Stage IV Mets to Peritoneum need help

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strongintexas
strongintexas Member Posts: 8
edited January 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hi! I've been following this site for my mother for a few years now. She was diagnosed with stage IV ILC mets to bones two and half years ago. Letrozole and Ibrance kept her pretty good for these past few years and then things took a turn for the worse about four months ago. Her Onco switched her to Faslodex and that made her very sick, then he switched her to Afinitor and Aromasin and she grew more sick. She was taken off of the Afinitor but still on Aromasin and was hospitalized for eight days because she had gotten so thin and malnourished from all of the meds and maybe the cancer, but it's weird, no one seems to know why she's having so much stomach trouble. She has uncontrollable diarrhea and vomiting all day and her stomach makes loud noises. At the hospital they did a CT scan because she had blood in her bowel movements but nothing came up in the scan and they took her off aspirin, which helped with the blood, but no relief for the diarrhea and vomiting. It took six days in the hospital for them to send a GI doctor to see her and that's the first time she's seen one since the stomach problems started five months ago. The Onco sent her home for her to try to get stronger, but she just keeps getting worse because the stomach issue isn't resolving. It's very hard for her to go to all of these appointments because she is so weak and sick. No one has said that the stomach issue is from the mets to the peritoneum and it hasn't spread to her GI tract, but we can't get any answers on how to help her stomach so that she can work on getting stronger. Can anyone relate or does anyone have any knowledge on how I can get help or better information? I feel like we are being forgotten about by these doctors who are actually supposed to be some of the best.

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  • Racy
    Racy Member Posts: 2,651
    edited December 2018

    Hi, your mom's oncologist should be in charge of her care and providing input about any other conditions she is experiencing and managing side effects. Please check in again with oncologist and if not happy with response look for a better oncologist.

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  • strongintexas
    strongintexas Member Posts: 8
    edited December 2018

    Thank you, but it’s kind of too late to go Oncologist shopping. I actually wish it was that simple. We thought we had the best, but I don’t know, maybe he’s gotten too busy. I was hoping for some navigation advice or if anyone out there had similar symptoms and what they may have done about them. I’m her caregiver and I search for answers day a night. thought I might find something here. Would appreciate any advice. <3

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited December 2018

    hi strong in Texas - I am sorry your mom is going through this. Sounds very scary and also so uncomfortable for her :(

    Sometimes the body has a virus that just never cleared and when our immune systems become weakened, the virus uses it as opportunity to take hold of the terrain and reek havoc.

    At this point, it sounds like your mother needs to be put on IVs and parental nutrition - which would be at a hospital. Anti-nausea and antidiarrheal medications to stop the vomiting and diarrhea. Once this is under control and she gains some strength and weight back, then better treatment decisions can be made.

    You may have to insist on this if you are not being heard by her doctors. Keep calling and even show up in person if you are having trouble being heard by her doctors. It can be quite frustrating as an advocate - but keep shouting until someone hears you and you feel like your mother is being taken care of

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  • HLB
    HLB Member Posts: 1,760
    edited December 2018

    Texas I agree with philly. Sometimes we have to get downright pushy. If she is not even on anti nausea meds he should at least prescribe that. If she is, it's a lot better to take them before feeling sick. The doctors are so busy anymore, I had cancer the first time in 2004 and it's very obvious to me that quality of care has suffered due to many different factors. Every once in awhile I feel like there is not enough urgency but I never said anything. The last time I finally wrote an email that got the point across (after a few frustrating phone calls) and things moved along very quickly after that. I hope your mom is hanging in.

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  • strongintexas
    strongintexas Member Posts: 8
    edited January 2019

    Thanks everyone! My mom was told by her oncologist that he thinks she has a chance to get stronger if she eats more protein. Unfortunately I was not able to attend this appointment to be able to ask what to do if she just ends up throwing up whatever protein she swallows (My parents aren't great about being pushy with the doctors). My mom was excited to go home and try to eat more protein, but everything she tries she throws up. I think our next step is to see a gastroenterologist and find out what is actually happening with her GI tract. It's so frustrating because it feels like we keep going in circles and every attempt to get answers turns into another dead end. Meanwhile my mom gets weaker and weaker. Nothing shows up in her scans. And with the holidays everything has been closed. It's just so frustrating. I am also starting to wonder if these stomach problems are part of the long term effects of Ibrance because she was on it for a few years and maybe that's why no one knows what's going on because it's such a new drug.

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  • Peacetoallcuzweneedit
    Peacetoallcuzweneedit Member Posts: 233
    edited January 2019

    HI there strong - I am so sorry for everything your mom is going through. I am a registered dietitian....has your mom seen one yet? I would say she needs a nutrition assessment, with a nutrition care plan. Minimum enteral nutrition should be an option....Ensure may make actually induce diarrhea but there are nutritional supplements that can be used/tried with your mom - Jevity is one...the more diarrhea she has that goes unresolved the more malnourished she can become as the villi along the gut wall flatten and nutrients are not absorbed, in addition infections are more frequent when this happens. In addition, she loses more fluid and then hydration becomes an issue. Can she keep any fluid down? Some over the counter options she can try right now are the protein waters - outside of this type of situation they are not needed but it is an option. There is also Benepro and Benecal that can be added to bulk calories and proteins to any foods she can keep down. How about something as basic as unsweetened apple sauce or white rice? Can she keep those down and/or do they induce diarrhea? A liquid vitamin at this point may/should be an option but I say this loosely as she is not my patient so I make recs generally.

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  • strongintexas
    strongintexas Member Posts: 8
    edited January 2019

    Hi Peacetoall, We did see a dietician very briefly in the hospital, but didn't get any of the recommendations you are giving. My mom was cleared to eat whatever she wanted while in the hospital so they're not restricting anything. She is able to eat yogurt, cottage cheese, and cream of wheat, but she has only had loose stools for months now. She hates Ensure and Boost and many other things including apple sauce. It is very hard to get her to eat much as most things either seem unappetizing to her or she fears throwing them up. She gets fluids once a week and now it seems they are going to add potassium because I think the starvation is causing a deficiency. She likes crushed ice and that is better for her than drinking straight water. I think I will look into Jevity, Benepro, and Benecal. No one has mentioned these to us yet. Thank you so much! If there's anything else, please feel free to let me know.

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