1. < Pancreatic Cancer

How can I help my husband face the possibility he may not survive?

Posted by sw54 @sw54, Jul 24, 2022

My husband was diagnosed with locally advanced/borderline resectable pancreatic cancer on April 11th. His oncologist recommended a chemo regimen aimed at shrinking the tumor so it can be removed with Whipple surgery; unfortunately, chemo treatments had to be postponed two months due to a number of complications related to the cancer. One of those complications is Cachexia (Wasting syndrome). He has lost over 20% of his normal body wait and has signs of muscle wasting, too. He has now had 3 chemo treatments and is not tolerating them well at all. He loses more weight and becomes weaker each time, and the oncologist hasn’t even started giving him the full dose of chemo drugs because he isn’t sure he can take it.
My intuition has been telling me all along that he is not going to survive this with any quality of life left, but haven’t been able to talk to him about it because until recently he has been convinced he can beat it and get to the 5-year mark. Lately, though, his suffering has caused him to realize he may not have much time left, but he still seems afraid to talk about it. If he mentions his mortality and I try to discuss it with him, he gets angry and shuts me down. I am afraid, too, and also filled grief for what I know is going to happen.
I realize he needs to process things in his own way and I want to provide the right kind of support at the right time. My hope is to help him make peace with death before it’s too late. Can someone help me with how to do that?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

woodlanddsm | @woodlanddsm | Aug 14, 2022
In reply to @thebobk "For what it's worth, I've written a book about my experiences and insights (so far). Part..." + (show)
@thebobk

For what it's worth, I've written a book about my experiences and insights (so far). Part explanation and part meditation, my hope is that the book may help the newly diagnosed patient and families get a perspective about what to expect and perhaps how to deal with the life and death issues. I expect to have both a Kindle and paperback version on Amazon by the end of this month. Best to you and your husband.

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I too would be very interested in your book if you could keep us posted by announcing when it is available!

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2 replies
thebobk | @thebobk | Aug 14, 2022
In reply to @woodlanddsm "I too would be very interested in your book if you could keep us posted by..." + (show)
@woodlanddsm

I too would be very interested in your book if you could keep us posted by announcing when it is available!

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Will do. I expect the Foreword shortly which is the last piece before finalizing the manuscript and making the Kindle and paperback available on Amazon. Thanks for your interest.

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sw54 | @sw54 | Aug 16, 2022
In reply to @naturegirl5 "@sw54 It's good for me to know that I've been helpful to you and your husband...." + (show)
@naturegirl5

@sw54 It's good for me to know that I've been helpful to you and your husband. I'd like to share some resources I came across when I was doing some reading today about how an existential psychotherapist faced her own death when she was diagnosed with pancreatic cancer. I intend to look into these also as I think about my own dying and death in a much deeper way than I did before my own cancer diagnosis.

You're Going to Die is a California Bay Area nonprofit that has in-person groups but may still be meeting virtually because of COVID.

http://www.yg2d.com/resources

Ernest Becker was a cultural anthropologist who wrote Denial of Death (1973).

https://ernestbecker.org/

Death Café
https://deathcafe.com/

Will you please post again when you have questions and when you've made contact with Integrative Medicine at Mayo Clinic?

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Thank you again and may your journey be blessed with peace and grace.

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sw54 | @sw54 | Aug 16, 2022
In reply to @naturegirl5 "@sw54. I've been thinking of you and your husband. How are you feeling? How is your..." + (show)
@naturegirl5

@sw54. I've been thinking of you and your husband. How are you feeling? How is your husband doing with his chemo treatments?

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Thank you for checking in with me.
After the third chemo treatment (not even the full regimen yet), Mel’s side effects caused him a lot of suffering and more weight loss. Consequently, he has not been willing to have another treatment for a month now. His treatments are supposed to be every other week. His oncologist was on vacation last week and the week before, and he insisted on waiting until he could talk to the doc about some alternative treatments.
A cat scan last Fri. showed significant shrinkage of the tumor, but also some suspicious lesions on his liver. Dr. K doesn’t think it is metastasis, since the tumor has shrunk, so the chemo was working. However, since my husband has waited a month without any chemo, he ordered an MRI for tomorrow to get another look. Another finding on the CT scan is that he has gastroparesis that probably started after the third treatment. That’s when he started having problems feeling over-full and bloated after only a few bites.
Dr. K wanted him to have his 4th treatment yesterday with a reduced dose of Oxilaplatin, but my husband refused. He wants the results from the MRI and treatment for the gastroparesis first.
I think he is very frightened and already sick and tired of feeling sick and tired. Another issue that is probably keeping him stuck right now is analysis paralysis. He has researched tons of different treatment methods and alternative therapies and is now so anxious about not choosing the “perfect” plan for him that he can’t seem to choose anything. He also has an aversion to seeing a counselor. I have been seeing someone once a week to help myself cope and get advice on how to help him.
He has at least started talking about quality of life and not just quantity and that he may not have as much time ahead of him as he hoped for before chemo started.

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Helen, Volunteer Mentor | @naturegirl5 | Aug 17, 2022
In reply to @sw54 "Thank you for checking in with me. After the third chemo treatment (not even the full..." + (show)
@sw54

Thank you for checking in with me.
After the third chemo treatment (not even the full regimen yet), Mel’s side effects caused him a lot of suffering and more weight loss. Consequently, he has not been willing to have another treatment for a month now. His treatments are supposed to be every other week. His oncologist was on vacation last week and the week before, and he insisted on waiting until he could talk to the doc about some alternative treatments.
A cat scan last Fri. showed significant shrinkage of the tumor, but also some suspicious lesions on his liver. Dr. K doesn’t think it is metastasis, since the tumor has shrunk, so the chemo was working. However, since my husband has waited a month without any chemo, he ordered an MRI for tomorrow to get another look. Another finding on the CT scan is that he has gastroparesis that probably started after the third treatment. That’s when he started having problems feeling over-full and bloated after only a few bites.
Dr. K wanted him to have his 4th treatment yesterday with a reduced dose of Oxilaplatin, but my husband refused. He wants the results from the MRI and treatment for the gastroparesis first.
I think he is very frightened and already sick and tired of feeling sick and tired. Another issue that is probably keeping him stuck right now is analysis paralysis. He has researched tons of different treatment methods and alternative therapies and is now so anxious about not choosing the “perfect” plan for him that he can’t seem to choose anything. He also has an aversion to seeing a counselor. I have been seeing someone once a week to help myself cope and get advice on how to help him.
He has at least started talking about quality of life and not just quantity and that he may not have as much time ahead of him as he hoped for before chemo started.

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@sw54 Thank you for this detailed update.

My heart is full of sadness for you and your husband. As you noted in your first post your husband is a scientist. He is used to analyzing data from every possible angle and questioning and second guessing results. Is this correct? I noted too that my husband is similar in that respect. When my husband has stalled decision making and becoming more and more anxious by looking for the "perfect" solution that isn't there I've said to him that by making no decision he has made a decision. But these have not been health care decisions as your husband must make. You know your husband must decide for himself what he wants to do and I know how hard it must be for you to sit on the sidelines. And provide support to him. It's good that you are seeing a counselor whose attention is fully on you, allows you the emotional space you need to deal with all of this, and can provide with you the coping skills you need. It is a frightening time for both of you. I can only wish that your husband could partner with Dr. K in a way that would result in a decision to go forward with the recommended treatment. Maybe at this writing that has happened?

How are you taking care of yourself? Do you like to go for walks? Sit outside and listen to the birds? What would be most soothing to you right now?

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beachdog | @beachdog | Aug 22, 2022
In reply to @sw54 "Thank you for checking in with me. After the third chemo treatment (not even the full..." + (show)
@sw54

Thank you for checking in with me.
After the third chemo treatment (not even the full regimen yet), Mel’s side effects caused him a lot of suffering and more weight loss. Consequently, he has not been willing to have another treatment for a month now. His treatments are supposed to be every other week. His oncologist was on vacation last week and the week before, and he insisted on waiting until he could talk to the doc about some alternative treatments.
A cat scan last Fri. showed significant shrinkage of the tumor, but also some suspicious lesions on his liver. Dr. K doesn’t think it is metastasis, since the tumor has shrunk, so the chemo was working. However, since my husband has waited a month without any chemo, he ordered an MRI for tomorrow to get another look. Another finding on the CT scan is that he has gastroparesis that probably started after the third treatment. That’s when he started having problems feeling over-full and bloated after only a few bites.
Dr. K wanted him to have his 4th treatment yesterday with a reduced dose of Oxilaplatin, but my husband refused. He wants the results from the MRI and treatment for the gastroparesis first.
I think he is very frightened and already sick and tired of feeling sick and tired. Another issue that is probably keeping him stuck right now is analysis paralysis. He has researched tons of different treatment methods and alternative therapies and is now so anxious about not choosing the “perfect” plan for him that he can’t seem to choose anything. He also has an aversion to seeing a counselor. I have been seeing someone once a week to help myself cope and get advice on how to help him.
He has at least started talking about quality of life and not just quantity and that he may not have as much time ahead of him as he hoped for before chemo started.

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I am a hyper analytical technologist and force fed myself numerous research papers, pharma white papers, FDA documentation, etc and came to the conclusion that other than the statistics, I wasn't capable of making a qualitative analysis in a field so far outside of my area of expertise. Ultimately, we have had to rely on the oncologist's recommendations with second opinions as needed. The bottom line is that none of the "approved" regimens are successful for all people. Every patient becomes a field study relevant to that patient.

It's not surprising that side effects of folfirinox are severe. So try it without oxalyplaten. There are mutations which platinum drugs are effective against and other times all the platinum provides are bad side effects but no greater tumor reduction than treatment without platinum. My wife had half of her presurgical treatments with platinum and half without. Stopping the platinum didn't reduce the effectiveness. Of course he'll still have to deal with the i-ran-to the-can effects.

Whatever he chooses (and he should choose SOMETHING), get the treatments, track the effects and ask questions. And if you think a change in regimen will be beneficial, push for it. Tell your husband that he's a trial of 1. Appeal to the scientist.

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1 reply
sw54 | @sw54 | Aug 22, 2022
In reply to @beachdog "I am a hyper analytical technologist and force fed myself numerous research papers, pharma white papers,..." + (show)
@beachdog

I am a hyper analytical technologist and force fed myself numerous research papers, pharma white papers, FDA documentation, etc and came to the conclusion that other than the statistics, I wasn't capable of making a qualitative analysis in a field so far outside of my area of expertise. Ultimately, we have had to rely on the oncologist's recommendations with second opinions as needed. The bottom line is that none of the "approved" regimens are successful for all people. Every patient becomes a field study relevant to that patient.

It's not surprising that side effects of folfirinox are severe. So try it without oxalyplaten. There are mutations which platinum drugs are effective against and other times all the platinum provides are bad side effects but no greater tumor reduction than treatment without platinum. My wife had half of her presurgical treatments with platinum and half without. Stopping the platinum didn't reduce the effectiveness. Of course he'll still have to deal with the i-ran-to the-can effects.

Whatever he chooses (and he should choose SOMETHING), get the treatments, track the effects and ask questions. And if you think a change in regimen will be beneficial, push for it. Tell your husband that he's a trial of 1. Appeal to the scientist.

Jump to this post

I love, love, love your explanation! ❤️
My husband finally had his 5th treatment today after 5 weeks of postponement. His oncologist agreed to cut back on the Oxalyplaten by 20%.
Hubby doesn’t know I’m doing this chat, but I’m going to find a way to share your comments with him — without “outing” myself. 😝 I think the points you make here will resonate with him. Thank you!

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thebobk | @thebobk | Aug 23, 2022
In reply to @woodlanddsm "I too would be very interested in your book if you could keep us posted by..." + (show)
@woodlanddsm

I too would be very interested in your book if you could keep us posted by announcing when it is available!

Jump to this post

@woodlanddsm Book is now available. Best, https://www.amazon.com/One-Path-Among-Many-experiences-ebook/dp/B0BBD5ZVTG

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