Update on my mother (Page 1 of 2)

Jujubear...I am in awe of your Mom.  She is determined to fight this disease and is exploring all available options. I am positive that others will come forward and share their thoughts with you however; in the meantime you might want to use the "search" function by entering the word "ascities."  We have numerous postings addressing the common occurrence of fluid retention and I am positive that you will find some answers here also. 
Hopefully others will chime in real soon.
Hugs,
Marion

My mom just finished her third round of F5U combined with oxiliplatin.  She does great while the pump is connected.  After the disconnect, the next 2days are tough in her.  Extreme fatigue and nausea.  The nausea is relieved by meds.  My mom rinses with Biotin 2x a day to help avoid mouth sores.  She drinks water with electrolytes to reduce the chance of dehydration.  I let her sleep a lot during those days and she makes up her nutrition in the following week. 

Good luck,
Lauren

Thanks for the helpful tip Lauren! I will see that I pick up some biotin tonight to keep at home.

Hi, Jujubear

I think your mom should be taking care in the hospital. I will tell you why.
My husband has the same problem, Lasix didn't work. Taking oral treatment for fluid developing doesn't work. Medicine taken in perfusion form work directely, but Lasix seems to not work for any pacients that i met here, in Leuven - Belgium Universitary Hospital. Now, the professor of my husband, is giving to him Burinex - perfusion. It is working very good. I forgot to tell you that in the case of my husband a stent it is not possible to be implemented, it is to risky.

So, maybe this information will help you.

God bless you,

Liliana, Belgium

jUJUBEAR, I am so very sorry this is still going on. Just wanted to ask if they did a blood culture for infection? Teddy used to get blood infections from the CC and the ONLY way to detect one is with a blood culture. Since the culture would take 4 - 5 days they would start him on Levaquin immediately as the Onc said Levaquin will kill anything going on that should not be. He would get chills and fevers around 103. I would put 3 blankets/quilts on him and climb on top and he still could not warm up. Called an ambulance each time and as soon as they started a Levaquin IV he would loose the fever and the chills. Does the ONC feel the fever and chills are from the chemo?

Today is day 4 of being in the hospital. My mother was admitted last Friday. We decided to bring her in because her fluid was getting worse in her belly and legs. Also, she was getting fevers every day. After spending the night in ER, mom finally got a bed upstairs. The doctors have been in and out throughout the days she was herein  and she is just getting pain meds with 2 different antibiotics because they say she has an infection. They have not done any fluid removal because since Friday, her blood pressure is low. It was at 94/59, and today it is up at 103/68. Being that she is pretty much bed ridden, her BP will not go up much.
Today I witnessed my mother's body changes. Her thighs are filled with fluid and I also saw her sides have pockets of water.
Being that she is uncomfortable many doctor's have suggested palliative care. My mother has always been a fighter. This is her third cancer, which included: pancreatic cancer in 1996 and breast cancer in 2006 with a mastectomy. She wants to get the fluid out and continue with her chemotherapy.
Tomorrow the doctor requested to have a meeting with her and the family to talk about " what is next" for my mom. She mentioned briefly about hospice, but said she will talk more about it tomorrow. They are giving us 2 options: 1. Treat cancer aggressively 2. Treat her symptoms and take care of her pain without chemotherapy

That's a very hard decision... I know my mom wants to fight but I get a feeling the doctors are pushing for her to stop.
They just put in lasix by IV and also restricted by 1 liter of fluid for today.

Thanks Lainey for that advice!
We have a meeting at 2pm tomorrow. Will keep you all updated.

Jujubear.....I will be thinking of you tomorrow.  The upcoming meeting with the physicians will clarify many important things:
1. is a Paracentesis possible (removal of abdominal cavity fluid?)
2. what is causing the ascities (fluid accumulation?)
3. Is she able to tolerate the suggested treatments (chemo?)
4. Is she responding to the antibiotics?
I believe that these points, once addressed, will allow for a clearer picture.
Based on the outcome of the meeting, and your supportive presence, your Mom will be able to make a decision.  My fingers are crossed and I wish for the best of luck.
Hugs,
Marion

Hi, I wanted to first thank all of you who have taken your time to give me such wonderful advice. And now, I will update you all on what happened.

We had a meeting with my mother's medical doctor, the onc who was working with my mother's onc, the pallative care team, and 2 social workers. The meeting was to make sure that my mother knew what was going on with her, and how she was feeling. They wanted to make sure that she understood what was she going through. And any questions we had, they answered it to us.
The last CT scan that mom had was in August 2012. The Onc had told us that the first round of chemo ( gemzar) had worked, then seemed to stop working. He mentioned that he saw another growth near her kidney area, and that is when he recommended the 2 options of either gemzar with cisplan, or the 5FU. His suggestion was 5FU because of my mom's age & condition.

Back to the meeting: we were informed that not only did her cancer spread to her kidney area, but also her ovaries and stomach lining. Because it had spread out, the fluid is constantly forming. They are also giving her 2 different antibiotics for her infection. Her blood pressure is still low, and they do not want to TAP her because her pressure will get lower.
When asked by the medical team, what she will like to do, she says that she wants to get the fluid out first, and see if she can get chemo. The doctors have been giving her LASIX through the IV, and slowly the fluid is coming out. For my mom, she told them that quality of life cannot be attained by just being in bed and getting her symptoms taken cared of. The pain medicine that she is given makes her sleepy, but doesn't keep her asleep. She wakes up abruptly, gasping for air. The nurses are constantly checking her lungs, and they say it is fine. When asked, my mother says that she feels pain in her chest. The doctors have said that due to her infection and low blood pressure, her heart is beating very rapidly, and is overworking....
I see my mother in pain, but I do know why she chooses to keep fighting. It's because she doesn't want to have any regrets. At the end of the day, she wants to say " at least I tried..."

As of hospice: the social workers will have to check and see if our insurance covers hospice care. My mother wants to be at home, and they will try to set it up with hospice to take care of her at home.

My family now is starting to prepare other things as of now. Things that I wish my parents would of taken cared of before anyone was sick. But, it must be done. My parents never had a proxy, so that was done. They both never discussed how they would like to be buried, or if they wanted to be cremated. That is being taken cared of now for my mom. And now, my dad is letting us know of his wishes for himself.

For my mother, she wants to take things one step at a time. Get the fluid out, and see if she can get treatment. If not, then she knows what the next step is. The doctors let us know that this chemo treatment is the last option for her.

I will ask the doctors about the option of taking chemo in pill form! If she is eligible for that, it would be fantastic for her! Thank you for advice, PCL1029! I will keep you in my prayers!

Please help me.

Yesterday my mom would not stop sleeping. She fell into a deep sleep, and when the doctors or nurses tried to wake her to see how she is doing, she would wake up then fall back to sleep.
The doctors gave her 2 diuretics and she did not release any fluid by urine. They took her bloodwork and saw that her liver counts were high. They said she has an infection in her liver and that the antibiotics she is using is the strongest . Her blood pressure started off in the morning at 95/68 then fell to 77/48 by midnight. This morning it is at 70/?..

This happened very quickly, she was fine the other day before and it's very sudden. When I do get a chance to speak to her she says that she is ok and that she is fighting.

Jujubear.....My heart is with you.  Julia, your Mom can hear you; she feels your gentle touch, is aware of your presence and the surrounding love.   
My love and thoughts are with you in this so very precious time.
Hugs and kisses,
Marion

So sorry about your mother's passing. May the passage of time give you peace with your memories of her.