1. < Pancreatic Cancer

45 Y old husband got diagnosed with stage 4 pancreatic cancer

Posted by margaretpaluch @margaretpaluch, 1 day ago

My dear husband was recently diagnosed with Stage 4 Pancreatic cancer with spreads to liver and lungs. Healthy, strong fun to be around father of two girls and my whole world! Im so lost, scared and feel like Im falling. Falling in every direction I go. He’s starting hes chemo(doctors said hes not a candidate for a surgery because its already spread out). Starting next week. Neither me nor him have family here in US(first generation of immigrants).

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Turkey | @tomrennie | 19 hours ago

Where was he diagnosed? Do you know what chemo that he will be taking? It is a bit of a process to work through. Folks here will share their experiences to help you and your husband the best that they can.

REPLY
1 reply
Elena Kaptur | @ekaptur | 18 hours ago

Dear Margaret,
These are very familiar emotions and states of mind that come immediately after receiving the diagnosis. From my experience on this journey—it feels like the ground disappears beneath your feet. But it’s crucial not to let emotions interfere with taking immediate action. My husband was diagnosed with stage 4 PDAC in April 2024, at age 56.
Ideally, start treatment/consultations
or seek a second opinion at an NCI-designated Comprehensive Cancer Center. Even better, narrow your search further by focusing on the NPF Centers of Excellence, which specialize in pancreatic cancer. If a biopsy is possible, proceed with NGS testing to identify genetic mutations that could guide treatment decisions or open up options for targeted therapies and clinical trials.
Find "your" medical oncologist—someone you feel confident with when discussing the treatment plan, someone who will monitor the treatment process and who you can ask any questions to and receive not only professional opinions/recommendations but also feel personal attention and support during this challenging journey.
Read scientific publications, Mayo Clinic’s blog, the Pancreatic Cancer Action Network, etc. Try not to fixate on statistical projections—this disease is unpredictable, and every case is different. What matters now is your husband’s will, strength, and mindset to follow medical recommendations and not give up—for the sake of your family, no matter how hard the reality and treatment may be.
And your support and inner strength will be essential—always. As a caregiver, you’ll often feel that you’re not doing enough, doing something wrong, don’t know what to do, or are powerless to help—this becomes the new "normal." The world around your family has changed—and this happens to all of us: a new routine, rules, schedule, and physical condition. You’ll need to adapt, make changes to be able to care for your husband and also give attention to your daughters (children are very vulnerable at this time; it’s a traumatic experience, and both of you will need to find the strength and the words to support them).
Hang in there! Here are the links to the resources I mentioned:
https://www.cancer.gov/research/infrastructure/cancer-centers
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
https://pancan.org/facing-pancreatic-cancer/

REPLY
2 replies
Turkey | @tomrennie | 17 hours ago
In reply to @ekaptur "Dear Margaret, These are very familiar emotions and states of mind that come immediately after receiving..." + (show)
@ekaptur

Dear Margaret,
These are very familiar emotions and states of mind that come immediately after receiving the diagnosis. From my experience on this journey—it feels like the ground disappears beneath your feet. But it’s crucial not to let emotions interfere with taking immediate action. My husband was diagnosed with stage 4 PDAC in April 2024, at age 56.
Ideally, start treatment/consultations
or seek a second opinion at an NCI-designated Comprehensive Cancer Center. Even better, narrow your search further by focusing on the NPF Centers of Excellence, which specialize in pancreatic cancer. If a biopsy is possible, proceed with NGS testing to identify genetic mutations that could guide treatment decisions or open up options for targeted therapies and clinical trials.
Find "your" medical oncologist—someone you feel confident with when discussing the treatment plan, someone who will monitor the treatment process and who you can ask any questions to and receive not only professional opinions/recommendations but also feel personal attention and support during this challenging journey.
Read scientific publications, Mayo Clinic’s blog, the Pancreatic Cancer Action Network, etc. Try not to fixate on statistical projections—this disease is unpredictable, and every case is different. What matters now is your husband’s will, strength, and mindset to follow medical recommendations and not give up—for the sake of your family, no matter how hard the reality and treatment may be.
And your support and inner strength will be essential—always. As a caregiver, you’ll often feel that you’re not doing enough, doing something wrong, don’t know what to do, or are powerless to help—this becomes the new "normal." The world around your family has changed—and this happens to all of us: a new routine, rules, schedule, and physical condition. You’ll need to adapt, make changes to be able to care for your husband and also give attention to your daughters (children are very vulnerable at this time; it’s a traumatic experience, and both of you will need to find the strength and the words to support them).
Hang in there! Here are the links to the resources I mentioned:
https://www.cancer.gov/research/infrastructure/cancer-centers
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
https://pancan.org/facing-pancreatic-cancer/

Jump to this post

Wow, that is a lot to comprehend and absorb and I have had pancreatic cancer for almost 3 years. Let's find out where they are in the process and help them with what works best for them. We, and our cancers, are all different.

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margaretpaluch | @margaretpaluch | 12 hours ago
In reply to @tomrennie "Where was he diagnosed? Do you know what chemo that he will be taking? It is..." + (show)
@tomrennie

Where was he diagnosed? Do you know what chemo that he will be taking? It is a bit of a process to work through. Folks here will share their experiences to help you and your husband the best that they can.

Jump to this post

Combination of 4 different medication. Hospital infusion for couple hours, then home infusion(48H). Every two weeks, 4 rounds total

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Turkey | @tomrennie | 8 hours ago

@margaretpaluch So he doesn't start treatment until next week? Do you happen to know what type of pancreatic cancer he has? There are several different types with adenocarcinoma being the most common. Each type may require different types of tests and treatment. Also, do you know what the 4 medications are that are in the infusion? Finally, is he being treated at a healthcare system that has a care team that specializes in treating pancreatic cancer? Which healthcare system? Maybe someone on here is being treated there. Sorry for all of the questions, but it will help us folks share our treatment and experiences that are similar to your husband's. We don't really want to overload you with stuff that doesn't apply to him. Information overload, and not knowing what really matters and doesn't, is the hardest part initially. Most of us know how helpless that feels and it is horrible. Just take a deep breath and let us help you. OK?

REPLY
1 reply
margaretpaluch | @margaretpaluch | 5 hours ago
In reply to @tomrennie "@margaretpaluch So he doesn't start treatment until next week? Do you happen to know what type..." + (show)
@tomrennie

@margaretpaluch So he doesn't start treatment until next week? Do you happen to know what type of pancreatic cancer he has? There are several different types with adenocarcinoma being the most common. Each type may require different types of tests and treatment. Also, do you know what the 4 medications are that are in the infusion? Finally, is he being treated at a healthcare system that has a care team that specializes in treating pancreatic cancer? Which healthcare system? Maybe someone on here is being treated there. Sorry for all of the questions, but it will help us folks share our treatment and experiences that are similar to your husband's. We don't really want to overload you with stuff that doesn't apply to him. Information overload, and not knowing what really matters and doesn't, is the hardest part initially. Most of us know how helpless that feels and it is horrible. Just take a deep breath and let us help you. OK?

Jump to this post

Hes starting chemo next week. - Plan to start NALIRIFOX q. 28-day cycle until disease progression or unacceptable toxicity, if
cannot obtain this regiment they plan is for FOLFIRINOX
He was very high risk of bleeding out so they took a biopsy of his lungs to confirm the diagnosis.
It is Pancreatic adenocarcinoma : ICD10-CM C25.9, Discharge DX

REPLY
margaretpaluch | @margaretpaluch | 5 hours ago
In reply to @ekaptur "Dear Margaret, These are very familiar emotions and states of mind that come immediately after receiving..." + (show)
@ekaptur

Dear Margaret,
These are very familiar emotions and states of mind that come immediately after receiving the diagnosis. From my experience on this journey—it feels like the ground disappears beneath your feet. But it’s crucial not to let emotions interfere with taking immediate action. My husband was diagnosed with stage 4 PDAC in April 2024, at age 56.
Ideally, start treatment/consultations
or seek a second opinion at an NCI-designated Comprehensive Cancer Center. Even better, narrow your search further by focusing on the NPF Centers of Excellence, which specialize in pancreatic cancer. If a biopsy is possible, proceed with NGS testing to identify genetic mutations that could guide treatment decisions or open up options for targeted therapies and clinical trials.
Find "your" medical oncologist—someone you feel confident with when discussing the treatment plan, someone who will monitor the treatment process and who you can ask any questions to and receive not only professional opinions/recommendations but also feel personal attention and support during this challenging journey.
Read scientific publications, Mayo Clinic’s blog, the Pancreatic Cancer Action Network, etc. Try not to fixate on statistical projections—this disease is unpredictable, and every case is different. What matters now is your husband’s will, strength, and mindset to follow medical recommendations and not give up—for the sake of your family, no matter how hard the reality and treatment may be.
And your support and inner strength will be essential—always. As a caregiver, you’ll often feel that you’re not doing enough, doing something wrong, don’t know what to do, or are powerless to help—this becomes the new "normal." The world around your family has changed—and this happens to all of us: a new routine, rules, schedule, and physical condition. You’ll need to adapt, make changes to be able to care for your husband and also give attention to your daughters (children are very vulnerable at this time; it’s a traumatic experience, and both of you will need to find the strength and the words to support them).
Hang in there! Here are the links to the resources I mentioned:
https://www.cancer.gov/research/infrastructure/cancer-centers
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
https://pancan.org/facing-pancreatic-cancer/

Jump to this post

Thank you so much for your kind words. Please know this means a lot!
This was very informative and just show me how little I know so far. Thank you for the resources, I will study them tomorrow

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