Hello all! I have read everyone’s wonderful messages - it’s been hard to get back. Ryan is okay. He started ipilimumab on November 23rd, 2021. Onco said we will not see fast results like some other drugs like Keytruda and Taf/Mek. A little nerve racking because of course time isn’t on our side. He has a high tumor burden. I would attach some pictures of his arm but it may be too much for some. He is well managed on pain medicine regimen. We are trying to take one day at a time. But also having the hard talks. Our bills, cars, house.. last wishes. All while also trying to plan a quick escape to the Florida gulf for our honeymoon. Oh and Christmas, lots of stuff going on! We have faith.. but also realistic. We are trudging through and I’m so proud of him. I started therapy about a month ago and has been extremely helpful to unload. Caregiver burnout is 100% real. Too real. I have also found MANY grief support groups in my area. I just haven’t been to one yet.. need to go ASAP. All of this was very unorganized I apologize lol! As far as any treatment potentially after this if we feel like we have hit a wall - will likely be ONC-392. Still between phase 1 and 2. Always on the look out for something. How is everyone else doing in their journey?
Love from MD,
Kelly and Ryan
