Mom going through hell. Anyone had this or heard of it? What can we do to get the doctor to listen??

faithinmom
faithinmom Member Posts: 4
edited March 2014 in Ovarian Cancer #1
Mom is 27 radiation and 6 chemo treatments down. She has had pretty much every reaction you could imagine plus some I didn't even think could happen. She ended up in the hospital before Christmas with a pulmonary embolism. Got out 4 days before Christmas but ended up in ER on Christmas day due to dehydration. She wasn't able to get anything down due to her esophagus being damaged by the radiation. She ended up back in the hospital after having a severe reaction to carboplatin at last Monday's chemo treatment (which I had taken her to--so I got to witness it). She apparently also had a PT INR of 8.6--which is mega high--so her blood was too thin. She's been in the hospital since. Turns out she also had a yeast infection in her throat so it felt like needles every time she tried to eat or drink. She is on a break from radiation and they are going to do a pet scan after she is done with 11 more radiation treatments--which begin on Monday--and see if she needs more chemo. The good news is that the tumors have shrunk significantly--the bad news is that I'm afraid the treatment is going to be what kills her.

Over the past week or so she has been having sharp pains in her right side between her waist and her armpit. The doctor said it's probably "nerve damage". Has anyone ever heard of this?? And today--9 days after her last chemo--she was extremely nauseous and couldn't eat and vomited severely. Should we be worried? They are keeping her in the hospital and trying to get her PT INR back up to between 2-3 so that her embolism doesn't get bigger.

Her doctor was gone over the holidays and we were very disappointed with her care. The nurses where she got radiation wouldn't listen to us when we told them that Mom couldn't eat or drink anything--I think they thought we were exaggerating. They didn't listen til she was in the ER. I just don't know what to do--my Dad is trying to deal with all of this--but I want to back him up too. It just sucks.

Comments

  • Lisa13Q
    Lisa13Q Member Posts: 677
    #2
    Encouragement
    I am sorry to hear about your Mom. I think sometimes the nurses just don't know what to do, but they should at least listen. Is there a better hospital around there? This is a tough disease and you're right, the treatment can have some terrible side effects, but eventually I think your mom will recover. My Mom was in the hospital after her cisplatin and we never thought she would recover. And she did. I am wondering if there is someone at the hospital you could talk to who can help get you some straight answers. No matter what, my prayers are with you and your mother. God Bless. Hugs, Lisa
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #3
    Be persistant
    I am so sorry your mom is going through hell right now. I can only sat not to give up, be persistant with nurses and doctors. Did you tell her md what happened at the radiation center? aLSO COMPLAIN TO WHOEVER RUNS THE CENTER. Did they give your mom spme antinausea drugs and something for the pain in her throat? there is cloraseptic that kind of numbs the pain for awhile so she can eat or drink. Give her gatorade or vitamin water. yes this truley sucks but your mom will get better. God bless and stay strong for mom and dad and take care of yourself too....val
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #4
    Be persistant
    I am so sorry your mom is going through hell right now. I can only sat not to give up, be persistant with nurses and doctors. Did you tell her md what happened at the radiation center? aLSO COMPLAIN TO WHOEVER RUNS THE CENTER. Did they give your mom spme antinausea drugs and something for the pain in her throat? there is cloraseptic that kind of numbs the pain for awhile so she can eat or drink. Give her gatorade or vitamin water. yes this truley sucks but your mom will get better. God bless and stay strong for mom and dad and take care of yourself too....val
  • Sandy10
    Sandy10 Member Posts: 80
    #5
    So Sorry!
    I am so sorry to hear that your mom is having such a tough time with treatment. I didn't have radiation but I had IP and IV chemo and had just about every side effect there was including blood clots in my abdomen. I am no stranger to PT and INR's. I too had SEVERE nausea and vomiting and was hospitalized several times for dehydration and malnutrition because I couldn't keep anything down. I ended up losing a total of 60 pounds because of it. The good news is that i did recover from all of it. It was a slow process and took several months. I am still not 100% but much better. Has your mom tried all the different meds for nausea? There are several. it took a little trial and error before we found one that worked the best for me which is Zofran. I took ALOT of it. Also, I would plan my eating and drinking for when I was the least nausous. I ate very small meals. I didn't "drink" fluids. I "sipped" them all day. My husband got me a large insulated cup with a lid and straw. He would fill it with ice water and i would just takes sips. This helped to keep me hydrated. I also had the yeast infection in my throat. This can be cured very simply with a prescription for a medicine called a "swish and swallow" It only takes a day or two to feel much better with this med. Also, see if her doctor can prescribe a lidocaine spray for her throat. This will help her be able to swallow without the pain. She can spray her throat then eat just afterward without pain. Help her to find foods that are easier for her to eat and keep down. For me it was salty foods in the begining.Pretzels, bagels things like that. I also ate popcicles to help with the dehydration and it made my throat feel better. I ate the whole fruit ones. It is definately tough. Your mom will get through this. It will take some time. I know it's definately easier said than done but try to keep her thinking positively. Take things slow. tell her to not eat "meals" but to snack all day. little things every 2 hours or so. You will find the foods and meds that work best for her. She will start to feel better and be able to eat better. Good luck to you!!! I will be praying for you and your mom. ((((HUGS)))) to you both!!

    Sandy
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #6
    Wow
    Your Mom is going thru so much but hang in there. Some women on this board have had it similar or even worse and came thru it . Demand good care everyone deserves it, my daughter won't leave me alone in the hospital for even a day. She doesn't sleep there but studies have show that patients with family or friends around to advocate for them end up with better care. Your Mom is lucky to have you. I hope things turn around for you for the better fast !
    Colleen
  • faithinmom
    faithinmom Member Posts: 4
    #7
    Cafewoman53 said:

    Wow
    Your Mom is going thru so much but hang in there. Some women on this board have had it similar or even worse and came thru it . Demand good care everyone deserves it, my daughter won't leave me alone in the hospital for even a day. She doesn't sleep there but studies have show that patients with family or friends around to advocate for them end up with better care. Your Mom is lucky to have you. I hope things turn around for you for the better fast !
    Colleen

    Thanks to all for your responses
    Mom is getting a lot of anti-nausea meds--including zofran and phenegren (sp?). They've been working pretty well--which is why it worries me that she got so sick yesterday. She is also getting the liquid treatment for her yeast infection. We are just really worried about the pain she is experiencing in her side.

    She does the all-day sipping thing too. She keeps some of her food to the side and snacks on it throughout the day too. It is getting better.

    I really appreciate hearing your experiences and finding out that maybe Mom isn't going through something that no one else has gone through. You are all amazingly strong women. My Mom is my hero. She has shown amazing strength through this--even on the days she has been tempted to give up.
  • zinaida
    zinaida Member Posts: 221
    #8
    faithinmom said:

    Thanks to all for your responses
    Mom is getting a lot of anti-nausea meds--including zofran and phenegren (sp?). They've been working pretty well--which is why it worries me that she got so sick yesterday. She is also getting the liquid treatment for her yeast infection. We are just really worried about the pain she is experiencing in her side.

    She does the all-day sipping thing too. She keeps some of her food to the side and snacks on it throughout the day too. It is getting better.

    I really appreciate hearing your experiences and finding out that maybe Mom isn't going through something that no one else has gone through. You are all amazingly strong women. My Mom is my hero. She has shown amazing strength through this--even on the days she has been tempted to give up.

    I have (some times) very
    I have (some times) very sharp pain on my left side closer to my breast, under it. More then 3 years ago I had lumpectomy and radiation on this side of my body. I ask a lot of different doctors about this pain. Some doctors told me it is could be a muscile pain, damaged by radiation. What help? Pain pill. I hope some doctor will have answer for your mom and pain pill can take care of it. Sorry dear, you and your mom have to go through so much, stay strong and good luck with every thing, (((HUGS))), Zina.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #9
    faithinmom said:

    Thanks to all for your responses
    Mom is getting a lot of anti-nausea meds--including zofran and phenegren (sp?). They've been working pretty well--which is why it worries me that she got so sick yesterday. She is also getting the liquid treatment for her yeast infection. We are just really worried about the pain she is experiencing in her side.

    She does the all-day sipping thing too. She keeps some of her food to the side and snacks on it throughout the day too. It is getting better.

    I really appreciate hearing your experiences and finding out that maybe Mom isn't going through something that no one else has gone through. You are all amazingly strong women. My Mom is my hero. She has shown amazing strength through this--even on the days she has been tempted to give up.

    You are a good
    daughter to be such a great support to your mom!!!I don't know anything about radiation, and it's effects. Is your mom being treated for oavarian cancer?
    kathleen
  • kayandok
    kayandok Member Posts: 1,202 Member
    #10
    faithinmom said:

    Thanks to all for your responses
    Mom is getting a lot of anti-nausea meds--including zofran and phenegren (sp?). They've been working pretty well--which is why it worries me that she got so sick yesterday. She is also getting the liquid treatment for her yeast infection. We are just really worried about the pain she is experiencing in her side.

    She does the all-day sipping thing too. She keeps some of her food to the side and snacks on it throughout the day too. It is getting better.

    I really appreciate hearing your experiences and finding out that maybe Mom isn't going through something that no one else has gone through. You are all amazingly strong women. My Mom is my hero. She has shown amazing strength through this--even on the days she has been tempted to give up.

    Woops!
    double post
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #11
    Hi
    Hello. I am so sorry you have to be here for your mom but how wonderful that she has a caring, supportive daughter and husband. I hope and pray that she starts to feel better as they rehydrate her and treat the yeast infection. Just being able to eat and drink is more than half the battle I think. It makes my head reel to think about the simple everyday things we all take for granted. It can be extremely frustrating trying to navigate the labryinth of red tape when dealing with medical personnel. It's not easy, esp. when you are a mild mannered unassertive person like I usually am. I would def. talk her doctor again. "Probably nerve damage" is not an acceptable answer. Not to scare you, but pain on the right side could be something with the liver. My mother (uterine cancer) was told her liver was fine. It wasn't. We realize now that the side pain she'd been having for months was actually liver mets. Please have the doctor follow up with that.

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