A), with infusions every 3 weeks. I’ll have an MRI at week 3 to see how much the functional tumor volume (FTV) has shrunk. I’ll have another MRI before the 6 week mark to assess the same thing. If that MRI (or even the 3 week one) shows that the tumor has shrunk by at least 65%, I get to stay on this drug by itself for 12 weeks and then possibly go straight to surgery. If it has not shrunk enough by week 6, I will move to Treatment Block B, which is continuing with this drug every 3 weeks, but also adding in 2 more chemotherapy drugs every week. We’ll update again when/if we get to that point.

I had my first infusion on 6/18. It was a 6 hour day total from start to finish, but only 1 hour of it was the actual infusion. 

On treatment days, this is the schedule:
- Labs (~30 mins)
- Oncologist appointment (~30 mins-1 hour, but lots of waiting)
- Pre-medication (~30 minutes but overall takes about an hour or so while ordering medication which takes an hour to come in from the pharmacy)
- Infusion (for this drug only, it’s 1 hour)
- Observation (1 hour)

We’re waiting for my first MRI to be scheduled, but it will be sometime between 7/2-7/6, and my next treatment day will be Tuesday, 7/7. Daycare is closed 7/3-7/10 so my parents will fly up for that week and they’ll likely be with me and Francisco for treatment day and help that whole week. But people are welcome to stop by for visits then too if they’d like.

My third treatment day will be Tuesday, 7/28. My aunt will go with us that day.

Before the 7/28 appointment is when we’ll know if I’m staying on Block A with treatments every 3 weeks, or if I’m moving to Block B with treatments every week. So we’ll update then with what a schedule would look like for future treatments. But generally, Francisco will likely go with me for the beginning portion and then if my parents aren’t here/available to go with us, then it would be great if a friend could relieve Francisco and stay with me during the infusion portion (probably about 3-4 hours, depending on which Block I’m on). And then also get me home.

Aside from that, it would be great to have weekend visits from people to hang out with me for distraction, play/help with Leo, and possibly help with random chores around the house (ex: laundry, cleaning Leo’s bottle washer, cleaning Leo’s humidifier, tidying up the first floor of the house, etc.). 

Thank you so much for all your help!