Topic: Update on my mother

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.

Re: Update on my mother

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on my mother

Jujubear I can't offer any sage advise as Teddy never had chemo. I do want to say how much I admire your Mother  for her strength and attitude. I know others will tap in here and lend some light to your questions. I know you will keep us posted as well.

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: Update on my mother

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

Re: Update on my mother

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.

Re: Update on my mother

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

Re: Update on my mother

Lauren....please keep us posted, we care.
Tons of good wishes are heading your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on my mother

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

Re: Update on my mother

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

Re: Update on my mother

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?

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: Update on my mother

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!

Re: Update on my mother

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.

Re: Update on my mother

Dear Jujubear, I am sorry to hear about your Mom being in the Hospital again. I know it is so hard to see her suffer like this. I guess the big decision will be made with the Doctor tomorrow. Just a suggestion but if Mom still talks Chemo, you might want to ask, in front of her, how much time the ONC feels it will buy her. That could help all of you decide which way to go. When Teddy heard that the chemo would only buy him a month he opted for quality over quantity. We await your post tomorrow. We are all with you!

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: Update on my mother

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

Re: Update on my mother

Hi,
I am a patient of this cancer and the final decision of continuing to treat or not to be  treated  should be from you MOM only.
Then said, if I may , based on the messages that you had given to us; if your mom wants to be treated and continues the treatment; besides taking care the ascites and hypotension and balancing the electrolytes; Oral 5 FU ( Xeloda ) which mentioned in one of your messages(dated 9/12) may be the choice for your mom if your oncologist who suggested it  before agrees, It is by mouth, ease to use and side effects are minimum.It can be taken at home and fullfill your mom's fighting spirit. I am still taking them twice a day for  11 months now.
"Quality of life", if she chooses that over the "quantity of life" ; use Xeloda in palliative care is also acceptable too; you can stop the Xeloda anytime .

There are a lot of improvement in the Hospice care industry . they provide a lot of comfort and ease the suffering for both the patient and the caregiver. Ask the discharge planner nurses for choosing the best one for your mom if this is her wish.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Update on my mother

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on my mother

Hi,
I will be praying for your family tomorrow.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Update on my mother

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!

Re: Update on my mother

Jujubear, I am sorry to hear all the not so good stuff  but at least it is all out in the open now. It will be easier to proceed in any way that is chosen as the decisions are now made and you have a direction. I think the team meeting was a great thing to do. I sure hope your Mom starts feeling better like right now! We are all here for you. Be strong!

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: Update on my mother

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.

Re: Update on my mother

Dear Julia, I just sent you an email.

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: Update on my mother

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

23 (edited by Jujubear Sat, 06 Oct 2012 07:43:20)

Re: Update on my mother

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.

Re: Update on my mother

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

Re: Update on my mother

Dear Julia, I am so very sorry about your Mother, she was a very courageous woman and you willl see that her love is all around you all the time. My most sincere thoughts and loving prayers go out to you and your family.

God looked around his garden and he found an empty place,
He then looked down upon this earth and saw Mom's tired face.
He put his arms around her and lifted her to rest.
God's Garden must be beautiful, He always takes the best.
He knew that she was suffering, He knew she was in pain.
He knew that she would never, get well on earth again.
He saw the road was getting rough and the hills were hard to climb,
So he closed her weary eyelids and whispered "PEACE BE THINE".
It broke your hearts to lose her, but she didn't go alone,
For parts of you went with her the day God called her home.

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.