Help with ascites

Posted by asingh90 @asingh90, Jul 14, 2023

Hello everyone, my mom is an advanced pancreatic cancer patient. She had the whipple in July 2020, but the cancer came back a few different times starting in Dec 2021, but we were able to handle it through surgeries. She recently left an immunotherapy trial that targeted her particular genetic fusion. Unfortunately, it didn’t work and she began getting ascites during the trial. Since April, she had to get drained once every three weeks, but now it is 1-2 times a week. Does anyone have any advice on the best way to handle this? She has not received chemo and will he staring her first course very soon. The ascites is making her very symptomatic, but she feels a lot better once it is drained. I’ve heard some things about the at home catheter. Thank you for your advice

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@nunz12

Hi my sister in law was diagnosed October 17/22 she finished her first round of chemotherapy was feeling better after a month started feeling pain new lesions in stomach lining and ashites very very uncomfortable had to get drained regularly then her legs swelled upto the thighs hard as a rock limited standing now fluid build up on her lungs. She has been taking diuretics and has catheter in her lungs but fluid keeps coming back. The legs remain same. She was diagnosed with stage 4 metastasized to liver but is a warrior and continues to fight this fight. Anyone go through this? Thank you 🙏

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She attempted to restart, but her condition was worsening and after one treatment she had to go to hospital, then care facility, then home hospice.

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@nunz12

Hi my sister in law was diagnosed October 17/22 she finished her first round of chemotherapy was feeling better after a month started feeling pain new lesions in stomach lining and ashites very very uncomfortable had to get drained regularly then her legs swelled upto the thighs hard as a rock limited standing now fluid build up on her lungs. She has been taking diuretics and has catheter in her lungs but fluid keeps coming back. The legs remain same. She was diagnosed with stage 4 metastasized to liver but is a warrior and continues to fight this fight. Anyone go through this? Thank you 🙏

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Hi @nunz12, I moved your post about pancreatic cancer and ascites to this existing discussion:
- Help with ascites https://connect.mayoclinic.org/discussion/help-with-ascites/

I did this so you can read some of the helpful previous posts that include more information as well as connect with other members like @asingh90 @k13 @capricorn24 @beachdog as well as @mayoconnectuser1.

This must be so difficult for your sister-in-law and for you and your family to see her suffer. Is she currently hospitalized or at home? Does she have a palliative care team managing her symptoms and helping to keep her comfortable?

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@colleenyoung

Hi @nunz12, I moved your post about pancreatic cancer and ascites to this existing discussion:
- Help with ascites https://connect.mayoclinic.org/discussion/help-with-ascites/

I did this so you can read some of the helpful previous posts that include more information as well as connect with other members like @asingh90 @k13 @capricorn24 @beachdog as well as @mayoconnectuser1.

This must be so difficult for your sister-in-law and for you and your family to see her suffer. Is she currently hospitalized or at home? Does she have a palliative care team managing her symptoms and helping to keep her comfortable?

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Thank you so much, she is currently in hospital since October 12/23 she was diagnosed October 17/22.
She started in June with ashites in stomach lining, fluid build up in her legs extremely painful now her lungs are filled getting drained 3x a week.
The fluid has cancer cells, is moving through out her body cannot get rid of it.
Now an option the oncologist offered if she gets her nutrients up with a tpn significantly she continue on chemo, only because her cancers markers on tumours have gone down from her chemo.
She has new lesions in her stomach lining.
She is in extreme pain and discomfort and is pretty much bedridden.
Her upper half is very tiny but lower half very swollen and stomach distended.
She has catheter in stomach and each lung.
Sending prayers to everyone going this journey.

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nunz12,

I am so sorry - have you contacted a local Hospice team? What does your sister in law want to do - it is important to ask her if she wants to be at home.

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@nunz12

Thank you so much, she is currently in hospital since October 12/23 she was diagnosed October 17/22.
She started in June with ashites in stomach lining, fluid build up in her legs extremely painful now her lungs are filled getting drained 3x a week.
The fluid has cancer cells, is moving through out her body cannot get rid of it.
Now an option the oncologist offered if she gets her nutrients up with a tpn significantly she continue on chemo, only because her cancers markers on tumours have gone down from her chemo.
She has new lesions in her stomach lining.
She is in extreme pain and discomfort and is pretty much bedridden.
Her upper half is very tiny but lower half very swollen and stomach distended.
She has catheter in stomach and each lung.
Sending prayers to everyone going this journey.

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I'm so sorry your sister in law is going through this. My Mother went through something similar during her battle with this disease. I think the fact that the chemo helped before is a good sign, in that if there is a way for her to re-start the chemo, it may help her. TPN sounds like a good idea too because it can give her the necessary nutrients she will need to not only survive, but also handle the chemo. I just wanted to point out that our oncologist did not let my Mom go on TPN because he said the continuous drainages plus diuretics will cause a lot of fluid imbalance in her body, which could be dangerous. However, if your oncologist is saying it is ok, then it must be fine, but it may be a good idea to double check with her. In the event that she cannot go on TPN, giving her high calorie shakes may be an option if she can tolerate them. My Mom never used the catheters, but she did go in for consistent peritoneal drainages for many months and one lung drainage towards the end of her battle. She also used diuretics for her leg edema, which did help, but it caused massive dry mouth issues. Ascites can be very difficult to deal with and I believe the best shot of getting rid of the ascites is through chemo. I pray that she is able to re-start the chemo soon and feels better. I realize how tough this disease is and I pray also for you and your family to have the ability to stay strong during this difficult time. Please let me know if you have any questions.

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@asingh90

I'm so sorry your sister in law is going through this. My Mother went through something similar during her battle with this disease. I think the fact that the chemo helped before is a good sign, in that if there is a way for her to re-start the chemo, it may help her. TPN sounds like a good idea too because it can give her the necessary nutrients she will need to not only survive, but also handle the chemo. I just wanted to point out that our oncologist did not let my Mom go on TPN because he said the continuous drainages plus diuretics will cause a lot of fluid imbalance in her body, which could be dangerous. However, if your oncologist is saying it is ok, then it must be fine, but it may be a good idea to double check with her. In the event that she cannot go on TPN, giving her high calorie shakes may be an option if she can tolerate them. My Mom never used the catheters, but she did go in for consistent peritoneal drainages for many months and one lung drainage towards the end of her battle. She also used diuretics for her leg edema, which did help, but it caused massive dry mouth issues. Ascites can be very difficult to deal with and I believe the best shot of getting rid of the ascites is through chemo. I pray that she is able to re-start the chemo soon and feels better. I realize how tough this disease is and I pray also for you and your family to have the ability to stay strong during this difficult time. Please let me know if you have any questions.

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Hi, there are so many challenges she is faced with, the only reason the oncologist advised on tpn is her tumour markers pancreas and liver gone down significantly but amount in body is significant. There are cancer cells in fluid. One more challenge she just found out lump in breast biopsy confirms cancer,
Now they are testing to see if it’s from pancreas or which type of breast cancer.
He said that would change course of action and target breast cancer.
She is extremely tired needs help with bathroom trips legs are so hard to move and shortness of breath.
We hope that new course of action( depending on results) will help with all fluid.
Thank you everyone

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Unfortunately, this disease brings on so many challenges, and often they come up so quickly. I'm sorry to hear about the cancer in the breast as well. I am hoping that the new cancer found can be removed quickly. Some other tips for edema in the legs besides diuretics include wearing compression socks all the time except for sleeping. These can provide a little bit of improvement, which is better than nothing. Also, it is good to keep the legs elevated above the heart. If she does this while she sleeps, her mornings should be a bit more comfortable on the legs when she wakes up. If TPN can be done, that would be great. It will need careful management, though, as the constant removal of fluid along with diuretic use and then intake of fluid can potentially cause fluid imbalances, which can be lead to some issues. Normally, an internal medicine doctor is put in charge of managing the TPN on referral of the oncologist. The TPN will need to be managed very closely. I pray that she can begin chemo soon and that it works quickly on the cancer, as that will reduce the ascites.

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Thank you for your input, she does wear compression stockings but the legs seem to be getting worse she does elevate her legs above heart but lungs are filling with fluid too so hard to breathe. The diuretic is not working.
They are draining her every other day between lungs and stomach. She is extremely weak and tired, it’s only day 2 of tpn, I pray she gets nutrients from tpn and fluid reduces and she can start chemo
Thank you

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I wish her the best of luck! Praying for all of you!

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@asingh90

I wish her the best of luck! Praying for all of you!

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Thank you, I will post what doctors will do to help her, if anyone going through same.
Prayers to everyone going through difficult times.

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