1

(25 replies, posted in General Discussion)

It saddens me so much to write this. My mother has passed to everlasting life yesterday  10/05/2012 at 2:05pm.

My family was beside her until her last breath. Right now, it all feels like a dream, and everything is moving so quickly.

I thank everyone for their support, and for all the advice the board members has shared. Thank you.

2

(25 replies, posted in General Discussion)

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.

3

(25 replies, posted in General Discussion)

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!

4

(25 replies, posted in General Discussion)

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

5

(25 replies, posted in General Discussion)

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.

6

(25 replies, posted in General Discussion)

Hi Lainey.
They haven't done any blood cultures yet. She has an appt tomorrow for chemo, and they usually do lab work there. Once I get there, I will let the doctor know about her conditons of getting these high fevers.
She was on levaquin before but they took it off her because they said her body will get immune to it. I do believe that her not being on it is giving her the fevers. The doctor did not say the fevers were caused by the chemo, but said it's caused by the cancer...

Thank you, I will ask the doctor tomorrow!

7

(23 replies, posted in Good News / What's Working)

Hi Maria!
Glad to hear of your good news! Hearing your news gives us hope, so thank you so very much. May I ask what things have you incorporated to your lifestyle? Thanks again! smile

- Peggy

8

(25 replies, posted in General Discussion)

Hello all.

Thank you for giving me advice for my mother.
After a week in the hospital, she was released. In the hospital she could not get out of bed and was very weak. The first few days, they had her with lasix and spirililatin (?) by IV, then switched her over to the pills. I saw that her belly looked a lot better after the IV, and asked the doctors why they had switched. They said because the IV meds are too strong and she needs to get the pills when she gets home.
Being home now, her belly looks very full again. She has a fever almost everyday. She did well for her first chemo of FU. I also bought the biotin ( thanks LAURA) and she likes that it helps her with her dry mouth.
She has compression socks, and it seems to keep her warm. Did I mention thT she feels cold all the time. And once she feels a little chill, she tends to get a fever.
Before going home, we were given a walker with 2 wheels to help her walk. I want to ask the doctors tomorrow if we can get a wheelchair for when we go to the hospital. Being that we travel 2 hrs to get the hospital for treatment, once she gets there she is too weak to walk to the treatment center.
Before I forget, while staying in the hospital, the doctos wanted to take out the fluid in my mothers belly with a needle. But my mother refused because she was scared of infection. She also got red blood transferred because she was very low.
Thank you for taking your time to read this long update. Keep on fighting! smile

9

(25 replies, posted in General Discussion)

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

10

(25 replies, posted in General Discussion)

Hi friends.  Today was supposed to be my mother's first day of 5fu but we had to bring her into the emergency room because her stomach was giving her pain and she almost fell while using the restroom.
The doctors drew out some fluid in her stomach to test for infection. No word yet, but we are hoping everything will be ok. My mother seems to feel at ease being here, so that is good. Will update you all later. Thanks.

11

(25 replies, posted in General Discussion)

Hello. I wanted to give you an update on my mother, and welcome any advice/comments! My mother was diagnosed with bile duct cancer in Feb of 2012. She started her treatment of chemo gemzar in the last week of march 2012 until the end of august 2012. She got her CT scan done in the last week Aug 2012. At her follow up with the Dr, he let us know that the gemzar looked to working at shrinking her tumor in the beginning 2 months, then it looks to not work at shrinking it towards the months to follow. He gave us 3 choices and recommended one of them.
The first is to combine gemzar with cisplan. He does not recommend this because my mother is not in her stronger state and he says it takes a lot out of the older patients, leaving them bedridden.

The second choice was to try 5FU, which he recommended. He did tell us that it is an older form, but they do show that it works it some patients to fight this cancer. Side affects were similar to gemzar, with added sore mouth and may cause diarrhea.

The third was to stop treatment all together. For my mother, this was not an option, so it wasn't discussed further! She is a fighter, for sure! smile

Back in June 2012, she took a trip to Korea to meet with a well known doctor who performed laser surgery to patients with bile duct cancer. After doing tests and scans and also looking her chart, he was unable to do the procedure on her because of her tumor location. Her tumor is located by where all her blood vessels are and all the doctors have said that it's in a bad spot...
After returning, she developed a bloated abdomen, and swollen feet. The Dr prescribed her a diuretic spiiralltic ( sorry for the wrong spelling) and it worked after 2 weeks. But after her meds were finished her salt levels went down, and they said that she will not be given that anymore.
After about two weeks ( which is now) she developed the same bloated abdomen and swollen feet. The dr prescribed lasix of 1/2 pill ( 10 mg). After about 3 days, we saw that she was looking worse, so I contacted the dr and he said to increase the dose to another 1/2 pill.  Saturday will be one week of taking the prescription, but no signs of her getting relief. Anyone know how long it usually take for it to work?
Also, tomorrow she is supposed to start her first treatment of 5FU, but she is not sure she can even make it there... Any advice is much appreciated. Thanks.

Hello. My mother has this problem of fluid buildup in her abdomen and her feet are very swollen. This is the 2nd time it's happened this bad. The first time she was prescribed the diuretic spirilactone ( sorry if it's spelled incorrectly ) and after finishing the bottle her fluid was gone. But, her salt level was very low, so they took her off those pills. After a week or two later, the fluid built up again and this time, she was prescribed lasix, and was told to take 1/2 a pill, which was 10mg. Since it was not working, the Dr said to take a full pill.
Saturday will be one week since she has been taking the meds, but I do not see any improvement in her.  How long usually does it take for these meds to start working?

13

(16 replies, posted in Introductions!)

Thank you, Gavin for the warm welcome and kind words. I am I am glad that I can get support from you and the amazing people here.

Hi, Audrey.  I hope your husband is doing well! My mother will get her scans In the next two weeks, so we will see what the best thing will be for her. I'm so thankful that you told me about dr fong and the oncologist. Speaking with my family, I think they feel good with the oncologist we have now. He is very knowledgeable, and does answers our questions. I will keep the number down to have with me! Thanks again, and God bless+

Peggy

14

(16 replies, posted in Introductions!)

Thank you Lainy. Im glad that I found this site for support. Everyone be strong!

15

(16 replies, posted in Introductions!)

Hello all! Just to update...

I called Sloan Kettering to see if we can schedule an appt for a second opinion. I was told by the representative that because mom is receiving chemotherapy, they cannot see her. After she is due an updated scan, then either by the doctors recommendation or by our choice, we can contact them to have her consult with a doctor at Sloan.

Is there a particular oncologist or doctor that you will recommend? I had asked if she can schedule with doctor yuman fong, and she told me that he is a surgeon, so if she was looking to consult for surgery then he would be the guy.
Hope I am doing all I can for her.
Thanks all!

16

(16 replies, posted in Introductions!)

Hi Lainey. Thank you for the suggestion. I have been looking into Sloan Kettering and will speak to my family about it.
I think my reasons of wanting another opinion started when my mother was getting her records to go to Korea, and we realized that we did not know her stage of cancer. Then the unwelcome feeling that I personally get from the treatment center...
I do think that my situation has made me a bit more sensitive. So positive thinking is a must!..

17

(16 replies, posted in Introductions!)

Hi marions. Thank you for the link, I will check them out after this post! I hope my mom is proud and happy. That's all I want from her. I just hope that she does not think she is a burden on us, because she is not...
The fever has subsided and we were told that it is what patients with this cancer get. For the fluid buildup, we were told that she would have to stay for further testing to find out. But if she chose to do that, then she cannot do the chemotherapy. So, we decided to continue the chemotherapy and take the diuretic to see if that helped with the fluid. She was given antibiotic ( levithrol), and has been taking that every day since July 13th, also. The antibiotic was given to prevent her from infection in her stents. We have not done another ct scan after we started her chemotherapy. From the last mention of her getting one, they said after her cycle she will do one. I will ask to make sure though!
We were recommended to go this hospital from a family friend who is a doctor. She wanted us to see the head doctor/ surgeon of liver transplant, and he then referred us to the head GI doctor( for ERCP) and head GI oncologist. Sometimes I feel overwhelmed going to the oncologist. I am not one of those ppl who know what to ask, and my mother is the same way. So sometimes, I feel like if we don't ask something, we just won't be told anything.... And the treatment center, it's not family friendly. There was an incident I had with a male RN, because he did not want to let my dad sit on a chair...
I will ask my mother if she will like to get a 2nd opinion from another hospital. I just don't want her to feel weak, or feel that we do not trust the doctors. That is what the doctors in Korea said to her. To not think of anything, but to trust her doctor who is giving the treatment.
It's hard to see my mom like this because she was always active and never wanted to stay home. Now, her life is just at home. This past Sunday, her friends from church came by to chat and to pray. I know that she had a great time, and I'm so happy they came!

18

(16 replies, posted in Introductions!)

I forgot to mention that she is taking diuretics for the fluid in her stomach. It has gone down a lot and has been 2 weeks. Also, she is stage 2. I do believe there is a letter next to the stage, but do not have it on me at this time. I will update that later.

19

(16 replies, posted in Introductions!)

Hello, I am new to this board, and glad to of found it. My mother is 62 yrs old, and was officially diagnosed with bile duct cancer in Feb 2012. She had symptoms of jaundice on the 2nd week of Jan 2012. After going to the emergency room, to a nearby hospital, and staying there for 3 weeks, with no diagnosis, we decided to move her to a bigger hospital in the city. We live in staten island, ny and are now going to mount Sinai for her treatment.

She was not a candidate for liver transplant because of her getting a biopsy on that area. We were told by the head of the liver transplant dept that the area where her biopsy was done, made her ineligible. She also cannot get surgery due to the tumor location being near major blood vessels.

The move to the bigger hospital helped because she was able to get her stents placed, where as the hospital in staten island had no GI's who wanted to perform it on her. I think because they were not experienced with this case.

She's had her first stents placed in March 2012, and went great. She then started her chemotherapy (gemzar) in April, and was doing well.
Then in May, she started to catch fevers and noticed that her urine was getting dark again. After doing blood work, they said that she will have to change her stents, because one of them got clogged. Her 2nd time around wasn't easy breezy. She still had fevers, and also got fluid buildup in her stomach. After a few weeks, she got better but the fluid did not go down.
She took a trip down to Korea, to see if she can get a laser treatment on the cancer. The doctors advised her that she cannot of the tumor location on her major blood vessels.
She is now back home, continuing her chemotherapy at a lower dose. The dose that she was getting was too strong and her platelets were very low.

My dad, sister and I are her care takers. I can speak for myself that in the beginning I was very upset, and depressed. I did not know how to handle all this. My mother is battling her 3rd cancer, and I just feel insecure not knowing what to expect.
These days, I am trying to be strong her and be there for her. Are there any ways to help with her platelets?
Thank you all for reading. Good luck to you and your loved ones. smile