Husband late June update

Hey everyone, I hope you are doing well.

I (38F) wanted to update you all on my husband (42M). You all have helped me so much over the past eight months or so, and I am eternally grateful.

I did share a post a few weeks ago. After 14 rounds or so of Folfirinox with stage IV PC (liver mets), unfortunately it became ineffective. It may have been a combination of the overall toxicity combined with the cancer resistance. He had to miss or postpone cycles a few times. He had his last Folfirinox infusion on May 26. I was pretty bummed about it, just because we knew what we were in store for with it.

I did not worry too much, because we were already seeing a clinical trial doctor. Within a few days, he had gotten my husband a spot in the trial for PT0253 (KRAS G12D degrader). It was really exciting because they were only trialing it in 115 people and we got a spot! He said it wasn't curative, but in my head, I just thought "but what if it is?". I did feel very hopeful to get started. I was also kind of thinking and hoping that I could be soon adding to the "good news!" posts on this page, which have meant so much to me.

He had a CT scan in early June that did not show much progression, despite the Folfirinox not being effective. I was happy. It did show that there was dilation on the biliary duct. We discussed this with the doctor and he said he would monitor it. Last week, his bilirubin doubled from the week prior, which was normal at 1.1. The clinical trial doctor quickly arranged for a stent to be placed, and he had that done this past Thursday.

Today, Monday, we went in to see the trial doctor, and unfortunately, the bilirubin has worsened, despite the stent. He said that the GI doc had said there was a lot of disease in the liver so it was difficult to place the stent effectively, or something to that effect. It is there, but there is too much disease to allow the bilirubin to flow.

Unfortunately, we are going to have to pivot to Gem / Abraxane until the labs improve. We also lost the trial spot. I am very disappointed. I know some people have a lot of success with it. But I am worried because I feel like doors are closing. Lately, my husband pretty much just lays in bed all day because of his pain and I am so alone.

Also, this next part is a little weird and might just be a 'me' thing. We started seeing the clinical trial doctor in November, thanks to a referral from somebody here on Reddit! When my world was crashing down, this doctor gave us hope. There was a glimmer of light in the tunnel. The doctor told us a few weeks ago that he was retiring. I was very sad about it, but at the time, I figured he was getting us started on something and it might still be okay. I feel like today was our last visit with him and I hate that everything is just kind of over. There is nothing he can do until the labs improve, and he will be retired (deservedly! he is a true angel) by then.

I really don't know what to do right now, except wait until he can start the Gem / Abraxane. It is becoming impossible to endure these endless disappointments and setbacks, along with caring for him, my kids, and continuing to work. Anyway, if anyone has been in a similar situation or has any advice, please consider sharing with me. Everything feels very raw right now.

Thank you,

Kristine