u/Great_Fishing4478

My husband (42M, Stage IV) is currently in the ICU. I (38F) am not doing well. Today was my kids (5 and 7) first day back at school and I am alone, at work, but alone. The doctors have not given me clear reassurances, so I am hoping to hear from anyone who has navigated a similar setbacks and come through it.

His CA 19-9 peaked at 91,500 on July 8 after starting Gem / Abraxane on July 1. I know that number is huge but he is a 'high shedder' and his CA19-9 changes are dramatic. In just this past week, his CA 19-9 dropped another 52% down to 19,800. His tumor markers have plummeted since starting Gem / Abraxane. The chemo is actively fighting the cancer.

Unfortunately, he is dealing with a severe acute setback from septic shock, and the doctors are still running tests to identify the exact source of the underlying infection (possibly his biliary stent):

• Whatever triggered the infection, his body's inflammatory response has spiked his bilirubin, causing yellowing in his eyes (jaundice) and putting massive pressure on his liver and kidneys. He may have more jaundice than that, but he is not white and it is harder to see.
• He is in constant, unmanaged tumor and abdominal pain. He wants to fight, and the pain is the only thing that makes him question that sometimes.
• His hemoglobin dropped to 6.7 (he received 2 units of blood). He is on IV albumin and fluids for severe fluid retention / ascites and kidney strain, plus Granix for low WBCs and broad-spectrum IV antibiotics.

This week feels like rock bottom and I hope it is. I know the chemo is shrinking the cancer based on his CA 19-9 trajectory since starting Gem / Abraxane, but this infection and liver / kidney shock have really rattled my hope. Just last week, he was eating well and doing some gentle exercise on the Peloton.

Has anyone's loved one survived severe septic shock and high bilirubin while on Gem / Abraxane (or any chemo / treatment) and recovered enough to get back on their feet? I just need to know if recovery from this depth in the ICU is possible.

Thank you,
Kristine

Hello, I am hoping you all can help me a little. I (38F) have been with my husband (42M) for 12 years, married for 7.5. We have a five year old and a seven year old.

In October, he was diagnosed with stage IV pancreatic cancer. He has been doing chemo pretty regularly since then. I know the odds of beating this are not good, although not impossible either.

I am really struggling with life in general these days. I am essentially a single mom to my kids. I am worried they are starting to act out due to my husband's condition and their ages (meaning it is somewhat normal perhaps). I really don't feel joy or excitement or happiness anymore and if I do, it is so brief. I feel like my house is a den of sickness and I hate being here.

Our marriage was strained before this happened, at least from my perspective. My husband has severe ADHD. I don't doubt that he loves me, but it makes it difficult for me to love him when he doesn't seem to want to make any effort. And now he can't, even if he wanted to. Of the 12 years we've been together, he forgot my birthday probably half of those years.

When he became sick last year, I had been telling him for months to see a doctor. He would stay in bed all the time and not help me with the kids, I don't know why he felt like that was an okay choice to make (not knowing at the time that he had cancer). He ended up seeing a doctor once the pain and other symptoms were entirely out of control. I do wonder if he could have been diagnosed at an earlier stage if he had listened to me.

My own dad died when I was 16, so I know what it's like to lose a parent. I don't want my kids to experience that, especially at their young ages. But I really hate being a caregiver. I have to take care of my kids, my husband, and work full time. This feels like a sentence rather than a life.

I am not really sure what I am looking for, but if there is any way to find some hope or reassurance in this situation, I would be incredibly grateful.

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

Hey everyone, I was hoping to have more good news after my last update on here. Earlier this spring, my husband's (42M) CA19-9 was down about 96% and his CT scan showed more than 50% reduction in the area of the primary tumor.

Unfortunately, due to sickness and blood counts, he had a 26 day stretch where he was not able to receive chemo. In that time, his CA19-9 began to creep back up. He had another one drawn this week and it looks like it is rising again, despite reinitiating chemo this month. I know the CA19-9 isn't everything, but the trends seem to be telling us that we have hit the end of this road.

Obviously the chemo is brutal, but I (38F) did take comfort in knowing that it was working. I (as a caregiver) got used to it and was able to figure out how to help my husband manage his symptoms from it.

I am really scared now because it looks like we may need to pivot. We have been following with a clinical trial doctor for several months, and he will likely join a trial pretty quickly (likely ASP-3082). Even still, I was not prepared for the emotional setback I am feeling right now. I guess I thought we would be able to get more benefit from the Folfirinox before having to change things. I didn't think that when it stopped working, all that progress would deteriorate so quickly.

Anyway, if anyone else has experienced this, please consider sharing your experience with me. I am very upset right now and would be extremely grateful to hear from anybody who has navigated similar roadblocks before.

Thank you