Dad has sepsis, I'm terrified

Posted by jessieleigh @jessieleigh, Dec 4, 2022

Hi. My dad was recently diagnosed with stage IV pancreatic adenocarcinoma with metastasis to liver and peritoneum. He received his first dose of folfirinox almost two weeks ago. We found out Thursday that his white blood cell count had dropped dangerously low. The doctor gave him IV fluids for dehydration and a medication called zarxio to increase his WBC count. She scheduled him for paracentesis to drain out a collection of peritoneal fluid. All that was to lay the groundwork for two questions: does anyone have experience with zarxio? The doctor only gave him a single dose, and no more, but online the prescribing information says he is supposed to get a dose daily until the neutrophil count reaches 10,000/mm3. I'm wondering why he got no further doses after the first one? Is this normal? Should I try to get the hospital doctor to give another dose? I'm also looking for information on how to treat sepsis. I want specifics about antibiotic regimens but I can't find any on the internet. Lastly, he has a huge collection of fluid in his abdomen, but the hospitalist here did a sonogram in the ED and said that the fluid is to thick with cancer cells to remove via paracentesis. I don't understand how this is possible. There is alot of fluid inside him that I know just gathered there within the past two days because I pretty much watched his abdomen swell. I cannot believe it is somehow too thick to remove.
Can anyone help, please? I am more desperate than I have ever been in my life.
Thank you

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I am really sorry that you and your dad are going through this. I can only reply on the sepsis infection, and it may not be much help. My husband had sepsis last year at this time. He had 0 white blood cells, 0 platelets, and only a few red blood cells due to a cancer drug that was given to him in excess. Thus he got sepsis. (had blood infection, lung infection, c-diff (stomach and intestinal infection) He was given an IV drip of a broad spectrum antibiotic. This once a day through an IV. He was hospitalized for almost two months dealing with infection after infection. He made it through though, and is healthy today.
I feel for you. Guess I replied mainly to tell you that in dire situations, there is still hope. Don't give up. Be an advocate for your dad. Stay by his side, continue to ask questions, and seek answers.
You are in my thoughts and prayers.

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@jojs

I am really sorry that you and your dad are going through this. I can only reply on the sepsis infection, and it may not be much help. My husband had sepsis last year at this time. He had 0 white blood cells, 0 platelets, and only a few red blood cells due to a cancer drug that was given to him in excess. Thus he got sepsis. (had blood infection, lung infection, c-diff (stomach and intestinal infection) He was given an IV drip of a broad spectrum antibiotic. This once a day through an IV. He was hospitalized for almost two months dealing with infection after infection. He made it through though, and is healthy today.
I feel for you. Guess I replied mainly to tell you that in dire situations, there is still hope. Don't give up. Be an advocate for your dad. Stay by his side, continue to ask questions, and seek answers.
You are in my thoughts and prayers.

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Thank you for offering some hope, I really needed to see the things you wrote. I am glad that your husband is healthy today after all he's been through, and I wish you both continuing good health. Thanks for the good advice. I'm heading back to the hospital to do my job as his advocate today and have my question list ready.

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My husband is currently in the Mayo clinc hospital was treated with many antibiotics & drains but doesn't have cancer so I guess that may be the difference.Prayers ♥️🙏

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@jessieleigh

Thank you for offering some hope, I really needed to see the things you wrote. I am glad that your husband is healthy today after all he's been through, and I wish you both continuing good health. Thanks for the good advice. I'm heading back to the hospital to do my job as his advocate today and have my question list ready.

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@jessieleigh, just checking in. How is your dad doing? Did they get the sepsis and swelling under control?

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@colleenyoung

@jessieleigh, just checking in. How is your dad doing? Did they get the sepsis and swelling under control?

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Hello, thank you for asking. The sepsis is under control and he is now off of antibiotics, thank goodness. But his abdomen is still hugely distended. He is sleeping nearly 24 hours a day. He has not eaten in weeks. He is extremely weak and his speech is slurred. He says he can't swallow food because he will "throw up" if he tries, so he refuses everything except his meds and a few sips of clear fluids per day, like broth or soft drinks. The doctor offered him an ng tube for nutrition, so I am hoping he gets the tube and gets out of the hospital and back on chemo asap. I wish I could understand why his abdomen is so distended. He does have peritoneal carcinomatosis, but I want specifics- is what I see caused by gas or fluid? The doctor gives confusing answers. She says it's the tumor, but I know perfectly well that there is no enormous tumor filling up his abdomen. It could be ascites or gas or both. I think he has ileus, but the doctor said he doesn't have that (although I'm sure she said that he did earlier on). My plan is to obtain his imaging and try to see for myself what's going on. I am very sad and frustrated because he is suffering and I haven't been able to find a solution for him. I have a question on another subject: my dad is in his 70s but was not given any sort of gcsf until over a week after the chemo. Was this the normal standard of care? It seems like at his age he should have been offered Neulasta or something similar to be taken right after the chemo was done. I would appreciate any knowledge you have about this. I'm devastated and exhausted, but I am so glad that you asked about my dad, thank you.

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jessie,

This sounds very dire – I'm sorry.

The terms and cancer you described might relate to ascites – this is very simple to confirm with paracentesis.

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@mayoconnectuser1

jessie,

This sounds very dire – I'm sorry.

The terms and cancer you described might relate to ascites – this is very simple to confirm with paracentesis.

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Hi, thank you again for responding, I really really appreciate it. Doc says that they looked for a "pocket" of fluid to do the paracentesis but could not find one that was big enough to do it safely. I don't think they looked very hard. There is a lot of fluid there. The hospital doctor confirmed with me that my dad did not get any neulasta or anything else to boost his wbc count within the 24 hours after the chemo. It was given 7 days after. I had to ask the doctor multiple times about the timing of the dosage because she repeatedly failed to answer, saying "he did get it" when my questions were aimed specifically at the timing of the administration. In the end, I counted the days myself for her. Then she said "I don't think it contributed to his current situation. " I know that is not true. He got sepsis. This started a cascade that I truly believe would not be happening if not for that. Now she wants to meet with me at one this afternoon. I will see what she has to say for my dad's sake, but I need nothing further from her except the feeding tube. I'm sorry to burden you with my rant. I am terrified, desperate, and furious. Thank you for caring about my dad. Any knowledge you have to offer about any of this would be appreciated, and your kind words are appreciated as well, thank you.

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jessie,

I am not a doctor, but my sister is in the final stages of PDAC.

My sense from reading thousands of pages of studies and analysis, is that once PDAC has metastacized it is Stage IV. Further, this diagnosis, tends to indicate to some medical experts that believe palliative care is appropriate, but other forms of care may not be.

Please ask your father's doctor to be very clear with you, even blunt – write down everything they say, especially the terms used to describe their diagnosis.

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@jessieleigh

Hi, thank you again for responding, I really really appreciate it. Doc says that they looked for a "pocket" of fluid to do the paracentesis but could not find one that was big enough to do it safely. I don't think they looked very hard. There is a lot of fluid there. The hospital doctor confirmed with me that my dad did not get any neulasta or anything else to boost his wbc count within the 24 hours after the chemo. It was given 7 days after. I had to ask the doctor multiple times about the timing of the dosage because she repeatedly failed to answer, saying "he did get it" when my questions were aimed specifically at the timing of the administration. In the end, I counted the days myself for her. Then she said "I don't think it contributed to his current situation. " I know that is not true. He got sepsis. This started a cascade that I truly believe would not be happening if not for that. Now she wants to meet with me at one this afternoon. I will see what she has to say for my dad's sake, but I need nothing further from her except the feeding tube. I'm sorry to burden you with my rant. I am terrified, desperate, and furious. Thank you for caring about my dad. Any knowledge you have to offer about any of this would be appreciated, and your kind words are appreciated as well, thank you.

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You most likely thought of this already, but get his medical records. They should dictate what day and time meds were given. Also read radiologist report. It should say if he has fluid or gas in his abdomen. I did this for my husband. Your dad will need to sign a form, and you will need his (and your) drivers license to get the records.

Will be praying for a great outcome for your dad, and peace of mind for you. He is blessed to have you.

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@jessieleigh

Hi, thank you again for responding, I really really appreciate it. Doc says that they looked for a "pocket" of fluid to do the paracentesis but could not find one that was big enough to do it safely. I don't think they looked very hard. There is a lot of fluid there. The hospital doctor confirmed with me that my dad did not get any neulasta or anything else to boost his wbc count within the 24 hours after the chemo. It was given 7 days after. I had to ask the doctor multiple times about the timing of the dosage because she repeatedly failed to answer, saying "he did get it" when my questions were aimed specifically at the timing of the administration. In the end, I counted the days myself for her. Then she said "I don't think it contributed to his current situation. " I know that is not true. He got sepsis. This started a cascade that I truly believe would not be happening if not for that. Now she wants to meet with me at one this afternoon. I will see what she has to say for my dad's sake, but I need nothing further from her except the feeding tube. I'm sorry to burden you with my rant. I am terrified, desperate, and furious. Thank you for caring about my dad. Any knowledge you have to offer about any of this would be appreciated, and your kind words are appreciated as well, thank you.

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Thinking of you, @jessieleigh

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