1. < Pancreatic Cancer

Help: Struggling with Wife's Pancreatic Cancer issues

Posted by papahotel58 @papahotel58, Jul 21 9:07am

Its been just over a year now that my wife and I started this fight with nonoperational Pancreatic cancer. We are now on a new chemo and I feel it's not working. She has lost close to 30lbs recently over the past couple months. She spends most days tired and very little energy. We have good days but by the time she starts feeling better it's time for another round of Chemo that knocks he down again. it's a vicious circle. We just got a CA-19-9 results and her numbers have risen and are close to 7000. At one time we had it down to 26 but that was in January and things have gotten much worse over the past few months. She has a lot of abdomen pain and back pain after eating very little and I have to stay on her to drink more so she doesn't get dehydrated. Recently we had a big talk and agreed that we have allowed the Cancer to take over our lives and that's all we were focusing on was the CANCER. We stopped being husband and wife and became too much caregiver and patient. We have recommitted ourselves to being that once again and we will put our love for one another first and deal with the cancer as best we can, never forsaking our love and commitment to one another. But we chose to love and be as happy as possible with the time we do have left together, wither it be days, week or 20yrs more. There is very little we can do other than trust that the Dr are doing what's best of her and trust 100% in God. I guess I just needed to talk to someone since I feel everyone including our own children and family have distant themselves from us in this fight. I've asks my sons to call their mother and check in on her knowing it would really cheer up her spirits but the calls a few and far apart. So, we continue on this journey together, hand in hand forsaken all others as we have done for many years facing life's challenges as a united couple, continuing to believe in one another and knowing everything is going to be alright. as long as we face them together. Thank you for your time and if you can share any words of wisdom or just want to help me with this struggle I'd appreciate it.

God Bless you all

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 12 1:24pm
In reply to @papahotel58 "Here is a update to share, first of all thank you all for the love and..." + (show)
@papahotel58

Here is a update to share, first of all thank you all for the love and kind words of support. I really appreciate it.
So, we are no longer treating the cancer, chemo failed due to having an allergic reaction to the new drugs. So now it's come down to pain management and keeping her as comfortable as possible. She grows weaker by the day, I have to actually walk her to the bathroom and bedroom, she can't get in or out of the bed on her own anymore. When she's awake I spend 100% of my time with her doing any and all that I can to enjoy the time and make her happy. She is struggle with constipation from all the pain meds she takes, hoping she can get things moving soon it's been 14 days since last bowl movement, she got a suppository and enema earlier so far, it worked a little but not a lot. Not eating much still. I know the time is running out and I'm more focused on the making her days as best possible, but I do know that one day this fairy tale marriage will end, and she will be with the lord, and I will be all alone with no idea what to do. But until then I will love her and will show that with every action I take. Thank you all for the prayers and kind words, thank you Jesus for the past 44+ years I have had with her I am truly blessed and continue to be, by his stripes we are healed, Amen

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Thinking of you and your family, @papahotel58. Do you have help from hospice care and volunteers?

REPLY
arffman1 | @arffman1 | Oct 17 4:21pm

First thing God Bless you both it is a bumpy road my wife and I are three treatments into a stage four pancreatic cancer when we started they gave it a stage 1 status and then after a pet scan they found two spots on the liver which then bumped it up to stage 4 which was like getting hit with a baseball bat now we are in to the iv treatment phase with 3 treatments completed and 9 more to go its not being nice to my wife not eating, no energy but the nausea is relentless we cant get anything to work. Do you have any ideas? What did yall use
Thank you and God Bless
Alec Beard

REPLY
2 replies
mavis | @mavisann | Oct 17 8:23pm
In reply to @arffman1 "First thing God Bless you both it is a bumpy road my wife and I are..." + (show)
@arffman1

First thing God Bless you both it is a bumpy road my wife and I are three treatments into a stage four pancreatic cancer when we started they gave it a stage 1 status and then after a pet scan they found two spots on the liver which then bumped it up to stage 4 which was like getting hit with a baseball bat now we are in to the iv treatment phase with 3 treatments completed and 9 more to go its not being nice to my wife not eating, no energy but the nausea is relentless we cant get anything to work. Do you have any ideas? What did yall use
Thank you and God Bless
Alec Beard

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Alec, sorry about what you are going through.
My wife vomited for 12 hours (from 8pm on day #2 to 8am on day #3) after her #1 chemo treatment. The Dr added Emend to her premeds given before chemo drugs and she’s not had that issue since, she just had #7.
Hope you find what works for your wife.

REPLY
2 replies
arffman1 | @arffman1 | Oct 17 8:38pm
In reply to @mavisann "Alec, sorry about what you are going through. My wife vomited for 12 hours (from 8pm..." + (show)
@mavisann

Alec, sorry about what you are going through.
My wife vomited for 12 hours (from 8pm on day #2 to 8am on day #3) after her #1 chemo treatment. The Dr added Emend to her premeds given before chemo drugs and she’s not had that issue since, she just had #7.
Hope you find what works for your wife.

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Thank you

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 17 8:46pm
In reply to @arffman1 "First thing God Bless you both it is a bumpy road my wife and I are..." + (show)
@arffman1

First thing God Bless you both it is a bumpy road my wife and I are three treatments into a stage four pancreatic cancer when we started they gave it a stage 1 status and then after a pet scan they found two spots on the liver which then bumped it up to stage 4 which was like getting hit with a baseball bat now we are in to the iv treatment phase with 3 treatments completed and 9 more to go its not being nice to my wife not eating, no energy but the nausea is relentless we cant get anything to work. Do you have any ideas? What did yall use
Thank you and God Bless
Alec Beard

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Hello @arffman1 and welcome to Mayo Connect. I can certainly understand how you would feel overwhelmed with a Stage IV diagnosis. I would encourage you to read some of the other posts by members who have the same diagnosis such as @stageivsurvivor. Here is information about his journey with a Stage IV diagnosis with pancreatic cancer,
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/clinical-researcher-turns-patient-advocate-meet-stageivsurvivor/
--Also, the Spotlight of @markymarkfl
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/facing-it-with-connect-meetmarkymarkfl/
When did your wife's chemo treatments begin?

REPLY
1 reply
arffman1 | @arffman1 | Oct 17 9:34pm
In reply to @mavisann "Alec, sorry about what you are going through. My wife vomited for 12 hours (from 8pm..." + (show)
@mavisann

Alec, sorry about what you are going through.
My wife vomited for 12 hours (from 8pm on day #2 to 8am on day #3) after her #1 chemo treatment. The Dr added Emend to her premeds given before chemo drugs and she’s not had that issue since, she just had #7.
Hope you find what works for your wife.

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My wife is on a every other week regiment with a 6 hour day at the treatment center and then they give her a Fanny pak and a 48 hour drip for the house. I will have to wait until she gets up to tell you the name of the drugs

REPLY
1 reply
arffman1 | @arffman1 | Oct 17 10:09pm
In reply to @hopeful33250 "Hello @arffman1 and welcome to Mayo Connect. I can certainly understand how you would feel overwhelmed..." + (show)
@hopeful33250

Hello @arffman1 and welcome to Mayo Connect. I can certainly understand how you would feel overwhelmed with a Stage IV diagnosis. I would encourage you to read some of the other posts by members who have the same diagnosis such as @stageivsurvivor. Here is information about his journey with a Stage IV diagnosis with pancreatic cancer,
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/clinical-researcher-turns-patient-advocate-meet-stageivsurvivor/
--Also, the Spotlight of @markymarkfl
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/facing-it-with-connect-meetmarkymarkfl/
When did your wife's chemo treatments begin?

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September

REPLY
stageivsurvivor | @stageivsurvivor | Oct 18 4:09am
In reply to @arffman1 "My wife is on a every other week regiment with a 6 hour day at the..." + (show)
@arffman1

My wife is on a every other week regiment with a 6 hour day at the treatment center and then they give her a Fanny pak and a 48 hour drip for the house. I will have to wait until she gets up to tell you the name of the drugs

Jump to this post

Based on the time and the portable pump, your wife is on the (m)Folfirinox regimen which is a first-line cocktail considered the “gold standard”. The first drug infused is oxaliplatin (Eloxatin) for 120 minutes followed by Leucovorin (Folinic Acid) for 120 minutes. Next comes Irinotecan (Camptosar) for 90 minutes and then some oncologists first inject a bolus of 5-FU over a period ranging from 5-15 minutes while others do not do this step and go directly to connection of the portable pump containing 5-FU (5-Fluorouricil) with infusion over 46 hours.

One cycle is 14 days with 11 days of rest. The next cycle begins on day 15 and a typical course of treatment is 12 cycles that takes a total of 6 months (12 weeks). Ct imaging is done between cycles 6-7 (3 months) and again after cycle 12 (6 months) to determine efficacy. Blood draws are done for the biomarker CA19-9 before each infusion to monitor the trend of the CA19-9 between CT imaging.

REPLY
1 reply
gamaryanne | @gamaryanne | Oct 18 10:00am

I am a stage IV survivor for almost 3 years. I had liver Mets and for a time, a met in my lung.
There are many tools in the tool box now for us. When one isn’t working, there are other options.
Depending on age/health, seek these out. Doctors that see high volume of this disease can offer options. With pain, it is important to align with a palliative care nurse. They make our lives so much easier.
lastly, remember why we take these medicines and trial drugs-to live! Remember the things you enjoyed doing before this disease invaded and plan to do some of them. Even if in an “abridged” way. Don’t give cancer the power. On a beautiful day, take a ride. Go to a comedy show and laugh! Find funny movies to watch together. And force smiles even when there is nothing funny. A smile can turn anyone’s day around. It says I see you, I love you, I hear you.💜

REPLY
sheridanb | @sheridanb | Oct 18 11:09am

My husband did the 12 folfirinox treatments. During the last 2-3 months of it he could barely leave the couch. Light headed plus exhaustion, neuropathy, nausea. A maintenance dose for 4 months made most of that, except neuropathy, disappear which was nice. But now back on the full folfirinox again. He's now doing the ice treatments... booties/mittens/ice chips... while getting the chemo. I mention this as it is hopefully going to prevent the neuropathy from getting worse. Wish we had known about it when he started his first 12 as maybe he wouldn't have it as bad in his hands and feet.

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