Topic: Mom's prognosis

Hi everyone. I'm stacie..
My momthers dr has said that she has about six mos left if we do nothing else. I'm not sure what to do at this point. my mom was diagnosed on nov.2 2011 w cc. she was very sick. jaundice was terrible n weak . she had several biopsies and about 8 ercp's. finally had metal stints put in and was ok. dr sd she wasnt a candidate for surgery. tumor too big. we did chemo. gem/cis. wow was that awful on her. stayed in the hosptial needed platelets,transfusions lasix and lots of fluids. went into kidney failure. side affects were bad. mom lost all her hair and teeth hurt. that was after only 3 treatments. her dr told me to take her hm and prepare for her death. mom had lymphadema as well. i wrapped her edema wear daily. mom had puss n blood seepimg from her stomach. her body smelled terrible . dr. said it was close to the end. i took her hm to live w me and i changed her diet. took best care i could of her. she lost 42 lbs of watwe weight. her diabetes was so gd she didn't have to take insulin and gor  off her bp meds. things were gd for about six months. tumor hadn't grown and mom was happy n living a gd life again. after months scan showed ma has 2 more tumors and they r bigger than her first one. started chemo again. 5-fu. no side affects at all. been great for six months. now we had a scan last tues and results showed it has spread to her lungs and abdomen. not gd for her. dr sd we can try adding another med to her current chemo but side affects can be bad. my mmom is tired and doesnt want to do it if shes going to be sick agian like b4. dr told us to at least just try it for 3 wks to say we tried and pray for a miracle. i cant bare to see my mom suffer like that again n know shes going to die anyway or this will take her sooner. my mother doesnt know about the 6mos time.  my question is do i tell her? do i say try chemo n chamce her getting so sick n dying in a bad way? momwas very sick. any help is appreciated. thnx.

Re: Mom's prognosis

Dear Stacie, welcome to our very loving family but so sorry to hear all that your Mom has been through. My first question would be did you get any other opinions? We highly recommend 2nd and 3rd opinions. May I ask what age your Mom is? As for what to do? I believe in telling the truth. It helps everyone involved accept and deal with it better and everyone has a right to know what is happening and why. I would sit down with her and explain what has been said. Then let her make the decision, it is her right especially so she can "get her house in order" as we used to say. With that said I would also ask the ONC if it was her Mom what would she tell her to do? IF she has chemo again how much time will it buy her vs not having chemo. These questions will help her make up her mind. These are the things we did when my Teddy was told he had 5 - 6 months without chemo and that chemo would only buy him an extra month. He thought about it for 2 days and he decided quality over quantity. I am not comfortable with the ONC suggesting "try" it again. That surprises me. Please know you are not alone we are here for you and please do keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mom's prognosis

Hi Stacie, 

Welcome to the forum although I am sorry that you have had to come here.  I echo what Lainy said about a second opinion, know all the facts and then your Mum can make a decision on whether she wants more treatment or not.  You are in the best place for answers and support, whatever decision is made.

Clare

In the stars now . . . .

Re: Mom's prognosis

Hi Stacie.
I'm sorry you had to join our family. I, too, say get another opinion, and definitely ask the docs what their choice would be. And I believe in telling the truth. I think she deserves to know, so she can be prepared and be able to, as Lainy put it, "get her house in order".
Please keep us updated on your decisions, and progress. And don't hesitate to ask questions. We are all here to try to help.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Mom's prognosis

You have been a wonderful, amazing, loving daughter. I am so impressed with the care and love you have shown your mom. yes, second opinion. yes, honesty, very gently. I have 3 children and while they want to be informed and "in the loop" they don't actually want the bad news straight up. I have to be very very gentle in talking with them. It's a fine balance. Good luck. Keep us posted, we are listening.

Re: Mom's prognosis

Hi Stacie. I am very sorry to hear what you and your mom are going through. You have a tremendous amount of support within this organization and we are glad you are with us. I am also on 5-FU plus leucovorin with a 3 rd agent added called Tarceva.  Is this what the Dr is suggesting to add to your mom's regimen?  If so, I would be happy to share my experience with it as I have been on it since September.
Bj

Re: Mom's prognosis

Hi Stacie,

I'm so sorry to hear about your mom.   I think when my mom was new to her disease and treatment, too much information was overwhelming for her.  But as she's getting more used to everything, she's been wanting to know more.  When I first came on the discussion board, one of the members (I think it was Marion) said knowledge is power, and I agree. 

I hope both you and your mom find peace and strength during this difficult time.  I'm sending a big warm hug your way.

Caroline

Re: Mom's prognosis

Dear Stacie,

When my Mom was diagnosed, and was admitted into the Intensive Care Unit, the doctors thought She had a week, two at the most. But She proved them wrong, She fought as hard as She could. I was by Her side the entire time. I understand the hell one goes through when you watch the strongest person in your entire world become so weak right in front of your eyes. Everything happened so quickly that we never had the chance to tell Her what was killing Her. She did inadvertently find out, but we could not tell Her. It would have broken Her will. She would have refused treatment if She knew we were not going to win this battle. But a day before She passed away, I did tell Her because somewhere deep down I knew She deserved the truth, everyone does. She was on the ventilator and not responsive but I would like to believe She heard me. I had never lied to Her in my entire life, but I wanted to protect Her in every way possible I could. It is a hard decision to make, I understand. The only thing that saddens me even more, is that no matter how much we love someone, we can't take away their pain. I prayed relentlessly, to spare Her and take me instead. I live each day with my own grief and burden but the only thing that comforts me to know is that my Meemo is not suffering any more.

Love,
Dee